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Andy Lapthorne: British Wheelchair Tennis Player Criticises Sport For ‘Ableism’

December 4, 2020

British wheelchair tennis player Andy Lapthorne says events are being organised by people “who don’t have a clue about disability and don’t ask us questions”.

He was one of a number of players who forced US Open organisers into a U-turn over the inclusion of wheelchair events at this year’s tournament after they were initially omitted.

He told the BBC’s Stumps, Wheels and Wobblies podcast that ableism – where there is discrimination in favour of non-disabled people – is an issue.

Lapthorne, the winner of 11 Grand Slam titles and the current world number two in the quad division, added: “The reason given to us at the start was that it wasn’t thought that people with disabilities would travel in a pandemic, but we as players weren’t consulted.

“The top eight men, women and quad players are full-time professional wheelchair tennis players, but we were put in the same bracket with juniors, who don’t get prize money, and with legends, who are retired and playing exhibition tennis, and even getting compared to beach tennis.

“It felt like a massive step backwards, but we had great support from the likes of Andy Murray and Novak Djokovic, and at the end of the day we went out there and proved we are part of the tennis community.”

Lapthorne also told the podcast, in an interview to mark International Day of People with Disabilities, that the increased profile of wheelchair tennis had had a negative impact on his mental health.

After finishing runner-up in the quad singles at October’s French Open, he took a break from the game but hopes to return to competition in the new year.

“Earlier this year, I got to world number one, which was my end goal – but sometimes the worst thing you can do is achieve your dream,” he explained.

“After that I was a bit lost and didn’t know what to do or where to go next, and then lockdown happened.

“When we came out of lockdown, I went to the US Open and then went to Roland Garros and it got a bit too much for me, if I’m honest.

“We are integrated into the Grand Slams and there is more media presence, big prize money, more people watching on TV and a massive social media presence.

“When I lost to Dylan Alcott in the Australian Open final in January, I got a lot of messages on social media from people who had probably gambled on me and lost money.

“As a sport, we have had such a fast rise and I’ve had to deal with things that I didn’t have to do when I started.

“I realised I needed a bit of a break and time away to try to reflect and see where I am at.

“Social media is tough at times when you have a disability. I’m quite strong on trying to act as normal as possible and try to be positive but sometimes when you are getting those messages it can be tough to deal with.”

Meanwhile, fellow GB player Jordanne Whiley says she will skip the Australian Open which is due to take place in January.

Whiley gave birth to son Jackson in January 2018 and returned to action early the following year. Although she played in Melbourne at the start of this year, winning the women’s doubles with Japanese partner Yui Kamiji, she says she will not defend her title.

“It was a really difficult decision to miss out because I love the tournament, but I can’t justify being away from Jackson for three weeks with the quarantine restrictions,” she explained.

“I’d have missed his birthday, which is something which you can’t get back. There will be other Grand Slams so I will take the hit on this one.”

Neighbours Makes Aussie TV History As Hard Of Hearing Actor Nathan Borg Joins Soap

December 3, 2020

Neighbours has made history as hard of hearing actor Nathan Borg joins the soap, becoming the first actor on Australian TV with a cochlear implant.

Nathan plays Curtis Perkins in a recurring guest role. Curtis is a teacher at Erinsborough High who’s described as “an easy-going guy” and “far tougher than he lets on”.

He’s passionate about teaching and will be under the watchful eye of Susan Kennedy (Jackie Woodburne) and Jane Harris (Annie Jones).

Nathan was born six weeks premature and became profoundly deaf after he contracted meningitis at three months old. He got a cochlear implant in his right ear at two which allowed him to hear for the first time.

The big casting news was announced today (December 2) to coincide with International Day of People with Disabilities on Thursday (December 3). The actor began working on the soap in November.

“Growing up I never saw anyone like me on television, so I knew it was time to have a hard of hearing actor on our Australian screens. I think it’s important in this industry that people with all disabilities of all ages get to tell their stories,” Nathan said.
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“Each time I film scenes with Jackie and Annie I am constantly growing as an actor. It is such a privilege to work with such inspiring icons. Jackie has taught me to take direction and Annie has taught me to let loose on set which has been a great balance.”

