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Elon Musk Reveals He Has Asperger’s On Saturday Night Live

May 10, 2021

Tech entrepreneur Elon Musk has revealed he has Asperger’s syndrome while appearing on the US comedy sketch series Saturday Night Live (SNL).

The 49-year-old told viewers he was “the first person with Asperger’s” to host the long-running programme – to loud cheers from the audience.

People with Asperger’s interpret the environment around them differently to other people.

It is thought to be the first time Mr Musk has spoken about his condition.

The tech boss was guest hosting the sketch show – a coveted role that has been filled by an array of celebrities since SNL’s inception in the 1970s. These include Adele, Chris Rock, Ringo Starr, and Will Ferrell.

“I don’t always have a lot of intonation or variation in how I speak… which I’m told makes for great comedy,” he joked in his opening monologue. “I’m actually making history tonight as the first person with Asperger’s to host SNL.”

His comment prompted a round of applause from the studio audience.

Some people on social media, however, questioned his claim. They pointed out that the comedian Dan Aykroyd, who has spoken publicly about his experience with Tourette’s and Asperger’s syndrome, has previously hosted SNL.

Mr Musk, who has more than 53 million followers on Twitter, also joked about his use of social media. He has faced criticism and even legal threats over his tweets in the past.

“Look, I know I sometimes say or post strange things, but that’s just how my brain works,” he said.

“To anyone who’s been offended, I just want to say I reinvented electric cars, and I’m sending people to Mars in a rocket ship. Did you think I was also going to be a chill, normal dude?”

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What is Asperger’s syndrome?

  • Asperger’s syndrome is a lifelong disability which affects people in many different ways
  • Some may choose to keep using the term, while others may prefer to refer to themselves as autistic or on the autistic spectrum
  • Those with the syndrome may have difficulties interpreting verbal and non-verbal language, and may need more time to process information
  • They may also have trouble expressing their feelings in a conventional way. But they can be more empathetic or emotionally aware than non-autistic people
  • Many people with Asperger’s syndrome have intense and highly focused interests – some channelling them towards a successful career

Source: Autism.org.uk

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The billionaire also joked about his son’s unusual name – he and the singer Grimes announced the birth of their first child, X Æ A-12 Musk, last year. “It’s pronounced cat running across keyboard,” Mr Musk said.

Later in the programme, the SpaceX CEO spoke about the cryptocurrency Dogecoin.

The currency was created in 2013 by a pair of software workers, and earlier this year it jumped in value by 50% after Mr Musk dubbed it “the people’s crypto”.

It uses a Shiba Inu dog as its mascot and is based on a meme featuring the animal.

Mr Musk described the currency as “an unstoppable vehicle that’s going to take over the world” – but later said it was a “hustle” which prompted an almost immediate fall in value.

With no intrinsic value like gold or land, and no ability to generate an income, cryptocurrencies are extremely volatile and can crash as fast as they rise. This makes them hard to value and makes their prices susceptible to tips from backers such as Mr Musk.

NBC, which airs SNL, said the episode was streamed live on YouTube to more than 100 countries.

Disability And Domestic Abuse: ‘No-One Knows What Is Happening Behind Those Walls’

May 10, 2021

As cases of domestic abuse rise during lockdown, people are forced to spend more time with their abusers. As Sara Cincurova explores, disabled victims can face particular challenges.

“When you are disabled and live with your abuser, you are scared to talk,” says Ebere, a disabled survivor who was abused for years. “Particularly if you are trapped with him at home, or reliant on his money or care.”

Ebere, not her real name, has faced abuse throughout her life.

Born in Nigeria, she contracted polio as a baby and became a wheelchair-user. Her parents considered her disabilities a “curse” and physically and mentally abused her.

“I was treated like nothing. I was beaten up and threatened, unlike my siblings, without disability, who were treated with respect.”

Aged seven, Ebere was sexually assaulted by a family member. But when she tried to report it “my parents told me they would kill me if I spoke about it”. She felt “defenceless”.

‘I thought he was a gentleman’

According to UNICEF, disabled children are four times more likely to experience abuse and three times more likely to experience sexual violence compared to their non-disabled peers.

Eventually, Ebere fled to the UK on a student visa to study social care. “I presumed that I’d escaped abuse forever because I had fled my family,” she says, but it wasn’t to be.

She soon met a man and started a relationship.

“I thought he was a gentleman, a prince charming. But he turned out to be a perpetrator and a gambler. He became controlling and started raping me.

“Experiencing abuse for the second time affected me so much,” she says. “No-one knows what is happening behind those walls. I didn’t want to live anymore.”

Ebere didn’t know how to escape until a friend put a small phone in her incontinence pad so her ex-partner wouldn’t find it. It enabled her to call the police, and her partner was arrested.

But once she was free, she found it difficult to find wheelchair-accessible accommodation. Many refuges had steps into the building or rooms and doorways could be too narrow for her wheelchair. She also struggled to find places which had the resources to support her mental health needs.

“I stayed in hostels, hotels and refuges, but I wasn’t happy. I didn’t feel like there was inclusivity,” she says.

‘I experienced hell’

Slowly, over five years, Ebere rebuilt her life and now has her own home.

“I tell my story because I experienced hell and I don’t want anyone to go through what I had to go through.”

Lauren Avery, from Minority Rights Group International, which protects the rights of minorities says disabled women who have another intersecting identity, such as being a refugee, can face double discrimination.

“Firstly, they face a higher likelihood of experiencing violence. Secondly, they face barriers in reporting violence and accessing services.”

Avery says reports from around the world show violence against disabled women has intensified during lockdown.

Although no figures have yet been compiled, Women’s Aid said, pre-pandemic, disabled women were three times more likely to experience domestic abuse and more likely to experience multiple forms of abuse in their lifetime, compared to non-disabled women.

Avery says these figures need to be reflected in the support available.

“A one size fits all approach is clearly not working,” she says. “All clients should have the opportunity to say what their needs are as soon as they engage with domestic violence services. Then efforts can be made to make adjustments to meet these needs.”

Emma Dalmayne, an autistic woman from London, was 17 years old when she fled domestic abuse with her eight-month-old baby.

“I had been subjected to severe physical abuse, but I was also mentally abused. I wasn’t allowed to look out of the window or to use a phone. But I didn’t realise this was violence,” she says.

“Many autistic people might not realise that you don’t have to be hit to be abused.”

Emma too had to carefully consider how to escape.

“The night before I left, I was subjected to one of the worst beatings. I had made ‘too much noise’ while making my son a bottle in the kitchen and was kicked around on the floor like a football.”

The next morning, Emma went to the Post Office to collect her benefits – the only place she was allowed to go alone. “I hid a spare bottle and two nappies in the buggy, and left together with my son.”

On her way, she called a friend, who in turn called the police. Officers met them on the high street.

“I showed them my injuries, the bruising on my back and chest, and they took us to the local housing department,” Emma says.

When she arrived at the refuge, she sobbed with relief and fear. But she says her autism made the situation confusing and she would have liked more support and “clear instructions” about what to do next.

“The police should accompany you to the refuge, especially if you have difficulty navigating public transport,” she says. “Things should also be made more clear by refuge staff, such as directions to amenities in your new area.”

Emma agrees with Avery that support cannot be a one-size approach, especially if disability is involved.

During her violent relationship she was starved and her stomach had shrunk so she was unable to eat at the refuge. “But no-one asked me about it, and I was unable to communicate,” she says.

For Emma, offering up information without first being asked, is something she struggles with. As a result, she didn’t receive any therapy or treatment.

“Don’t assume that just because someone is verbal, they can communicate. When people look at me, they think ‘she’ll be fine, she can talk, she can explain what happened’. But I couldn’t.”

She says support workers should be trained to support disabled people.

“We might need help with budgeting and we should also see a dietician and a doctor when we are first brought in.

“We need to be put in a safe, quiet room, and be protected from further trauma, noise, and overwhelm,” she says.

Over-stimulation can lead to some autistic people experiencing meltdowns or shutting down.

When she left the refuge, Emma started to advocate for women who had faced domestic violence. She also became CEO of Autistic Inclusive Meets, an organisation focused on creating a community for autistic people.

“This is a matter dear to my heart. As an autistic person, it is so easy to get drawn into a situation where you blame yourself for the abuse. Providing help to disabled people is so important. Love shouldn’t hurt.”

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Emma’s tips for escaping abuse

  • Pack a bag with essentials like a change of clothes and ID. If a bag is too risky, put the clothing in a pile as “clean washing” and the documents in an envelope taped under a drawer
  • Keep a paper list of phone numbers of people you want to keep in contact with
  • Pick up any prescriptions or medication before leaving as you will be moved out of area.
  • Don’t tell anyone your plans, they may unintentionally slip up
  • If you call the police to help you leave, it may save time to head to the police station or meet them nearby
  • Wear sensible shoes
  • Take one treasured toy for your child – you will not be able to carry much – and any favourite photos – they may be destroyed once you leave

Deaf Awareness Week: Belfast Schoolboy Involved In BBC SignSong

May 10, 2021

A seven-year-old Belfast schoolboy has been involved in a BBC accessible music project for Deaf Awareness Week 2021.

Jensen Rea, who is deaf in one ear, was asked to be involved in the BBC SignSong after appearing in a BBC News NI video in January.

The Dundonald Primary School pupil helps teach British sign language (BSL), often dressed in elaborate costumes, to other children on YouTube.

The BBC music project, which was recorded remotely over lockdown, involves almost 100 people signing to Sing, a song by Gary Barlow and Andrew Lloyd-Webber.

The video was made in partnership with BBC Ability, Children in Need, the BBC’s Philharmonic Orchestra, BBC Singers and people from across the UK.

You can watch the full version of the BSL SignSong music video here.

Grenfell Landlord ‘Did Not Create Escape Plans For Disabled Residents’

May 7, 2021

The Grenfell Tower landlord did not create escape plans for disabled residents and instead relied on telling people to “stay put” despite recent fires in two of its other towers requiring evacuations, the inquiry into the 2017 disaster has heard.

Teresa Brown, the director of housing at the Kensington and Chelsea Tenant Management Organisation (TMP) from 2014 to 2018, was close to tears when she admitted that the landlord had not considered personal evacuation plans to get the most vulnerable people out.

The “stay put” policy in place at Grenfell Tower has already been identified by the inquiry as increasing the death toll. Fifteen of the 37 residents classed as vulnerable in the block were among the 72 killed.

Brown was questioned about fires in 2015 and 2016 at Adair Tower, a Royal Borough of Kensington and Chelsea council block, and Shepherds Court, in nearby Hammersmith and Fulham, which both required evacuations. Counsel to the inquiry, Andrew Kinnear QC, asked if they prompted her to consider the need for evacuation plans for vulnerable residents elsewhere.

“I’m afraid it didn’t because in my experience the fire brigade arrived and they made the decision to move from stay put to evacuation and it worked,” she said.

Brown said the landlord was following national guidance published by the Local Government Association that said “stay put works”.

“It is easy to look back in hindsight but we were operating according to that guidance in a way that other organisations across the country were,” she said.

Lawyers for the bereaved and survivors have described the fire as “a landmark act of discrimination against disabled and vulnerable people”.

Although 52 of the 120 flats had disabled occupants, a TMO document on the night of the fire only listed 10 disabled residents.

Hisam Choucair, whose mother, Sirria, used a stick and was among six of his family members to die, has told the public inquiry he was “shocked that there does not appear to have been any consideration of my mother’s needs” when it housed her on the 22nd floor.

Mahboubeh Jamalvatan, a disabled mother of two who lived on the third floor, said she had had to bump down the stairs on her bottom to escape.

Kinnear asked if Brown’s team was aware it could refer residents for evaluation of a personal evacuation plan. She said no, adding “because of our stay put policy – we weren’t expecting to evacuate”.

She said the London fire brigade did not raise the need for the evacuation plans at Grenfell, adding: “If they had I would have done it.”

The inquiry saw an internal document about the landlord’s “vulnerability policy” which described the process of drawing up personal emergency evacuation plans as “mainly ad hoc and self-nominated”.

Brown said they did not publicise the fact that residents could ask for a plan. The inquiry continues on Monday.

LETTER TO EDITOR: For Mental Health Awareness week, Revitalise share top tips for disabled people to keep their mental health in check 

May 7, 2021

 

Dear Editor,

 

Prioritising your mental health is important whatever your situation, but when you are living with a disability, it’s essential. Post pandemic, many people may be feeling heightened levels of anxiety – the fear of coronavirus and the consequent isolation has meant our mental health has taken a knock. That’s why for this year’s Mental Health Awareness Week (10th – 16th May), Revitalise would like to share with your readers some of the best ways disabled people can look after their mental health.

 

Keep Active – Exercise is great for the mind, getting yourself moving triggers an endorphin rush to the brain that is almost guaranteed to make you feel happier. We’re not suggesting you run a marathon around your living room, but stretching in the garden or heading outside for some fresh air will do wonders.

 

Stay Social – As the rest of the world opens back up post-lockdown, many vulnerable people are continuing to isolate. Whilst you might not be able to see friends and family in person, one good thing about 2021 is technology means you can still see them virtually. Make sure to schedule plenty of Zoom catch ups or what about a game of virtual Scrabble with a friend?

Get Creative – Whether it’s reading, writing, playing music, painting or dancing, always celebrate your creativity! Perhaps you’ve always wanted to learn a new skill, or maybe there’s an old passion you’ve let slip – now is the time to focus on it. The arts industry has really suffered over the course of the pandemic, but we’re sure it will bounce back bigger and better than ever.

Take a Break – This might be easier said than done, especially if you have young children or are a family carer but taking some time to rest and refresh is so important – not only for your sake, but for the sake of your loved ones. A hot bath and 20 minutes to yourself will do wonders, and a good book is a great way of escaping reality for half an hour or so too!

 

Make Friends – If you’re feeling the strain, why not take a well-deserved break with Revitalise and let us help ease the pressure. Our staff and fellow guests are a fantastic and friendly bunch, and by holidaying with us you’ll become part of a community of likeminded people who make you feel at home and able to be completely yourself. Many of our guests return time and time again to reunite with old friends (be that fellow guests, team members or volunteers) and always have fun making new ones along the way too.

Revitalise Sandpipers in Southport is offering discounted rates until the 28th June and can provide accessible transport across the country. So, anyone who feels they could benefit from our support, need only ask.

 

 

Devon Prosser, Revitalise
www.revitalise.org.uk  

 

6th May 2021

Prioritising your mental health is important whatever your situation, but when you are living with a disability, it’s essential. Post pandemic, many people may be feeling heightened levels of anxiety – the fear of coronavirus and the consequent isolation has meant our mental health has taken a knock. That’s why for this year’s Mental Health Awareness Week (10th – 16th May), Revitalise would like to share with your readers some of the best ways disabled people can look after their mental health.

Keep Active – Exercise is great for the mind, getting yourself moving triggers an endorphin rush to the brain that is almost guaranteed to make you feel happier. We’re not suggesting you run a marathon around your living room, but stretching in the garden or heading outside for some fresh air will do wonders.

Stay Social – As the rest of the world opens back up post-lockdown, many vulnerable people are continuing to isolate. Whilst you might not be able to see friends and family in person, one good thing about 2021 is technology means you can still see them virtually. Make sure to schedule plenty of Zoom catch ups or what about a game of virtual Scrabble with a friend?

Get Creative – Whether it’s reading, writing, playing music, painting or dancing, always celebrate your creativity! Perhaps you’ve always wanted to learn a new skill, or maybe there’s an old passion you’ve let slip – now is the time to focus on it. The arts industry has really suffered over the course of the pandemic, but we’re sure it will bounce back bigger and better than ever.

Take a Break – This might be easier said than done, especially if you have young children or are a family carer but taking some time to rest and refresh is so important – not only for your sake, but for the sake of your loved ones. A hot bath and 20 minutes to yourself will do wonders, and a good book is a great way of escaping reality for half an hour or so too!

Make Friends – If you’re feeling the strain, why not take a well-deserved break with Revitalise and let us help ease the pressure. Our staff and fellow guests are a fantastic and friendly bunch, and by holidaying with us you’ll become part of a community of likeminded people who make you feel at home and able to be completely yourself. Many of our guests return time and time again to reunite with old friends (be that fellow guests, team members or volunteers) and always have fun making new ones along the way too.

Revitalise Sandpipers in Southport is offering discounted rates until the 28th June and can provide accessible transport across the country. So, anyone who feels they could benefit from our support, need only ask.

Devon Prosser, Revitalise
www.revitalise.org.uk  

Parents Of Disabled Child Win Fight Against UK Hotel Quarantine

May 6, 2021

A severely disabled child who was forced to go into hotel quarantine after returning from a “red list” country has been allowed to return home to complete their period of self-isolation after a legal challenge.

Before entering the UK, the child’s parents had applied for an exemption on medical grounds, providing evidence of their child’s severe and complex needs, but, having received no decision, they had to enter hotel quarantine on arrival. Their solicitors, Bindmans LLP, said the application was then refused without reasoning.

They made an urgent application to the high court for an order permitting the family to return home to complete the quarantine. They provided further evidence from the child’s treating psychologist of why their particular severe needs could not be met in hotel quarantine and how it would probably lead to a severe deterioration in their condition. After seven days stuck in hotel quarantine, the family won their case.Advertisementhttps://a2a64f310b30236a30dc37b7e1a6dca6.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

Theodora Middleton, a solicitor in Bindmans’ public law team, said: “We are pleased that our client has now been permitted to return home. However, it is deeply concerning that highly vulnerable individuals such as our client are being subjected to the hotel quarantine system with little apparent consideration of how it will affect them. Our client and our client’s parents have endured unacceptable suffering, and potentially lasting damage, during the period that they were required to remain at the hotel, and recently updated exemption guidelines set a bar for eligibility for exemption that goes beyond the law.”

She urged the health secretary, Matt Hancock, to “ensure that his newly created and draconian powers to curtail liberty are being exercised with utmost care and scrutiny”.

Under emergency coronavirus legislation, on arrival, passengers entering the UK from “red list” countries are transferred by coach to a hotel where they are required to remain for at least 10 days. They are allowed out of their rooms in “very limited circumstances”, including exercise if granted permission by security guards enforcing the quarantine, with windows reportedly sealed shut.

As well as medical grounds, other exemptions include for people arriving to attend boarding school and representatives of a foreign country.

Bindmans made an application on behalf of its client over the weekend. It said the health secretary was given time to obtain independent medical evidence but did not do so and eventually conceded 15 minutes before a further hearing and three days after being presented with medical evidence form the claimant.

The child’s barrister, Adam Wagner, tweeted: “The system of exemptions for medical need is helpful but only if it is applied reasonably and not, as appears here, raising the bar so high that it is unreachable.”

Down’s Syndrome: Abortion Case Heads To High Court

May 6, 2021

Campaigners are set to have a review of abortion law relating to Down’s syndrome heard at the High Court.

Heidi Carter, of Coventry, and Máire Lea-Wilson from Brentford, west London, are challenging the government over a clause in the current law which allows abortion for up to birth for a foetus with Down’s syndrome.

Mrs Carter, 25, who has the condition, said the current law is “not fair”.

The case is due to be heard on 6 and 7 July.

Currently, there is a 24-week time limit for abortion, unless “there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped” .

Mrs Carter, who campaigns under her given name of Crowter, previously wrote to Health Secretary Matt Hancock saying all non-fatal disabilities should be subject to the same standard 24-week limit.

“A baby without Down’s syndrome can be aborted up to 24 weeks, but a baby like me and James can be aborted to birth,” Mrs Carter said. “It’s downright discrimination.”

“People shouldn’t be treated differently because of their disabilities.

“The reason it’s important to me and James is because we’re someone who has Down’s syndrome and we want to show the world we have a good quality of life.”

Mrs Lea-Wilson, 32, said she was placed under pressure to have an abortion when a 34-week scan revealed her son had Down’s syndrome.

“I have two sons that I love and value equally, but the law does not value them equally,” she said.

“My motivation for taking this joint legal action with Heidi has always been simple. As a mother, I will do all that I can to ensure the fair and equitable treatment of my son, Aidan.”

Mrs Lea-Wilson said the case is “not about the rights or wrongs of abortion” but about “removing a specific instance of inequality of the law.”

Domestic Abuse And Disability: Part One

May 5, 2021

Emma Dalmayne was just 17-years-old when she fled her abusive partner with her baby. Emma, who is autistic, has experienced violence at the hands of two ex-partners and has lived in a women’s refuge. Saliha Rashid faced honour-based violence from her family. As a blind woman she thought they were being protective, until she went to university and realised their behaviour was abuse. It took her three attempts to escape.

According to the statistics, disabled people are three times more likely to experience domestic abuse – but why is this?

Emma, Saliha and Sara Cincurova, a journalist and former domestic abuse support worker, tell their stories and discuss what needs to be done to improve the situation.

Presented by Keiligh Baker.

If you, or someone you know, have been affected by domestic abuse or violence, the organisations listed on the links below may be able to help. If you are in immediate danger, you should dial 999.

Visit the BBC Action Line page for Information and Support on Domestic Abuse or the BBC Action Line page for honour violence and forced marriage.

Subscribe with BBC Sounds and say to your smart speaker “Ask the BBC for Ouch”

 

Legal Challenge To Failure To Give £20 Uplift To ESA Claimants

May 5, 2021

With many thanks to Benefits And Work.

 

A High Court challenge has been mounted against the failure to give a £20 uplift to claimants of legacy benefits, such as employment support allowance (ESA), in spite of the payment being given to universal credit (UC) claimants. Success could lead to payments of over £1,000 for almost two million ESA claimants.

At the start of the pandemic, the chancellor announced a £20 increase in the standard rate of UC to help claimants cope with the additional costs of the pandemic. This could include such things as face masks, hand sanitiser, home delivery charges and increased utility bills because of being at home continually.

However, claimants on exactly equivalent ‘legacy benefits’ such as ESA were not given the uplift because the DWP claimed that its IT system could not cope with the change.

The case is being brought by two ESA claimants in the support group.

They are arguing that the failure to treat them in the same way as UC claimants is discriminatory and unjustified.

There have been many objections to the discriminatory way the uplift has been applied, including by the chair of the House of Commons Work and Pensions Committee who said:

“It’s simply not right for people to miss out on support just because they happen, through no fault of their own, to be claiming the ‘wrong’ kind of benefit.”

The claimants are being represented by Osborne’s solicitors. You can read the full story on their website.

Conditions DWP Say Most Likely To Get PIP Back Payment

May 4, 2021

With many thanks to Benefits And Work.

The DWP document ‘Equality Analysis PIP assessment criteria’ lists over 20 conditions most likely to lead to claimants being eligible for an award of PIP arrears. It gives an insight into who the DWP is likely to be looking at when considering arrears under the LEAP review.

 

The original estimate by the DWP that 160,000 claimants would be entitled to arrears was based on claimants who scored four points for mobility descriptor 1b – Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant – before the MH judgement and who also had one of the conditions listed below:

  • Agoraphobia
  • Alcohol misuse
  • Anxiety and depressive disorders (mixed)
  • Anxiety disorders
  • Autism
  • Bipolar affective disorder (Hypomania / Mania)
  • Cognitive disorders
  • Dementia
  • Depressive disorder
  • Drug misuse
  • Learning disability
  • Mood disorders
  • Obsessive compulsive disorder (OCD
  • Panic disorder
  • Personality disorder
  • Phobias
  • Post-traumatic stress disorder (PTSD)
  • Psychotic disorders
  • Schizoaffective disorder
  • Schizophrenia
  • Stress reaction disorders

It should be stressed that this was just the DWP’s prediction of who is most likely to be eligible. Just because your condition is not listed here, that does not mean that you are not entitled to a back payment.

Nor, if your condition is listed here does it mean that you are going to get an award. It is clear that the DWP has chosen to make very few awards indeed. At the moment, rather than the over 160,000 awards originally estimated, the DWP is on course to make around 7,000.

However, Benefits and Work is currently looking into ways the LEAP review results can be challenged and we hope to have more information for readers in the coming weeks.

You can download a copy of Equality Analysis PIP Assessment Criteria’ 

Carers Can Help Vulnerable Clients Visit Sex Workers

May 4, 2021

A senior judge has ruled it is lawful for carers in specific circumstances to help clients find and pay for sex.

The ruling found it would be wrong to stop them helping a 27-year-old man with mental disabilities fulfilling a natural desire.

The landmark ruling could have major implications for others.

Ministers have been given permission to appeal the judgment because of its implications for policies on combating prostitution.

The Court of Protection, which made the ruling, is dedicated to taking decisions for people who lack the mental capacity to live independent and safe lives.

The young man at the centre of the case, known only as C, is fit and healthy but lives with carers because he needs daily help with many parts of his life.

He has autism and a genetic disorder – but Mr Justice Hayden said that after speaking to C, he found that he was happy and well-supported.

The court heard that C knew he would probably never find a girlfriend but he nevertheless wanted to experience sex – and so he had asked his carers if they could find him a sex worker who would be paid for their services.

That request led to a hearing at the Court of Protection because it was not clear to C’s carers whether they would act illegally if they agreed to help.

Under England’s complex prostitution laws, paying for sex is a not a crime – but actions that encourage its arrangement are.

C’s carers also feared they could be jailed for up to 10 years for inciting a vulnerable person into a sexual relationship.

In a landmark judgment, Mr Justice Hayden ruled that the aim of sexual offences laws was to prevent abuse, rather than stand in the way of C’s request.

If the law banned the carers from helping C, that would be discrimination because anyone else without his condition could lawfully pay for sex.

“It is important to recognise that those with mental health disorders have, in the past, effectively been prevented, by the law, from engaging in sexual relations,” said the judge.

“It is no longer the objective of the law to prevent people with mental disorders from having sexual relationships, rather it is to criminalise the exploitation and abuse of such adults by those with whom they are in a relationship of trust.”

The judge said that a second legal question – whether a paid sexual relationship would genuinely be in C’s best interests – could only be considered once a specific plan had been devised.

Lawyers for Justice Secretary Robert Buckland are now appealing the ruling. They had argued that granting permission to the carers to help C would undermine attempts to reduce prostitution by using the state’s care services to facilitate it.

But Mr Justice Hayden said the government’s objective was “logically unsustainable”.

“While it is entirely understandable that [secretary of state] would not wish to be seen to act in a way which might be perceived as encouraging prostitution, the fact remains that the act is legal.

“The secretary of state may not obstruct those who wish to participate in lawful transactions nor, logically, those who wish to help them be they carers or otherwise.”

ECB and Lord’s Taverners partnership to make disability cricket accessible in every county

April 30, 2021

A press release:

A game changing £2m partnership will make life-changing disability cricket accessible in every county in England and Wales as part of the biggest investment into a disability cricket programme.

Launched today (April 27) the landmark partnership between the Lord’s Taverners and the England and Wales Cricket Board (ECB) will see the Super 1s disability cricket programme launched in every county and help develop a more sustainable table cricket offer – increasing participation, inspiring social change, and empowering tens of thousands more young people to fulfil their potential and build life skills through the sport.

Lord’s Taverners President and former England Captain David Gower said: “This partnership is a true game-changer for the Taverners and disability cricket. This is the largest investment by a cricket board into a disability specific programme and to work with the ECB is an incredible honour. The charity’s work has proved life-changing for so many participants and we’re very excited about the opportunity to bring our work to young people in every county across the country.”

Super 1s is already positively impacting the lives of thousands of young people in 20 counties and Scotland – but this will increase to all 39 counties thanks to the collaboration between the UK’s leading youth disability sports charity and cricket’s governing body.

Nick Pryde, Director of Participation and Growth at ECB said: “We’re committed to making cricket as inclusive and diverse as possible and this partnership will be a big driving force towards that. Bringing Super 1s to every county really will change lives. It’s a fantastic way to increase accessibility and show that cricket can be a game for everyone.”

By the end of 2021, new programmes in Worcestershire, Northumberland, Devon, Wiltshire and an Eastern Counties project (Bedfordshire, Hertfordshire, Cambridgeshire) will have been launched with the aim of being active in every county by 2024.

Super 1s, a national Lord’s Taverners programme delivered in conjunction with county cricket boards, gives young people living with a disability the chance to play regular, competitive cricket and giving participants the chance to interact with their peers and enjoy the benefits of playing sport.

But the programme is more than just about playing cricket, it improves physical and mental well-being, gives a sense of belonging and allows participants to make friends and gain skills for life such as confidence and independence.

The partnership will also fund the further development of table cricket which is currently played in 357 schools by over 8,800 young people across the country. The game allows young people with more limiting disabilities the opportunity to engage in cricket, as well as develop a network of young leaders and schools who engage.

Table cricket is an adapted version of cricket played on a table tennis table. Alongside the enjoyment of playing the game and competing, table cricket develops teamwork and social skills among players, while helping with coordination and cognitive skills.

UK’s first digital hub for blind people featuring news, podcasts and the latest bestseller books now available on Alexa

April 29, 2021

A press release:

 

 

From today, blind and visually impaired people across the UK can access the RealSAM Smart Speaker (www.realsam.co.uk) via their Amazon Alexa device. With over 360,000 registered blind adults and children in the UK, the RealSAM digital hub provides visually impaired people with unparalleled access to information and entertainment – supporting their independence and everyday enjoyment.

RealSAM subscribers will benefit from an AI assistant, that guides people through its mass library of content in a way that surpasses the device itself. Subscribers will gain access to the dedicated hub for blind and visually impaired people, providing them with over 27,000 books, newspapers, podcasts, radio stations and content from Calibre Audio – a national charity that lends audiobooks to anyone who is print disabled.

Having launched last month on Google, this technology has received overwhelmingly positive feedback from within the disability community, including those who are unable to lift a book with conditions such as Muscular Dystrophy or being limbless. Furthermore, parents of disabled children have used the wide range of resources in an educational manner in a time of disruption.

Chloe Tear, a disability writer in the UK commented “It’s a great lifeline, especially when adjusting to assistive technology or wanting to get the latest information from sight loss charities. I love the navigation on RealSAM.

“Another great feature is the ability to give more than one command at once. Previously on smart speakers, you would have to ask one thing at a time. I believe this feature will allow visually impaired people to access information at a quicker speed. Not only is this great in general, it puts us more on par with reading speed. Therefore, if audio is your preferred method of accessing things, you’re on to a winner with RealSAM.”

The RealSAM Smart Speaker is clearly valued by such customers and this has culminated in winning at the Digital Book World Awards for Storytelling AI Developer of the Year by Project Voice. Having been recognised for being best best-in-class achievement from across the voice technology and conversational AI landscape, as well as beating the Amazon Alexa, puts RealSAM in a prime position to continue to deliver outstanding work within the remit of accessible technology.

The hub of content is accessed through a fully voice-controlled media skill that once subscribed to, utilises the latest AI technology to improve the independence of those living with visual impairments and sight loss. Activated in exactly the same way as all Alexa ‘skills’, the new platform subscription is available for £19.90 for 12 months’ access for new customers. This price reflects the constant innovation behind the technology as new content and partnership material are continuously being added to further enhance the user experience yet for now the price remains the same.

Sample phrases include:

‘Alexa, open RealSAM. Alexa, find books with title Little Women’.

‘Alexa, open RealSAM. Alexa list podcasts. Alexa, play TED Talks’.

‘Alexa, open RealSAM. Alexa, tell me about Henshaws’.

For more information, please visit www.realsam.co.uk

Claimants Left With Nothing When PIP Claims End Before Review

April 28, 2021

With many thanks to Benefits And Work.

 

Some PIP claimants are being left with no payments because their fixed-term award has come to an end before the DWP has made a decision about a new award, a government minister has admitted.

Justin Tomlinson, minister for disabled people, told MPs in a written answer that: “some claimants on fixed term awards without a review date are now falling out of payment before we have been able to make a decision on renewal claims they have made. We are prioritising these cases to ensure we can make a decision as quickly as possible.”

The minister did not give any indication of how many claimants are affected or how soon ‘as quickly as possible’ is likely to be.

You can read the minister’s full answer here.

SMART CENTRAL HEATING CONTROL APPS TESTED FOR ACCESSIBILITY BY DISABLED PANEL

April 28, 2021

 A press release:

Usability testing by older and disabled people highlights that the majority of apps tested could do more to enable customisation which supports customers with visual or cognitive impairments. 

RiDC (The Research Institute for Disabled Consumers), with funding from the Energy Industry Voluntary Redress Scheme has published a consumer guide into the ease-of-use and money-saving features of six popular heating control apps: Hive app, Honeywell home app, Honeywell Total Connect Comfort app, Netamo’s energy app, Nest app and Tado app.   

The research included usability testing by ten disabled and older members of RiDC’s consumer panel  who were already smart home central heating app users. A concurrent online survey with 633 respondents, also showed that one in four disabled people have difficulties using apps in general, with almost half of these (44%) going on to uninstall or stop using the app because of this.    

During the usability testing, each smart home heating control app was tested for accessibility characteristics such as ease of download, ability to customise and responsivity. The team also looked at the app’s ability to save the user energy and money, with features like open-window detection and program modes.   

The guide gives an overall rating for accessibility and potential to save energy. It also recommendations of who the app might work well for, according to their disability or specific needs.  

The overall accessibility ratings are:  

  • Hive app (4.4/5)   
  • Nest app (3.7/5)  
  • Honeywell home app (3.4/5)  
  • Netamo’s energy app (3.4/5)  
  • Honeywell Total Connect Comfort app (3.3/5)  
  • Tado app (3.1/5)  

Gordon Mccullough, CEO at RiDC says:   

Smart-home technology is often championed as a way for disabled and older people to have greater independence at home, which is particularly true for the control of heating and energy use. What’s interesting here is the variation in how much the apps can be customised, which unfortunately means that customers may miss out on being able to use some of the features, including those that have the potential to save energy and money.”  

“Inevitably, customers will choose the product which best meets their needs, so we’d love to see other apps exploring how they can make sure their design caters for the different ways that their customers need to use it. Especially this year, where disabled and older people in the UK have been staying at home out of necessity.” 

There are 14 million disabled people in the UK, and an aging population means that an increased number of people are likely to become disabled in some way. Some physical conditions and old age make it harder for the body to control body temperature and stay warm when needed.   

Dr Wesley Scott, a participant in the user-testing has cerebral palsy and learning disabilities including dyslexia – therefore writing, counting and learning new concepts may prove difficult. He also experiences stress and anxiety. Being at home a lot and having to use more energy, he needs to keep track of how much it’s costing him to heat his flat. A confident smartphone user, his choice of energy provider depends a lot on the usability of their app.  Here he shares his experience:    

‘I would like it if (when filling in forms) I could speak my email address into it and other details. (Filling it in manually) is tricky because sometimes my hands get spasms and I end up pressing letters or words I don’t want to.’  

‘Too many colours make it confusing for me… and the contrast between the background and the writing isn’t very clear.’  

Linda has severe arthritis and asthma which means she means she needs more energy to keep her warm. She has dexterity issues with her hands due to the arthritis, wears glasses and is dyslexic. She says:    

“I think if you’re young and your brain is very active, you pick up things a lot easier. I can do it eventually but I do have to sit down and think what bit do I need to go to next because it doesn’t actually say ‘Now go to..’ If you change the room temperature for instance, if you’re not careful you’ll change the whole house temperature so it all gets quite complicated.” 

“Even now I have to stop and think – how do I change the temperature?”

Users also made suggestions on how the apps could improve accessibility and take up among disabled people.    

Each app was user-tested by RiDC’s researchers and members of the consumer panel in November 2020. Individual scores of ease-of-use features represent an indicative interpretation by RiDC of the feedback received from members of the consumer panel rather than scoring by consumer panel members themselves. 

Overall, the research found that the Hive app was the only one to perform well in all seven categories, its minimal user-interface and clearly displayed features making it easier to use for most impairment groups.   

A full review of each app, along with ratings for each feature are now available to view on the RiDC website.

DWP Admits LEAP Letter Was Untrue

April 27, 2021

With many thanks to Benefits And Work.

 

Benefits and Work has been provided with a copy of a letter from the DWP in which a decision maker admits that a review of the claimants PIP award had not been carried out, even though he had received a letter stating that it had.

The claimant received a LEAP letter last year stating that their claim had been looked at again in line with the decisions in the MH and RJ cases and that they were not entitled to any payment of arrears.

The claimant challenged this arguing that they were covered by the MH decision.

The DWP decision maker responded in writing, saying that:

‘Your request for the decision not to be awarded the mobility component to be looked at again when considered in the light of RJ/MH will require a reconsideration which was not carried out for this aspect of your claim.’

The DWP eventually lapsed the appeal by making an award of £12,000 of backdated enhanced PIP mobility component payments.

As in other cases we have seen, this claimant was fortunate enough to have knowledgeable support with their claim. How many other claimants who are entitled to similar substantial sums are missing out because they do not have the same support to challenge false and misleading statements by the DWP?

Over 42,000 Carers Hit With Overpayment Bills

April 27, 2021

With many thanks to Benefits And Work.

 

42,400 carers are being forced to repay benefits overpayments, even though very often these were due to failings by the DWP.

Justin Tomlinson, minister for disabled people, told MPs in a written answer that:

“As of 13th April 2021, 42,400 people were repaying Carer’s Allowance overpayments.

“The total original value of those debts was just over £138million; the total amount currently outstanding is £89million.

“The Department has a duty to recover overpaid benefits as quickly and efficiently as possible, but it is not intended that the recovery of an overpayment should cause any customer undue financial hardship.”

However, the National Audit Office found in 2019 that due to high staff turnover, the DWP had 104,000 reports of changes of circumstances in November 2019 in relation to carer’s allowance which it had failed to process. This inevitably led to large overpayments being run up.

Those same claimants are now being penalised for something that was not their fault.

The eagerness of the DWP to recover overpayments of carer’s allowance contrasts with its reluctance to pay out to claimants owed arrears of PIP under the LEAP review.

You can read Tomlinson’s full answer here.

Wolverhampton Taxi Driver Loses Licence For Refusing Guide Dog

April 27, 2021

A taxi driver who refused to pick up an assistance dog and abandoned his passenger has had his licence revoked.

Shamal Hussein Majid told the customer the dog could go in his boot but there would be an extra £10 cleaning fee, Wolverhampton City Council said.

He also claimed he was allergic but did not have exemption paperwork and left the “vulnerable” customer, who is registered blind, at the roadside.

Mr Majid lost his appeal at Black Country Magistrates’ Court on Friday.

The council said Mr Majid, from St Andrew’s House in Wolverhampton, refused to carry the customer with a guide dog from Molineux Stadium on 7 March last year.

‘Inexcusable’

He ended up abandoning the customer and drove away in his private hire vehicle, the authority said.

Under the 2010 Equality Act, a driver will have committed an offence if they refuse to carry a disabled person’s dog and allow it to remain with that person. It is also an offence if they make any additional charge for letting the dog remain with the owner.

Chris Howell, the council’s commercial regulation manager, said: “Leaving a vulnerable person at the side of the road is inexcusable and certainly not the high standard that we expect from our licensed drivers who all undergo disability awareness training to ensure they are aware of their legal obligation to carry assistance dogs at no additional charge.

“Where a driver has a medical condition that would prevent them from carrying assistance dogs, this must be independently verified through medical testing and an exemption certificate is issued.”

Mr Majid was also ordered ordered to pay £300 towards the council’s legal costs.

Hope For Anna: Campaigning Mum’s Battle With Tiktok

April 27, 2021

Shane Williams And Ben Kay Sign Up For Research Into Dementia Links With Sport

April 26, 2021

Former rugby stars Shane Williams and Ben Kay are to join Alan Shearer in lending their weight to the fight against dementia.

Wales’ record tryscorer Williams and World Cup-winning England lock Kay are among 50 elite ex-players to have signed up for the Alzheimer’s Society-funded PREVENT:RFC project, which forms part of the Sport United Against Dementia campaign.

In addition, former England football captain Shearer, who presented the BBC documentary, ‘Alan Shearer: Dementia, Football and Me’ which investigated the link between the game and brain injury, is one of those taking part in an informal pilot study.

Shearer said: “I’ve been following the sport and dementia conversation for years now – and there’s still more I want to learn about the science behind the stories in the news.

“I know the risk of dementia is something that worries many players, so work directed to understanding the earliest stage of dementia is incredibly important, and this study in rugby players will add to our understanding of that in sport.”

The risk of brain injury in footballers has been highlighted in recent years by the deaths of England 1966 World Cup winners Ray Wilson, Martin Peters, Nobby Stiles and Jack Charlton, who had all been living with dementia, and in particular former West Brom striker Jeff Astle, whose daughter Dawn has campaigned for action to address the issue.

Research has suggested that footballers are up to five times more likely to die from Alzheimer’s disease than the general public.

In rugby too, there has been mounting concern with former England hooker Steve Thompson and ex-Wales international Alix Popham among a group of ex-players exploring legal action for alleged negligence against the game’s authorities.

Kay said: “It was really important to me as a rugby player to take part in this study. There has been a lot of media coverage around this topic lately and as a result, I know lots of players are worried about their dementia risk.

“Hopefully, by doing this research now, we can get a better understanding of this issue and make a real difference for the future.”

Last December, former Wales forward Alix Popham and his wife Mel described the impact early onset dementia has had on their lives following his diagnosis

Forecasts suggest the number of people with dementia in the United Kingdom will rise to one million by 2025, and 700 volunteers are already involved in the UK and Ireland-wide PREVENT research project, under which they will be assessed via physical health checks, brain scans, memory assessments, lifestyle questionnaires and sample collections over a two-year period.

PREVENT:RFC, which is backed by an additional £250,000 from the Alzheimer’s Society, is one strand of the Sport United Against Dementia campaign, seeking to improve the lives of current and former players and fans and will be based in Edinburgh under the charge of principal investigator Professor Craig Ritchie, who will work alongside Professor Willie Stewart from the University of Glasgow.

Kay’s World Cup-winning team-mate Steve Thompson said last year that a lack of care for player welfare could be one of the reasons he can’t remember the playing in the final

Professor Stewart said: “It is vitally important we better understand the links between sports such as football and rugby and dementia, so we can better protect players from any risks they may face.

“Previous research led by our team at the University of Glasgow demonstrated the increased risk of neurodegenerative disease in former professional football players.

“I am delighted to be a part of this latest PREVENT study into professional rugby players, and the adjoining pilot looking at professional football players, so we can bring more insight to this important research area.”

Sound Of Metal Wins Two Oscars!

April 26, 2021

Sound Of Metal has won two of the six Oscars the film was nominated for.

They are sadly not the most high profile awards of the group but any win is still a win.

The film won the awards for Best Film Editing and, ironically considering it’s storyline of a deaf drummer, for Best Sound.

Same Difference sincerely congratulates the cast and crew and wishes then every success when the film is finally released in cinemas on May 17th.

In other disability related Oscar news, the award for Best Actor went to Sir Anthony Hopkins for playing a man living with dementia in The Father, which also won the award for Best Adapted Screenplay. Same Difference sincerely congratulates the whole cast and crew of The Father and wishes the film every success in cinemas.

‘Like Losing A Hand’: Musicians On The Crisis In Hearing Loss

April 26, 2021

The Bafta-winning film Sound of Metal dramatises every musician’s worst nightmare. Ruben Stone, played by Riz Ahmed – who is up for a best actor Oscar this weekend – is a metal drummer who loses his hearing, and the film depicts Ruben’s loss exactly as he hears it, where the world around him and the intense music he plays suddenly fade to a muted and distorted drone.

These scary and involving scenes have highlighted a crisis in hearing damage right across the music industry, be it through deafness or tinnitus (a constant ringing in the ears). In a report published last month by the British Tinnitus Association (BTA), over half of the 74 tinnitus-suffering musicians surveyed said they developed the condition due to noise exposure, but nearly a quarter said they never wore hearing protection.

In 2002, before Myles Kennedy went on to front the hugely successful US hard rock band Alter Bridge – their last two albums have gone Top 5 in the UK – he was diagnosed with tinnitus. Kennedy had been playing in bands since the mid-80s and working with high levels of sound in his home studio. After his diagnosis, he left the music business for 18 months.

“I thought my days were numbered as a musician,” Myles says. “I stopped playing live and went back to teaching guitar.” When Guns N’ Roses guitarist Slash asked Myles to audition for the supergroup that would become Velvet Revolver, he declined. “I was concerned about my hearing,” Myles says. “The fear that it could get worse was the thing for me: how bad is this gonna get?”

“For a musician, losing your hearing is like losing a hand,” says Steve Lukather of Toto, who developed tinnitus in 1986 and also suffers from hearing loss. Hearing aids mean that Steve can continue his career, but watching Sound of Metal hit close to home. “The movie disturbed me,” he says. “I know what it’s like to be all muffled up like that. It’s terrifying – and a very real problem.”

“Noise-induced hearing loss and tinnitus usually occur over a period of time, starting with temporary changes that may initially recover,” says BTA president Tony Kay. “This may become permanent if continued exposure to noise without adequate protection persists. If the noise is loud enough, permanent changes can occur after one exposure.”

For Amos Williams, bassist in metal band Tesseract, his tinnitus began as a teenager, while playing drums in bands and percussion in the school orchestra. “The severity of not having hearing protection was never expressed to me,” Amos says. “[The ringing] was almost expected when you’re playing or attending rock and metal shows. It got progressively worse – and now there’s no such thing as silence.”

“No one used to talk about wearing earplugs,” says Lisa Cope, who works for a record label and has hearing damage and tinnitus after years of tour managing. “I can’t hear anything under a certain decibel, and when I get stressed the tinnitus becomes like a chorus of crickets.”

Tinnitus can be debilitating, both physically and psychologically, and it’s usually in quiet moments that it screams the loudest: many sufferers say it’s worst when going to bed. “I can’t sleep without a podcast on,” says Dan Smith, bassist in extreme metal band Calligram. “When I listen to quieter music on headphones, I can hear my tinnitus over the music.”

For those who work in music, there is the additional worry that it could affect their livelihood. Singer-songwriter Rosalie Cunningham experienced mild distortion in her ears in the past, but after contracting Covid, her symptoms worsened. Now, the prospect of returning to live shows is a concern: “I’m terrified that something will happen on stage, and I won’t know what to do,” she says.

“I used to worry that people would think I couldn’t do my job,” says Eleanor Goodman, deputy editor of Metal Hammer magazine. “But when I started talking about it, I found out that tinnitus is very common in the music industry. Being open about it has been so much better.”

Hearing protection is key – even if you already have tinnitus. “People can think, I’ve done the damage, I’ll just carry on,” says Georgina Burns-O’Connell, lead author of the BTA report. “But that can do more damage.”

In 2016, Help Musicians started the Musicians Hearing Health Scheme in partnership with the Musicians’ Union, which gives musicians access to hearing assessments and moulded earplugs at a reduced cost. “Musicians should care as much for their hearing as they do for their instrument,” says James Ainscough, the charity’s chief executive. So far, the scheme has helped over 12,000 people.

There are also services that offer mental health support, such as Music Minds Matter, and the BTA recently established monthly support groups specifically for musicians. “While there isn’t a cure, there are ways to manage tinnitus, and to live well with it,” says Burns-O’Connell.

Those affected say there are techniques that have helped them – including wearing in-ear monitors and moulded earplugs, staying hydrated, avoiding stress, using podcasts and music as distraction, and support groups and therapy. “CBT put me on a positive path,” says Michael Daniels, a trumpet player, conductor and educator who works in a variety of styles from classical and choral to big band and jazz. “Mindfulness has also been very helpful for me: it’s a way of coming to terms with what’s going on.”

Around two years after his tinnitus diagnosis, Myles Kennedy joined Alter Bridge and went on to tour arenas around the world. Through techniques like meditation and the advanced technology of in-ear monitors, his condition no longer holds him back.

“The tinnitus forced me to take care of my hearing,” says Myles. “Twenty years from now, if we have this same discussion, I want to be able to hear everything you’re saying. I had to learn how to shut off that anxiety, to stop obsessing – it took a long time to get to that point. The in-ear monitors mean that I can continue doing what I love, without doing more damage. I’m so grateful – I can’t imagine a life not making music.”

SEND Coffee

April 26, 2021

A friend of Same Difference recently found and shared the following:

 

We hire and help people with special needs or Disabilities
into jobs in the coffee industry. As Coffee Roasters, we have access to a wide network of employers who are always looking for good staff.

Providing 1:1 Mentoring over 36 weeks, we offer a barista course like no other. We believe that our learners can’t just enter the job market at the bottom rung, but have to be equipped with skills to overcome the prejudice they’ll experience.

We are currently running our training program from 3 sites: Clarnico Club (Hackney Wick), Curators Coffee (Leadenhall Market) and Hidden (Camden).

Supporting Can Be Simple

There are multiple ways you can support us and our mission.

  • Buying ethically, from companies registered with Social Enterprises UK encourages people to think about the ethics of the companies they are supporting.
  • Buying coffee from anywhere stocking our beans directly supports our learners into employment, and provides a charity with the money they desperately need to support more beneficiaries. 100% of our profits go to our mentor charity.
  • Stocking our coffee at your business in any capacity promotes awareness for people with disabilities and neurodiversity, supporting the inclusivity of the industry as a whole. It also provides you with great coffee and customers with an ethical option.
  • Taking our learners on as staff after their course might provide you with a dream member of staff. With us backing them, they have the advantage of access to a team of extremely experienced mentors who continue their support long after the course ends.
  • Become a mentor site. This is the ultimate partnership, and comes with huge benefits to your business. We provide a full time dream member of staff, who will work in your shop fully paid by us, but will have a learner shadowing them and learning the job 4 days a week. This is something we usually only offer to people we have already partnered with as wholesale customers and meet our suitability criteria.

Bristol Man Says Sight Loss Means He Cannot Find A Job

April 23, 2021

A man who began losing his sight six years ago says he has struggled to find work despite applying for more than 100 jobs.

Brett Francis, from Kingswood, Bristol, left his last job in 2015 just before his eyesight began to deteriorate.

He says nobody wants to employ him now because of his disability.

The Royal National Institute of Blind People (RNIB) says employment chances for blind and partially-sighted people are a long-standing issue.

Mr Francis, 33, says he has not even been invited for an interview despite all of his job applications.

“I tick the box on the paperwork that says I’m disabled and then I hear nothing back,” he said.

“They [employers] are pretty vague. They just say ‘thank you for your time but you’ve not been successful’.”

Having applied for jobs in areas such as retail, sport, call handler centres and offices, he said he can only assume his vision is the reason.

“I don’t really know [why] but I’m putting it down to my eyesight,” Mr Francis said.

“There could be me and somebody who has no sight loss and I believe they would employ that person because there’s no issue that they need to cater for.”

“I’m not saying I could do any job, but there are a lot of roles I could do,” Mr Francis added.

“Obviously I need some extra help, I need some adaptations, but I’m willing to put the effort in.

“But to show what I’m capable of I need that chance and nobody is willing to put themselves out there to help me.”

Alice Archer, from Bristol-based RNIB, said Mr Francis’ situation was “unfortunately” typical and only one in four blind or partially-sighted people were in work, a statistic that has remained largely the same for 20 years.

“We speak to a lot of people who are in a similar situation to Brett where they’ve got lots of skills, they’ve got lots of experience and they’ve got lots of enthusiasm that they want to offer a workplace but they’re just not finding employers who are willing to give them a chance,” she said.

Able To Parent

April 22, 2021

Emily Yates and her partner Christopher ‘ CJ’ Johnston have been together four years. CJ really wants a baby but Emily – a wheelchair-user with Cerebral Palsy – has fears and barriers that she feels she needs to overcome.

Will she be able to carry a baby? What extra strain will her disability put on her and CJ’s relationship as parents? What impact will her disability have on their child as he or she grows up?

To help quell these concerns and make a final decision, the couple look around them for advice and inspiration. They meet Kelly, a powerchair-user and mum to two boys, who offers practical advice on handling trickier situations. Megan was raised by a paraplegic mother and gives a child’s perspective, while the artist Alison Lapper – arguably Britain’s highest-profile disabled parent – shares her story, including the astonishing level of vitriol she received during her pregnancy. In 2019, Alison’s son Parys tragically died of an accidental drug overdose. How will this experience colour Alison’s advice to Emily and CJ?

As they explore all this together, Emily increasingly realises that many of the barriers she faces are ones of perception rather than practicality.

Covid: Disabled Woman’s Family Hails Jo Whiley’s Vaccine Drive

April 22, 2021

A woman with learning disabilities and her family have spoken of their relief at being prioritised in the coronavirus vaccination programme.

Helen Illsley, who was born with brain damage, said she hoped to see her boyfriend, go shopping and go on holiday, after having the vaccination at a Nottingham clinic which has been tailored to put people with learning disabilities at ease.

The family praised DJ Jo Whiley, who campaigned for people with learning disabilities to be prioritised in the vaccine rollout.

Ms Illsley’s mum Sarah said: “We campaigned long and hard for learning disabled people to be prioritised and it was a great relief when Jo Whiley came on board and really swung the change.”

New Women’s Wheelchair Basketball League Can Be ‘Massive’ – Amy Conroy

April 22, 2021

Great Britain wheelchair basketball player Amy Conroy believes the new Women’s Premier League will be “massive” for the sport.

British Wheelchair Basketball says it will be “the first of its kind for women’s wheelchair basketball in the world, and the very first professional Para-sport league in the UK”.

Four teams will be involved in the first season, to start in December.

“I can’t wait to see where it will take our sport,” said Paralympian Conroy.

“It sends out a massive message and shows female sport is up and coming. I never thought something as big as this would happen during my career.

“Hopefully it will mean more fans, more visibility and more players with disabilities at both recreational and international level. The opportunities will be endless.”

As well as attracting the best domestic players, it is hoped the league, which will have teams based at Cardiff Metropolitan University, Loughborough University, University of East London and University of Worcester, will also attract some of the world’s top women players.

Players will not be paid directly by their respective clubs; instead, each franchise will offer different packages to athletes, including scholarships, accommodation and expenses support, and access to full-time professional support teams.

Great Britain’s women are currently ranked second in the world after winning silver at the 2018 World Championships in Germany and the 2019 Europeans.

They have qualified for the rescheduled Tokyo Games later this year where they will be chasing a first Paralympic medal after finishing fourth at Rio 2016.

At present, many elite male players, including most of the GB men’s squad, play professionally in countries including Spain, Italy and Germany, and while women can line up alongside them on mixed teams, British Wheelchair Basketball chief executive Lisa Pearce told BBC Sport she believes the new league’s all-female environment will be a big draw.

“The women’s league doesn’t exist anywhere in the world,” she said. “This is the first showcase for them to bring the sport to the rest of the world and there is a real passion behind women’s sport in the UK.”

“The GB women are number two in the world. We want to get them to number one and this is the best mechanism to do it.”

The Disabled Doctors Not Believed By Their Colleagues

April 22, 2021

People often feel nervous when they visit a doctor with some fearing their symptoms may not be believed. But what if you are the doctor, and your colleagues dismiss your disabilities and mental health difficulties? Miranda Schreiber explores this challenging relationship.

When I was 15, I described what turned out to be the neurological symptoms of mental illness to my doctor. I told him I couldn’t do schoolwork, feel the cold, or understand a book. He suggested I go on walks if I was stressed.

This breakdown in communication, in which patient and doctor seem to live in different worlds, is well-documented by disabled people. Many feel they have to translate their experience, because disability and medical structures seem incompatible.

But this experience is familiar to disabled doctors too, and some are seeking solutions.

Sarah Islam was a fourth year medical student at Indiana University when she developed a chronic illness which caused exhaustion, chronic pain, and cognitive impairment. She said her symptoms, which didn’t tick a specific box, made her feel like she lacked fluency in the medical language she was learning.

‘Brick wall’

“I remember, even as a med student, having the vocabulary to explain what I was going through but feeling like I had hit a brick wall,” she says. “I actually didn’t know how to describe it.”

With her experience of sickness, Islam shifted from believing legitimate illness could be diagnosed to living as a patient with symptoms which didn’t fit a clear disease profile.

But she noticed a change in her colleagues too, when she returned to medical school after a period of recovery.

“If I said the word ‘pain’ [colleagues] took it as coded language for ‘I’m lazy’ and ‘I can’t do my work’.

“They would challenge my reality,” she says, something which led her to conceal her symptoms. “I felt like everything I shared was going to be weaponized against me. They would say ‘you walked two days ago so why can’t you walk today?’ Almost like they caught me in a lie.

“The baseline understanding of what it means to be disabled is not there.”

This sort of discrimination is often referred to as ableism – which favours non-disabled people over those with disabilities.

It is made all the harder to confront in medicine when disabled clinicians are vastly underrepresented. Disabled people make up about 20% of the population in the UK and US but only 2% of British and American doctors.

Islam says simple accommodations like taking notes in front of patients, or taking the elevator rather than the stairs, were criticised by her advisors as unprofessional. And these same attitudes, Islam explains, manifest in patient interviews.

“It’s completely baffling to me how we can expect patients to respect us when we won’t even believe what they’re telling us.

“It’s scary to be viewed as good or bad because you can or cannot work,” she says.

Hardeep Lotay, a fifth year medical student at the University of Cambridge and mental health advocate, sympathises with Islam. “There’s the idea in medicine you have to stretch yourself further than is reasonable because that’s the nature of the profession,” Lotay says, who also researches medical racism.

“I took a year-and-a-bit out from the course. In medical school any difference is seen as weakness, and any weakness is taken to mean you’re not as good as your cohort. There’s stigma in everyone knowing you’ve taken time off.

“It can be very negative to see the perception of psychiatry patients from your colleagues and seniors.”

The attitudes Lotay and Islam experienced were also identified in research by Drs. Havi Carel and Ian Kidd, philosophy professors at the University of Bristol and University of Nottingham.

They found medical experts often perceive disabled patients as incapable, unreliable, and emotionally unstable, leading clinicians to “downgrade the credibility” of what disabled patients say.

This discrimination can impact treatment decisions and compromise disabled patients’ health, increasing their risk of secondary conditions.

‘Gaslighting the patient’

Revealingly, Canada Care Connection, which helps patients find family doctors, found in its team audits that patients with chronic pain took the longest to place, and that some family doctors refused to see “undesirable” patients because of a disability. “They just won’t accept them,” one Care Connector wrote.

Joanna, a disability activist from New Jersey, has mast cell activation syndrome. The disorder causes overactive mast cells – which form part of the immune system – which trigger anaphylaxis. Joanna lived without medical support until she was 25 because doctors believed she was exaggerating her symptoms.

“I wish medical students were taught to be open to information disabled patients provide,” she says. “It’s okay for a medical student or doctor to admit that they don’t have the answer. That’s so much more helpful than gaslighting the patient.”

This is something the University of Michigan is trying to address. Its medical school has started providing students with teaching sessions focused on disability in its entirety – from disability pride to the everyday and justice.

But there are also the disabled activists, medical students and doctors who propose that the breakdown in communication could be reduced if there were more disabled physicians.

“As a disability activist who’s proud of being disabled, there’s a vocabulary of identity that I can’t use with doctors,” says Charis Hill, an activist from Sacramento, California. “They think disability is bad. It’s what they want to keep you from becoming.

“With a disabled doctor I wouldn’t have to explain so much because we’re speaking the same language,” they say. “My care outcomes would be so much better because I would be understood.”

Lotay and Islam have both used their personal experience to guide the way they approach medicine.

“If a patient comes to you and tells you they’re completely deflated, you can communicate with them and speak a language of mental health,” says Lotay.

Dr. Duncan Shrewsbury, a clinician and senior lecturer at Brighton and Sussex Medical School who has ADHD, agrees.

“We should be systematically looking at how we support and advocate for disabled learners, both at university and postgraduate training levels,” he says.

“It wasn’t until disabled people chained themselves to the front of a bus [in the UK] that disability legislation started looking at public services needing to cater to people with different abilities,” he says, reflecting on the 1995 protests for disability rights.

The University of Michigan has also tried to address barriers by altering its technical standards for admission. Disabled applicants no longer need to demonstrate physical competencies, like being able to lift a patient.

But Islam observes that practicing medicine is only part of the challenge.

“The barriers start before any of us even apply,” she says. “If this had happened to me when I was 17 I probably wouldn’t have had the energy, or the finances frankly, to apply. It’s clear you are not the person wanted in this field.”

But with systemic change, things could be different.

The experiences I described to my doctor when I was 15 did not need to be beyond understanding.

Perhaps, rather than recommend I go on walks, my doctor might have said: “I have felt the same way.”

Grenfell Tower Inquiry: We Had No Escape Route, Say Disabled Residents

April 21, 2021

Disabled residents of Grenfell Tower have told a public inquiry that no-one discussed with them how to escape the 24-storey building in an emergency.

One woman said it took her 30 minutes to walk down from her 20th floor flat when lifts were not working.

Lawyers for residents and the bereaved have called the fire in June 2017 “a landmark act of discrimination” against disabled people.

It killed 72 people, including 41% of the tower’s vulnerable adults.

As part of phase two of the inquiry, examining how the building was managed, disabled residents told how they had no escape routes in an emergency and how many of them struggled to access their own homes when lifts were broken.

On one occasion, Corinne Jones said she had to carry her son on her back, all the way down the stairs from her 17th floor flat.

Months earlier she had warned the council, the Royal Borough of Kensington and Chelsea, that her son had mobility issues due to an autoimmune condition – and they had assured her there would always be a working lift available.

But she said she did not complain to them or the Tenant Management Organisation which ran the building on the council’s behalf, because they had never responded to previous complaints and she found them insensitive.

‘Price tag on our lives’

Emma O’Connor ticked a box to say she had a disability when she moved into a 20th floor flat in Grenfell Tower in 2012, because she needed support to walk.

Staff from the Tenant Management Organisation did not discuss how she should evacuate the building in the event of a fire, she said.

She said it took her 30 minutes to walk down the stairs and when the lifts were broken she sometimes had to stay with family until they were repaired.

Ms O’Connor said the Tenant Management Organisation only gave them selective information about the refurbishment, were unresponsive to complaints and “rude” to residents.

At the end of her evidence, she said: “I don’t think it’s fair that these corporate companies were given the choice to choose what the price tag on our lives should be.”

Mahboubeh Jamalvatan, who lived on the third floor, also said she had never been given any instruction on fire safety. On the night of the disaster, she had to slide, step-by-step, down the stairs on her bottom because she was unable to walk.

Maher Khoudair, who used crutches after contracting polio as a child, said there was no escape route with disabled access from the ninth floor flat where he lived with his wife and three daughters.

The only route he could take was the stairs, and no-one explained to him what to do in a fire when he moved in.

Hisam Choucair said his mother, Sirria, lived on the 22nd floor and used a walking stick due to a bad back.

A personal evacuation plan was never made for her, he said. She died in the fire.

‘No point’ asking for help

The inquiry also heard that as people living in the tower became more frustrated with the poor quality of the refurbishment, in which dangerously flammable cladding was installed, the Tenant Management Organisation decided to scrap regular residents’ meetings.

In a witness statement, project manager Claire Williams said “meetings could become difficult with disruptive conduct from a small number of residents”.

Nurse Betty Kasote said she felt she had been branded a “troublemaker” when she tried to get leaks in her flat fixed, but she said she did not recall anyone being disruptive.

Rosita Boniface, who lived on the 11th floor of the tower for 36 years, said she had never heard a fire drill there.

She said she had not asked the Tenant Management Organisation for an evacuation plan for her husband, who is blind “because I did not think they would care”.

“It was always a struggle to get them to respond to my complaints, so I felt that there was no point going to them for help,” she said.

DWP Sends A Million Misleading Letters To Prevent PIP Back Pay

April 21, 2021

With many thanks to Benefits And Work.

 

The DWP have sent out up to a million misleading letters designed prevent tens of thousands of potentially eligible PIP claimants receiving thousands of pounds each in arrears. The letters are very probably unlawful, both in terms of properly informing claimants of a legal decision and in terms of breaching the General Data Protection Regulation (GDPR).

The LEAP review

In a decision known as MH, it was found that the DWP had been misapplying the law in relation to overwhelming psychological distress and following the route of a journey.

Claimants should be awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they need someone with them to follow the route of an unfamiliar journey.

And they should be awarded the enhanced rate if they cannot follow the route of a familiar journey without having someone with them, for the same reason.

Journeys on foot, by car or on public transport should all be taken into account.