Executive Producer Jason Herbison added: “Nathan’s passion for acting was clearly evident when I met him nearly a year ago and I’m delighted he is joining the cast in a recurring guest role as a young teacher fresh out of university who isn’t defined by his hard of hearing status.

“He is independent and working in the community, and like everyone on Ramsay Street, we soon discover a link with one of our residents which is going to be a lot fun.”

Nathan’s episodes will air in the UK from early 2021.

States should deliver on their commitments to persons with disabilities – Commissioner Mijatović

December 3, 2020

A press release:

 

Ahead of International Day of Persons with Disabilities, Council of Europe Commissioner for Human Rights, Dunja Mijatović, issued the following statement:

“This year, we mark the International Day of Persons with Disabilities as the COVID19 pandemic is still raging in Europe. The pandemic has disproportionately affected persons with disabilities and exposed all the pre-existing failings in Council of Europe member states. Among many others, these failings include the absence of disability-inclusive emergency preparedness; lack of accessibility; discrimination in accessing health care; a failure to implement the right to live independently and being included in the community; insufficient access to information; and lack of participation and involvement of persons with disabilities in decision-making processes.

While these issues were magnified by the pandemic, none of them is new. In fact, they are all subject to obligations enshrined in international human rights standards, in particular the United Nations Convention on the Rights of Persons with Disabilities, which Council of Europe member states are already bound by. The COVID19 pandemic should be a lesson to all of us that these standards are not just aspirational ideals: failure to implement them leads to suffering and loss of life which could and should have been avoided or mitigated.

While we all wish to go back to a sense of normalcy, let us not lose sight of the fact that, as far as persons with disabilities are concerned, the post-COVID19 world must look very different from the pre-pandemic reality, with a renewed commitment to finally deliver on what we have signed up to.” 

Covid: Adults With LD ‘Miss Out’

December 2, 2020

People with learning disabilities have been “at the back of the queue” during the coronavirus pandemic, a panel of MPs has been told.

Those living in supported accommodation were left waiting weeks for guidance on testing and visits.

MPs were also told long-term social factors were likely to be more important than biology when it came to ethnic divides in the virus’s impact.

The panel focused on what lessons could be learned.

Giving evidence

James O’Rourke’s brother Tony lives alone in a one-bedroom flat in a block of supported-living accommodation.

He said the family had been unable to visit him, even though people living alone in the wider community are allowed to form a support bubble with another household.

Mr O’Rourke said this was because guidance had been tailored towards large residential care homes and failed to account for people in his brother’s situation.

He was giving evidence to a joint hearing of the Health and Social Care Committee and Science and Technology Committee.

Supportive-living services

This sentiment was echoed by Steve Scown, who runs Dimensions UK, a major provider of supported accommodation for adults with learning disabilities and autism.

“Consistently, the government guidance for registered care homes has been issued weeks in advance of guidance for supportive-living services,” he said.

“There’s been a focus on large registered care homes for older people.”

While the government’s focus on older people was “understandable”, these delays meant his service was still waiting for guidance on testing residents.

And in other cases, constantly changing guidance had left staff and residents confused.

‘Better instructions’

Ann McCallum, who has a learning disability and advocates for others who do, said she had struggled to understand certain guidelines.

“It’s not been in easy language for people to understand,” she said.

“Politicians need to really not use jargon and give better instructions on all the rules that they want us to follow”.

Language around “tiers”, for example, was confusing, Ms McCallum added.https://emp.bbc.co.uk/emp/SMPj/2.36.6/iframe.htmlmedia captionWhy people with learning disabilities are struggling to adjust to life after lockdown

Mr Scown said life-expectancy figures – between 14 and 18 years lower for people with learning disabilities – were evidence they were not valued “as equal members of the community”.