Instead the DWP had been awarding just 4 points, not enough for any award of the mobility component at all.

The LEAP review, which also relates to another case called RJ in which the DWP was found to have got the law wrong in relation to safety and supervision, was set up to identify claimants who should be getting more money.

Before LEAP, when the DWP was trying to change the law in its favour, it had estimated that almost 1 in 7 claimants might be affected by the MH decision.

Yet between June 2018 and January 2020 only around 1 in 200 claimants got an award under LEAP.

And for the following year, up to January 2021, that proportion dropped to just over 1 in 1,000.

By January of this year almost 900,000 claimants had been assessed under LEAP, with just 3,700 getting an award in relation to MH. By now, over a million are likely to have been processed.

So the main job of the LEAP letter, which each reviewed claimant should have received, appears to be to prevent them understanding and challenging the decision to award them nothing.

Misleading title

The title of the letter seems designed to encourage recipients to stop reading and bin it immediately. It reads:

Personal Independence Payment

Changes in PIP law – we have looked again at your PIP and it has not changed

How many claimants who are actually due thousands of pounds in arrears never get further than that paragraph?

Many claimants are thrown into a state of panic whenever they get a brown envelope from the DWP. It may take them days to pluck up the courage to open it. And the MH decision this letter largely relates to is about people who experience overwhelming psychological distress.

The incredible relief at reading that nothing has changed, in large letters at the very top, may be all that many claimants register before throwing the letter away.

A lucky escape

The letter goes on to turn a positive change in the law into a frightening possibility that you could have had your PIP removed:

There have been some changes in Personal independence Payment (PIP) law that affect how the Department for Work and Pensions decides PIP claims.

We are looking again at PIP claims to find out which ones are affected.

This letter explains if and how these changes affect you.

There have indeed been changes in the law.

And anyone affected by those changes is entitled to more money and potentially thousands of pounds in arrears. Absolutely nobody will lose money because of them.

But if the DWP had said that, people might have wanted to find out more.

So, the letter keeps quiet about the changes all being in the claimant’s favour and leaves the reader feeling like they have had a lucky escape.

No explanation

The DWP go on to say:

This letter explains if and how these changes affect you.

These changes are to do with:

How we assess someone’s ability to plan and follow a journey

How we decide whether someone can carry out an activity safely or not, and whether they need supervision

There is more information about these changes towards the end of this letter and at www.gov.uk/dwp/pip-changes

So, if you actually do want to know what these changes are, all you’ve got so far in connection with the MH case is ‘These changes are to do with: How we assess someone’s ability to plan and follow a journey’

If you go to the end of the letter, as instructed, you will read:

MH v DWP tribunal judgement. This relates to how ‘overwhelming psychological distress’ is considered when assessing the ability of someone to plan and follow a journey. This change applies from 28 November 2016.

Which still tells you nothing about how the law has changed and how it might affect you.

Bewildering link

If you have internet access, you can type out that link in the letter to be taken to more information online.

But when you get to the linked page, you’ll be faced with a list of five different changes.

The very last one is headed: Overwhelming psychological distress and journeys: changes to PIP law from 28 November 2016

On this page you will discover that changes to the law mean that:

“We are looking at all current PIP claims to check if this change means you may be eligible for more support under PIP.”

So, finally, you’ve learnt that the change means you might be entitled to more, not less, money. Something the DWP chose not to tell you in the letter.

There is still no explanation of what the change in the law actually is, however.

But there is a link to an Upper Tribunal judgment on overwhelming psychological distress and journeys.

The link takes you to an incredibly dense 700 word summary of the MH decision.

Most people would struggle to understand that summary.

There is then a link to the full decision. However, that is 21 pages long and, again, most people not practised in reading legal decisions would struggle to follow it.

So, the truth is, most people receiving the LEAP letter have no way of being able to tell whether they are affected by the change in the law or not.

It is a tactic that has clearly worked.

We heard from people in our survey who definitely did not understand what the letter was about:

Didn’t know what the letter meant until I’ve read this news letter

Didn’t really understand stand what the letter meant had no one to help me

And so far we have heard from just three people, out of one million, who have actually challenged the decision in the LEAP letter. In each case the DWP caved in and paid what was owed.

Too complex

We suspect the DWP will argue that the legal concept in MH is much too complex to explain in simple terms.

Yet, something as simple as the following would have made a huge difference:

In a decision known as MH, it was found that the we had been getting the law wrong in relation to overwhelming psychological distress and following the route of a journey.

Claimants should have been awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they needed someone with them to follow the route of an unfamiliar journey.

And they should have been awarded the enhanced rate if they could not follow the route of a familiar journey without having someone with them for the same reason.

Instead we had been awarding just 4 points, not enough for any award of the mobility component at all.

It may not be perfect, but it’s still gives a reasonable idea of who benefits.

The DWP employ people whose full-time job is to write clear information, yet no attempt was made to explain this decision.

Error of law

There are more things that make this letter utterly unfit for purpose.

The letter doesn’t tell you what evidence in your PIP claim or claims they considered. Claim form, assessment report, additional evidence? If there was more than one claim did they still have the evidence from the earlier claims? Without this information, how can you know if they considered all the evidence that they should have?

The letter says they looked at ‘any new information you provided at my request’ but we haven’t heard of a single person actually being asked to provide additional evidence prior to a decision.

The reality is that because the DWP didn’t consider that extreme psychological distress in the course of a journey was relevant to a PIP claim, they had no reason to collect or record information about it occurring. So, almost by definition, without gathering new evidence their decisions were flawed.

No reasons are given for why it was decided you personally were not affected by the changes in the law, so how can you tell if the decision was correct? For example, it doesn’t say something like ‘We decided that although you experience psychological distress, it is not overwhelming.

All these failings mean that the way the decision was reached and communicated may amount to an official error.

The sting in the tail

There’s one more deceptive stunt the DWP pull.

In the letter, above the signature, you are not told that you have the right to challenge this decision via mandatory reconsideration and appeal.

Instead, that information is relegated to a separate page of ‘bumph’, where there is also generic text about other benefits and changes of circumstances.

There are details about how to get advice on debt and savings from the Money Advice Service, but no mention of how to get help from an advice agency with challenging the decision in the letter.

Does hiding this information about appeal rights on a separate page after the end of the letter work?

Definitely.

In our survey we heard from people who said they had no idea that they could challenge the decision.

I didn’t realise I could argue this at that point in time. I basically just put it away and ignored it.

I did not know that I was able to challenge the decision and would not have been sure how to anyway.

Were humans involved?

There’s another thing about this whole process that may render it unlawful.

We very strongly suspect that most of these decisions have been made not by a decision maker, but by a computer algorithm. Hence the lack of any personalised text in the entire letter, other than names and dates of awards pulled by software from a database.

Though even here the DWP try a sneaky trick by including a list of the points you scored at your last assessment on a separate sheet, to make it look like the decision is specific to you.

But it’s not, that information is just pulled from another database by more software.

In reality, this document is just a standard letter, without a single word about your particular circumstances and why they don’t entitle you to more points.

If it is true that most of these decisions were made via Automated Decision Making (ADM) without any meaningful involvement by a person qualified to make them, then they are very probably in breach of the General Data Protection Regulation (GDPR).

Which might make the entire review of 1.6 million claimants unlawful.

So, don’t expect the DWP to come clean about what they’ve been up to.

It will take a lot of pressure from organisations much more influential than Benefits and Work to get to the bottom of this.

But, we’ve begun the task by making Freedom of Information requests to find out more. And we’re doing our best to spread the word.

The DWP haven’t got away scot free yet.

The LEAP letter text in full

[Below is the text of the LEAP letters we have seen. But we have only seen four letters so far and we are aware there may be different versions. Please let us know if you have one at admin@benefitsandwork.co.uk )

Personal Independence Payment

Changes in PIP law – We have looked again at your PIP and it has not changed

Dear [insert claimant name],

There have been some changes in Personal independence Payment (PIP) law that affect how the Department for Work and Pensions decides PIP claims.

We are looking again at PIP claims to find out which ones are affected.

This letter explains if and how these changes affect you.

These changes are to do with:

  • How we assess someone’s ability to plan and follow a journey
  • How we decide whether someone can carry out an activity safely or not, and whether they need supervision

There is more information about these changes towards the end of this letter and at http://www.gov.uk/dwp/pip-changes

About your PIP
I have looked again at your award before [insert decision date] and it is not affected.

If you think it could be affected by these changes in PIP law, please phone or write to us using the details at the top of this letter.

Your PIP award from [insert decision date] is correct. This is because these changes in PIP law were taken into consideration when deciding your award from that date.

For your information, a copy of your last set of scores for your PIP is included with this letter.

Your payments
These changes in law do not change the amount of PIP you are getting.

What I did
I looked again at the information we have on your PIP claim(s) including any new information you provided at my request.

Why I looked again at your PIP claim(s)
I looked again at all your PIP claim(s) that may be affected because of the following changes in the law on how PIP claims are decided.

MH v DWP tribunal judgement. This relates to how ‘overwhelming psychological distress’ is considered when assessing the ability of someone to plan and follow a journey. This change applies from 28 November 2016.

RJ v DWP tribunal judgement. This relates to how we decide whether a claimant can carry out an activity safely. It also relates to how we decide if a claimant needs supervision. We now consider the seriousness of any harm that might happen, as well as the likelihood of it happening. Supervision is a need for the continuous presence of another person to prevent harm happening to the person who is claiming PIP or another person. This change applies from 9 March 2017.

For more information about these changes go to

www.gov.uk/dwp/pip-changes

Yours sincerely

[print name]

Campaigning Charity Z2K Asks For Your Views

April 21, 2021

With many thanks to Benefits And Work.

 

Campaigning anti-poverty charity Z2K is asking claimants to share their experience of disability benefits assessments as they try to put pressure on the government to make changes.

Readers may remember Z2K as the charity that reported the DWP to the Advertising Standards Authority (ASA) over its fake news items on universal credit. The ASA subsequently found against the DWP and they have not repeated that particular form of deception.

Now Z2K is trying to put pressure on the government to get on with their long-delayed Health and Disability Green Paper, which is supposed to be looking at how to improve support for people on disability benefits.

Z2K wants you to tell them about your experiences of PIP assessments and work capability assessments to help them explain where benefits assessments need to be changed and why the Green Paper is urgent.

The closing date for taking part in the survey is 28 April.

You can find Z2K the survey here

Tipping Point: Woman Has Voice Reconstructed Thanks To ITV Show Appearance

April 20, 2021

A Scottish woman who lost her speech after developing motor neurone disease (MND) has had it reconstructed using sounds from her appearance on the ITV gameshow Tipping Point.

Helen Whitelaw appeared on the show in 2019, winning almost £3,000.

She was diagnosed with MND the following year, after which her speech rapidly deteriorated.

But engineers took the audio of the 76-year-old’s TV appearance and used it to build her voice into a computer aid.

Ms Whitelaw of Glasgow has thanked them for “giving me back my voice”.

Tipping Point, which first aired in 2012, finds contestants answering general knowledge questions in order to win counters which they use on a large coin pusher machine.

“The diagnosis was devastating for the family,” Ms Whitelaw told STV News. “I wanted people to know what I was saying and I did not want to sound like a machine.

“I am extremely grateful to everyone concerned for giving me back my voice.”

Her daughter Gillian Scott said it was “just the best” to be able to hear her mother’s voice again.

“I think we thought all hope was maybe lost, and it’s not been,” she told Tipping Point host Ben Shephard on Good Morning Britain on Thursday.

Ms Whitelaw added: “It is wonderful being able to talk to people and sound normal and not like a machine.

“My frustration has vanished and I can now have satisfactory conversations with everyone.

Alice Smith, from the Edinburgh-based company Speak Unique, which builds synthetic voices for people, said they were “apprehensive” at first about using the technology.

“We were sort of joking that she’d definitely be able to say, ‘Drop zone four’, as that was such a catchphrase during the show,” she told STV News.

“But we were so pleased that we did manage to get it to work with her appearance on Tipping Point.”

What is MND?

Motor neurone disease is a group of diseases that affect the nerve cells in the brain and spinal cord that tell your muscles what to do.

Also known as ALS, it causes muscle weakness and stiffness.

Eventually people with the disease are unable to move, talk, swallow and finally, breathe.

There is no cure and the exact causes are unclear – it’s been variously linked to genes, exposure to heavy metals and agricultural pollution.

How Sex Surrogates Are Helping Injured Israeli Soldiers

April 20, 2021

In many countries surrogate sex therapy – in which a person is hired to act as a patient’s sexual partner – is controversial, and not widely practised. In Israel, however, it is available at government expense for soldiers who have been badly injured and need sexual rehabilitation.

The Tel Aviv consultation room of Israeli sex therapist Ronit Aloni looks much as you would expect. There is a small comfy couch for her clients and biological diagrams of male and female genitalia, which she uses for explanation.

But what happens in the neighbouring room, which has a sofabed and candles, is more surprising.

This is where paid surrogate partners help teach some of Aloni’s clients how to have intimate relationships and ultimately, how to have sex.

“It doesn’t look like a hotel – it looks more like a house, like an apartment,” says Aloni. There’s a bed, a CD player, an adjoining shower – and erotic artwork adorns the walls.

“Sex therapy is, in many ways, couple therapy and if somebody doesn’t have a partner then you cannot complete the process,” she goes on. “The surrogate – she or he – they’re there to model the partner role in a couple.”

Although critics liken this to prostitution, in Israel it has become accepted to the extent that the state covers the cost for soldiers with injuries that affect their ability to have sex.

“People need to feel they can pleasure somebody else and that they can get pleasure from somebody else,” says Aloni, who has a doctorate in sexual rehabilitation.

“People are coming for therapy. They’re not coming for pleasure. There is nothing similar to prostitution,” she adds firmly.

“Also, 85% of the sessions are [about] intimacy, touching, giving and receiving, communicating – it’s about learning to be a person and how you relate to other people. By the time you have a sexual relationship, that’s the end of the process.”

Short presentational grey line

Mr A, as he wants to be known, was one of the first soldiers who got Israel’s Ministry of Defence to pay for sex surrogate therapy after a life-changing accident nearly 30 years ago, when he was an army reservist.

A fall from a height left him paralysed from the waist down and unable to have sex in the ways that he had previously.

“When I was injured I made a list ‘To Do,'” he says. “I have to [be able to] do a shower by myself, I have to eat, dress by myself, to drive by myself and have sex independently.”

Mr A was already married with children, but his wife did not feel comfortable talking about sex to doctors and therapists, so she encouraged him to seek help from Aloni.

He explains how Aloni gave directions and feedback to him and his surrogate partner before and after each session.

“You start from the beginning: you’re touching this, you’re touching there and then it’s building step-by-step until the last stage of getting an orgasm,” he says.

Mr A argues it was right for the state to pay for his weekly sessions, just as it did other parts of his rehabilitation. Today the cost of a three-month treatment programme is $5,400.

“It wasn’t the goal of my life to go to a surrogate, OK, I was injured and I want[ed] to rehabilitate in every aspect of my life,” he says, sitting in his wheelchair, in a tracksuit, on his way to play table tennis.

“I didn’t fall in love with my surrogate. I was married. It was just to study the technique of how to get to the goal. I took it as a very logical thing that I have to do.”

He blames Western hang-ups about sex for any misconceptions.

“Sex is part of life, it’s the satisfaction of life,” he says. “It’s not that I’m being Casanova, this is not the issue.”

Short presentational grey line

A steady stream of people of different ages and backgrounds visits Aloni discreetly at her clinic.

Many are struggling to have a romantic relationship because of intimacy issues or anxiety, or have suffered sexual abuse. Others have physical and mental health conditions.

Aloni has focused particularly on disabled clients since the start of her career. Several of her close relatives had disabilities including her father, a pilot, who suffered a brain injury after a plane crash.

“All my life I was next to people having to deal with and overcome different disabilities,” she says. “All these people were very well rehabilitated and so I had this very optimistic approach.”

Aloni became close to a surrogate who worked with disabled people while studying in New York.

When she came back to Israel in the late 1980s, she gained the approval of leading rabbis for the use of sexual surrogates and started providing therapy at a rehabilitation centre on a religious kibbutz – a rural community.

The rabbis had one rule – no married men or married women could be surrogates – and Aloni has followed it ever since.

Over time, she has won backing from the Israeli authorities. Out of about 1,000 people who have had surrogate sex therapy at her clinic, dozens have been injured army veterans – many with brain trauma or spinal cord injuries, whose treatment has been funded by the state.

Aloni believes that Israel’s family-oriented culture and its attitude towards its armed forces has worked in her favour. At 18, most Israelis are called up for military service and they can continue as reserve soldiers into middle age.

“We are in a war situation all the time since the country was established,” she says.

“Everybody in Israel knows people who were injured, or died and everybody has a positive approach to compensating these people. We feel obliged to them.”

Short presentational grey line

A tall man of about 40 is sitting in his garden in central Israel with a blanket across his lap. He is a former reserve soldier whose life was shattered in the 2006 Lebanon War.

David – as we will call him – was left unable to talk or move.

He can only communicate with the help of his occupational therapist – if she supports his arm and holds a pen in his hand, he can write on a whiteboard.

“I was just an ordinary person. I’d just got back from a trip to the Far East. I was studying in university and worked as a barman. I used to love sports and being with friends,” David says.

When his military unit came under attack, he suffered serious leg and head injuries and went on to spend three years in hospital.

During that time, he says he lost the will to live.

Things only began to turn around after his occupational therapists suggested surrogate sex therapy.

“When I started the surrogate therapy, I felt like a loser, like nothing. In therapy. I started feeling like a man, young and handsome,” David says.

“It was the first time that I felt that since my injury. It gave me strength and it gave me hope.”

This was an intimate relationship that David started, knowing that it would have to end. So was there a risk that he would be emotionally hurt?

“Initially, it was difficult for me because I wanted the surrogate all to myself,” he says. “But I realised that even if we’re not partners, we’re still good friends. And it’s worth it. It’s worth everything. It just helps you rebuild yourself all over again.”

While the usual rules are that surrogates and clients cannot be in contact outside of the therapy, David and his surrogate – a woman who uses the alias Seraphina – were given special permission by Dr Aloni’s clinic to stay in touch when their sessions ended.

Since the treatment, those close to David say they have seen a transformation in him. He has been focusing on plans for the future.

While having a sex life remains very difficult, before Covid-19 struck he had begun socialising more, going out with the help of his carers.

Short presentational grey line

Seraphina has worked as a surrogate with Ronit Aloni for over a decade. She is slim with bobbed hair and is warm and articulate.

Recently she published a book about her experiences. Titled More than a Sex Surrogate, the publishers describe it as “a unique memoir about intimacy, secrets and the way we love”.

Like all of the surrogate partners at the Tel Aviv clinic, Seraphina has another job. Hers is in the arts. She says she took on her role for altruistic reasons.

“All those people that suffer under the [surface] and have all those hidden secrets that they walk around with, I really wanted to help because I knew I had the ability,” she explains.

“I had no problem with the idea of using sexuality or my body or touch in the therapy process. And the subject was fascinating to me, sexuality was fascinating to me.”

Seraphina describes herself as “like a tour guide”, saying she takes clients on a journey in which she knows the way.

She has worked with about 40 clients, including another soldier, but says that the severity of David’s injuries posed a unique challenge. She learned how to help him to write so that they could chat privately.

“David is the most extreme case ever known. It was like walking in a desert – you had no idea of the direction [in which] to go,” she says.

“I had to be very, very creative because he doesn’t move at all. I moved his body as I imagined he would have moved if he could. He felt his body but he could not move it.

“He always said: ‘She knows exactly what I want, even if I don’t say anything.’ So, it was really flattering.”

While being a surrogate, Seraphina has had boyfriends who, she says, accept what she does. But she knows other women and men who have stopped acting as surrogates for the sake of their personal partners or to get married.

She explains that saying goodbye to clients after they have been intimate is necessary but can be difficult.

“I say, it’s like going to a vacation. We have an opportunity to have a wonderful relationship for a certain short time and do we take it or give it up?

“And it’s the happiest break-up anybody can have. It’s for good reasons. I can cry sometimes, but at the same time, I’m so happy.

“When I hear that anybody is in a relationship or had a baby or got married, it’s unimaginable how happy and thrilled and thankful I am for what I do.”

Short presentational grey line

Late in the evening, Ronit Aloni is still working, giving an online lecture to a group of sexologists from Europe and as far afield as South America.

She recounts cases and quotes studies suggesting surrogacy is more effective than classic psychological therapy at treating sexual problems.

“This is most interesting, those therapists who did already work with surrogates all of them said that they will do it again,” she tells them.

With modern surgery helping more severely wounded soldiers to survive she believes surrogate treatment could be used more widely.

“You cannot rehabilitate a person without rehabilitating their self-esteem, their perception of being a man or a woman,” she says.

“You cannot ignore this part in our life. It’s very important, powerful. It’s the centre of our personality. And you cannot just talk about it. Sexuality is something dynamic, is something that has to be between us and other people.”

In Aloni’s view, modern society has developed unhealthy attitudes towards sex.

“We know how to joke about sexuality. We know how to humiliate people, we know to be very conservative or too extreme about sexuality,” she says.

“It’s never really balanced. It’s never weaved into our life in the way it’s supposed to be, and sexuality – it’s life. This is how we bring life. It’s nature!”

GPs To Prescribe Benefits And Debt Advice In Pilot Project

April 20, 2021

With many thanks to Benefits And Work.

 

GPs in Lambeth and Southwark will be able to prescribe financial advice sessions for working age patients in a pilot project which could be rolled out nationally if successful.

GPs will identify working age patients who have a long-term health condition and financial problems and refer them to Impact on Urban Health and the Centre for Responsible Credit, who will be able to help them with claiming benefits and dealing with debt problems.

Kieron Boyle, the chief executive of Impact on Urban Health, told the Guardian: “People’s finances and health are connected: debt, money worries and financial insecurity can have a profound effect on our physical and mental health.

“This is especially the case in ‘cliff edge’ moments such as unexpected bills or delays in income.

“As a result, we’re proud to support the UK’s first model of social prescribing that includes debt advice, bringing together local authorities, housing associations and healthcare providers. We think this approach could spread to cities across the country.”

The pilot project is set to be tested on 2,000 people and will then be reviewed with the aim of encouraging a national roll-out.

You can read more on this story in the Guardian.

How The DWP Has Rigged The LEAP Review System to Deprive PIP Claimants

April 19, 2021

With many thanks to Benefits And Work.

 

Benefits and Work has had over 300 responses to its survey on the LEAP review into errors of law by the DWP. The responses suggest that the DWP has rigged the system to give as few awards as possible and make challenges to decisions very unlikely.

As a result, although close on a million claimants have been refused arrears under LEAP, we have heard from only three claimants so far who lodged an appeal.

Yet each of these claimants got substantial awards when the DWP backed down before a hearing could be held. One received £12,000, one got £5,000 and the other £3,000.

The LEAP review

In a decision known as MH, it was found that the DWP had been misapplying the law in relation to psychological distress and following the route of a journey.

Claimants should have been awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they needed someone with them to follow the route of an unfamiliar journey or if they could not undertake a journey at all.

And they should have been awarded the enhanced rate if they could not follow the route of a familiar journey without having someone with them for the same reason.

Instead the DWP had been awarding just 4 points, not enough for any award of the mobility component at all.

The LEAP review also relates to another case called RJ, in which the DWP was found to have got the law wrong in relation to safety and supervision. That issue is not covered in this article.

The DWP claim to be checking the cases of 1.6 million PIP claimants to make sure they have the correct award and writing to them with the results.

Where are all the decision letters?

According to the DWP’s figures, back in January 890,000 cases had been cleared against MH since June 2018. By the time we did our survey in April, that figure should have been over the million mark.

Yet the overwhelming majority of people who responded to our survey said they hadn’t had a letter connected to this review – even though the survey was directed at people ‘who have received news from the DWP that your LEAP review has been unsuccessful’.

Our newsletter goes out to very nearly 100,000 people. We would expect that number to include a reasonable proportion who were covered by the LEAP review.

So why do so few people recall getting a letter?

One possibility is that because of the way the letter was written, people did not did not realise it was a LEAP review letter and no longer remember having got it. The letter was headed

Personal Independence Payment

Changes in PIP law – we have looked again at your PIP and it has not changed

This would be enough to persuade many people to read no further.

The only information given about the MH decision in the letter is:

MH v DWP tribunal judgement. This relates to how ‘overwhelming psychological distress’ is considered when assessing the ability of someone to plan and follow a journey. This change applies from 28 November 2016.

No attempt was made to explain what the decision said or who might be affected.

The other possibility is that the DWP have not written to the majority of people who have been reviewed.

No knowledge of review

Many people had not only not received a letter, they had heard nothing about the LEAP review from anyone but Benefits and Work. By not effectively publicising the review, which involves 1.6 million people, the DWP are ensuring that most people have no understanding of whether or how they might be affected.

This is the first time I have heard of this.

The first I knew about this was reading your news letter

This is good news from the DWP’s point of view. If claimants don’t know about the review and the DWP don’t send them a decision letter, or send them one that explains nothing, they will never know that they may be missing out on thousands of pounds in arrears.

Didn’t understand the review letter

As we’ve seen the LEAP letter explained virtually nothing about the MH decision or who it might affect.

Didn’t know what the letter meant until I’ve read this news letter

Didn’t really understand stand what the letter meant had no one to help me

I don’t understand what the letters mean and have to get them explained and most time put them away as it’s about work out money

Again, it’s a win for the DWP. People are unlikely to challenge a decision if they don’t understand what it is about.

No response

We heard from people who had written to the DWP after learning about the LEAP review, but had received no response.

I wrote a letter last year asking them to look at my claim again. I receive ESA also and

registered as severely disabled. I got no reply. It took me a very long time to face up to writing

that letter.

I cannot understand why I have had no response. My letters were sent recorded delivery and the last was 3 months ago Not to get any response means I cannot even challenge anything. Also I do not understand why they haven’t even responded to say we are looking into this.

I have wrote to them back in November 2020 asking them to look into my claim again, which they haven’t replied back yet to me.

Here the DWP are using the standard technique of ignoring people in the certain knowledge that a high proportion will give up and go away.

Fobbed off

Claimants who contact the DWP about the review by telephone have been routinely fobbed off.

I didn’t receive a letter but rang DWP, they told me my claim had been looked at but there would be no change.

I sent the letter in October but they only acknowledged it in February when I called up to ask if they had it but they said it had been flagged to be looked at – but they were not very helpful and said that everyone who was supposed to be paid was most likely paid.

I called the DWP re. the review of all cases and have been told that I have to wait until they

get round to me.

Told review would take place at a future date unspecified.

I asked for this after announcement re mental health and mobility award – I work for Citizens

Advice, benefits is part of my work, including PIP. They just said (phone conversation) he gets

nothing and it won’t change.

I called the DWP last year and was informed that I was one of the persons down to get this back payment from 2016. Interestingly I called them again 2 weeks ago and the person was very cagey and told me I would have to wait and see!

Again, the technique of wearing people down and lowering their expectations will mean that the number of challenges to decisions, if they are ever actually communicated, will be tiny.

Not aware of appeal rights

We asked people who had been told they did not qualify for an award of arrears why they had not challenged the decision. In many cases claimants were simply not aware that they had a right of appeal.

I didn’t think I could appeal, plus I would be afraid of losing my award.

I took the DWPs decision for granted and thought it was correct. Having second thoughts now having seen your article. I think I’ve been a fool.

Cos they told me that I was not entitled to extra points so I believed them

I thought that they made a decision and that was that.

I didn’t realise I could argue this at that point in time. I basically just put it away and ignored it.

I did not know that I was able to challenge the decision and would not have been sure how to anyway.

I was not well enough due to my Mental Health and I wasn’t really aware I could challenge it.

When I realised that I was able to I thought it was pointless as I had not done so within an appropriate timescale

In fact, the right to challenge the decision was not put in the body of the letter, before the signature. Instead, it was on a separate page of general ‘bumph’ about other benefits and changes of circumstances. No information about how to get help from an advice agency was given, yet details of how to get budgeting and savings advice were provided.

Too worried to challenge

The DWP can also count on fear to reduce the number of challenges. If they unfairly refuse an increase or a backdated award to claimants who are already getting some rate of PIP, a very large proportion will be much too afraid to challenge the decision in case they lose what they already have.

Was frightened I would lose my award entirely if I challenged them.

I was afraid they would take away all my money.

Don’t want to lose what I’m getting re award for personal care.

I have been dragged to Tribunal, every time my PIP has come up for renewal. I dare not do anything that would jeopardised my award.

I have Autism and ADHD don’t go out alone, was worried about losing Care component

Lack of help to challenge

Challenging a decision via the mandatory reconsideration and appeal process is a complex business. Some claimants would be willing to undertake it if they have help, but funding cuts and the pandemic have ensured that such help is increasingly difficult to find.

I would like to challenge it but feel I need qualified legal help to do it

I didn’t want to jeopardise my existing PIP award by questioning the above DWP decision. I was unable to get legal advice/advocacy or support at the time.

I wouldn’t know where to start?

Effect on mental health

For some claimants, the mental distress caused by contact with the DWP means that attempting an appeal without a great deal of support is unthinkable.

I had tried to challenge the decision on the original award and mentally could not cope with it. Therefore when received the letter dated 28th May 2019 I just filed the letter away. Otherwise it plays on my mind causing a number of other issues on my Mental Health.

I have never experienced the stress the claim procedure put me through. It took me years, yes years to come to terms with what i endured. I do not think i could survive a repeat.

My sons mental health is such that he is terrified, paranoid and begs me not to speak with them in case they take what he has away or insist on assessment. He cannot attend assessment. Last one on paper. His MP – [name redacted] will not help much with benefits, told me ‘People try to pull the wool over our eyes.’ What can you do with that mentality?

Clearly entitled but still had nothing

Some claimants received the enhanced rate of the mobility component because of the MH ruling when their award was subject to a planned review. However, they have still not received the backdated award they are clearly due.

I received enhanced mobility at my last assessment and only backdated a few months and was told I would get the remainder in time, still waiting

Received enhanced on both parts from standard daily living. Decision maker told me I was absolutely right about the MH ruling and a separate team will be looking at it for me and they will be I touch in due course. This was in July 2020 I have since wrote to them stating I feel like I’ve been forgotten etc and received a letter back saying they are still working on my file.

Yet the DWP claim that they are now much better at identifying claimants most likely to get an award and ‘This has allowed the exercise now to be focused on these claimants and ensure they receive payments as quickly as possible.’

So why are these claimants still waiting?

Rigged review

At every step of the way, the DWP have rigged this review so that only a tiny proportion, less than half of one percent rather than the 14% they originally claimed, of claimants will get an award.

And they have so arranged matters that hardly anyone will challenge the decision.

Yet as we saw above, the arrears involved amount to very considerable sums.

And in all cases the DWP gave in and handed over the money before the matter got to an appeal tribunal.

It’s almost as if there are details about the way this review is being carried out that they don’t want anyone to know about

But we will keep digging.

Claimant Overturns PIP Appeal Tribunal Decision Using Google Maps

April 19, 2021

With many thanks to Benefits And Work.

 

A claimant represented by the London Irish Centre has succeeded in getting an appeal tribunal decision overturned at the upper tribunal by submitting evidence about the distance from his home to a bus stop using Google Maps.

The claimant did not attend an appeal on their PIP claim at which a first-tier tribunal held that they were able to walk more than 50 metres but no more than 200 metres, scoring just 4 points. They based this on the time it took the claimant to walk to the bus stop in order to go to their local shop, which the tribunal estimated to be a distance of between 310 and 390 metres.

However, the claimant’s representative at the upper tribunal submitted evidence taken from Google Maps to the Upper Tribunal showing that the distance was in fact just 140 metres.

Ordinarily, the upper tribunal does not consider new facts when considering a case.

However, the upper tribunal judge in this case set out the grounds on which the upper tribunal can accept new evidence and found that they were satisfied in this case.

In particular, the claimant’s representative argued that “plotting the precise distance in metres between an address and a (non-address) landmark, with details of incline, specifying that the journey was to be undertaken on foot, and placing the information in a readily understandable format for presentation in evidence involved considerable skill” that neither the claimant nor their original representative possessed.

The case was returned to a new first-tier tribunal for a full rehearing.

You can download a copy of the full decision here.

Lego’s Braille Bricks In Use

April 16, 2021

At Legoland in Melbourne, Australia.

Young Woman Left In Wheelchair By Endometriosis

April 15, 2021

A 23-year-old woman who begged doctors to remove her womb to relieve chronic pain says the surgery is being refused due to her age and childless status.

Hannah Lockhart has endometriosis, a condition that can cause debilitating pain, heavy periods and infertility.

Although she has always wanted her own children, Hannah says her daily pain is now so severe she wants a hysterectomy.

“It’s heartbreaking that just because I’m so young I have to keep suffering,” she told the BBC’s Evening Extra.

Ms Lockhart, from Bangor in County Down, has been in hospital seven times in the past year because of crippling pain from endometriosis.

  • Listen to Hannah Lockhart tell her story to BBC Radio Ulster’s Evening Extra here.

“Every single day I’m taking morphine, I’m taking different tablets for nerves to try and stop the pain and nothing works,” she said.

The condition occurs when bodily tissue similar to the lining of the womb starts to grow in other parts of the body.

Ms Lockhart’s problems began in her early teens. By the end of last year she was having difficulty walking and had to use a wheelchair just to be able to leave her house.

“This is far, far more than a sore, heavy period every month – it has damaged several different areas of my body now,” she said.

‘Love and the life you provide make you a mother’

Complications from the disease mean she needs a urinary catheter to go to the toilet and, after emergency surgery last summer, she is already going through the menopause.

“Endometriosis affects a lot more than just your ovaries and your womb,” she said.

“Mine has spread to my bowel, it’s right through to my back and it has also completely damaged my bladder to the point that I can no longer use the bathroom myself.”

Ms Lockhart is engaged to be married and she and her husband-to-be had been looking forward to starting a family in a few years’ time.

However, the severity of her recent symptoms led to Hannah “pleading” with doctors for a hysterectomy.

“Last June after I had the surgery, I was put into early menopause so that’s something that I’ve been going through… and I will go through for at least another year now.

“Being in menopause at 23 – it’s not very nice at all.

“I have to take hormone replacement therapy (HRT) every day to try and calm down my symptoms that come with it.”

Presentational grey line

What is endometriosis?

  • It is a condition where tissue similar to the lining of the womb grows elsewhere inside the body – often around reproductive organs, bowel and bladder
  • Like the womb lining, tissue builds up every month then bleeds
  • However, unlike a period there is no way for the blood to escape
  • The build-up of trapped blood can result in internal lesions and scar tissue
  • Some people experience no symptoms but for many others the pain can be debilitating and the condition can lead to infertility
  • There is no known cause or cure for the condition

Presentational grey line

At first she found the prospect of infertility more of a struggle than coping with her physical pain, but the couple have since made inquiries about adoption.

“I don’t think I will ever get over the fact that I won’t have my own children naturally – that’s hard to come to terms with.

“But at the end of the day I know that it’s not giving birth to a child that makes you a mum – it’s the love and the life that you provide for that child that makes you a mother.

“So I hold on to that and the hope that some day I’ll be able to give that child a loving home.”

Ms Lockhart’s father, Peter, agrees with her belief that doctors’ reluctance to perform a hysterectomy is due to her young age and the fact she is childless.

“Had she been an older woman who already had children, not a problem – they can deal with it in a more aggressive manner,” he said.

He said it was “very, very difficult” to witness his daughter in such pain and has called on medics to treat her as an individual, rather than making decisions solely based on her age.

“How I see it is: If I’m in this much pain, what use am I to any child as a mother?” said Ms Lockhart.

“I couldn’t pick my child up, I couldn’t do what a mother is supposed to do.

“So I need them to do whatever it takes to make me better in order for me to be able to be a mother to a child in later years.”

BBC News NI has contacted Ms Lockhart’s health trust for a response to the issues she raised.

‘Direct Discrimination’: Extremely Vulnerable Fans Barred From Carabao Cup Final

April 14, 2021

The decision to bar clinically extremely vulnerable supporters from the Carabao Cup final is “direct discrimination”, according to a group of disabled Tottenham fans.

Manchester City and Tottenham have each been allocated 2,000 tickets for the match on 25 April, which is part of the government-led events research programme (ERP), a pilot scheme looking at how to get spectators safely into venues amid the pandemic.

The ERP does not allow for those classed as clinically extremely vulnerable (CEV) or those living with them to attend. SpursAbility said it was extremely disappointed, and asked for the decision to be reviewed.

“A number of our members and supporters will fall into this [CEV] classification under recent Covid-19 guidance and have also endured long shielding periods,” the group said in a statement. “However, most of them will have had their first and second vaccinations and are at considerably lower risk than those who are yet to be vaccinated.Advertisement

“Government guidance places those aged 70 or over at an equal or higher risk category yet there is no exclusion issue for anyone in these higher-risk groups. The policy adopted for this match is a direct discrimination toward many disabled supporters.

“Some of our supporters have been shielding for over 12 months and have seen this match as an opportunity to return to some form of normal lifestyle. The match is allowing only 8,000 spectators in an outdoor stadium with a capacity of 90,000 – less than 9% of its potential. Yet there is a choice to exclude a small group of supporters who would need to disclose their classification on a voluntary basis.

“At the moment a CEV person who has had the coronavirus and recovered and has subsequently received two vaccine doses is a considerably lesser risk compared with a 40-year-old who may well have unknown health issues. Is this fair and reasonable?

“We ask that this criteria in the government-led research programme for reopening live events to the general public be reviewed. Returning to live matches again is the lifeline needed by many disabled supporters to maintain their mental health after long periods of forced isolation, yet they are being precluded on outdated advice and a broad-brush approach open to abuse in so many ways.”

The Department for Digital, Culture, Media and Sport has been approached for a response.https://www.theguardian.com/email/form/plaintone/the-recapSign up to The Recap, our weekly email of editors’ picks.

Under-18s are also not allowed to attend the match. Those fans eligible for a ticket must take PCR Covid tests before and five days after the final, and must travel to a local lateral flow testing site to provide proof of a negative test within 24 hours of the final.

This proof will enable them to gain entry to Wembley, and in the case of City fans will be needed to access specially chartered trains and coaches from Manchester. City said 1500 spaces would be available via these trains and coaches, and 250 car parking spaces would be available at Wembley. The final 250 tickets would be sold to City fans in London and the home counties, who would need to make their own travel arrangements.

Hannah Cockroft: ‘Duke Of Edinburgh’s Award Inspired Me’

April 14, 2021

A wheelchair racer said taking part in the Duke of Edinburgh’s Award helped start her Paralympic career.

Hannah Cockroft MBE, DL has won five Paralympic, 10 world and two European titles, in the 100m, 400m and 800m T34 races.

She said the physical part of the award was her “step” into sport.

She has since given out gold Duke of Edinburgh’s Awards and said Prince Philip was “so interested” in every participant’s story.

Ms Cockroft, who is from Halifax, West Yorkshire, and studied at Coventry University, completed her bronze award at school.

“[It] completely pushed me out of my comfort zone. I was 14 years old, and as a disabled child I relied on my parents a lot so the Duke of Edinburgh’s Award really gave me the confidence of independence.

“The Duke of Edinburgh’s Award is made up of four different sections and one of them is to learn a physical skill which was my step into Paralympic sport.

“You probably could say without the Duke of Edinburgh’s Award I wouldn’t be a Paralympic champion.”

Ms Cockroft, who met Prince Philip several times, said he was a “lovely man” who “immediately put you at ease”.

She added: “I remember when I met him one of the first times he was really worried about how to address me as a wheelchair user.

“He was saying, ‘I am worried I can’t look you in the eye. Do you want me to crouch down next to you? Do you mind if I stand up and look down on you, but that doesn’t seem right’.

“He was really concerned as to the etiquette of speaking to a wheelchair user,” she said.

“The fact that he took the time out to genuinely wonder and worry about how to do that was massive.”

Sound Of Metal Review

April 13, 2021

The existential issue of disability is worried at in this vehemently acted addiction-recovery drama about a heavy-metal drummer who suddenly experiences hearing loss. Clearly, very personal experiences are here being transformed into fiction. Director and co-writer Darius Marder has avowedly based his movie in part on his hearing-impaired grandmother, and partly on an abandoned docu-drama project he was developing 10 years ago with director Derek Cianfrance called Metalhead, in which the real-life mega-decibel metal duo Jucifer were going to play a version of themselves in which the drummer is imagined to be (unsurprisingly) going deaf. Yet in this film, hearing loss isn’t the only issue at stake.

Riz Ahmed gives a typically fierce and focused performance as Ruben, drummer with an avant-metal band called Blackgammon; his partner Lou (Olivia Cooke) is guitarist and singer. They tour around the United States in an RV playing to loyal metalhead fanbases, happy enough until Ruben realises he can’t hear anything – a terrifying aural fog on the soundtrack. The catastrophe is made even worse because he is a recovering heroin addict with serious relationship issues. Ruben’s sponsor suggests he applies to a radical therapeutic community run by a greying Vietnam veteran called Joe, in which role Paul Raci gives a quietly weighted and serious performance. Joe’s belief is that hearing-impaired people need to “learn how to be deaf”: to learn how to accept their condition as a valid alternative existence, and to find the stillness inside themselves which is the vital precondition for this learning process. But angry, bewildered Ruben is still planning to somehow get the money together for a costly, risky surgery that would restore some of his hearing – though that might mean selling his RV and his musical equipment, sabotaging the musical career that was supposedly the whole point.

Sound of Metal is a painful, thoughtful, sombre film that telescopes a long story into just a few months. Ruben pretty much immediately finds a doctor to give him the hearing tests, pretty much immediately finds a place in Joe’s community, pretty much immediately progresses from mutinous incomprehension to the beginnings of that surrendered wisdom that makes him an invaluable student-teacher for hearing-impaired kids. There’s a nice initial scene in which Ruben is invited to write his name on the board, and he truculently scrawls it in huge letters, making all the kids flinch. It’s the equivalent of yelling.

At first, it looks as if Sound of Metal is going to be all about the clash between Ruben and Joe and their differences of opinion. It’s actually not a million miles away from the difference in Children of a Lesser God (1979), between William Hurt’s idealistic teacher who believes in vocalisation and Marlee Matlin’s rebellious former student who opposes it in favour of sign language as something with a cultural authenticity of its own, though here the teacher/pupil attitude is reversed. But the narrative progresses beyond this, into something interestingly unfinished and unclosed, leading us to Lou’s own painful story, and her relationship with her father Richard (an intriguing if opaque cameo from Mathieu Amalric).

But how about Ruben’s drug problem? Is he going to relapse, or what? Or is the film trying to suggest that the world of heavy metal, so far from being an admirable artistic vocation or creative calling, is just itself a type of addiction – one, moreover, with an obvious disability risk? I’m not sure. This film could just as easily have been about a drummer going deaf who had no drug problem. Sound of Metal tries to do something else, something more complex, but it looks as if disability and addiction are uneasily muddled together, and the film never quite unravels the strands. But Ahmed’s performance clarifies the drama and delivers the meaning of Ruben’s final epiphany. He gives the film energy and point.

Sound of Metal is released on 12 April on Amazon Prime Video and on 17 May in cinemas.

Visually Impaired Users Complain After Rail Websites Go Greyscale For Prince Philip

April 13, 2021

A leading sight charity has stressed the need for inclusive web design after rail websites switched to black and white to mark Prince Philip’s death, leaving partially sighted people struggling.

Network Rail and National Rail websites turned from colour to greyscale on Monday morning in a tribute to the Duke of Edinburgh. The gesture backfired after customers highlighted accessibility issues and complained they could no longer use the website.

Other train operators, including CrossCountry and Northern rail, had also removed colour from their websites.

One Twitter user said: “National Rail have coloured their entire website grey to ‘mourn Prince Philip’, rendering the whole website completely useless to people with visual impairments. The UK has completely lost the plot.”

Robin Spinks, the innovation lead for the Royal National Institute of Blind People, said: “As someone who is registered severely sight impaired, good colour contrast on a website is incredibly important. A lack of this makes it difficult for me to read the content and causes headaches and eye strain. It leaves me feeling unwelcome as a customer.Advertisementhttps://179291935aa6616c7074e1c89a01d0d9.safeframe.googlesyndication.com/safeframe/1-0-38/html/container.html

“Although I can understand why an organisation might make a change to its website in circumstances such as this, any change should be inclusive and accessible so that all customers can continue to use the site as normal.

”Adherence to inclusive design standards should remain the most important aspect for all digital design, regardless of any changes made.”

Mikey Stillwell, a designer at the research, design and user experience agency Verj, who is colour-blind, said familiarity rather than accessibility was the issue.

He said: “In terms of [an] accessibility standpoint, I can’t really see too much of an issue because there’s loads of contrast on the website. But from a UX [user experience] there is. When you have grey call to actions, for example, they’re normally seen as disabled or inactive. There is a total loss of hierarchy for what is important on a website as well if everything’s the same colour.”

Buckingham Palace announced that Prince Philip died on Friday morning aged 99. Many institutions across Britain marked their own tributes in respect. BBC broadcasters changed their ties to black, while there were also scheduling changes made to radio and television programming across the network for special coverage of the Prince’s death.

A spokesperson for National Rail said: “The National Rail Enquiries website has been temporarily greyscaled as a mark of respect following the death of HRH Duke of Edinburgh on Friday. We are listening to feedback about how people are using the website and are making further changes today to make it more accessible to all our customers.”

A Network Rail spokesperson said: “We temporarily made our website greyscale as a mark of respect following the death of HRH the Duke of Edinburgh. We’ve been made aware this has caused problems for people accessing the content so it’s now back to its usual look. We’re sorry it’s caused issues and we thank everyone for their feedback.”

Stars Urge Hollywood To Take Urgent Action On Disability Inclusion

April 12, 2021

More than 80 actors and entertainment industry professionals including Amy Poehler, Naomie Harris and Jessica Barden have signed an open letter against prejudice and discrimination towards disabled talent in Hollywood.

The letter says there’s an “urgent need to act on disability inclusion” and urges major studios to appoint permanent disability officers.

The number of disabled characters on screen “continues to severely under-represent the actual US population living with disabilities”, it says.

“Due to years of misrepresentation in the media, social barriers, and chronic ableism, the deaf, hard of hearing, neurodiverse and disabled communities continue to be underrepresented and disrespected in the entertainment industry.”

Around one in four adults in the US have some form of disability, according to government statistics.

A recent report found that 3.5% of TV series regular characters were disabled in 2020. A separate study put the number of disabled characters at 12% in 2018 – but found that most of the portrayals were negative.

A previous letter in 2019 said that, among the 61 Oscar nominees and 27 winners who had played characters with a disability, only two had been authentically portrayed by an actor with a disability.

‘Fundamental changes’

The new letter and the #DontDismissDis campaign have been organised by agent Keely Cat-Wells, who said she lost a job because of her disability when she was an actress.

“Covid-19 made productions recruit Covid officers and specialists to keep cast and crew members safe so they could keep accessing work, in order to save as many jobs as possible,” she said.

“The disabled community have faced threats, lost jobs and dealt with a lack of access long before Covid-19, and unlike this situation, there has been no drastic steps to provide security.”

The proposed disability officers would “make fundamental changes to dated practices” by giving decision-makers “the confidence to include, talk about and portray disability”, ensuring inclusive and accessible hiring practices, and identifying opportunities for disabled talent.

James Bond actress Harris, who is among the letter’s signatories, said: “If you show the injustice of the system and say, ‘Look, here’s a way forward’, it makes it more difficult for people to ignore.”

In an accompanying document titled Hollywood Horror Stories, disabled talent have anonymously detailed the discrimination they have faced.

‘Old and oppressive systems’

It includes stories of being asked questions like “what happened to you?”, “can you have sex” and “can you really not see?”, and instances where they say basic needs were not met even though castings specifically asked for disabled actors.

One actor said: “I was asked to audition where the audition room was up a flight of stairs with no elevator, the role specifically asked for someone who was disabled to play the role.”

Samantha Mannis, the author of Friend’s Guide To Adulting, was working as a writer for a renowned Hollywood studio when she was fired two weeks after a disability-related hospital stay.

“I had done my job, and spent thousands of dollars of my own money on Uber rides, and designer clothes so that I could fit in,” she said. “After fighting to get discharged from hospital so I could make it to my call time, they told me, ‘This just isn’t a good fit.'”

The letter’s authors say access and representation behind the scenes is just as bad if not worse, with hiring websites often not accessible.

Cat-Wells, who runs management company C Talent, which represents disabled talent, said: “Hollywood has many horror stories, the ones least told are those of the disabled community fighting to get seen, heard, and treated as equals.

“Hollywood needs to remove old and oppressive systems; This is not just about disabled actors, it’s about all jobs in the industry, there should be people with disabilities in every role from entry level to head office, the CEO and beyond.”

University Researchers Reveal Sanctions Targets And Prejudices Of Coalition Government And Warn They May Return

April 9, 2021

With many thanks to Benefits And Work.

In their paper, ‘Violent bureaucracy: a critical analysis of the British public employment service’ researchers examined the ‘institutionally violent’ claiming process between 2010 and 2015, when claimants were hit by a tidal wave of sanctions created by the Coalition government.

The carried out ten interviews with DWP front-line workers and managers from that period under conditions of strict anonymity, including not identifying even the gender of staff referred to in the research. The DWP staff all worked in different areas of the country and , between them, had over 200 years of experience as civil servants.

The authors look at how ‘Politicians intentionally rehashed and enflamed centuries’ worth of ‘scrounger’ discourses to fortify anti-welfare common sense and manufacture consent for austerity’

Newspapers were filled with anti-claimant propaganda, portraying claimants as ;parasites’, ‘fraudsters’ and migrants placing an increasing strain on public services.

This rhetoric heavily influenced, as intended, the way DWP staff regarded claimants:

there was a point at which s/he said, ‘It’s your money! It’s your taxes that they’re living off! You know, you should be sanctioning them!’

Another worker explained:

‘[it was] just work coaches sitting in the canteen at lunchtime saying how awful claimants were and how they were scroungers and liars and all the rest of it.’

DWP staff performance was no longer measured on a range of outcomes, but solely on ‘off-benefit flows’. Meanwhile private sector Work Programme providers were required to target the ‘hardest to help’ claimants including claimants with long-term health conditions and were required to refer claimants for sanctions.

Even though the government repeatedly claimed there were no national or local sanctions targets, the researchers found repeated evidence that there were.

One worker reported:

‘weekly team meetings. And s/he [team manager] used to produce a table which showed how many people you’ve sanctioned or how many people you’d referred to a decision-maker for a sanction.’

Another said:

‘certain staff would come [in the canteen] and say “well I’ve got my [sanctions] target for the week”’

One manager who had witnessed first-hand the harsh realities of the poverty experienced by claimants still got caught up in the targets regime:

‘it sounds sad doesn’t it, but when the figures were coming out of what the unemployed were prior to Universal Credit, it was like exciting: ‘Oh God, what have we got today?’ ‘How many have we got on the books?’ ‘Has it gone down by hundreds?’

In order to deal with the reality of the pain they were inflicting, staff blamed others:

‘yes people [managers] did pull the wool over my eyes [with sanctioning targets]. I’ll quite freely admit it. I don’t care, that’s their conscience, not mine’

Or they became emotionally detached:

‘I think it’s like you shut down the personal stuff, you’re there to do a job. . .we can’t become emotionally involved, can we?’

Or they saw themselves as having no choice:

‘The way I was treated, I had to abide by these rules that went against everything I thought and believed in’

Claimants were deliberately tricked into creating Claimant Commitments that they would not be able to keep in order to allow them to be sanctioned. One worker described how their manager got non-English speaking claimants to sign a Commitment that they would provide job search evidence written in English and then sanctioned them when they failed to do so

“s/he said to me, ‘you think I’m racist, don’t you?’ I said, ‘Well, I didn’t say that’. I never said ‘racist’, but I said, ‘How can you stand there and tell me that if I’m speaking a different language to the person in front of me, I can penalize them because I can be sure that they’ve understood what I’ve said?’ S/he said s/he would do that. That, that was right. S/he would do this Claimant Commitment and get them to sign it. So I said, ‘Well, I’m not going to sign it.’ S/he said, ‘Well, I’ll sign it.’ So I said. ‘You’re signing to say they’ve understood that?’ ‘Well, they’ve signed it, so they must understand.’”

Fortunately, that regime of aggressive sanctioning seems to have now ended as the DWP focuses desperately on trying to get universal credit to work with reduced staff numbers:

‘it’s changed now. It’s completely disappeared in our office. There is no manager putting any pressure on us to sanction. There is no conversation in communication meetings which says claimants are lying scroungers’.

However, the report’s authors warn that harsh treatment of claimants has often occurred during periods of austerity. With a hugely increased claimant count following the pandemic and a mass recruitment of work coaches, the scene may be set for a renewed crackdown.

And, as the authors also point out, with 80% of universal credit claimants expected to manage their claims online by 2024, DWP staff will be entirely shielded from the people they are inflicting harm upon.

You can download a full copy of ‘Violent bureaucracy: a critical analysis of the British public employment service.’

Tobias Weller’s Fundraising Pays For Sheffield Hospital Role

April 8, 2021

Young fundraiser ‘Captain Tobias’ says he feels “magnificent” after learning his donations will fund a new specialist children’s hospital post.

Tobias Weller, 10, from Sheffield, was inspired by Captain Sir Tom Moore to do a series of ongoing challenges during lockdown, raising more than £150,000.

Tobias, who has cerebral palsy and autism, split funds between his school and The Children’s Hospital Charity.

The charity said a new role would be created, based in his home city.

The two-year Children’s Exercise and Physical Activity Therapist post will be based at Ryegate Children’s Centre.

Tobias said: “It makes me feel magnificent.

“If another child managed to achieve what I have achieved because of my fundraising I’ll be chuffed to bits.”

His fundraising has been praised by Prime Minister Boris Johnson and Olympic gold medallist Dame Jessica Ennis-Hill, who joined him for the end of his second marathon in August.

Tobias met his hero, Captain Sir Tom, when he was awarded the first Captain Tom Young Unsung Hero of the Year award at the BBC’s Sports Personality of the Year event in December.

‘What a legacy’

His mum, Ruth Garbutt, said: “The Ryegate Centre plays a huge part in Tobias’ ongoing care.

“He has visited regularly since he was less than a year old, seeing a range of therapists and consultants who endeavour to help Tobias progress as much as possible.”

Tobias initially set out to raise £500 by walking 26.2 miles (42 km) over three months through his daily exercise in his Sheffield street, using a walker.

He is currently part-way through an Ironman challenge, adding 112 miles (180 km) on his tricycle and a 1.5-mile (2.4 km) swim to his marathon.

Ms Garbutt continued: “It is quite overwhelming to know that Tobias has raised money that will, potentially, change the lives of other children.

“We would both be delighted if one child was positively affected by his fundraising. The reality is that it is likely to affect many children’s lives. What a legacy that is.”

Esports Body Calls For Disability Gaming Tournaments

April 7, 2021

The British Esports Association (BEA) is calling for gaming tournaments to be held that cater exclusively to players with disabilities.

It comes after this year’s Association of Colleges’ FIFA Cup, which runs until May, included three disabled gamers.

It’s the first time gamers like Dan and Christopher (pictured above) have been able to take part.

Students play matches against opposing teams every week until May, and enter their results online.

After seeing students like Dan, from National Star college in Gloucestershire, taking part, BEA says it will push for wider accessibility for disabled gamers.

It says it will call on some of the biggest names in the technology industry to make that happen.

Tom Dore, from BEA, says: “We’re hoping that we can take what they’re doing as a pilot.

“We’re intending to speak to Microsoft about the opportunities to get a group of colleges like National Star involved in a pilot competition like this because the impact that they’ve seen is huge.”

Only a few years ago, it would have taken lots of money, specialist equipment and time to install an accessible controller if you have a disability.

Daniel has limited mobility in his hands and arms. He used adapted technology to take part, which was developed in 2018 by Microsoft.

It’s an Xbox Adaptive Controller, which has various switches he can control from the chair he uses everyday to take part in games.

The other players against him in the tournament weren’t aware of his disability.

Although Dan says it “means a lot” to him to be able to take part in the main Association of Colleges FIFA tournament, but he would prefer playing against other disabled gamers.

He says: “Being able to play real opponents is really hard because I play the game in a different way to them.

“I would like to be able to play against people who use the same technology as me so that it is fairer.”

Uber Ordered To Pay $1.1m To Blind Woman Refused Rides

April 7, 2021

Uber has been ordered to pay $1.1m (£795,000) to a blind woman who was refused rides on 14 occasions.

Lisa Irving said on some occasions, drivers were verbally abusive, or harassed her about transporting her guide dog, Bernie, in the car.

One driver allegedly cut her trip short after falsely claiming to have arrived at her destination.

An independent arbitrator ruled Uber’s drivers had illegally discriminated against her due to her condition.

It rejected Uber’s claim that the company itself was not liable, because, it argued, its drivers had the status of contractors rather than employees.

Mrs Irving, from San Francisco, said she had worried about her safety after being stranded multiple times late at night due to being rejected by drivers.

She also alleged that cancelled rides also led to her being late for work, which contributed to her being fired from her job.

The behaviour from drivers continued despite her complaining to Uber, she said.

A spokesman for Mrs Irving said: “Of all Americans who should be liberated by the rideshare revolution, the blind and visually impaired are among those who stand to benefit the most.

“The bottom line is that under the Americans with Disabilities Act, a guide dog should be able to go anywhere that a blind person can go.”

In a statement issued to media following the ruling, a spokesman for Uber said the company is “proud” of the help it offers blind passengers.

“Drivers using the Uber app are expected to serve riders with service animals and comply with accessibility and other laws, and we regularly provide education to drivers on that responsibility.

“Our dedicated team looks into each complaint and takes appropriate action,” he added.

It is not the first time Uber has faced a legal battle from the blind community.

In 2014, The National Federation of the Blind in the US sued the ride-sharing app over guide-dog regulations.

The case was settled in 2017 when Uber agreed to ensure its drivers knew they were legally obliged to provide service to people with guide dogs.

“I’m sorry it came to this,” Mrs Irving told the San Francisco Chronicle newspaper.

“I would have preferred that my civil rights be respected. But it sends a strong message that this is not acceptable.”

 

£12,000 For Claimant Who Challenged Sham PIP Review, But Many More Missing Out

April 7, 2021

With many thanks to Benefits And Work.

 

The DWP may be depriving 150,000 PIP claimants with mental health conditions of arrears of thousands of pounds each. One claimant who fought back, however, forced the department to hand over £12,000 in back payments.

The DWP has paid out £18 million so far to PIP claimants who lost out because of a legal error relating to the PIP mobility component, but this figure is a tiny fraction of the £3.7 billion the department said that putting right the error would cost by 2022.

LEAP review

The payments are made under what is known as the LEAP review, which began in June 2018 and involves the DWP looking through the cases of approximately 1.6 million PIP claimants.

In a decision known as MH, it was found that the DWP had been misapplying the law in relation to psychological distress and following the route of a journey.

Claimants should have been awarded the standard rate of PIP mobility if, because of overwhelming psychological distress, they needed someone with them to follow the route of an unfamiliar journey or if they could not undertake a journey at all.

And they should have been awarded the enhanced rate if they could not follow the route of a familiar journey without having someone with them for the same reason.

Instead the DWP had been awarding just 4 points, not enough for any award of the mobility component at all.

According to the DWP as part of the LEAP review:

“ We are looking at all current PIP claims to check if this change means you may be eligible for more support under PIP.

“We are also looking again at claims we decided on or after 28 November 2016 where we did not award PIP.

“We will not look again at your PIP claim if you have been getting the enhanced rate of both the daily living and mobility parts of PIP since 28 November 2016.

The LEAP review also relates to another case called RJ, in which the DWP was found to have got the law wrong in relation to safety and supervision. That issue is not covered in this article because, as you will see below, the DWP gave precise estimates for the number of claimants who would be affected by MH but they have not done so for RJ.

164,000 better-off claimants

In February 2017, the DWP published a document entitled Equality Analysis PIP Assessment Criteria’ as part of its attempt to change the law in order to overturn the decision in MH.

The attempt failed, but the document helpfully set out how many claimants would be likely to be eligible for a higher award if the law relating to the MH decision was not changed.

 The DWP said the estimate was based on ‘medical and policy expert advice, as well as a small in-depth exercise to look at actual cases’.

They estimated that of the PIP caseload at December 2016, prior to the judgement, 16% of the would be affected because they had a condition most likely to be relevant and scored mobility descriptor 1b. They gave a breakdown of numbers as follows:

 71,500 would move from no award to standard rate mobility

71,500 would move from no award to enhanced mobility

21,000 would move from standard mobility to enhanced mobility.

So a total of 164,000 claimants would be better-off. The cost for this and a separate error involving just 3,000 claimants was estimated to be £550 million for 2017/18, rising to a total of almost £3.7 billion for the whole period from 2017 to 2022, including back-payments and ongoing awards.

But according to the latest DWP figures, with 900,000 out of approximately 1.6 million MH cases already assessed, just 3,700 payments have been made at a cost of less than £19 million in arrears payments.

If the current rate of awards continues, fewer than 7,000 claimants will get an award. That is less than half of one percent as opposed to around 16% that the DWP experts had predicted.

Case study

We have heard from a claimant who contacted the DWP to ask for his award to be reviewed under the LEAP process.

Andrew (not his real name) has a severe mental health condition and is always accompanied in public as he is a danger to himself and others.

At his most recent planned PIP review he was awarded the enhanced mobility component on these grounds, and his condition has not changed for many years.

In early 2020 Andrew wrote to the DWP asking them to carry out a LEAP review, because he considered that he should be eligible for a back-payment of PIP.

Several months later, the DWP finally replied stating a review had been carried out over a year ago and enclosing a letter they claimed had been sent to him at the time. The letter explained there had been no change in his award as a result of the review.

Andrew replied saying that he had never received the letter and asked the DWP to look at the decision again.

In January 2021 Andrew applied to a tribunal after two mandatory reconsideration requests were simply ignored by the DWP.

When the case was accepted by HMCTS the DWP initially argued that it was out of time.

Andrew responded that he had never received the original letter, so the clock did not start ticking until he received the much later response to his request.

Andrew also raised the issue of the tiny proportion of reviewed cases getting an award, suggesting that no reasonable person acting reasonably could have made so few awards.

Suddenly the DWP agreed to carry out a mandatory reconsideration, thus causing the appeal to be struck out.

Soon after, £12,000 in back payments of enhanced rate PIP mobility component were paid into Andrew’s account.

What you can do

Andrew was fortunate to have someone supporting him throughout this legal process. Many claimants will have no access to help.

They will have had to survive for years on much less money than they were entitled to and are now being cynically deprived of a back-dated payment which could be life-changing.

Here at Benefits and Work we want to find out more about what is happening to claimants under what appears to be a bogus and potentially unlawful review process and try to see if there is a way to challenge it.

We have created a brief survey which we’re asking you to complete if you have received news from the DWP that your LEAP review has been unsuccessful.

You can complete the survey anonymously or leave your email address if you are happy to be contacted by us if we need further information.

Complete the LEAP survey

Webinar- Acupuncture For Pain: Your Questions Answered

April 6, 2021

Same Difference has been asked to publicise the below webinar. We do so with pleasure.

 

Patrick Thamotheram runs an acupuncture clinic in North West London which specialises in pain. Please contact him on 07746 960 760 or via his website: 
http://www.acupuncturelondonnorthwest.uk/

If you want to know more about what acupuncture can do for pain, join this free webinar being run by the British Acupuncture Council on 12 April.

The BAcC has put together a panel of three of the most senior acupuncturists in the UK to answer questions from the public about acupuncture. On the panel will be:

• Angela Hicks – Joint Principal and co-founder of the College of Integrated Chinese Medicine

• Felicity Moir – Chinese Medicine Practitioner and Educational Consultant

• Richard Blackwell – Principal at the Northern College of Acupuncture–

https://www.facebook.com/events/441344170289702/

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Riz Ahmed: ‘Listening Is Not Just With Your Ears’

April 6, 2021

Over the past year many people have been left with feelings of frustration, stillness, silence and loss due to the impact of the Covid-19 pandemic.