And he cited “frankly, disgraceful” instances during the pandemic of medics placing do-not-attempt-resuscitation (DNAR) orders on patients with learning disabilities’ files without consulting their families .

 

When RNID met Nyle Dimarco…

December 2, 2020

A press release:

 

The deaf activist and executive producer chats to RNID about landmark Netflix show Deaf U in an exclusive Facebook event

RNID, the leading charity working to make life fully inclusive for deaf people and those with hearing loss and tinnitus, has teamed up with American model and deaf activist Nyle DiMarco to discuss the landmark Netflix show Deaf U, which he helped produce. 

In an exclusive Facebook event, Nyle was interviewed by the charity’s ambassador, Samantha Baines, and tackled matters such as the show’s impact on hearing audiences and how it’s been received by the deaf community. 

Nyle DiMarco shot to fame as the first deaf contestant to win America’s Next Top Model and Dancing with the Stars. DiMarco, who is from a multi-generational deaf family, was an executive producer of the series “Deaf U,” which premiered on Netflix on October 9, 2020. The coming of age docu-series follows a tight-knit group of deaf students at Gallaudet University, a renowned private college for the deaf and those with hearing loss, giving an unfiltered and unexpected look inside the deaf community. The recent launch ofthe show sparked conversations around the lack of representation of deaf and those with hearing loss on screen.

In a Facebook event, which aired on Friday 27 November, Nyle was interviewed by RNID’s ambassador, actress and comedian, Samantha Baines, who also has hearing loss. The interview included BSL translation and ASL interpretation. The interview will remain on Facebook and can also be viewed on You Tube here

When asked about the representation of the deaf community, Nyle said: “Obviously, we’re a hyper-marginalised community, so my aim was to make a really interesting show that would explore deaf people’s lives and the connections they have with one another. And also to show that we’re just like hearing people. Deaf U was really an opportunity to demonstrate that through our students, to really break the mould and the formula of what people are used to seeing.”

“One of the biggest misconceptions that hearing people have, is that deaf people don’t have a community or a sense of a community. And I wanted to show that it exists. And that it exists on a vibrant campus,” he added. 

Responding to some critics who argued the show misrepresented the deaf community, he said:  

“It’s impossible to see each individual person represented on screen exactly as they are because no one deaf person is the same. Even so, the wider audience is still learning from the representation that we’ve had an opportunity to offer. In over a hundred years since the inception of Hollywood, we haven’t really had our own positioning.  So I do hope that Deaf U can be used and emulated by the entertainment industry and will open many, many doors for the deaf community.”

Netflix has confirmed that members of the deaf community played integral roles in the creation of Deaf U, both in front of and behind the camera, and were vital in developing the series from its inception. The deaf community made up 30% of the crew, 60% of the story producers and 30% of the edit team. Deaf-owned businesses were contracted throughout production, such as the transcription house, ASL Captions, and Convo Communications, which provided aerial footage of Gallaudet’s campus.  Netflix has English language captioning for every title on the service, and titles may also be captioned/subtitled in over 20 languages. For blind members there is over 10,000 hours of audio description on Netflix globally, and original language audio description for most Netflix originals, in up to 36 languages. Deaf U has been made available with SDH and FN features.

Nyle said: “A large percentage of our production crew were deaf or had some sort of hearing loss. This was the first time in history that this has ever been done. We had deaf vloggers on set, we had deaf producers in the field. We hope that this creates a framework for future work to come. I hope at some point, we’ll have 100% deaf people, behind and in front of the camera.”

Head of Campaigns and Public Affairs, RNID, Rob Geaney said: “It was great talking directly to Nyle about Deaf U, and it has been encouraging to see more representation of the deaf community on mainstream settings. We were pleased to hear that Netflix hired a range of talent for all aspects of this show – however work still needs to be done to make sure representation like this is seen across the whole film and television industry.” 

Issues Faced By Students With An Acquired Brain Injury

December 2, 2020

This is a guest post.