For UK actor Riz Ahmed his role as a US heavy metal drummer who is going deaf in the Oscar-nominated Sound of Metal is strangely relatable to those experiences.

“You’ve got a character who is very focused on his daily grind,” Ahmed tells BBC News. “Just like we are as a culture and a society, on the treadmill – a workaholic culture.

“Then we have a health crisis that suddenly throws him into a kind of purgatory, and in that lockdown limbo he’s forced to reassess what really matters to him.

“That’s a journey that so many of us have been on right now.”

But while his character Ruben, who is also a recovering drug addict, loses his hearing and sense of control, he does however gain access to a culture and community which give him a fresh perspective.

And it was a similar experience for Ahmed himself throughout the intensely rewarding seventh-month period it took to prepare for and complete the film.

The Londoner had to re-locate to New York, learn to beat the skins for real and become fluent in American Sign Language (ASL), in order to interact fully with a number of deaf actors – many of whom were also addicts in real life.

“This whole experience taught me the true meaning of the word listening – it’s not just something you do with your ears,” says Ahmed.

“I think [ASL instructor] Jeremy [Lee Stone] and the deaf community taught me what listening means: it means you listen with your whole body, with your attention, your energy.

“In the same way that I think they taught me the true meaning of communication is something that doesn’t just happen here [in the ears].”

Preparing for the role in a Brooklyn cafe in 2018, Ahmed put his communication skills to great use by striking up a conversation with a stranger who would go on to become his wife – the best-selling author Fatima Farheen Mirza.

“We were both jostling over the same laptop plug points, like a very modern way of meeting,” he recently told The Tonight Show host Jimmy Fallon.

Is it fair to say then that the movie – which last month received four Bafta and six Oscar nominations, including best picture and a “well deserved” best actor nod for Ahmed, according to BBC Arts editor Will Gompertz – has changed his life?

“I hope that every movie you do changes your life in some way,” he says. “When I did Four Lions it changed my life in a way, when I did Shifty it changed my life, same with [the Emmy-winning TV mini-series] The Night Of – it always changes your life.

“Sometimes it changes it in terms of your career and people having attention on it, and in other ways it changes in terms of your creative process and your personal growth.

“I guess the thing that’s really special about this film is it’s been all of those things. Creatively it has pushed me to go further and dig deeper than before.”

‘Not faking it’

In order to get his life back on track, Ruben has to put on hold his co-dependent relationship with his girlfriend Lou [Olivia Cooke], who is also the hard-rocking vocalist of their band Blackgammon, as he checks into a rural retreat for deaf people with addictions.

The welcoming facility is run by US army veteran Joe [fellow Oscar nominee Paul Raci], who lost his hearing while serving in the Vietnam War.

As a child of deaf adults (CODA), and himself a sign language interpreter, Raci was impressed with how “respectfully” Ahmed approached the role.

“He actually immersed himself, learned what the language meant, learned what the culture means, and I could see that on the set,” he says.

“We had interpreters on the set to help facilitate communication between the deaf actors, but Riz was actually communicating without an interpreter, having relationships with people.

“He was not faking it,” adds Raci, who works with the Deaf West Theatre group and is also the lead singer/signer in a Black Sabbath tribute act for deaf audiences.

‘Better representation’

Raci feels the deaf community, who he notes need “better representation” on-screen, will find it refreshing to see a three-dimensional and flawed character who just so happens to be losing his hearing.

Deaf people, he suggests, are often portrayed as “incidental characters” or used to provide “comic relief”, so the film could change perceptions among hearing people too.

“They have the same foibles, the same desires that you and I have,” Raci continues. “There’s only one thing – they can’t hear.”

First-time feature film director Darius Marder, who is also in the running for best original screenplay at this month’s Academy Awards, stresses authenticity was key in the five-year-long casting process for the project, which was in the offing for more than a decade.

Choosing native ASL-communicator Raci to play Joe (over stars like of Robert Duvall, Marder reveals) was an acknowledgment of the fact that deafness is as much a cultural thing as it is a physical one.

When it came to casting Ruben and Lou the filmmaker met with plenty of big names, who he says could have helped to “finance the movie” but were simply not up to the challenge.

“I just tried to scare them as much as possible to see if they were up for it, and they weren’t. No-one was up for that until Riz,” says Marder, who interviewed 75 people for the role.

“I knew how talented he is and that was not hard to see, but what I didn’t know is what an artist he is: how hungry he is for this intensely physical process and to live in this role with a foundation of a character that you’re going to feel in your bones.

“That’s a very specific kind of philosophy and he was down [with it].

“It was the same story casting Olivia,” he continues. “If Lou doesn’t hit it, and their relationship doesn’t feel legit, the whole movie doesn’t work.”

Cooke, whose character has a history of self-harm, learned to thrash the guitar and scream/sing with the help of Margaret Chardiet of the NYC band Pharmakon. Like Ahmed, she embraced the holistic approach to the production.

“We shot everything chronologically so it did feel like we were going through it,” says Cooke. “And because it was low budget and we had a very limited amount of film – because film is really expensive – we had two or three takes each.

“So we did just have to be on top of it, and in the emotion [of] the characters at all times.”

‘Point of hearing’

Another “character” in the film is the bold (and similarly Oscar-nominated) sound design which toggles between Ruben’s shifting hearing and non-hearing reality, using sounds taken from his throat and elsewhere on his body.

During the filming, Ahmed had audio blockers placed in his ears and white noise pumped in for certain scenes in which his character is feeling disorientated.

Marder describes the “point of hearing” perspective as “undiscovered cinematic territory” – intended to drag the viewer inside Ruben’s psyche.

Open captions are also burned onto the film throughout.

“It has to be unsettling,” explains Marder, who previously co-wrote the screenplay for The Place Beyond the Pines.

“You have to go through the ring of fire in this movie and if you don’t, you haven’t earned it. You have to trust the audience enough to be uncomfortable.”

Out of his comfort zone is precisely where Ahmed prefers to operate, the actor/rapper recently told Grounded with Louis Theroux.

As a burgeoning young MC from a Pakistani family living in Wembley, north west London, he attended top educational establishments such as Merchant Taylors and later Oxford University.

His experiences inadvertently helped to prepare him for a career as an actor, he shared on Theroux’s podcast, due to the constant need for “code-switching” and “shape-shifting” between his “rude boy” mates, family and school – and generally feeling out of place.

He never thought he would rap or act professionally, but a freestyle rap from his youth worked its way into his other recent film, the Bifa-winning Mogul Mowgli, which he also co-wrote and produced. It’s a deeply personal account of a British-Pakistani hip-hop talent who becomes seriously ill.

Ahmed’s latest solo album, 2020’s The Long Goodbye, saw him artfully tackle xenophobia and intolerance, in a multimedia manner thanks to a powerful accompanying short film and lockdown livestreamed gig – filmed on an iPhone.

Also during lockdown, he paid tribute to his uncle, who passed away due to Covid-19, via a spoken word piece entitled I Miss You. And last week, he joked online how other members of his family had been less than impressed with his Hollywood accolades.

‘The Riz test’

Sound of Metal, amongst other things, has seen the influential Ahmed become the first Muslim to be nominated for best actor at the Oscars – a ceremony which has been criticised for its lack of diversity, leading to award rule changes.

He’s keen to play less stereotypical roles these days and it’s perhaps worth underlining that Ruben’s religion or ethnicity are never once referred to in the new movie. The protagonist would almost certainly pass The Riz Test – criteria created in the star’s honour to measure how Muslims are portrayed on film and TV.

The lesson at the heart of the drummer’s hearing loss story, Ahmed believes, is that “underneath the differences that separate us, there’s this core of humanity that we can all tap into”.

Sound of Metal is out on 12 April on Amazon Prime Video, and has a proposed UK cinema release date of 17 May.

BREAKING NEWS: Thursday April 1st, 2021

April 1, 2021

Easter Bunny Comes Out Of Shielding

The Easter Bunny has been shielding against Coronavirus for the last year. At midnight tonight, he, like millions of humans across the UK, was allowed to come out of shielding.

He was naturally very excited to leave his burrow for the first time since last summer. He told Same Difference that he was very relieved that shielding has ended just in time for Good Friday so that human children can get their Easter eggs on time.

Humans attending vaccination centres throughout England today may have seen him. He has been on a tour of all of England’s vaccination centres by wheelchair today, giving out chocolate treats to parents and grandparents for the children they know. He will be touring the rest of the UK’s vaccination centres over Easter weekend.

Same Difference asked him what was the first thing he did outside his burrow. He told us how he went for a midnight wheel to a shop in search of carrots!

He joins us in wondering what shielding humans will do first today. We would all love to hear your out-of-shielding stories.

We wish you fun and laughter with your families this Easter weekend in the fresh air.

Matt Bush: Meet Britain’s First Para-Taekwondo World Champion

March 31, 2021

Matt Bush’s journey to the top of Para-taekwondo has been far from direct.

The 32-year-old tried football, rugby, tennis, golf, jiu-jitsu, mixed martial arts, javelin and shot put before he eventually made history in taekwondo.

In 2019, he became Britain’s first male world Para-taekwondo champion. A rapid rise after only taking up the sport two years earlier.

But by this point the Welshman was used to proving people wrong.

“When I first started doing boxing, you can’t go down the traditional path and patterns that people use in boxing, because they’re not made for someone with one arm,” Bush told BBC Sport Wales.

“So I had to apply a lot of thought to what I had to do, which I think made me better in a shorter time.

“The first jiu-jitsu academy I went to basically told me not to bother. They said it was going to be really difficult and tough,” he continues.

“I was like ‘it’s going to be fine’. Then soon it became ‘his grip’s tighter because he hasn’t got this and that’.

“It turns quickly to an advantage in people’s eyes.”

Paralympic dreams

Bush thought his first appearance at a Paralympics would come in 2016. He was Britain’s top male thrower in the F46 javelin but a shoulder injury ruled him out of the Rio Games.

A long-standing interest in mixed martial arts resulted in him turning to Para-taekwondo, which is to be included in the Paralympics for the first time at Tokyo 2020.

His first month in the sport was something of a baptism of fire.

“Within about three weeks, we were in Korea fighting against the number one guy in my category,” he recalls. “It was my first [taekwondo] fight ever.

“I tore both ligaments in my feet but won that fight. But had to go on in the tournament with torn ligaments, which wasn’t good!

“But I think with my background in kicking and fighting, they thought ‘he can handle himself’.”

Bush says he had a lot to learn in the sport – not least who the top names were.

He did not know who double Olympic champion and fellow Welsh athlete Jade Jones was when he first arrived at GB Taekwondo in Manchester.

Even since his historic world title win in 2019, Bush feels he has improved a lot.

“Before, I was just a mixed martial artist who was dabbling in taekwondo and doing his best, but now I’ve understood the game of taekwondo more,” he says.

“It takes time to learn the specific intricacies and the timing and the patterns of taekwondo. So that’s jumped so much over the last year.”

This is not a man who has dedicated his life to one goal.

A Paralympic medal would “mean a lot”, but he says as soon as it is over he will get another target. Perhaps in another sport or somewhere else entirely.

Balance is key for Bush.

He only trains on the GB Taekwondo elite programme every other week – with the remaining time spent helping out in the family business, which delivers dairy products across Wales.

“I’ve burnt out on sport before and I don’t want to do it again,” he says.

“I still train even the days I work – I just think it’s a good thing mentally to do.”

Bush still needs to confirm his place in Tokyo.

He hopes that the European qualification event in May will be where his Paralympic dream becomes reality.

PIP, ESA And UC Face-To-Face Assessments To Resume From May

March 30, 2021

With many thanks to Benefits And Work.

 

The DWP is reintroducing face-to-face assessments for some PIP, ESA and UC claimants from May 2021. The DWP say this will initially only be for claimants who cannot be fully assessed by other means.

According to a DWP press release, assessment centres are ‘fully compliant with COVID-19 safety measures’.

The DWP have issued detailed guidance for claimants asked to attend a face-to-face assessment, including claimants who are ‘clinically extremely vulnerable’. It includes information about who you can bring with you, the use of face coverings and how to socially distance within the assessment centre.

There is also detailed guidance for assessment providers.

You can read the full press release here

PIP, ESA And UC Video Assessments Rolled Out Across GB

March 30, 2021

With many thanks to Benefits And Work.

 

The DWP online magazine Touchbase has confirmed that video assessments are now being rolled out across Great Britain. This is being done without any consultation with disabled claimants as to whether they wish to be recorded on video or any explanation of how video assessments will be securely stored.

The brief article in Touchbase states:

“From this week disabled people could have a video assessment as the technology is rolled out across England, Scotland and Wales.

“People who have a Work Capability Assessment for Universal Credit or New-Style Employment and Support Allowance or make a new claim to Personal Independence Payment or the Industrial Injuries Disablement Benefit could be invited for this type of assessment.

“Video assessments will take place alongside existing telephone and paper-based assessments, which have been carried out throughout the pandemic. Face-to-face assessments for disability benefits currently remain suspended, but kept under review, aligned with the latest public health guidance.”

As we reported earlier this month, the law was changed from 25 March 2021 to allow for assessments ‘in person, by telephone or by video’.

The DWP have not said what platform they will be using for the video assessments or what equipment claimants will need to have in order to take part.

However, whilst no consultation took place prior to the introduction of video assessments, there is from today an online DWP feedback page for people who have been through the process.

As yet, Benefits and Work has not heard from any claimant who has had a video assessment, though we have heard from several where attempts to carry out a video assessment failed because of technical hitches.

If you do have a video assessment we would be very pleased to hear from you about your experience.

Sound Of Metal: Will Gompertz Reviews Oscar-Nominated Film Starring Riz Ahmed

March 29, 2021

Ruben Stone (Riz Ahmed) is a drummer in a heavy rock combo. Lou (Olivia Cooke) is on vocals. They are partners on stage and off – soulmates in sound and recovery.

He is a heroin addict four years clean, she has a history of self-harm.

The band has a nihilist vibe as she screams and roars into a mic accompanied by feedback, dissonance and Ruben’s impassioned drumming.

He likes to play shirtless, showing off his heavily tattooed torso with the words Please Kill Me scrawled in capitals across his chest.

They seem pretty hardcore at first, but looks can be deceptive as it quickly becomes apparent they are deeply in love having found a semblance of peace in each other’s company.

They’re on a never-ending American tour, driving around in an RV that is so cool you immediately think of booking yourself a coast-to-coast driving holiday and then realise you can’t because of Covid, but then you have to dream.

They do. Of a new album, of a life together, of the open road.

And then…

Ruben loses his hearing.

The doctor doesn’t know why, could be the music, could be an autoimmune problem. Either way it isn’t coming back and Ruben can’t expose what little hearing he has left to any more rock ‘n’ roll.

Game over.

Story begins.

Riz Ahmed is exceptional as the thwarted, scared, jumpy Ruben. He plays the character like a champion jockey, one moment he’s reining in Ruben’s brooding temper just before he explodes, the next he’s giving him his head to make a connection with pupils attending a school for deaf children.

His nomination for an Oscar is well-deserved.

Olivia Cooke also turns in a solid performance as Lou, Lauren Ridloff steals the screen as a deaf schoolteacher, and Paul Raci – who is also nominated for an Oscar (supporting actor) – does a fine job as Joe, the shamanic elder statesman and Vietnam veteran running a rural retreat for people who are deaf and have addictions.

Sound of Metal was co-written and directed by Darius Marder, a relative newcomer with a promising future.

At no point does he let you forget this is a film about the sensation of sound, from the ever-present subtitles to the constant switching between audio POVs: complete silence, natural sound, distorted interference. It’s unusual and effective and, unsurprisingly, the sound team are also nominated for an Oscar.

 

It does have shortcomings, although at a gently paced two hours, duration isn’t one of them. The plot lacks subtlety and depth. Ruben is taken to the edge but never forced to look over the precipice – instead he is allowed to exist in a comfort zone without the opportunity to fully reveal his character. And the binary position he is put in – either accept and embrace your hearing loss, or try to fix it and push off – is a little simplistic.

But Ahmed’s performance rises above any patchiness in the script to make this one of the season’s must-see movies.

Sound of Metal is available on Amazon Prime Video from 12 April and released in cinemas from 17 May.

Coronavirus And Shielding: ‘I’ve Only Left My Home Five Times This Year’

March 29, 2021

Within the month of September 2019 Michaela Hollywood flew across America eight times, such were the demands of a leadership programme she was on. Since coronavirus, however, she has only been able to leave her home five times.

In early 2020 Michaela was scrolling through the news when she found an article about a “weird virus in China”. As someone with health difficulties, the 30-year-old immediately started making changes to her life.

“I tried to stop touching any surfaces outside my home,” she says. “If I’d waited until the extremely clinically vulnerable letter had come in, who knows what would have happened.”

Michaela, from Northern Ireland, has spinal muscular atrophy (SMA), a genetic and degenerative condition which weakens muscles and impacts movement. She is a full-time wheelchair-user, is unable to sit-up unaided and her breathing muscles are paralysed.

Michaela went about life cautiously but continued with cinema trips and bingo with her mum – until her final night of freedom, although she didn’t know that when she went out.

“It was big money night at bingo,” she says. “My phone started flashing to say that we had community transmission in Northern Ireland, and I knew that would be it. I decided to shield.”

 

It was 12 March 2020 – one day after the World Health Organization declared Covid-19 a global pandemic.

At this point there was no guidance offered in the UK. Friends who had previously been part of Michaela’s medical team suggested she take “every precaution”.

She went from jet setting across America for her work in disability rights, to trying to settle into life at home under lockdown just six months later.

She lives with her parents, while her sisters, brother-in-law, nieces and nephews live in the next house along. “I still had family around me, so I know I’m really privileged,” she says.

But the initial weeks and months of lockdown were taken up with solving problems.

Michaela uses personal assistants to help with everyday tasks like washing and eating, but that became problematic when protective clothing, known as PPE, ran out because of high demand.

There was one way around it.

“Two of them moved in,” she says. “We have a spare room, but it was full of junk. So we had a day where we emptied the room. I’m really thankful to them for making it happen.”

While this newly-formed bubble solved one problem there were others.

Mastering the balance between having medication stocked at home and ordering new batches in time, while allowing for delays, was tricky. And food was a headache too. Michaela’s condition affects her ability to swallow and so while she can eat solid food, it needs to be soft.

For the first four months, securing online deliveries without food substituted for something she might not be able to eat was near-impossible and she relied on what she had stockpiled pre-lockdown.

“I lived on beans and soup,” she says. “Once I was able to get on to the register as a vulnerable person it wasn’t too bad.”

 

Then there was the mundanity of lockdown everyone has faced for a year too. But for Michaela there was no possibility of a walk outside or meeting a friend, socially distanced.

“I watched Star Wars for the first time, and I am still trying to watch every episode of The Simpsons. It’s all those little things that sound nothing but actually keep you busy.”

Although stuck inside, technology did open up the world for some disabled people.

“There was a sense of euphoria because all of a sudden there were events we could go to – there were concerts online, access to university,” Michaela says.

“I was looking at all these things and thinking how much better this is for our community.

“That’s not saying we would choose that every time, we wouldn’t, but we would certainly need it sometimes.”

It wasn’t being confined to the house which Michaela found most frustrating, but other people’s behaviour, including those who could but refused to wear masks.

“It’s not straightforward to shield when you’re also physically disabled,” she says. “I have to bring people in from the community into my house every day – I can’t stay in my room on my own.”

This was one reason why her PAs moved in, so she didn’t have to deal with a variety of agency staff.

Michaela also implemented her own rules – she wouldn’t step on ground beyond the house boundary until community transmissions stopped.

Come June, that possibility arrived when Northern Ireland recorded no new cases.

“I made the most of that,” she says.

‘Liquid gold’

Having got a new job to support disabled people with technology, Michaela hit the shops for new work clothes and managed to get a private cinema screening of Tenet, because no one else had booked.

She only had three other trips outdoors, all for medical appointments – X-rays, blood tests and her first Covid vaccination. It still felt like freedom.

“That was a period of grace for me and I still genuinely believe that it should have been two weeks for shielders to get out and have some respite,” she says.

Some European countries like Spain did implement a timetable to ensure everyone could enjoy time outside – something Michaela thinks the UK should think about next time.

Non-shielders were banned from going out during certain hours to allow those shielding or the over 70s to go out safely.

During the interview, Michaela’s phone rings and she says she has to take it, but wants to keep me on Zoom.

“You have just witnessed the greatest moment of my life,” she beams, looking slightly shocked as she ends the call.

“There’s a drug for my condition called Risdiplam that has just become available in Northern Ireland – I can only call it liquid gold.”

Risdiplam helps the body produce the protein that people with SMA are missing, which causes muscle weakness. It can halt the progression of SMA and may encourage improvements.

“For the first time ever, my speech should hopefully become clearer,” she says. “Wow – I might be able to lift my hand up to my mouth again.

“It’s turned the worst year of my life into one of the most changing.”

With Michaela’s first order arriving this week it brings hope that things are getting better.

In England and Wales 1 April signals the end of shielding. In Northern Ireland shielders are advised to continue taking extra precautions until further notice.

“I would need to know that community transmission has all but stopped before things change for me,” Michaela says.

But that doesn’t stop her dreaming about that day.

“There is an ice cream parlour, not far from here. It’s by the seaside and they do the most incredible ice cream.”

Man City & Liverpool To Participate In Mouthguard Study

March 26, 2021

Liverpool and Manchester City women’s and youth teams are set to use special mouthguards in training to assess the impact of heading the ball.

Already used in rugby, the mouthguards are able to collect data in real time and show how impacts affect the brain.

It will form part of a Premier League research project after concerns about the long-term dangers of heading.

In 2019, a study found professional footballers more likely to suffer from neurodegenerative brain disease.

The Premier League wants the research to be completed in months after accusations that football has been slow to act.

However, concussion substitutes and restrictions on heading in youth football have already been introduced this season.

On Tuesday, the Football Association’s chief medical officer Charlotte Cowie said football was “moving towards” changes to heading in professional training.

She said that the governing body’s research taskforce had recommended that youth team players “would only head the ball a maximum of 10 times in a training session, once a week”.

She added that similar changes to the professional game were “contingent” on how effective youth heading guidelines are with coaches and the success of the Premier League research.

Cowie explains that the “integrated mouthguards” would help “understand types of header” where forces might be different depending on how far the ball had travelled before impact.

“We want some more detail on that before we rule on the professional game, but we fully intend to do that and also in the adults grassroots game,” she added.

Man With Speech Aid Thanks Yorkshire Voice Donor Volunteers

March 26, 2021

A man whose speech aid makes him sound “American” has thanked voice donors after an appeal to help him speak in his native Yorkshire accent.

Richie Cottingham, from East Yorkshire, who has cerebral palsy, wanted to create a new voice so he could “sound like my family and friends”.

More than 35 people responded to the plea and three local men have now been chosen for their voices to be recorded.

“Once I have a new unique voice, I have an identity,” said Mr Cottingham.

“I would like to say thank you to all the volunteers who took the time and effort to apply,” said the 26-year-old, who lives near Howden.

Jennifer Benson, Mr Cottingham’s speech and language therapist, said: “We’ve been absolutely blown away by the response from people who’ve offered to donate their voice and sent in their videos for us to listen to.”

She said they were both “amazed” by the amount of support they had received as a result of the appeal.

“He’s over the moon with everything that’s happened.”

Of the 36 volunteers, 27 potential donors submitted voice recordings.

One volunteer, George Burns, said he felt obliged to offer his voice because “it’s something we all take for granted”.

Another would-be donor, Ryan McPherson, 29, said: “Covid’s taught me that, really, we need to try and do everything we can to help anybody.

“If it’s the littlest thing that might make that person’s life a little bit better, than I’m more than happy to help out where I can.”

image captionRyan McPherson is among 36 people who offered to be a voice donor

Mr Cottingham had hoped to select two local men, but instead has shortlisted three because they “all appealed to him”.

His new voice is being created by blending recordings of the shortlisted men.

Once created, it will then be installed on Mr Cottingham’s communication aid.

“I would like to say how good the experience has made me feel,” he added.

Concussion In Sport: Gordon Taylor Responds To Chris Sutton’s Dementia Criticism

March 25, 2021

Professional Footballers’ Association chief executive Gordon Taylor says his organisation has done “more than any other players’ union, sporting union or trade union” on the issue of dementia in football.

His comments came after former England striker Chris Sutton told a parliamentary hearing on Tuesday that Taylor had “blood on his hands” for ignoring the issue.

Sutton, whose father Mike – also a former footballer – died last year after suffering with dementia, said the PFA and Football Association had “not done enough” and called for the government to take control.

“They have ignored, they have shunned, they have turned their back on what has been a massive issue,” Sutton said.

“Hundreds of players have died – my father included. This is something we need to deal with, and deal with fast.

“It’s really important the government take ownership of this, because the FA and the PFA haven’t done anywhere near enough.”

The session also heard criticisms of football’s approach to brain injuries from campaigner Dawn Astle, whose father, former West Brom striker Jeff, was ruled to have died of a brain condition normally found in boxers.

In a statement to the BBC, Taylor, who is leaving his role at the end of the season, said support was offered to Sutton, and he was invited to the PFA to see their work on concussion and the “possible short- and long-term consequences of repetitive heading”.

Taylor added: “The invitation was never taken up but nevertheless, I believe we have done more than any other players’ union, sporting union or trade union on this issue when this is also a worldwide problem for governments and all populations, health services and neurologists alike.”

FA fails to state injury research figure

The FA’s failure to reveal during the hearing how much it spends on head-injury research left MPs “lost for words”.

During a Department of Culture, Media and Sport session into head injuries in sport, the FA’s chief medic Charlotte Cowie said she did not know the figure.

DCMS chair Julian Knight criticised Cowie’s failure to provide a figure.

“I am absolutely appalled. I think you’re too embarrassed,” Knight said.

In responding to questions about the level of FA funding into head injury research, Cowie said there was “no funding limit but we want it to be the best in answer to our research questions”.

Knight responded by saying: “I am staggered and I think this committee is staggered you have not come here today furnished with the information in terms of how much money you are spending on research in the last year.”

Conservative MP Heather Wheeler told Cowie: “I don’t know if I could do your job, love. I’m lost for words.”

Later in the session, the chief executive of the Rugby Football Union Bill Sweeney said that his organisation spent £350,000 on injuries, of which head injuries were a large part, and committed “millions” of pounds to ongoing research.https://emp.bbc.co.uk/emp/SMPj/2.39.19/iframe.htmlI can’t remember England games at World Cup, says 2003 winner Thompson

By comparison, the FA commits a six-figure sum, but finances are understood to be only one element to getting other research off the ground. Cowie said involving the right participants was one issue it had to contend with.

In response to criticism from Astle and Sutton, Cowie stated that the FA had contributed to the 2019 Field (Football’s Influence on Lifelong Health and Dementia Risk) study into neurodegenerative brain diseases.

That research found that former footballers were between two and five times more likely than the general population to die from degenerative brain diseases.

The governing body has proposed further research into the cause of increased risk of brain injuries in footballers and has ensured heading is reduced in training for under-18s. Players in those age ranges will head the ball a maximum 10 times in training during a single week.

Cowie told the committee: “They really are the most stringent heading guidelines that exist in a football governing body in the world at the moment and we are moving to heading guidelines in the professional game.”

She said introducing similar measures into professional football would depend on the results of a survey looking at the effectiveness of the youth football guidelines. Further work, she said, will also involve using specialist mouthguards that can help to measure the force and impact of different types of headers.

Cowie was also questioned on why football had chosen permanent substitutions over temporary ones used in rugby, saying: “The overwhelming view of the doctors who worked in football was this would work best as our model.”

But Sutton said the new substitutions laws “don’t have the players’ welfare and health at heart”.

He also estimated he had headed the ball 72,000 times in his career and called for clubs to limit heading in training to a maximum of 20 per session and allow a minimum of 48 hours between those sessions.

Covid-19: 700 Special School Staff Given Priority For Vaccine

March 25, 2021

About 700 staff in special schools have been given priority for vaccination against Covid-19.

That is according to the Department of Education (DE).

Officials from the department told MLAs on Stormont’s Education Committee that it represented about 25% of staff in special schools.

Committee Chair Chris Lyttle said many staff had been “failed and let down” by being excluded from the vaccination programme.

The Education Minister Peter Weir also told MLAs that schools were, “largely speaking”, “a very safe place” against transmission of Covid-19.

Primary children in P4 to P7 and post-primary pupils in years 12 to 14 resumed face-to-face teaching on Monday 22 March.

Pupils in years P1 to P3, nursery and pre-school children, had already returned on 8 March for the first time since before Christmas.

Mr Lyttle asked Mr Weir what scientific and medical evidence had informed the return of schools.

“The position I suppose in terms of the medical and scientific advice has been that largely speaking, schools themselves – particularly with the mitigations – are a very safe place,” Mr Weir replied.

“The concern was always around what the broader behavioural impact of a return to schools or indeed where schools were sitting and what impact that would have on the R rate.

“Any form of relaxation that the executive makes in any direction will have some level of impact.”

Mr Weir said that the extent of Northern Ireland’s vaccination programme and its impact was important as children and young people were “least at risk” of becoming seriously ill from Covid.

“The R rate itself is only really a measure, largely speaking to actually what really matters which is what are the level of hospitalisations? What are the level of deaths?” he said.

The minister also said that the Education Authority (EA) had received an initial supply of about 700,000 lateral flow device (LFD) tests for use in schools.

All school staff and senior pupils in years 12 to 14 are being encouraged to take LFD tests twice a week.

The committee’s vice-chair, Sinn Féin MLA Pat Sheehan, however, asked what contingency plans were in place for schools if infections rose again.

Mr Weir said the executive had taken a more “cautious approach” on the return to pupils in primary schools than England, Scotland, Wales and the Republic of Ireland – but he admitted that some schools would face disruption.

“Will this be 100% for everybody all the time? No, I don’t think that’s likely to be the case,” he said.

Health-led process

The executive had also previously agreed to prioritise some special school staff for vaccination.

However only a limited number of staff directly caring for clinically vulnerable children were given priority.

A departmental official, Ricky Irwin, told the committee that 700 special school staff had been identified as a result of what he said was a “health-led” process.

“It is probably about a quarter of teaching and non-teaching staff, which is around 2,600,” Mr Irwin said.

“We were relying on the trusts and the consultant paediatricians to identify the lists of clinically extremely vulnerable children and then the schools identify the groups of staff that support those children.”

Mr Weir said the executive consensus was that the vaccine roll out should be led by age rather than profession, but admitted it was “not probably” the ideal situation.

“Our ideal situation was that all special school staff would have been vaccinated,” he said.

Mr Weir also said that around 300 schools had initially expressed an interest in running summer schemes or schools for some pupils in 2021.

Family Facing Deportation From Australia Because Of Son’s CP

March 24, 2021

I can’t describe how sad and angry I am after reading this. I have Cerebral Palsy and am a British Asian. I have grown up in the UK. I can’t imagine anything like this happening here. The fact that this child was actually born in Australia just makes the situation 1000 times worse in my eyes.

 

Australia’s disability discrimination commissioner has called on the immigration minister, Alex Hawke, to intervene “in a humane way” in a case in which a family is facing deportation because their six-year-old son has a disability.

On Tuesday night Ben Gauntlett was quizzed at Senate estimates about the plight of Australian-born Kayaan Katyal, and his parents, Varun and Priyanka, who are facing deportation after being rejected for permanent residency last month.

The ABC, which revealed the case on Sunday, reported that the family had been told in a rejection letter that Kayaan would cost taxpayers $1.23m over 10 years, which “would be likely to result in a significant, undue cost to the Australian community in the areas of health care and/or community services”.

Varun moved to Australia from India 12 years ago and Priyanka has lived in the country for eight years, while Kayaan, who lives with cerebral palsy, was born in Australia.Two men killed in floods; state MP stands by statement on federal senator – as it happenedRead more

Gauntlett noted under questioning from the Greens senator Jordon Steele-John that he did not have the power to waive visa conditions, but said he was willing to advocate on the family’s behalf.

He said the immigration minister had the power to intervene in visa cases and was hopeful “the minister would exercise their discretion in a humane way in this instance”.

He said he also hoped the minister understood that Kayaan “has a lot to give to the society in which he lives, and his family does as well”.Advertisementhttps://f14a75f10793289bc9c83f4d86004755.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

“I would hope the minister would understand the importance of exercising their discretion or waiving visa conditions in this instance,” Gauntlett said.

Under a controversial section of Australia’s Migration Act, permanent visa applicants must meet a health requirement by demonstrating they are “free from any disease or condition” that would be a “significant healthcare and community service cost to the Australian community”.

The Department of Home Affairs has repeatedly insisted the law is not discriminatory and noted that people with disability are not automatically rejected.

But Gauntlett told Senate estimates there were questions about whether the law breached the UN convention on the rights of persons with disabilities.

“We would argue that there is a very viable argument that this is actually contrary to article 18 of the convention,” he said.

Australia’s health requirement was criticised by the UN in 2019 and has since been the subject of a campaign, Welcoming Disability, to overturn the law.

Gauntlett noted that Canada had changed a similar law, which the Trudeau government said in 2018 was “out of step with a “21st century approach to persons with disabilities”.

Steele-John, who also has cerebral palsy, said it was wrong to view people with disabilities as a cost to health system. He said a parliamentary inquiry had recommended a change to the law in 2010.

“This is not new conversation,” he said. “It concerns me greatly that a child with cerebral palsy is facing deportation simply because of their disability in a context where the NDIS system now recognises that disability is not a drain on the health system.

“In fact, it’s something that can people can receive support for so they can in fact contribute to society.”

The immigration minister was approached for comment.

Liverpool’s Vaccine Clinic For People With LD

March 24, 2021

When the radio presenter Jo Whiley spoke last month about the absurdity of being offered a Covid vaccine before her sister, who has diabetes and learning difficulties, the ensuing outcry prompted a change in government policy.

Within a fortnight, during which Whiley’s sister, Frances, was hospitalised for Covid, the government announced that all individuals on the learning disabilities register would be prioritised for a coronavirus vaccine.

But in Liverpool, learning disabled (LD) patients have been offered the chance to attend special clinics since before the government U-turn. The Central Liverpool GP Network, which has 106,000 patients across the city, invited the Guardian to attend one to see what adaptations are needed for this vulnerable group in society.Advertisementhttps://3f161ea1b4c302af1aa15c265f1a6394.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

The first, most obvious difference is how quiet the surgery is at Princes Park medical centre. Most coronavirus vaccine clinics tend to be noisy places, with marshals corralling people into the right queue, and the excited buzz of patients.

One mass site in Newcastle can rattle through 30 people every five minutes, but the Liverpool GPs have allocated 45 minutes per LD patient, which includes an annual health check. One patient is Gary Mason, who lives alone in sheltered accommodation.

“I just want to get the bloody thing done,” says the 59-year-old, who has turned up with a handwritten note given to him the previous day by his GP, telling him where and when to come for his jab.

He is ushered into a private room where Ioan Wardhaugh, a student doctor, slowly talks him through the vaccination process. Mason has already rolled up his sleeve, ready for another student doctor, Portia Amoako-Tawiah, to administer the dose. He giggles as she plunges the needle in, and insists afterwards he hasn’t felt a thing.

Not all LD people fully understand the risk of Covid, says Hilary Harper, a health facilitator for learning disabled patients in Merseyside: “There’s plenty of people who really don’t understand the need for isolation. There’s people who should be shielding, but because they live alone they’ve got no one to tell them.”

One of her regular patients was recently hospitalised for Covid and discharged himself home with tubes still attached after misunderstanding something a nurse had told him. “The nurse came around to see him and said ‘you’re doing really well, you should be going home soon.’ He literally got up and walked out because he interpreted what she said literally,” she said.

Other patients have worried incessantly, like Natalie Davies, 31, who has come for the jab with her mum, Josephine. She has autism and has been obsessed with Covid statistics, says Josephine. “I had to keep telling her to get off her phone and stop looking at the numbers. I’m really glad she’s had the vaccine now.”

For people with severe learning difficulties who do not have the mental capacity to consent, the decision on whether to give the vaccine can be more complex. On Friday a judge ruled that a man in this situation should have the jab despite his family’s objections.

The judge, based in Manchester, considered the case at a hearing in the court of protection. NHS Tameside and Glossop clinical commissioning group has responsibilities for the man’s treatment and had asked the judge to rule that vaccination was in his best interests as he was “clinically vulnerable”. However, the man’s father argued the vaccine had not been tested sufficiently, said it did not stop people contracting Covid and said the long-term side-effects on people with severe health issues were unknown.

The judge said the man’s father had outlined his concerns, which he said were founded on love, with “conviction and great clarity”, but he decided the family’s objections had “no clinical evidence base”. The health authority said the vaccine would not be administered if any form of physical intervention was required.

Sinead Heneghan, a GP and the Liverpool network’s LD champion, can’t understand why the government didn’t prioritise LD patients sooner. “We know that people with a learning disability have been disproportionately affected by Covid. They’re six times more likely to die from Covid, and those aged between 18 and 34 are 30 times more likely to die,” she says.

Many patients’ health has drastically deteriorated during lockdown. “The last clinic we did, we picked up so many health problems that wouldn’t have been identified if it wasn’t for us doing these health checks. Mental health was the big one. But we also picked up people who were having bleeding from the bottom or blood in the urine, or really bad chest issues,” says Heneghan.

“People with learning disability die decades earlier than the general population,” says Harper. “Red flags can can be missed with people who have learning disabilities, and those contribute towards early death.”

The government pays GPs £12.58 a jab, making small LD clinics such as Princes Park uneconomical. But Beth Lynch, a GP who is in charge of the Central Liverpool network vaccine rollout, says vaccinating this vulnerable cohort is not a burden.

“Investing in thorough, proactive care with this population, both in terms of Covid vaccination and top-to-toe health checks, proves vital in ensuring their health needs are met, both physically and holistically,” she says. “This prevents long, traumatic hospital admissions, which are so upsetting for our LD patients and their carers. Deciding whether to invest in equitable, proactive healthcare or traumatic unplanned hospital care is a complete no-brainer, and these patients deserve nothing but the former.”

Latest PIP Statistics, The Good And The Bad

March 24, 2021

With many thanks to Benefits And Work.

 

The chances of a successful new PIP claim fallen, but the success rate for mandatory reconsiderations is rising and the DWP are now more likely to give you a better award before your appeal hearing gets heard.

We’ve collected together some of the most important figures from the latest set of DWP PIP statistics and set them out below.

But for an even more condensed view, here are what we consider the stand-out stats:

  • Just 42% of new PIP claims are successful.
  • 33% of all PIP awards are at the highest rate for both components.
  • For new claims, in January 2021, 77% were for 2 years or less.
  • On review, 38% of all claims are reduced or stopped, just 18% are increased.
  • The success rate for mandatory reconsiderations was 33% for decisions made in the quarter July to September 2020.
  • The DWP increased the awards to 29% of PIP claimants who appealed, after mandatory reconsideration but before their case went to a hearing, in the 2019 to 2020 financial year.

Claim success rate 

From April 2013 to January 2021:

5.7 million claims to PIP were registered.

5.4 million claims have been cleared, with:

  • 42% of normal rules new claims,
  • 71% of normal rules DLA reassessment claims,
  • 99% of special rules terminal illness claims

receiving an award.

These figures include claimants who are disallowed prior to assessment or who fail to attend their assessment.

Award rates

One third (33%) received the highest level of awards (‘enhanced/enhanced’ rates) for both mobility and daily living components, and almost a further third (29%) received one component at the enhanced rate.

Almost one quarter (24%) received daily living award only, a few (4%) received mobility award only, and nearly three quarters (72%) received both.

Length of award

For new claims:

in January 2021, nearly three quarters (77%) of claims awarded were short term (0 to 2 years), less than one in ten (6%) were longer term (over 2 years) and less than one in ten (7%) were ongoing

For DLA reassessment claims:

in January 2021, short term 0 to 2 year awards were the most common award type (nearly half – 47% – of all claims awarded) followed by longer term claims over 2 years (30%) and ongoing awards (21%)

Review outcomes

For planned reviews of PIP awards

  • Award increased 18%
  • Award stays the same 44%
  • Award reduced 14%
  • Award withdrawn 24%

Claimants with psychiatric disorders are most likely to have their award decreased or disallowed (43%)

Mandatory reconsiderations

The DWP say that:

A new operational approach was introduced in 2019 when the Department began proactively contacting claimants, as appropriate, to collect further oral or written evidence at the MR stage. This saw a gradual increase in the proportion of awards changed since January 2019 (23%) to 40% in December 2019.

COVID-19 also had an impact on the proportion of awards changed with a sharp increase between 44% in March 2020 and 57% in April 2020

Claimants who were disallowed at initial decision were more likely to go on to register an MR (48% of decisions to disallow) or lodge an appeal (42% of MRs completed) than those who were awarded PIP (11% of decisions to award PIP and 34% of MRs completed)

Claimants who were disallowed at initial decision were less likely to have an award changed at MR (15%) or appeal (65% overturned) than those who were awarded PIP (27% of awards changed at MR and 74% of appeals overturned)

MRs resulting in a change to the award has remained at a similar level (33%) in the most recent quarter of initial decision (July to September 2020) to the previous quarter, and is 7 percentage points higher than the same quarter the previous year, reflecting a levelling off of the increase since 2017 to 2018

Appeals lapsed

A lapsed appeal is one where the DWP changes their decision to give the claimant a better award after the claimant has lodged an appeal.

Appeals lodged which were lapsed gradually increased from 2015 to 2016 to reach 29% in the 2019 to 2020 financial year.

From claim to appeal

For initial PIP decisions following an assessment during the period April 2013 to September 2020:

nearly one in five (19%) of completed MRs resulted in a change to the award (excluding withdrawn)

two in five (40%) of completed MRs then lodged an appeal

just over one in ten (13%) of appeals lodged were “lapsed” 

two thirds (67%) of the DWP decisions cleared at a tribunal hearing were “overturned” (which is where the decision is revised in favour of the claimant)

just under one in ten (9%) of all initial decisions following a PIP assessment have been appealed and around one in twenty (5%) have been overturned at a tribunal hearing

You can read the complete set of DWP statistics here.

Covid: Blind Woman Forces Government Action In Shielding Case

March 23, 2021

A blind woman who was sent a shielding letter she could not read has won “promising” commitments from the government after a legal challenge.

Sarah Leadbetter, from Narborough in Leicestershire, is classed as clinically extremely vulnerable.

However government correspondence advising her to shield was not sent in a format she could access – which she argued was discrimination.

The government agreed to review its communication with disabled people.

‘Promising step’

Ms Leadbetter, 45, who is registered blind, said she was “very proud” of the results of her legal challenge.

“This is a promising step,” she said.

“It shows we are being listened to. Everyone should get important documents sent to them in the format they ask for.”

She said she had repeatedly asked for information about her health to be emailed to her as she cannot use Braille and instead has technology that will read out electronic messages.

But she said this has always been denied and so when the shielding letter came through, her mother had to read it to her.

She added she is part of a social group of 19 people with the same condition as her, Bardet Biedl Syndrome, and only two had received the shielding information in a way they could access.

She said it made her feel less independent, denied her privacy and would not be an option for everyone.

The Royal National Institute of Blind People said they “regularly” heard of such cases and had been raising their concerns with the government “since the start of the pandemic”.

Ms Leadbetter and her lawyers, Leigh Day, argued her human rights and government standards had been breached and were granted a judicial review in the High Court.

They were supported by the Equality and Human Rights Commission (EHRC).

Before it could get to court, the Department of Health and Social Care (DHSC) made a number of agreements.

These included reconsidering how it communicates with people who are shielding, investigating how it can keep a better record of preferences and bringing in any changes within four months.

A DHSC spokesperson said shielding letters were available in a variety of formats to make them accessible, and are sent electronically when someone has an email registered with their GP.

They added: “The government has supported disabled people throughout this pandemic and we continue to assess what further support can be offered, including options for providing accessible shielding information to patients directly.”

How PIP Aids And Appliances Are Used Against You And How To Fight Back

March 23, 2021

With many thanks to Benefits And Work.

 

The DWP have been waging a covert war against PIP claimants almost since the benefit was introduced, reducing the percentage of successful claims year after year. Our survey on aids and appliances shows that unfairly applying these rules is one of the ways they cut claimants’ points, whether you use aids or not. We are now arming members with more ways to fight back.

The war on points

There can be little doubt that the DWP are working quietly, behind the scenes, to find ways to reduce the number of successful claims.

Award rates for new claims have fallen relentlessly from almost 70% in 2014 down to 48% in the last six months.

Award rates for DLA to PIP reassessments have also fallen, from over 80% in 2014 to 61% in the last six months.

Yet the law in relation to PIP has not changed in ways that would explain this steady fall. If anything, successful court decisions in cases like MH and RJ should have led to an increase in the award rates.

We believe that the DWP is continually looking for ways to interpret the rules more restrictively, without openly changing them, in order to stop claimants qualifying.

And one important way that PIP points can be cut is by unfairly applying the aids and appliances rules.

Over 400 readers completed our survey on aids and appliances. We’ve used the information you gave us to help update and expand our PIP claims and reviews guide, with detailed advice on how to avoid losing points.

Your replies suggest that misusing the aids and appliances rules is now commonplace and it isn’t just happening on initial claims. We heard from claimants who have lost existing points when their award was reviewed because aids have now been suggested, when previously they weren’t.

The latest PIP figures show that whilst 18% of claimants have their award increased as the result of a planned review, 14% have it reduced and almost a quarter – 24% – lose it altogether.

Scoring points for aids and appliances

As most readers will know, you can score 2 points for many PIP activities if you need to use aids or appliances to carry them out. Aids can be anything from tipping kettles and sock-sliders to grab rails and shower stools.

Aids are a vital part of many claimants lives. We were introduced to some extremely inventive DIY aids by readers who completed our survey.

“Perfume to identify the colouring of the clothes on my hangers.”

“2 nappy pins and 2 pieces of string attached to the nappy pins. I attach each pin either side of my underpants waistband, trousers or pyjamas. Put the item of clothing on the floor, push in my feet and pull up the clothing using the string.”

Readers also told us about aids that we had never come across before, such as Microsoft Soundscape for visually impaired and blind people which gives lots of information about the area you are walking through and warns you of junctions and other hazards.

Or the Brain in Hand support system, which is particularly aimed at people with ASD, learning difficulties or anxiety. It is both an app and a link to a support system provided by real people.

But you also told us about your experience of the ways that the DWP use aids and appliances rules to reduce your points.

You don’t really need aids and appliances

Where you say you use aids, the DWP will often argue that you don’t really need them, you just prefer to use them and therefore you are not eligible for points for them.

They inferred that I did not need aids as I bought them myself.

Or they will argue that the items are not classed as aids.

DWP argued that even though I have Apps for my condition and anxiety that I cannot list them as an aid.

Or they will say that because you manage other activities that, in reality are not even remotely connected, you can manage the activity in question.

Their favourite task in this regard is driving a car, as these members discovered.

“[The DWP said] if I can drive then I have strong arms wrists and grip therefore I was fully capable of using kitchen aids and cooking a full meal.”

“DWP have stated on my recent review that because I can still drive I can use aids such as a back brush for washing; in fact they state it numerous times in the review. I shall be contacting them to point out that the movements and skills needed are not the same. Because I can still drive does not mean that I can manipulate a back brush or clean myself after using the loo!”

You only really need aids and appliances

The other side of the same coin is when you say that you are unable to carry out an activity or can only do so with help from another person.

Here, the DWP may argue that you only need to use an aid, which scores fewer points, rather than needing help.

Sometimes, an assessor will not even take the trouble to specify which aids should be used:

“In the assessment they just said I could use aids to help with cooking”

Tribunals, however, cannot do this following an upper tribunal decision – they must say which aids they have in mind.

More usually the assessor will specify which aids you could use, but often without checking with you whether you have ever tried using such an aid or what difficulties you might have with it.

The Assessment stated several instances where I needed aids and appliances rather than help. They did not take account of my misshapen painful fingers or lack of movement in arms when stating this. Also my ability to used aids and appliances for toilet needs because of pain and lack of movement.

In our survey, aids you told us that assessors used in order to refuse points for help, included:

A walk in shower with a seat – great if they’re going to pay for my bathroom to be converted. (Even though the legal test is your ability to get in and out of an unadapted bath or shower).

Potato peeler. I can’t as the grip gives me cramp with the repeated movement. It would take me hours!

A walking stick but I have both rheumatoid and osteoarthritis in my hands which makes using a walking stick more painful than walking without one

They said a perch stool to help me in kitchen without realising I said sitting hurts really bad.

Sadly, it’s not just the DWP that uses aids to reduce points. Even some tribunal judges will do it:

The judge in the appeal panel suggested an appliance that I put my vegetables in and press it down, it would chop up carrots etc. I have bad hands, carpel tunnel and arthritis. Together with nerve pain from shoulders and find it hard to grip anything. I had to say yes I would use the suggested aid, but it did not work for me.

This experience alone shows the importance of preparing in advance for the suggestion that you could use common aids.

Updated guide

It’s really important that you are aware of these tactics and, where possible we would advise dealing with them before the DWP or a tribunal can even use them.

The Benefits and Work PIP guide has always included a page on aids and appliances.

And our six step system for giving detailed evidence has always reminded readers to list any aids you use, explain why you use them and also to say if you need help when using them.

But we are now also advising you to consider explaining any reasons why you don’t use common aids, so that you’ve dealt with the issue before it has even been raised. Most common aids are listed in the guide under each activity.

It doesn’t guarantee that the DWP won’t still try to deny you points, but it does ensure that you have given consistent evidence from the outset and considerably improves your chances of a successful outcome.

And, if the assessor suggests aids without dealing with your reasons, it’s strong evidence that they failed to read your PIP2 properly and undermines the credibility of their assessment.

We’ve also greatly increased the information about aids and appliances in our PIP claims guide, with a five page section devoted solely to the subject.

We set out the legal definition of aids and appliances and provide links to important case law on the subject.

We list nine different ways to challenge the claim that you could use an aid or appliance instead of getting help, with brief examples for each.

For example, an aid may only solve part of the problem:

  • Even if something like an auto chopper is used, vegetables still have to be peeled and cut to a size small enough to fit in the auto-chopper.
  • Even if you use a timer to remind you to put food on the hob, you may still walk away and forget that you are cooking.
  • Or you may need not just reminding but also encouraging to undertake the activity, so a timer would only solve half the problem.

We suggest that you deal with these issues in your PIP2 form and at your assessment, rather than having to challenge them only after they have been used by the DWP to remove points or when they are suggested by a tribunal judge.

We also look at the three main ways that the DWP try to avoid giving points where you do use aids and offer you ways to counter these arguments too.

And we’ve even added a page on driving a car, looking at how the DWP try to use your ability against you and advising how to deal with this in advance, using the additional information section as well as sections on individual activities.

All of this means spending even more time on the painful business of completing a PIP2 form and preparing for an assessment. But as success rates for new claims continue to fall, and over a third of review claims are reduced or stopped altogether, it is almost certainly time well spent.

Members can download the latest edition of the PIP claims and reviews guide from the links on this page.

Cladding Crisis: ‘I Feel Constantly Sick And Stressed’

March 22, 2021

Georgie Hulme inherited her third floor flat in Manchester from her mother, who thought she was providing her daughter with home security for life.

Since then, inspections of the building in the wake of the Grenfell Tower fire have exposed major fire safety problems, including dangerous cladding.

Ms Hulme, 42, who has disabilities and can’t work, now fears bankruptcy due to spiralling repair bills.

“I feel constantly sick and stressed. These buildings were built unsafe, so no leaseholders should pay for something that’s not their fault,” said Ms Hulme.

Thousands of disabled leaseholders, often on low incomes or benefits, warn they are financially and physically trapped by Britain’s cladding crisis.

Ms Hulme has Tourette’s Syndrome and uses a text to speech device to communicate.

Her block, part of the Life Buildings apartment scheme in south Manchester, is less than 18 metres tall, which means it isn’t eligible for the government’s £5.1bn Building Safety Fund for cladding repairs.

Ms Hulme could be forced to take out a long-term government backed loan, capped at £50 per month, to fix the faults.

“I’ve been unable to work for many years and am reliant on state benefits. It’s impossible for me to access the sums of money needed,” she said. “Each day I panic that a bill will arrive.”

The developers of the building have folded, leaving leaseholders with no recourse to challenge them, or compel them to contribute to the remediation work.

The managing agents of the Life Buildings, Scanlans, said leaseholders who bought properties in good faith with appropriate certification have been placed in an “impossible position”.

“We are pursuing all avenues of available funding in support of leaseholders and will continue to do so,” a spokesperson told the BBC.

Emergency evacuation plans

As well as the economic burden, there are safety concerns about apartment blocks that come with cladding – how to escape in the event of a fire.

The Grenfell Tower Fire Inquiry has heard that at least 22 disabled people lived above the 10th floor of the 24-storey west London block at the time of the fire. The blaze, which broke out on 14 June 2017, killed 72 people.

The inquiry chairman, Sir Martin Moore-Bick, said personal emergency evacuation plans for disabled people should be required by law in all high-rise blocks – helping to protect more than 160,000 vulnerable people in England and Wales.

But the Home Office has proposed evacuation plans for far fewer disabled people.

Only about 5,300 disabled people who are living in tower blocks will have access to Waking Watch – a fire safety system where staff continually patrol all floors and the external areas of a high risk building to give warning to evacuate in the event of a fire. A consultation is ongoing.

Disability rights campaigners say the unique needs of those with mobility issues have been overlooked in the wider debate about cladding.

“We’re going to be pressing the government to make it law for these emergency evacuation plans to be the standard,” said Fazilet Hadi, head of policy at Disability Rights UK.

“The cladding crisis is having two enormous effects on disabled leaseholders. First, the costs are astronomical. Disabled people haven’t got the money to meet them.

“The second huge issue is people having the peace of mind that in a fire they have an emergency route to safety.”

‘Devastated and betrayed’

Disabled people are more likely than non-disabled people to face barriers to paid employment and work fewer hours, according to analysis from the Joseph Rowntree Foundation.

It’s estimated that four million people with disabilities in the UK are living in poverty. Yet many are now being asked to pay tens of thousands of pounds for building repairs and other interim fire safety measures.

Former solicitor Sarah Rennie, who is 35, has a muscle wasting condition and is supported by assistants 24 hours a day.

She bought her two-bedroom flat in Birmingham in 2008 with help from her parents. As a wheelchair user, it’s been specially adapted to her needs.

In 2019, Ms Rennie and 180 other leaseholders at Brindley House were told that their homes were wrapped in dangerous cladding.

Ms Rennie’s share of the repair bill could be more than £50,000, if the work isn’t covered by government funding.

“You feel very devastated and betrayed,” said Ms Rennie. “I would need to look at a second mortgage (to pay the bill), but for me that’s really difficult.

“I’ve already had a mortgage which I’ve paid off because I knew I would not be able to work longer due to my disability.”

She added that as a disabled person, often there is a feeling that one’s independence and control could be taken away at any point.

“I’ve just built up a small modest little life for myself and the fact that that could be taken away from me is frightening,” she said.

Ms Rennie, who works as an accessibility specialist in the transport sector, said other costs were going up rapidly too.

“My service charge alone is £500 a month and that covers insurance bills and fire warden patrols, known as Waking Watch. Many of us will be bankrupt before the works have even started.”

To add to her worries, the firefighting lift in Ms Rennie’s block does not meet fire standards.

As a wheelchair user, she has worked with her building’s management to get an evacuation chair and an emergency exit plan.

Elsewhere, others have not been so lucky and the debate around who should pay for these emergency plans has become toxic.

Ms Rennie said some disabled people have been told “you shouldn’t live in high rise blocks, you should be in a bungalow”.

The government says it is implementing the Phase 1 recommendations of the Grenfell Inquiry to ensure such a tragedy can never happen again.

“We continue to work with disability groups to improve accessible housing and to develop improved guidance for evacuation,” a government spokesperson said.

The government has also allocated £5bn to protect those in the highest risk buildings from unaffordable costs, but that funding “does not absolve building owners of the responsibility to ensure their buildings are safe”.

Ms Rennie and Ms Hulme have co-founded a new campaign group called CladDAG Leaseholder Disability Action Group, to raise awareness of the complex ways in which thousands of disabled leaseholders are affected by the escalating building safety crisis.

Dating & Disability – How To Navigate The Agencies

March 22, 2021

Recently journalist Lucy Webster wanted to join a matchmaking website but, before the company took her subscription fee, they warned she might find it difficult. Lucy was upset by the response and shared their email on social media.

On this week’s podcast we hear stories from disabled people who have used online dating agencies, as well as speaking to a representative from the industry. What should disabled people expect?

Protect, Respect, Connect: The Full Report Into DNACPR During Covid-19

March 22, 2021

Same Difference strongly believes that all human life is always equally valuable.

With this in mind, we strongly oppose DNACPR orders without the full permission of the patient or, if they lack capacity, their family. This permission should only be obtained after a full medical explanation of the individual case to the patient or the person who makes these decisions for them.

No one should ever feel forced into making this extremely important decision. No one should ever feel as if they have ‘signed their life away,’ as one father whose case is included in this report put it to his daughter on the phone.

Blanket DNACPRs on care homes, age groups or for a group of people with any disability are certainly unacceptable at the highest level in our view.

The report is full of details, many of them upsetting, of cases in which DNACPRs were used during the pandemic. Anyone interested in reading the full report can do so through the link above.

We feel that we must ask an upsetting but very important question. Many of us have seen the upsetting statistics about how much more likely people with disabilities are to die of Covid. We at Same Difference fully understand that many disabled people do have underlying health conditions that would make them more likely to contract a severe and life threatening level of Covid anyway. However, we now can’t help wondering whether the policies around DNACPRs used during the pandemic have played any role in the statistics around Covid, disability and death that we have found so worrying.

We call for all organisations to read this report, and on all medical professionals to never again place a DNACPR on any person without full explanation and full permission.

 

 

Report shows Government must act on “system in crisis”, National Deaf Children’s Society says

March 19, 2021

 A press release:

The National Deaf Children’s Society has responded to the new report from the Education Policy Institute and the Nuffield Foundation, which shows alarming inconsistencies in the support given to children with special educational needs and disabilities (SEND).

 

In response, Ian Noon, Head of Policy at the National Deaf Children’s Society, said: 

“This report is extremely concerning and it sadly confirms what parents of deaf children have been telling us for years. There were already wild fluctuations in the support given to children with SEND, and now Covid-19 has made things even worse. 

“All of these children are entitled to effective, tailored support at school and their teachers should get the specialist advice they need. This simply isn’t being delivered consistently and it’s the children who are left to struggle on alone. 

“The evidence is as clear as it is damning. It now falls to the Government to take stock of these findings, address a system in crisis and make real, lasting change through the upcoming SEND Review.”

Blanket ‘Do Not Resuscitate’ Orders Imposed On English Care Homes, Finds CQC

March 18, 2021

Blanket orders not to resuscitate some care home residents at the start of the Covid pandemic have been identified in a report by England’s care regulator.

A report published by the Care Quality Commission (CQC) found disturbing variations in people’s experiences of do not attempt cardiopulmonary resuscitation (DNACPR) decisions during the pandemic.

Best practice is for proper discussions to be held with the person involved and/or their relatives. While examples of good practice were identified, some people were not properly involved in decisions or were unaware that such an important decision about their care had been made. Poor record-keeping, and a lack of oversight and scrutiny of the decisions being made, was identified.

The report, Protect, respect, connect – decisions about living and dying well during Covid-19, calls for a ministerial oversight group – working with partners in health and social care, local government and the voluntary sector – to take responsibility for delivering improvements in this area.

The report surveyed a range of individuals and organisations, including care providers and members of the public, and identified:

  • Serious concerns about breaches of some individuals’ human rights
  • Significant increase in DNACPRs put in place in care homes at the beginning of the pandemic, from 16,876 to 26,555
  • 119 adult social care providers felt they had been subjected to blanket DNACPR decisions since the start of the pandemic
  • A GP sent DNACPR letters to care homes asking them to put blanket DNACPRs in place
  • In one care home a blanket DNACPR was applied to everyone over 80 with dementia

Healthcare professionals emphasise that resuscitation is both invasive and traumatic with only a 15-20% survival rate when performed in hospitals and a 5-10% success rate when performed outside hospitals.Advertisementhttps://8f28834ea9f52a9183e64d0304399682.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

However, concerns have been raised about both blanket DNACPR orders being put in place and such instructions being recorded on patients’ records without discussion or informed consent being given.

Eleanor Sturge lost her 62-year-old husband, who was in a care home following a stroke, to Covid last March. She was notified without any prior discussion that a blanket DNACPR was being placed on people in the care home. A letter from the GP stated: “Dear [care home resident relative]” and added that after looking at the medical notes and using a computer algorithm: “I realise there is less than one per cent chance of resuscitation being successful. For this reason I have signed a do not resuscitate order in their nursing notes.”

The Department of Health and Social Care asked CQC to conduct a rapid review of how DNACPR decisions were used during the coronavirus pandemic, building on concerns that they were being inappropriately applied to groups of people without their knowledge.

The first phase of a review by the CQC in December 2020 found that the orders were wrongly allocated to some care home residents during the Covid-19 pandemic, causing potentially avoidable deaths.

Rosie Benneyworth, the chief inspector of primary medical services and integrated care at the Care Quality Commission, said: “Personalised and compassionate advance care planning, including DNACPR decisions, is a vital part of good quality care. Done properly, it can offer reassurance and comfort for people and their loves ones – before and during difficult times. It is vital we get this right and ensure better end-of-life care as a whole health and social care system, with health and social care providers, local government and the voluntary sector working together.”

DNR Orders Reviewed By CQC

March 18, 2021

An official investigation will be published on Thursday 18 March, looking into the misuse of do not resuscitate orders.

Throughout the pandemic charities have highlighted that the orders, which limit the medical help that people can receive, have been repeatedly placed on people with learning disabilities without their families being consulted.

People with learning disabilities are up to six imes more likely to die of Covid than the general population.

The BBC has spoken to one family who say they didn’t know their sister was given a do not resuscitate order until she died.

Social Care Leaders Warn Of Funding ‘Cliff Edge’

March 18, 2021

Leading care organisations in England are warning of a “cliff edge” when emergency funding to support infection control and visits during the pandemic runs out in two weeks.

Some providers fear the financial pressure could force them to close.

They say the budget was a missed chance to tackle the short- and long-term funding crisis in adult social care.

In 2019, on his first day as prime minister, Boris Johnson committed to ‘fix the crisis in social care‘.

Ministers say they will bring forward proposals this year.

The emergency funds are to help care homes and home care services with additional Covid costs, including infection control, visiting measures and extra staffing.

Testing costs

The Victory Care home in Chatham, Kent, which normally cares for 60 people, has used some of its emergency money on staff to organise visits and testing.

“Everything from extra newsletters, Zoom calls, the telephone calls, and then there will be additional resources put into ensuring people are tested, ensuring the tests are logged so that we know what our team’s results are,” says Raina Summerson, chief executive of Agincare, which runs the home.

Gerry Smith, whose mother Julia moved there last October, is tested every time she visits.

“We haven’t got out of the pandemic yet, so we still need to keep the precautions going for a bit longer until everyone’s had the vaccine that’s going to have the vaccine and the numbers have dropped,” says Ms Smith.

But if emergency funding stops in two weeks, there are fears about the impact on care home visiting, testing and even the survival of some providers.

Ms Summerson says whilst Agincare is secure, the care homes and home care services she runs have seen wage bills rise between 10% and 18% during the pandemic.

But, she says, fee rates offered by councils and the NHS for the year ahead are mainly staying the same or increasing by 1-2%.

“We will still have costs related to additional staffing for visiting, we will still need to be doing testing regularly, we will still need to be doing robust – more so than usual – infection control procedures,” she says.

“Who will suffer through this lack of funding? People who desperately need services, and our workforce who have given so much over this last year. It feels like a real slap in the face for them.”

‘Missed chance’

The seven organisations who signed the statement call themselves an “unprecedented alliance” of local politicians, council social service directors, care providers and people who need support.

They say the absence of social care in the Budget was “disappointing and a missed chance to provide much-needed certainty”.

They want the government to publish its long-promised social care reform plan by the summer.

Long-term needs

Three years ago, Christie Michael and her mother Maria moved from one area where they were both eligible for council support to another with a very different approach.

Maria has regular epileptic seizures, renal failure and diabetes.

Christie has a rare condition that means her joints dislocate very easily.

But once they moved, Christie was not entitled to local authority funded help, and rather than four hours support a day, her mum was offered an hour and 15 minutes.

They say the council told them they would have to pay £75 a week towards the care.

“We decided to stop the care, we just could not afford it.

“We already needed food banks before when we were getting free care,” says Christie.

She is now her mother’s full-time carer.

“I feel like I owe her and I want to do it, but it means that I don’t have a life and it means that my physical health and my mental health is declining as well.”

Christie describes the care system as broken.

“I absolutely do not think you should get social care according to your postcode.

“It should be nationwide, available to everyone.”

The full list of signatories is:

  • Association of Directors of Adult Social Services
  • Local Government Association
  • Think Local Act Personal
  • Care Providers Alliance
  • Care and Support Alliance
  • Social Care Future
  • Social Care Institute for Excellence.

The Gruffalo: Scent Kit Brings Story To Life For Visually Impaired

March 17, 2021

A charity for the blind and partially sighted has produced a scent kit to accompany popular children’s storybook The Gruffalo.

Guide Dogs UK has created a kit of nasal inhalers to represent the Gruffalo and the four creatures who meet him, Snake, Fox, Owl and Mouse.

Mouse smells like cupcakes, Fox has the scent of freshly cut grass, Owl is a cup of tea and Snake has a smoky scent.

The Gruffalo has a leathery, farmyard smell evoking the deep, dark wood.

The much-loved story, written by Julia Donaldson and illustrated by Axel Scheffler, was first published in 1999.

It has sold more than 13 million copies, winning several prizes for children’s literature, and has been developed into plays on the West End and Broadway. It has also been adapted as an Oscar-nominated animated film.

‘Really fun’

Josie, eight, from Bath, said it was “really exciting” testing out the scent kit with her brother Wolf and father Roger Whalley.

She had a stroke at birth resulting in brain damage that caused cerebral vision impairment.

Josie said: “It’s exciting and really fun to listen to the story with the smells, it’s great to imagine the scenes with the scents.

“My favourite was the owl smell but the worst was the Gruffalo, which smelt like my dog’s poo.”

Mr Whalley said: “This concept is fantastic, it meant that Josie and her brother, who has no visual impairments, were equal.

“It’s a completely new way of experiencing the story where Josie talks about her imagination and discusses it with her brother – it’s very inclusive and we all loved it.”

Working with publishers Macmillan Children’s Books and Magic Light Pictures, Guide Dogs UK is giving 150 scent kits to families with visually impaired children that it supports.

BBC Young Reporter: ‘This Is The Real Tourette’s’

March 17, 2021

A teenage girl who has Tourette’s syndrome wants people to understand what it’s like to live with.

Wilamena, who is 14 and from Cornwall, is one of the BBC’s Young Reporters. She was diagnosed with the condition at the age of nine, and wants to get away from the portrayal of “the swearing disease”.

She’s been speaking to other musicians about their experiences and filmed and edited this video to investigate the effect of playing music on the involuntary movements or sounds, called tics, that people with Tourette’s can have.

Sound Of Metal Gets 6 Oscar Nominations

March 16, 2021

There has been a lot of talk about ethnic diversity at this year’s Oscars. This year’s nominees are the most ethnically diverse group ever, with 9 nominees from ethnic minorities.

Same Difference welcomes this warmly.

What we welcome even more warmly is the 6 nominations for Sound Of Metal, an Amazon Prime Video film about a hard rock drummer who loses his hearing.

One of these has gone to British Asian actor Riz Ahmed for best actor. The film has also been nominated for Best Picture, Best Supporting Actor, Best Original Screenplay, Best Film Editing and Best Sound.

We thank the Oscars for including a film with a disabled protagonist among its nominees. We wish the cast and crew every success.

For a bit of fun, here’s the trailer:

Covid: Judge Rules Man With Learning Difficulties Should Be Vaccinated

March 15, 2021

A man with severe learning difficulties should have a Covid-19 vaccine, despite his family’s objections, a judge ruled.

Specialists said the man, who is in his 30s, was “clinically vulnerable” and in a “priority group” for vaccination.

But the man’s parents objected and raised a number of concerns about alleged side-effects.

Judge Jonathan Butler agreed with NHS Tameside & Glossop Clinical Commissioning Group that vaccination was in his best interests.

The judge, who is based in Manchester, considered the case at a hearing in the Court of Protection, where issues relating to people who lack the mental capacity to make decisions are analysed.

He did not name the man in his written ruling, published on Friday.

A number of specialists involved in the man’s care all thought he should be vaccinated but his father claimed the vaccine had not been tested sufficiently and did not stop people contracting Covid-19.

He added the long-term side effects on people with severe health issues were unknown.

The man’s mother and brother agreed.

Judge Butler said the man’s father had outlined his concerns with “conviction and great clarity”.

‘No clinical base’

He added: “I have no doubt whatsoever that his objections are founded on a love for (his son) and a wish to ensure that he comes to no harm.

“His objections were not intrinsically illogical. They were certainly not deliberately obstructive.

“They were made upon the basis as to what he regards as being in the best interests of (his son).

“That concern for his son does him credit.”

But he said the family’s objections had “no clinical evidence base”.

He said the man was vulnerable and said there was “overwhelming objective evidence of the magnetic advantage of a vaccination”.

The judge said he had ruled that vaccination was in the man’s best interests, but had not authorised “physical intervention”.

Health authority bosses had said the vaccine would not be administered if any “form of physical intervention” was required.

DWP Changes To Face-To-Face Assessments For PIP And Other Health Benefits Coming This Month

March 15, 2021

The UK Government has passed legislation which will allow the Department for Work and Pensions (DWP) to invite health benefit claimants to participate in an assessment by video call.

From March 25, video calls will be an option for DWP health professionals when interviewing and assessing the needs of people making claims for Personal Independence Payment (PIP), Universal Credit and Employment Support Allowance (ESA).

Face-to-face consultations have been suspended since March 2020 due to the coronavirus pandemic and subsequent lockdown restrictions – these continue to be replaced by telephone and paper-based assessments.

The changes to legislation means that anyone applying for disability or health benefits may be invited to attend either a telephone, face-to-face or video call assessment as part of their application.

Legislation guidance states: “The amendments enable medical examinations and consultations to be conducted as between a claimant and an assessor approved by the Secretary of State in person, by telephone or by video as part of the process for determining entitlement to Industrial Injuries Disablement Benefit, Employment and Support Allowance, Personal Independence Payment and Universal Credit.”

The guidance added: “A full impact assessment has not been produced for this instrument as no, or no significant, impact on the private, voluntary or public sector is foreseen.”

In a letter to Justin Tomlinson MP, the Minister for Disabled People, Health and Work, about the changes to regulations, Dr Stephen Brien, Chair of the Social Security Advisory Committee (SSAC) wrote: “These regulations provide immediate legislative comfort for the Department who, in responding to the challenges arising from social distancing requirements that were introduced at the outset of the COVID-19 pandemic, has suspended face-to-face health assessments and is relying on telephony to maintain service delivery.Finance DailyPeople Born 1951-1991 (With No Life Insurance) Should Claim This Benefit In February 2021ReassuredPeople Born 1951 – 1979 Are In For A Treat This Marchby TaboolaSponsored Links

“Over the longer-term, the regulations also provide a legislative framework that will enable the Department and its providers to introduce a richer mix of assessment channels, providing a choice between face-to-face, telephone and video assessments.”138212091369

He added that the addition of video calls as an option “will help to improve customer service by enabling the Department to tailor the assessment channel to meet the needs of different claimants” and “help to ensure the most appropriate channel is used to enable an appropriate outcome for the claimant.”

The DWP has conducted research with claimants about their experience of telephone assessments during the pandemic and that the findings are due to be published in spring 2021.

You can read the Social Security (Claims and Payments, Employment and Support Allowance, Personal Independence Payment and Universal Credit) (Telephone and Video Assessment) (Amendment) Regulations 2021 legislation online here.

Guide Dogs For The Blind Backs Nottinghamshire Police Plan For Dog Theft Officer

March 15, 2021

A police force has said it will appoint a dedicated senior officer to tackle dog thefts in what it believes is the first move of its kind in the country.

It is estimated dog thefts have risen by 250% nationwide following increased demand during the pandemic.

Nottinghamshire Police said there had been “growing alarm” among dog owners over the problem.

A chief inspector will be appointed to the new role and the force said it will demand tougher sentences for offenders.

Deputy police and crime commissioner for Nottinghamshire, Emma Foody, said: “There is growing alarm, both locally and nationally, over the threat of dog theft.

“This has been fuelled by a number of distressing incidents which have eroded public confidence.”

In a recent survey of dog owners by the force, which attracted nearly 18,000 responses, more than 13,000 said they were now more fearful of walking their pets during the day.

Sue Dunn, who had her dog Sadie stolen in Newark in August last year, said it was “the worst day of my life”.

“I was really worried. My dog is everything to me,” she said.

Ms Dunn, who has now got her dog back, said the appointment of a dedicated officer in Nottinghamshire was “long overdue”.

Wayne May, from the organisation Dog Lost, said in October last year the level of dog thefts was the “worst” he had known in his 30-year career.

He put it down to criminals capitalising on the demand for dogs during the pandemic.

A well as a dedicated officer, the force said it would also issue new video guidance on keeping pets safe and work with dog welfare organisations to demand tougher sentences for offenders.

Guide Dogs for the Blind has already pledged their support.

Tim Stafford, from the charity, said: “This year, for the first time, we have been informed of a couple of incidents when someone has attempted to take a guide dog from its owner.

“While such incidents are very rare in relation to how many guide dog partnerships our charity supports, we are concerned about how fearful our guide dog owners are of being a potential target at the moment.”

New PIP2 ‘How Your Disability Affects You’ Form

March 12, 2021

With many thanks to Benefits And Work.

 

Claimants have begun receiving a new PIP2 ‘How Your Disability Affects You’ form in the last few days, though there has been no announcement from the DWP about any changes and it is not clear if this is a pilot or a wholesale change.

The new form is longer but actually has fewer questions.

The tick boxes for aids and appliances and for help from another person have gone.

For most activities you are asked, for example:

Does your condition affect you dressing and undressing.

No

Yes

There is then some standard text though the wording varies occasionally according to the activity:

For each difficulty, please tell us:

How often you have this difficulty – tell us about both good days and bad days

What the difficulty is

Why you have it, or how it relates to your condition

Any aids or adaptations you use, or help you get from another person

Any help you feel you need but do not get

Then there are two sample answers, for example:

“About three times a week, I have trouble dressing my upper body because my hands shake too much to do up the buttons on my shirt. I use a button hook to do the buttons on my shirt”

“Most days my partner has to remind me to get dressed during the day”

Most, but not all of the sample answers would lead to an award of points.

The set of questions followed by examples looks remarkably similar to the technique we use in our Benefits and Work PIP guides, though neither the questions nor the sample answers are as detailed. 

There is, however, a massive disparity between the size of the sample answers and the size of the box in which to give your own answer, which is a full side of A4 for most activities.  The onus seems now to be on the claimant to provide detailed information in a lengthy written format without the benefit of any tick boxes.

Managing your treatments has been split into two separate sections. There are now separate pages for monitoring changes/taking medication and for therapies at home.

Some activities have changed their names: Going out is now Planning and following a journey. Making decisions about money is now Managing money.

Some sections of the form have moved around: section 1 and section 2 seem to have changed places, for example.

We’ll provide more information once we know whether this is a small scale trial or a major change.

I Can’t Say My Name- Stammering In The Spotlight

March 12, 2021

Around one and a half million adults in the UK have a stammer. For some – it is obvious when they speak. For many others, it’s something they manage to hide – sometimes from even those closest to them.

Former Welsh international Mark Jones and actor Sir Michael Palin, whose father had a stammer, talk about the speech disorder.

I can’t say my name – Stammering in the Spotlight – is on BBC IPlayer.

You can get more information and help about stammering from the charity Stamma.

Cancer Patients ‘Lack Same Protection’ After First Jab Finds Small Study

March 11, 2021

Cancer patients are much less protected against Covid-19 than other people after one dose of the Pfizer vaccine, the first real-world study in this area suggests.

With a 12-week wait for the second dose this could leave them vulnerable, says the King’s College London and Francis Crick Institute research team.

An early second dose appeared to boost cancer patients’ protection.

Cancer charities are calling for the vaccine strategy to be reviewed.

But Cancer Research UK said the small study had not yet been reviewed by other scientists and people undergoing cancer treatment should continue to follow the advice of their doctors.

The government said it was focused on “saving lives” and the antibody response “was only part of the protection provided by the vaccine”.

About 1.2 million people at very high risk of being seriously ill with Covid-19 were prioritised for a first vaccine dose in the first phase of the UK rollout, which includes people with specific cancers.

The UK government decided to extend the gap between first and second jabs from three to 12 weeks in late December to give more people some protection as soon as possible.

Dr Sheeba Irshad, oncologist and senior study author from King’s College London, said the findings were “really worrying” and recommended an urgent review of the timing of doses for people in clinically extremely vulnerable groups.

“Until then, it is important that cancer patients continue to observe all public health measures in place such as social distancing and shielding when attending hospitals, even after vaccination,” she said.

The study, which recruited 205 people, included 151 with solid cancers, such as lung, breast and bowel, or blood cancers.

The researchers tested volunteers for antibodies and T-cells in their blood, which signals that the immune system can protect against illness from the virus in the future.

Three weeks after one dose, an antibody response was found in:

  • 39% of people with solid cancers
  • 13% of people with blood cancer
  • 97% of people with no cancer

Following a second dose three weeks after the first, which some cancer patients received, there was a sharp rise in their antibody response against the coronavirus, to 95%.

But among those who had to wait longer for their second dose, there was no real improvement in protection.

Five weeks after the first dose, an antibody response was detected in:

  • 43% of people with solid cancers
  • 8% of people with blood cancer
  • 100% of people with no cancer

In trials of the Pfizer vaccine, two doses were given three weeks apart and although a longer gap between doses works for healthy individuals, the researchers say cancer patients do not respond in the same way.

“One size does not fit all,” said Dr Irshad.

“Cancer treatments have profound effects on the immune system and cancer patients’ immune mechanisms are inferior.

“We need to be concerned about other vaccines for this population too – they do need a second dose quickly.”

Dr Irshad also said leaving people unprotected for many weeks could give new variants the space to emerge and allow the virus to spread among family members caring for patients.

People with compromised immune systems were not included in clinical trials of the vaccine, although previous studies suggested it may not work as well in this group.

‘Follow doctors’ advice’

Cancer Research UK said the small study was “interesting” but there could still be limitations with the results.

Martin Ledwick, the charity’s head information nurse, said: “We know that this information could be worrying, but anyone undergoing cancer treatment should continue to follow the advice of their doctors, and we encourage all who can to take up the vaccine.”

Breast Cancer Now has called on the UK’s vaccine committee, the JCVI, to “urgently review the evidence presented in this study and consider adapting its strategy” to give people with cancer both doses within three weeks.

Blood Cancer UK echoed this call, saying more research was needed urgently so that people don’t “face a future of shielding indefinitely, not knowing whether they are protected”. They added that blood cancer patients should still definitely have the vaccine.

Prof Adrian Hayday, study author from King’s College London and the Francis Crick Institute said: “The vaccine is very impressive in its impact on healthy individuals and our study shows that it can clearly bring immense benefit to cancer patients too, but in most cases this is only after boosting.”

The study will continue to follow cancer patients after their vaccinations for up to six months.

Ellie Challis: Tokyo Paralympics Hopeful Wants ‘To Do Things Everyone Says I Can’t’

March 11, 2021

For Ellie Challis, the swimming pool is her special place.

“Swimming gives me the most freedom and time to think. It’s just you and the water,” the Paralympic hopeful told BBC Sport.

“It is nice just to be able to get away from everything.

“I’m a teenager and I love my phone, but that’s the one time of the day when I’m not around it.”

In many ways, the 16-year-old is just like any other girl her age, but when she was just 16 months old, she developed meningitis.

The disease ravaged her tiny body and left her fighting for life, resulting in her having to have both legs amputated below the knee and both arms below the elbow.

But Challis, who has a twin sister Sophie, grew up in Essex with a passion for sport and a fierce determination which now means she is hoping to make a splash at the rearranged Tokyo Paralympics later this year.

And you underestimate her at your peril.

“I want to do things everyone says I can’t, just to prove them wrong,” she says.

“I’ve done lots of sports – I used to run on my prosthetic blades, I did trampolining in school, snowboarding, wheelchair football, netball and horse riding – although it’s just swimming now.

“For me, sport was the way to be involved with people and it has definitely helped me make friends and be more social.

“Everyone assumes you can’t do a lot until they actually meet you and see everything you can do. I pretty much do everything by myself. I don’t need much help with anything.

“I’ve recently learned to tie up my own hair, which was one thing I thought I’d never be able to do, but I’ve managed that!”

Her dad Paul was the driving force to get Ellie into the water so she could be safe on family holidays, but even he could never have imagined what his daughter has gone on to achieve.

“When we were on holiday, people just assumed I couldn’t swim,” she explains. “Dad would literally throw me into the pool – knowing I could – but everyone else would just be really shocked.

“I was about 10 before I learned to swim properly, and it was when I saw someone else who had lost their limbs that led me to think ‘Oh, I can do it’. It totally changed my mind.”

In para-swimming, there are 10 different sport classes for athletes with physical impairment, numbered 1-10 – the lower the number, the more severe the limitations.

Challis, who swims in the S3 category is the only elite British female in her class and the only Briton, male or female, in the S1-S4 categories.

The first time she raced against other S3 swimmers was at the 2019 World Championships in London, where, cheered on by friends and family, she announced herself on the international scene with a brilliant bronze in the 50m backstroke.

The event also saw her become a team-mate of her swimming hero Ellie Simmonds, whose 2012 Paralympic golds were another huge source of inspiration.

After a disrupted 2020 with the pandemic and the postponement of the Paralympics, Challis says that the extra 12 months preparation have helped her.

She’s based at the British Para-Swimming National Performance Centre in Manchester, she started her season with new British records in the 50m backstroke and 100m freestyle at the recent Manchester International Swim Meet, her first competition in almost a year.

She now needs to impress at next month’s British Para Swimming International in Sheffield, which doubles as the Paralympic trials.

“Initially, I was looking at going to Tokyo with no pressure and just to have the experience of being at a Games, because it is so different from any other competition, and then look towards Paris in 2024 when I’ll have learned more and I know what I want to do.

“But I’ve been able to get faster in lockdown, so it will be good to see where I am at trials. I think the Paralympics will be very different for everyone this time because nobody knows what anyone else is doing.”

Challis’ emergence onto the international scene has given particular pleasure to British Paralympian Fran Williamson, whose S3 domestic records she is now rewriting.

“My records have stood for a long time and for a while I thought they may never be broken,” says Williamson, who was born with cerebral palsy and won silver and bronze medals at the 2004 Athens Olympics and 2008 Beijing Games.

“I think many people assumed that was exactly what I wanted. But that’s not true.

“Ellie and I are very different athletes with different impairments, but it is great to see someone digging deep and finally taking my place in the GB line-up and be willing to put the hard work into achieving her goals.”

As well as swimming, Challis is studying cake making in college where learning to write with chocolate and baking a special vanilla sponge cake for her family at Christmas have been among her proudest achievements.

“I use the same equipment as everyone else but I have a sticky mat to put my bowl on so it doesn’t slip,” she explains.

“College gives me something else from swimming. If I was doing something related to sport, then it would still be about swimming.

“I wanted to do something different and have different friends.”

And she also wants be a trailblazer for what people with more severe impairments can achieve, both in and out of the pool.

“Hopefully more people like me can see me and think they can do sport as well – it doesn’t have to be swimming.

“I want to get the lower classes in para-swimming out there a bit more because people don’t know a lot about them and hopefully they will get more attention.

“It’s harder for disabled people to get involved in sport, but when you get involved you really enjoy it.”

Telephone And Video PIP And ESA Assessments Now Enshrined In Law

March 10, 2021

With many thanks to Benefits And Work.

 

The government has passed legislation allowing the DWP to require a PIP or ESA claimant to take part in an assessment by telephone or by video as alternatives to a face-to-face assessment.

The new regulations, came into force on 25 March and enshrine all three options in law.

In the case of PIP, the regulations already stipulated that an assessment could be in person or by telephone, but the words ‘or by video’ have now been added.

In the case of ESA, the words ‘in person, by telephone or by video’ have been added.

You can download the new regulations from this link.

Claimant Successfully Sues Atos And Sends In The Bailiffs When They Don’t Pay Up

March 10, 2021

With many thanks to Benefits And Work.

 

A claimant has successfully sued Atos for negligence and failure of duty of care and then sent in the bailiffs when they failed to pay up, the Disability News Service (DNS) has revealed.

The claimant, known as Rebecca, went to the County Court to ask for compensation because of the two year fight she had to get her PIP reinstated, after it was wrongly stopped following a PIP assessment in 2018.

Rebecca has epilepsy and a resulting heart condition, anxiety, depression and memory problems. Despite this, and the fact she was receiving the enhanced daily living component, she received zero points for daily living following her PIP assessment.

Fortunately, Rebecca had recorded her assessment.

The recording was listened to by an appeal panel, who then compared it to the assessor’s account of what had been said.

The panel then found in Rebecca’s favour, restoring her entitlement to the enhanced rate of the PIP daily living component until 2023.

Rebecca was so angry at the treatment she had received from Atos that she sued them through the County Court for ‘mental distress, anxiety and hardship’. Atos made no attempt to defend the claim.

The County Court found in Rebecca’s favour and awarded her compensation of eight per cent of the arears and a further £1,000 in damages. The final total was £2,500.

When Atos failed to pay up, Rebecca arranged for enforcement officers to visit their offices in London, resulting in an extra £2,000 in costs to the company, which finally had to pay up.

You can read the full story on the DNS website

Gordon McQueen: Daughter Hayley Wants Limit On Heading After Father’s Dementia Diagnosis

March 10, 2021

Hayley McQueen says there should be a change in the football laws to limit heading after her father, former Scotland defender Gordon, was diagnosed with vascular dementia.

McQueen wants future generations of footballers to be better protected now the risks are more widely known.

“You don’t go into football thinking you’re going to get brain damage,” she said.

“There are lots of footballers out there now thinking, ‘is it me next?'”

McQueen, a sports journalist and broadcaster, told BBC Breakfast’s Sally Nugent that her father has no regrets about his career because no-one knew of the potential risks.

The 68-year-old made almost 350 appearances for St Mirren, Leeds, Manchester United and Scotland between 1970 and 1985.

“I don’t think I realised how much my dad used his head,” said McQueen. “I didn’t realise that it was over and over and over in training for years and years.

“You go back to childhood and heading a ball against a brick wall because if you didn’t have anyone to play with, that’s what you did.

“There have been moments when I said I can’t believe that the thing that has given him so much love has so cruelly taken so much of him away from us.

“He scored some memorable headers. One of the pictures at home is him leaping into the air and scoring against England and he’s very proud of that.

“But he says maybe he would have done things different in training if they were warned. You can’t get angry about that; there is no-one to blame. They didn’t know, but we know now and someone will be to blame if we don’t do something about it.”

Research commissioned by the Football Association and the Professional Footballers’ Association (PFA) in 2019 found that former footballers are three and a half times more likely to die from degenerative brain diseases.

The study began after claims that former West Brom striker Jeff Astle died at the age of 59 because of repeated head trauma. Astle’s family has been campaigning for more research into the issue.

In response to that study, heading has been banned during training for children aged 11 and under in England, Scotland and Northern Ireland.

“Cutting out heading in under-11s is a massive step forward, but what about in teen years when your brain is still developing?” McQueen said. “Football might change because of it – but so what? If it’s saving people’s lives and their futures then does it really matter?

“There needs to be changes in the law. Not just at under-11 level; it needs to be right through the professional game.”

A parliamentary inquiry into the link between sport and long-term brain injury has been launched with Professor Willie Stewart, who led the 2019 research, among a number of experts due to appear before MPs on Tuesday.

The PFA has set up a taskforce to examine the issue of brain injury diseases in football. Some former players have also agreed to take part in studies looking into the impact of head injuries.

In a statement, the FA said it has helped to “lead the way in ground-breaking research into the links with football” and has “a clear and unwavering commitment, both financially and with resource, to support objective, robust and thorough research going forward”.

It added: “Collaboration across football’s governing bodies is key in order to better understand this important issue collectively, and we firmly believe that all areas of football should come together for this meaningful cause.”

Hear Women’s Voices On Head Injuries In Sport Say Female Rugby Players

March 9, 2021

A former Wales rugby player who had a seizure, sickness and memory loss says female athletes should be heard in the discussions around sport head injuries.

Retired flanker Nic Evans said she had no memories of her first appearance at Twickenham as a result of concussion.

The UK digital, culture, media and sport committee is to begin an inquiry into sport and long-term brain injury.

Governing body, World Rugby, said the welfare of all participants was its ongoing priority.

Evans, 43, who played for Wasps Ladies, will undergo tests this month to assess whether she is facing “the worst-case scenario” after suffering what she believes could be hundreds of concussions in her career.

Her first appearance at Twickenham should be a cherished memory but instead it is a blank.

“I don’t remember any of the game,” she said.

“I don’t remember playing, I remember before the game and then I remember being home in Wales and I think that happened throughout my playing career.”

Evans, originally from Caerphilly and now a lecturer, can recall one incident in which she was tip-tackled on to a dry, hard pitch resulting in a seizure lasting several minutes.

“I lost my [driving] licence for a year because they weren’t sure whether it was epilepsy or concussive seizure,” she said.

“That happened in the June, I was back in pre-season training in the July.

“I probably spent the whole of that year training and playing with really bad headaches, feeling really nauseous, feeling really sick.”

The player-turned-coach said, at the time, she just wanted to play rugby but she had not ever considered she could have been doing “long-term damage”.

“I wouldn’t have put myself at risk of not being able to live fully later in life,” the mother-of-three added.

On Tuesday, MPs will question consultant neuropathologist Prof Willie Stewart and neurodegenerative disease specialist Prof Craig Ritchie.

The DCMS committee will look at the role of national governing bodies, their responsibilities to understand risks involved for players, and what actions might be taken to mitigate them.

Debates about the links between sport – and specifically rugby – with serious head injury were sparked again when former Wales international Alix Popham and former England World cup winner Steve Thompson launched a legal action after being diagnosed with early onset dementia last year.

The Professional Footballers’ Association is also setting up a taskforce to further examine the issue of brain injury disease in football, following high profile campaigns by families of some former players.

Evans said: “I got really frustrated really because I read all these stories about the men in the game and I just thought we play too.

“I work within PE and sport and a lot of sports science research is about men, and only now are we starting to see sport science about women because we are different, our bodies are different, our physiology is different.

“Do the protocols need to be different because women suffer worse concussions? Maybe.

“I don’t have the answers but what I do think is really important is that women are at the table too. Our stories also need to be considered.”

Swansea University research from 2020 suggested female rugby players were at a greater risk of suffering concussion than men – and the effects were more severe.

Elizabeth Williams, a senior lecturer in biomedics, said men and women were more likely to suffer different kinds of head impacts and women’s brains may have a higher risk of injury when subjected to the same external force.

Tonia Antoniazzi, Labour’s Gower MP and a former Wales international prop, said putting the focus on the men’s game was a “flawed” approach.

“What concerns me is there are very few women’s voices about their injuries and how they’ve had an impact on their lives throughout concussion,” she said.

“We need to be talking about it.

“It also needs to be a kind of call to arms to all our sisters that have played rugby since the ’80s to just take notice if they have got any issues around memory, any issues really.

“It’s not being looked into.”

In a statement, World Rugby said it continued “to invest in and collaborate with women-specific research to inform our injury-prevention programmes”.

The organisation added it was equally important that preventative technique is promoted, such as its “Active programme, which, if used regularly, has the potential to reduce concussion risk by up to 60%”.

The Department for Digital, Culture, Media and Sport said the inquiry was “evidence led”.

It said it was “accepting written evidence to the end of this month”.

Where Is The Prize Money In Para-Sport?

March 9, 2021

Hannah Cockroft may be one of Britain’s most recognisable Paralympians but she often has to correct people when they presume her bank balance “has a lot of zeros” on the end of it.

“It always shocks them when I say I actually pay more to enter the race than I win at the end of it,” she says.

“People expect that as a Paralympic gold medallist I’m going to be in the same boat as Jess Ennis-Hill and Mo Farah, but I’m not. If you ever expect to come into this and be a millionaire, you’re in the wrong job.”

Para-sport is not cheap when the cost of wheelchairs and other specialist equipment is added on top of the usual list of expenses.

It doesn’t help then, that prize money in para-sport is almost “non-existent”.

As organiser of the Paralympic Games, the International Paralympic Committee (IPC) does not offer prize money at either its flagship event, or in any competitions for the 10 sports for which it acts as international federation, including athletics and swimming.

Similarly, the international governing bodies for most other sports do not offer prize money for para-sports – in fact, the BBC Sport Prize Money in Sport study found only three para-sports which do offer prize money at some events.

These are wheelchair tennis, marathon racing, and para-equestrian.

“I think to be honest, I’m used to it,” Cockroft – a five-time Paralympic and 12-time world champion – tells BBC Sport.

Where is prize money on offer?

At Wimbledon in 2019, winners in the wheelchair singles took home £46,000, an 84% increase on 2016, when singles was first introduced to the tournament.

Winners in the wheelchair doubles earned £18,000 per pair, while the quads singles champion won £34,000, and similar figures are up for grabs at the other three Grand Slams, though still considerably lower than the takings won in the non-disabled tournaments.

Likewise, in wheelchair racing, the winners of the major marathons can take home a lucrative prize. In 2020, the winners of the Boston Marathon earned $25,000 (£17,905), while the London Marathon champions won $20,000 (£14,315).

At the World Equestrian Games in 2018, Para-dressage champions won $4,000 (£2,890), while the winners of this year’s wheelchair tournament at the Rugby League World Cup will receive prize money for the first time.

Compare that with visually-impaired Alpine skier Kelly Gallagher. The most she has ever won was a leg of ham.

“Someone said it was worth a lot of euros but we couldn’t take it out of the country so gave it away,” the Winter Paralympic gold medallist said in 2020.

British wheelchair tennis player Lucy Shuker said: “Tennis does compare favourably to other wheelchair sports, and I know that the Grand Slams offer a lot more, and the top four players could probably make a living from it.

“The rest of the tour, invariably you won’t win enough to pay to compete and with Covid impacting the world, there’ll be even less money.”

Does more need to be done in other areas first?

But before prize money has any chance of becoming the norm in para-sport, there are other things that “have to be put into place” according to Sarah Storey.

“None of us compete for the possibility of prize money, that’s kind of a given,” says Storey, winner of 14 Paralympic titles in swimming and cycling.

“Prize money is almost kicked down the road a long way.”

She says the IPC, UCI and other international federations have to “almost twist people’s arms” to host competitions, and other aspects, such as sponsorship and TV rights, need to become more commonplace before any “nice-to-haves” like prize money.

“What is it about the brand of this side of the sport that isn’t as appealing?” she tells BBC Sport. “How can they develop that brand to be something lucrative? To be something that’s wanted and sought after?”

Cockroft agrees. She organised a meet in 2019 which offered prize money courtesy of her own sponsor, and consequently saw lots of entries because “that’s what draws people in”.

Two years on, and largely due to the coronavirus pandemic, she has no races in the diary and does not know how she will qualify for the Tokyo Paralympics.

“I see it as this big cycle of we don’t get crowds because we don’t get media coverage, and then we don’t get sponsorship because we don’t get media coverage, and then there’s no prize money because there’s no sponsors,” she says.

“But then no-one sponsors it because no-one comes to watch it. We need everything to happen at once for this to go well.”

Both say it should have happened after the London 2012 Paralympics.

“What we need is exposure and profile,” Storey says. “We need to build the stories of athletes, we need visibility if we want the outcome of prize money for everybody.

“I’m really disappointed that there’s been no progress between the Games in London and now. We’ve spent nine years waiting for that next step.

“We’re almost at the point of saying we have lost the momentum of the [London] Paralympic Games in terms of the impact it could have had on para-sport.”

The IPC, which is based in Bonn, Germany, said it cannot pay prize money because of its “stated purpose as a non-profit organisation under German law”.

The BBC has approached the UCI, which governs Para-cycling, for comment.

Widow Sues NHS Over Deaf Husband’s ‘Diabolical’ Care

March 9, 2021

A woman is taking legal action against an NHS trust over the “diabolical” and discriminatory treatment of her profoundly deaf husband, who died of cancer in May last year.

Susan Kelly, who is also deaf, is angry that her husband, Ronnie, was at no point during two hospital admissions and an outpatient appointment provided with a British Sign Language (BSL) interpreter. Instead, her hearing daughter, Annie Hadfield, was asked to translate his terminal diagnosis, when he was told to “get his affairs in order” and given between two weeks and two months to live, while his wife was left outside the room. He died just over two weeks later at home.

Medical staff at Sheffield Teaching Hospitals NHS trust also placed a “do not resuscitate” (DNR) order on Kelly, who had Alzheimer’s disease, during his first hospital admission in late April without either his consent or consulting his wife or daughter. His family found out only after their barrister obtained his hospital notes.Advertisementhttps://d77a70cb49e64c7dab4a25d709d0324d.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

In her first media interview, Susan Kelly told the Observer through an interpreter: “I didn’t know what DNR meant. I had no idea. I was really shocked. They’d never asked me anything about it. That wasn’t right, it was wrong. Ronnie wouldn’t have known what it meant.”

Hadfield added: “I thought it was actually quite diabolical.”

The trust is undertaking a review to understand what happened. David Hughes, medical director, said: “We do acknowledge that we have more to do to support patients and relatives who have hearing impairments and it is an area of work we are actively looking at to make improvements.”

The case, brought by Derbyshire Law Centre, argues that the trust breached the Equality Act 2010, the Human Rights Act 1998 and the NHS accessible information standard by not making reasonable adjustments for Ronnie’s disability and by imposing a DNR without discussing it with the patient and his family first.

Kelly and her daughter hope the case will raise awareness of the struggles that deaf people face. There are more than 80,000 people who use BSL as a first language in the UK and they often encounter barriers to accessing information and services.

The family’s story is far from uncommon, and it’s not the first time a hearing relative has had to translate sensitive and distressing information. Kelly herself was admitted to hospital two years ago after a heart attack and fitted with a stent without knowing what was going on because no interpreter was present.

Kate Bushen, service supervisor for the deaf advice team at Citizens Advice Sheffield, who is supporting the family, said: “We hear these horrific stories all the time. We’ve tried to work with the trust to put things in place but nothing’s changed.”

She added: “It is absolutely wrong that a family member should be used without choice and without knowing why.” Covid and the introduction of face masks and an increased reliance on phones and the internet has exacerbated the situation, she added.

Catherine Casserley, a barrister specialising in discrimination and equality, among other areas, who is involved in the Kelly case, agreed: “Access to information for disabled people across the board is, in my view, pretty poor and if you are deaf it’s incredibly poor … If you’re a BSL user, then getting access to timely, accurate information is incredibly difficult, particularly with Covid when things have been changing rapidly.”

 

The Observer has been made aware of other cases where deaf people have faced barriers to accessing services, with sometimes drastic consequences. For example, one pregnant women needed a BSL interpreter at her labour but the hospital refused to arrange one, leading her to become stressed and depressed about not having any communication support and a deaf man was given medication by his doctor but didn’t know what it was because no effort was made to explain it to him. He sought help from the deaf advice team, who looked up the medication and found out it was for a chronic condition before referring him back to the GP. Several weeks later, he texted the team from hospital saying his condition had worsened and that he felt so alone because he had no way of communicating.

Chris Fry, a specialist equality lawyer at Fry Law, is leading legal challenges against the government – on behalf of campaigner Katherine Rowley, whose first language is BSL – over its refusal to provide a BSL interpreter in daily Covid briefings in England.

He said: “We’re 26 years since the Disability Discrimination Act and 11 years since the Equality Act. The whole purpose was to embed consideration of reasonable adjustments in the context of decision-making within government and public services, and it’s just not happened. When we’ve been tested, we’ve been found well lacking and that’s super-disappointing.”

What Is Motherhood With A Disability?

March 8, 2021

Life Of An Ambitious Turtle

Disclaimer: This post is kindly sponsored by The Flower Shops in celebration of Mothers from all diverse backgrounds this Mothers Day 2021.

Being a powerchair user with a little one my lap and another holding my left hand as I maneuverer the controller with my right, sparks a lot of attention from strangers. I’m fully accustomed to stares and thankful thus far my girls have never stopped in their tracks because of someone else’s curiosity of the way I operate. That’s how it should be! Stares after all are just that, curiosity. They aren’t always filled with stigma or negative assumptions, more often than not staring is just someone’s way of processing new information, something out the ordinary and many don’t have the confidence to ask someone different the questions that are flowing through their mind.

From pregnancy my priorities were quite different. While other Mums surfed Pinterest to create…

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Mozzeria- Pizza In ASL

March 8, 2021

Covid has shuttered restaurants across the US. Despite the pandemic, Washington, DC’s Mozzeria opened its doors in September 2020.

With a staff of 12 employees – all deaf or hard-of-hearing – the pizzeria aims not only to serve up great food, but also to improve employment opportunities for the deaf community.

Manchester Jewish Boy’s Care Home Proposal Breached Human Rights

March 8, 2021

A disabled Jewish teenager’s human rights were breached when he was offered respite care at a non-Jewish residential home, a judge has ruled.

The boy lives in an orthodox Haredi Jewish community and was offered the placement by Manchester City Council.

The judge said there would be “significant interference” with his religious freedom and ruled the move “unlawful”.

The teenager’s family argued he should have been sent to a place in London.

Manchester City Council has been asked to comment by the BBC.

Judge Stephen Davies heard how the plan would have seen the boy spend 12 weeks at the local home, including Sabbath and Passover.

The teenager’s family had hoped he would be placed in a more appropriate orthodox Jewish residential home in the capital, which would have allowed him to continue following his religious practices, the Local Democracy Reporting Service said.

The council prepared a care plan which would allow him to “manifest his faith as far as was considered practicable”, the High Court hearing was told.

‘Significant restrictions’

The court heard solicitors had said the family “would likely reach breaking point” unless longer respite care could be given at a culturally appropriate home.

The council had not objected to the London placement on cost grounds but felt it would have meant limited contact with his family.

This “could prejudice his chance of staying with his family long term”, the court heard.

The local authority suggested that a kosher diet would be provided for the boy as part of the placement.

But the Manchester home did not allow a mashgiach, an adviser who ensures food is produced to kosher requirements, to supervise every meal – only Sabbath meals on Friday and Saturday.

The council claimed it would be “unsettling” for other children but Judge Davies said there was no “evidence” for that.

In his judgement he said: “It is plain that there would be significant interference with A’s religious freedom and his family and private life.

“It cannot be necessary for the protection of A’s health or that of his family that he must attend [the Manchester home] and suffer these significant restrictions, when there are alternatives – such as his attending [the London home] instead or through the provision of support staff at home.”

Family Of Man Who Starved To Death After Benefits Cut Lose Case Against DWP

March 8, 2021

The family of a seriously mentally ill man who starved to death after months of isolation in his flat after his benefits were stopped are considering an appeal after losing a high court case against the Department for Work and Pensions (DWP).

Errol Graham, a 57-year-old grandfather, weighed just 28kg when he was found dead at home by bailiffs sent to evict him in June 2018, eight months after all his benefits were stopped because of his failure to attend a fit for work assessment.

An inquest in 2019 found that DWP and NHS staff had missed opportunities to save Graham, and the coroner concluded that “the safety net that should surround vulnerable people like Errol in our society had holes within it.”

Lawyers acting for his family brought a case last year to try to force changes to the DWP’s safeguarding process, arguing that he would still be alive if officials had checked properly on his health and wellbeing before withdrawing his benefits.

The family argued at a judicial review hearing in January that DWP guidance fell short because it failed to impose a duty of care on decision-makers to investigate when mentally ill claimants did not engage with the benefits system. The DWP’s policy placed an unfair burden on vulnerable claimants to prove that they had good cause when they did not attend meetings with DWP officials.

DWP officials made two visits to Graham’s home in 2017, and a handful of attempts to communicate with him by phone, but failed to make contact with him before cutting off his benefits, which were his sole source of income.

On Thursday a judge ruled that the DWP guidance was lawful and that officials had acted reasonably in Graham’s case. Mr Justice Bourne said neither the law nor DWP policy at the time “mandated any further specific steps to be taken in that situation”.

He added: “Despite the tragic circumstances of this case … the claimant falls well short of establishing that the defendant failed to comply with” its duty to make reasonable inquiries into all relevant matters.

The family’s lawyer, Tessa Gregory, of the solicitors Leigh Day, said:“We are deeply disappointed by the judgment, which fails to ensure the DWP takes simple steps to protect the lives of vulnerable benefit claimants. We are considering an appeal and Errol’s family will continue to fight for a welfare system that supports rather than endangers lives.”

A DWP spokesperson said: “Our sincere condolences remain with Mr Graham’s family. While we welcome this judgment we continue to work to improve the service that we provide to our most vulnerable claimants.”

After Graham’s family lodged the claim last July, DWP revised its safeguarding policy, introducing guidance last October requiring staff to widen the scope of inquiries to ensure they checked with police, NHS staff or next of kin before stopping benefits.

Mr Justice Bourne said this revision was “in my view a significant improvement to the policy. It should help to prevent tragic outcomes like that of Mr Graham, though I cannot say what if any effect it would have had in his case.”

LETTER TO EDITOR: For Employee Appreciation Day, Revitalise thank hardworking frontline staff 

March 5, 2021

Dear Editor,

With Boris’ announcement of the roadmap out of lockdown, it’s understandable that the British public has breathed a collective sigh of relief that there is a light at the end of the tunnel and we are hurtling towards it. However, it is important that we never forget the incredible efforts of the nation’s frontline workers during some very bleak times. For Employee Appreciation Day (Friday 5th March) I would like to share a message of thanks with your readers.

The charity I work for, Revitalise, usually create great holidays for disabled people and their carers, a vital lifeline to so many unpaid home carers and their disabled family members. However, during lockdown, our respite centres have adapted to provide emergency respite care for people who are worried about whether their care support can continue, and we have also been supporting the NHS by accepting hospital patients.

Our frontline staff, including nursing and care teams, have continued to work diligently throughout lockdown, providing much-needed care to vulnerable people at our centres, and showing kindness and support and an ear to listen whenever they are needed. We have heard fantastic comments from guests, who have been incredibly grateful for the care and attention that our teams have shown them.

One Revitalise guest, Leon, said:

“Revitalise has reduced my stress levels from 100 to 20. If it wasn’t for Sandpipers, I don’t know what I would do. I just can’t thank the staff and Revitalise enough. You guys pick me up and make me feel better again.”

So I’d like to take this opportunity to thank our wonderful staff – because if you can’t say it on Employee Appreciation Day, when can you say it? Thank you for all of your efforts and the lengths you go to, to make our guests feel happy and cared for.

Revitalise are still welcoming disabled people and carers to Revitalise Sandpipers in Merseyside, for those that have not been able to access a respite break for nearly a year due to the pandemic. We have funding available and can also pr

Devon Prosser, Revitalise
www.revitalise.org.uk  

 

ovide transport across the country. Anyone who feels they could benefit from our support, need only ask.

Places I’ve Taken My Body

March 4, 2021

The autumn I was 19, I entered my college dining hall in California just in time to overhear a boy telling a table of mutual acquaintances that he thought I was very nice, but he felt terribly sorry for me because I was going to die a virgin. This was already impossible, but in that moment all that mattered was the blunt force of the boy’s certainty. He hadn’t said he could never … or “She might be pretty, but” … or “Can she even have sex?” or even “I’d never fuck a cripple” – all sentences I’d heard or overheard by then. What he had done was, firmly, with some weird, wrong breed of kindness in his voice, drawn a border between my body and the country of desire.

It didn’t matter that, by then, I’d already done my share of heated fumbling in narrow dorm-room beds; that more than one person had already looked at me and said: “I’m in love with you,” and I had said it back. It didn’t matter that I’d boldly kissed a boy on his back porch in sixth grade, surprising him so much that the BB gun he was holding went off, sending a squadron of brown squirrels skittering up into the trees. Most of me was certain that the boy in the dining hall was right in all the ways that really mattered. He knew I’d never be the kind of woman anyone could really want, and I knew that even my body’s own wanting was suspect and tainted by flaw. My body was a country of error and pain. It was a doctor’s best attempt, a thing to manage and make up for. It was a place to leave if I was hunting goodness, happiness or release.


I have the strongest startle reflex in the world. Call my name in the quiet, make a loud noise, introduce something sudden into my field of vision, and I’ll jump like there’s been a clap of thunder every time. It’s worst, though, if you touch me when I’m not expecting it. I start the way a wild animal does. For years I thought only the bad wiring in my brain was to blame, the same warped signals that throw off my balance and make my muscles tighten, keeping me permanently on tenterhooks. Then I met Susannah, whose first memories are also of a gas mask and a surgeon’s hands, of being picked up, held down, put under. She, too, jumps at the smallest surprise, the slightest unanticipated touch. Now I think that feral reflex also arises from something in that early trauma: all those years of being touched without permission, having your body talked about over your head, being forced under sedation, made to leave your body and come back to a version that hurts more but is supposedly better – the blank stretch of time when something happened you can’t name. I think it matters that the first touch I remember is someone readying to cut me open, that when I woke up I was crying, and there was a sutured wound.


For the better part of my childhood, I was part of a study on gait development in children with cerebral palsy. At least once a year – and sometimes more frequently if I’d recently had surgery – I spent an afternoon in a research lab, walking up and down a narrow strip of carpet, with sensors and wires attached to my body so doctors could chart the way I moved. The digital sensors composed a computer model of my staggering shape, each one a little point of light, and when I peeled them off they left behind burning red squares like perfect ­territories. But the doctors also filmed the whole thing on a video camera mounted on a tripod, and gave us the raw footage to take home. The early films are cute; I’m curly haired and chatty. The bathing suit I wear so that my legs and arms are bare is always either a little too small or a little too big, a hand-me-down from my older sister. I trundle happily down the carpet. As I get older, though, the tapes get more complicated. By the time I get to footage where I look anything like myself, I can’t bear to watch. I’m a teenage girl in bike shorts or a bathing suit, being watched by a collection of men, walking what’s essentially a runway like some kind of wounded animal.

Even today, I can’t quite tell: do I hope that when they looked at me back then, mostly undressed, they saw only a crop of defects that needed fixing, a collection of their best repairs? Or do I hope that one of them – maybe the redhead, not yet 30 – felt some small press of desire, knew I was a girl on the edge of womanhood and not a half-lame horse or subject #53? I know I hated being watched. I also know it never occurred to me that anyone watching would see something worth wanting.

They took those videos throughout most of my adolescence. Do you know I still can’t stand to watch myself walk? I put my eyes on the floor when I pass department-store mirrors or reflective glass. I catch a glimpse of myself and my stomach turns. When I asked the first man I loved about the way I moved, he said: “It’s nothing. It doesn’t matter.” He meant it as a comfort, but I thought: “You’re wrong. It makes me what I am.”


Chronic pain makes you good at abandoning yourself. It teaches you to ignore your body until it insists on being noticed, until your joints ache too badly to stand, until something buckles, until you fall and then you’re bleeding hard enough to ruin your clothes. There’s a certain low thrum of hurt I don’t notice; it’s just the frequency at the bottom of everything. A good day is one where I hardly think about my body, where I adjust for its flaws by instinct, where there isn’t any sudden spike in that low pulse of pain.

On a good day, my body doesn’t embarrass me. It does what I ask it, lets me walk short distances and do my job. I don’t notice people staring, don’t trip on my way in to teach a class, sending 35 student papers flying everywhere. I don’t have to pause at a threshold and ask a stranger to help me lift my wheelchair up and through a door. No one I don’t really know needs to put their hands on me. No one in the grocery store asks: “What happened, sweetie? You’re so pretty to be in a wheelchair!” On a good day, my body pulls hard at the hem of my dress, and I hiss back: “You don’t exist,” and it goes somewhere else, or I do.Advertisement

In bed, a man pauses, puts a wide, gentle hand on my face and asks: “Honey, where are you? Come back here.” I want to, and also I don’t.


Just as I hit adolescence, my body abruptly began to break down. I grew, and so did my physical instability. My tendons tightened, and my pain increased. The ­doctors scheduled another set of medical procedures: a surgery, a summer in a set of full-leg plaster casts and then a pair of heavy, bulky metal braces. Just as I began to learn I could feel sexual desire, I was splintered and in pain again, and the fact of it demanded most of my attention. My earliest experiences with lust feel shrunken by the trauma, vague and distanced, as if I watched through a scratched viewfinder while they happened to someone else. I can’t identify them for you except as strange, dark shapes at an unreachable horizon line.

During those years I had to wear parachute pants – specially made by a tailor who regularly asked my mother to remind her what was wrong with me – and giant sneakers to accommodate the braces. Besides all that, I had the usual adolescent problems. I hadn’t learned that you really just shouldn’t brush curly hair, or that if you have hips and spend most of your time sitting or bent over, low-rise jeans are a terrible idea. Not only was I far from resembling the kind of girl I could imagine anyone finding desirable, I was so occupied with pain and with being a patient, perpetually hamstrung between taken-apart and put-back-together, that it would take me years to really look at myself and realise I was also a person. A woman. That there was a whole other way I could want to be touched.

 

I belonged to an adaptive skiing association and spent most of the time I wasn’t in the hospital or physical therapy learning to hurl myself down snow-covered mountains with men who’d been paralysed in car wrecks. But I didn’t know a single adult woman with a disability really comparable to mine. Nowhere on television, or in any magazine, did I see any portrayals of disabled women as sexual and desirable (let alone as partners or as parents), and most of the solace that the early-2000s internet had to offer was in the form of assurances that I might one day be the object of some very particular fetish. It matters that when any adult spoke to me about my body, they did so in purely utilitarian terms, said that I should want the best range of motion, the least pain, the highest level of mobility, so that I could one day buy groceries, live independently, hold a job. Of course, nobody warned: you’ll want your hamstrings to be loose enough that it doesn’t hurt when your muscles tense before you have an orgasm. They also didn’t say: we want to do all this to you so that one day your body can be a thing that brings you pleasure, a thing that you don’t hate.Advertisement

The truth is, my first real flushes of lust happened when my own body was a dangerous thing, one I couldn’t trust not to fall to pieces or to lunge at the rest of me with its teeth bared, out for blood. So much of my somatic experience was agonising and frightening. I had no idea what my body would look, move or feel like five years down the line. Desire wasn’t entirely crowded out by pain, but I distrusted it the same way I did everything that felt born in my body, as if it were an instant away from morphing into suffering, waiting only until I attended to it to become a thing that hurt me. I playacted at desire often – mimicking the adolescents around me when they traded gossip about crushes, had first kisses, held hands furtively underneath their desks in social-studies class – but I couldn’t afford to get to know its real contours in my life, to attend to my own sensations, or to believe in a future with real space for that kind of pleasure or intimacy, that kind of love. To survive, I had to stay unfamiliar to myself: neutralised, at arm’s length. Sometimes, I think, all these years later, I’m still hunting the part of myself I exiled.

When I was newly 17, one of my closest friends put her head in my lap, said: “You’re so gorgeous,” and then leaned up and kissed me. I would spend the better part of the next year alternately pushing her away and pulling her close, trying to figure out whether I wanted her, too, or only the plain, unapologetic fact of her desire for me. Her gentleness, her confidence in her own body and its hunger, the fact that when she watched me move, I felt like a painting come to life and not a patient or a busted wind-up toy. A decade later, I still feel guilty for all the secretive back-and-forth I put her through because I was unwilling to be open about our romantic relationship, and the answer to the question of my own desire still feels fraught and muddy.

A handful of years after that, I was in a coffee shop with a man I half-thought I’d marry, in a youthful, abstract way, and someone in line assumed he was my brother, though we couldn’t have looked less alike. When we corrected her, she looked over my head at him and said, gently and admiringly: “She’s so lucky to have found you.” He bit his tongue when I squeezed his hand. I didn’t want to think about it any more. We turned away.

We started dating after he attended a reading I gave. When it was over, he came up and kissed my cheek, said: “That was so incredible that I forgot to breathe while you were talking.” Then he turned on his heel and walked away. I rolled my eyes, but couldn’t get him out of my head. The way I moved was nothing. He was proof it didn’t matter.

At a taffy shop on the boardwalk in San Francisco, the weekend we first say “I love you”, a middle-aged man is pushing a woman, clearly his wife, in a wheelchair. They are laughing and his head is bent so that their faces are close together as he walks, intimate and tender. We bump into one another in the aisle and pause – two couples exchanging smiles – while we make room for her wheelchair to get past mine. They walk on, and then we kiss, fierce and happy there. We’re young, and don’t know anything. We both think “maybe”.

Later, we’re in Florida at the beach, and I’ve been stiff and hurting for weeks from a summer of travel. In the bathroom, while we’re changing into bathing suits, he looks me up and down. I’m prepared for him to try something – to kiss me – and I’m prepared to put him off, we don’t have time; we have to meet my family by the water. Instead, he asks me tenderly: “Do you want help clipping your toenails, baby? They’re getting kind of long.” That night, in bed, I roll away when he reaches for me. My body is no country for desire.

A couple of years later still, another man – charming, boy-next-door-beautiful and quarterback confident – has started spending evenings in my bed, or with me pinned to his couch. He tells me I’m sexy, asks to read what I’m writing, then asks quiet questions about poetry and movies that I love. But he won’t be seen dating me in public. When I tell him I’m more than happy to be fooling around, but that I won’t sleep with somebody I hardly know, he puts all his weight on top of me, says: “Oh, if I wanted to have sex with you, you’d know.” Then flips me over. Pushes my head down hard enough that it hurts. I think: he’s embarrassed to be seen with me. He gets off on how fragile I am. I’m too old to put up with this. But I let him. I let it go on for weeks and weeks like that before I stop returning his late-night texts.

I want him to want me, and though I can’t quite admit it to myself, I am also a little afraid. Always, I’m aware that I’m particularly vulnerable: I couldn’t run if you came at me. I’d fall to the ground if you touched me even slightly roughly. I will always start at an unexpected hand.


But because some of you are wondering (I see you ­leering at me, stranger at the bank. I see you, terrible internet date); because we live in a world that often assumes disabled people are sexless or infantile; because I wish I had heard anyone who looked or moved like me say it when I was 14, I want to be very clear: I can, in fact, have sex. I am a woman who wants in ways that are both abstract and concrete. I have turned down advances from people I wasn’t attracted to, and said yes to a few advances I’m sorry about now, and more that have been lovely, surprising and good. I’ve had a date who didn’t realise I was in a wheelchair turn and walk out of a restaurant when he saw me, and I’ve watched the light behind men’s eyes turn from desire to curiosity to something else when they realise something’s wrong with me. I’ve been hit on while on barstools by people who disappear once they’ve watched me get up and shuffle slowly to the bathroom. I’ve used that trick to my advantage. I’ve spent a summer weekend taking baths and eating overripe peaches in a seedy motel with someone I loved, and another getting lusty-whiskey-drunk with someone I didn’t, but whom I was still perfectly happy to have unbutton my shirt. The explicit details I’ll keep to myself, except to say that my familiarity with how to jump-rope the line between pleasure and pain has done me some favours. If you’re listening, younger self, some of what you’re learning will, I swear, eventually have uses no one’s naming for you, uses that no one orbiting around you can locate, name or even imagine.


In another kind of story, I would leave it there. Or I would say that I’ve arrived at a reconciled point, that no part of me ever still believes that the boy in the dining hall, who was certain I would die a virgin, hit on some real truth about the ways my body is ­defective and repellent; that, now, I can watch myself move without feeling some small wave of shame; that I’ve completely stopped abandoning my body out of instinct, or habit, or what feels like necessity, in moments when it should bring me pleasure and intimacy and joy. I’d have fully worked out how to be with a partner who I know really sees my body, its contours, its scars and its pain, who I can let give me the kinds of help I need and still trust to see me as sexual and desirable. But that isn’t where I find myself. I don’t know exactly where the reconciled point is, or even what it looks like. Instead, things just get more complicated. I really want children, and in the past few years that prospect has collided with questions of intimacy and desire. I worry about finding a partner truly willing to parent with me in the ways I know my disability will necessitate, and to sign up for the medical uncertainties I know are around the bend in my own life. I worry about the toll pregnancy might take on my body, and about being physically capable of being a good parent once my children are born. I worry that my clock is ­ticking faster than most people’s, my body wearing down and wearing out. And, in the hardest moments, that whatever small kind of beauty and desirability I might, in fact, possess is wearing away with it. I’m still surprised by my own limits, still frustrated and exhausted by pain. Sometimes I still feel suspicious of all my body’s sensations, the good ones tangled too tightly with the bad. But not all moments are the hardest ones, and maybe the point is simply this: that I am still alive, still in the business of heading somewhere, still a woman who can stumble, hurt and want, and – yes – be wanted. That there is no perfect reconciliation, only the way I hold it all suspended: wonderful, and hugely difficult and true.

Places I’ve Taken My Body by Molly McCully Brown will be published by Faber on 4 March. To order a copy, go to the Guardian Bookshop.

Yorkshire Accents Wanted To Replace ‘Generic’ Speech Aid Voice

March 4, 2021

A man whose speech aid makes him sound “American” is looking for volunteers to help him speak in his native Yorkshire accent.

Richie Cottingham, who has cerebral palsy, says his speaking aid’s generic voice does not represent his identity.

“I want to sound like my family and friends,” he said.

The 26-year-old, who lives near Howden, East Yorkshire, wants to blend recordings of two local men to create a new voice.

“When I’m with my friends our voices sound the same because we all use the same communication aids,” Mr Cottingham said.

“I would love to have my own voice.

“I dislike my voice because it sounds like I’m American.

Being able to talk in his own voice would be “awesome”, he said.

Speech and language therapist Jennifer Benson said they hoped to find two men in their early 20s with East Yorkshire accents to help them “create an entirely new [voice]” that would be installed on Mr Cottingham’s communication aid.

“Richie has cerebral palsy and has never been able to speak and never had a voice of his own,” she said.

“I feel like having a voice to call his own could be a really, really great thing for Richie.

“I feel that it will give him an enhanced sense of identity due to having that regional accent, which could also give him an enhanced sense of belonging to his own community and his place in the world.”

She said a revamped communication aid using a tailor-made voice for Mr Cottingham would help him to “fully participate in conversations”.

Mr Cottingham said the voice donors “would be helping me a lot”.

“I would be very happy with a new voice,” he added.

Sport And Brain Injury: Parliamentary Inquiry To Be Launched To Investigate Link

March 3, 2021

A parliamentary inquiry into the link between sport and long-term brain injury is being launched on Wednesday.

MPs will consider the links between head trauma and dementia, and how risks can be mitigated.

Last year, Sir Bobby Charlton became the fifth member of England’s 1966 World Cup-winning squad to be diagnosed with dementia.

A number of ex-rugby union internationals are also suing for brain damage.

The Concussion in Sport inquiry, which starts on 9 March, will consider scientific evidence and hear from players and governing bodies.

The inquiry will not consider material involved in ongoing legal proceedings, but will look at potential implications of successful legal action and what impact that could have on sport in the longer term.

Digital, Culture, Media and Sport committee chair Julian Knight said: “We will look particularly at what role national governing bodies should be taking and their responsibilities to understand risks involved for players and what actions might be taken to mitigate them.

“We’re seeing a number of cases involving brain injury in sport likely to reach the doors of our law courts and we will also look at the implications for sport in the longer term of any successful legal claim.”

Culture Secretary Oliver Dowden, who has hosted two recent meetings with players and sports bodies on the issue, and asked them to work together to devise a plan, said he welcomed the inquiry.

A 2019 study showed footballers were three and a half times more likely to die of neurodegenerative disease than age-matched members of the population.

Last month, former Scotland, Manchester United and Leeds United defender Gordon McQueen was diagnosed with vascular dementia.

Former England and West Brom striker Geoff Astle died of the condition in 2002, and his daughter Dawn is working alongside the Professional Footballers’ Association to help shape the way it cares for former players.

Dr Willie Stewart, the neurosurgeon who led research into football’s links with dementia, has warned the issue is “not just for older-era footballers but modern-era footballers as well”.

Last year heading guidelines were altered in England, Northern Ireland and Scotland to encourage coaches not to practise heading at all in training in children up to primary school age.

In the professional game concussion substitutes are being trialled in the Premier League and FA Cup, while a working group is looking at introducing similar guidelines to the ones set out for children to training.

The Football Association is currently supporting two independently led research studies examining former professional players for early signs of neurocognitive degeneration.

England football manager Gareth Southgate is taking part in the ongoing HEADING study, which works with PFA members aged 50-plus and is being conducted by the London School of Hygiene and Tropical Medicine.

 

Blind Boy, 9, Teaches Classmates In Yemen War Zone

March 3, 2021

In the city of Taiz, Yemen, hundreds of children arrive for lessons each day in the ruins of a school near to front-line fighting between the government and Houthi rebels.

Ahmed, a nine-year-old boy who has been blind since birth, steps in to take classes when the teachers can’t make it.

One in every five Yemeni schools is out of use, according to Unicef. But at this one, teachers decided to open it despite the damage, so that education could continue.

Can Bear Ski? By Raymond Antrobus

March 3, 2021

Award-winning poet Raymond Antrobus found out he was deaf when he was six, while illustrator Polly Dunbar’s hearing started to go in her twenties.

Can Bear Ski? is their first picture book for children and follows a little bear as he discovers he is deaf.

Raymond decided to write the story after being a poet in residence at his former primary school and finding the library lacking in books featuring deaf characters.

Now armed with a copy of the new book, Raymond is joined by Polly on a Zoomed trip back to his old school.

It’s snot what you think… Tracey Fulton debuts with an unusually heart-warming tale inspired by her nephew with cerebral palsy.

March 3, 2021

A press release:

 

Jensen and the Giant Snotball is a hilarious and heart-warming children’s picture book which was inspired by author Tracey Fulton’s young nephew’s experience in hospital. “Jensen has cerebral palsy and was admitted to hospital when he unfortunately broke his leg. While in hospital, he contracted pneumonia, and to save his life nurses and physios worked tirelessly to remove mucus from his chest. On one very memorable occasion, shouts of ‘Jensen, that’s the biggest snotball I’ve ever seen!’ sparked inspiration for a children’s book I hope will provide humour and happiness for readers as they follow Jensen and Snotball’s misadventures!”

When Jensen meets Snotball at the hospital the pair head out for a big adventure, past the nurses and out of the hospital, to the shops and off to the park. But Jensen knows he needs to get back quickly, else his mum and sister will be worried. Luckily Snotball is as speedy and he is sticky, and they make it back safe and sound, and just in time.

From their very first day at the hospital together, this giggling pair are the best of friends. Their naughty and fun adventures have only just begun!

Tracey Fulton lives in Durham with her partner, Steve. With four grown up children and a baby grandson, she enjoys family life. Jensen and the Giant Snotball is her debut novel, written to spark young readers’ imaginations.

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Prosthetist Fundraising £300,000 For A Bionic Arm After Cycling Accident

March 2, 2021

Jim Ashworth-Beaumont lost his right arm after he was run over by a 40-tonne truck whilst out cycling last year.

Prior to the accident, he spent 20 years working as a prosthetist and orthotist for the NHS.

He is trying to raise £300,000 for a new bionic arm, which he hopes will allow him to go back to work.

Jim spoke to BBC Breakfast’s Tim Muffett about the surgery, which would be one of the first to take place in the UK.