 

It has been a difficult period for higher education providers and their students. For most universities, looking after their students health and wellbeing, as well as their access to lectures, seminars and other learning tools have been a priority during the pandemic. However, the move to online learning and campus lockdowns have not been without controversy. Student leaders in early November warned that this is having a detrimental impact on all students’ mental health and universities need to step up to provide extra services.

Of particular concern is the support available for students with disabilities. Disabled Students UK –  in a response to a recent report by the independent Higher Education Commission which  found that students were having severe difficulties accessing extra support from their universities – called for institutions to adhere to firmer rules regarding access and to lose their licences if they fail to do so. In October, Disability Rights UK said that they answered hundreds of calls from students reporting that sometimes resources weren’t made available ahead of teaching, as well as problems navigating online conferencing, which can be difficult for those who struggle to multitask because of their disability.

For students with a brain injury, these issues could exacerbate the big challenges they already face when returning to higher education. Higher education providers can certainly do more to look after their students with brain injuries, during and beyond the pandemic. As a solicitor who represents adults with brain injuries, I want to raise awareness of the issues students with acquired brain injuries face (ABIs) and to highlight areas where they may need support.

Sadly many of my brain injured clients are not able to return to further education due to the severity of their injuries. However, there are many who have been able to overcome and work around the symptoms of their injury, and I wonder how many more could have if they had the right support in place.

Firstly it’s important for further / higher education providers to understand how ABIs can impact individuals, so they are able to provide the right level of support and accessibility to help students study their courses.

ABIs and their impact on learning

ABIs can be caused by trauma, such as a head injury from a road traffic accident or an assault. They can also be caused by an illness or medical condition such as a stroke, brain tumour, meningitis or encephalitis.

Brain injuries can be classified by severity into categories of mild, moderate or severe. Even someone who has a mild brain injury, such as a concussion, can still suffer with debilitating symptoms known as post-concussion syndrome. This can include symptoms such as reduced concentration, dizziness, headaches, irritability, depression, fatigue and memory problems. These symptoms often resolve after a few weeks, but can continue for months or even years.

More severe head injuries are likely to result in more permanent and complicated issues that last beyond the rehabilitation period.

It is well known that the human brain continues to develop well into a person’s mid-twenties. It is therefore difficult to predict the long term impact of a brain injury on a young adult because of their ongoing development. If it’s possible in the circumstances, continuing with education can often be a hugely beneficial to a young adult’s rehabilitation and recovery from their injury.

All brain injuries differ in nature, however, there are some common symptoms, which can all have an impact on how an individual learns:

  • Cognitive difficulties – such as, diminished concentration and attention, impaired memory, language issues.
  • Disorders of executive function – having detrimental effects on the ability to control impulses as well as planning, motivation, and judgement.
  • Physical changes – such as mobility and co-ordination problems, weakness, sensory impairment fatigue and pain.
  • Behavioural and emotional – such as mood swings, personality changes, depression, anxiety and loss of inhibition.

People with ABIs also tend to suffer with fatigue, preventing them from having an active social life and doing activities they enjoyed before their injury. It’s not uncommon too for people with an ABI to find their relationships change after their injury which can exacerbate social isolation. This is a result of the behavioural and emotional impact, which can adversely affect relationships. ABIs are also associated with mental health problems such as depression and anxiety.

Symptoms like headaches, irritability and difficulty with concentration can also be caused or exacerbated by other factors like stress and tiredness.

So what higher education institutions do to help?

Under the Equality Act 2010 higher education institutions have a duty to make reasonable adjustments for disabled students. This could involve adapting the physical environment or by supplying aids and equipment or technology that helps the disabled student to access their education and the facilities as if they didn’t have a disability. 

ABIs are often referred to as a hidden disability because you cannot always see the injury. Other physical disabilities can be easier to identify and make adjustments for. ABIs require the injured person to explain their needs to universities.

If institutions  are providing support for disabled students, they might have to be more proactive with brain injured students in trying to find out what support needs to be put in place. An assessment from a specialist occupational therapist would be helpful to understand the student’s needs. The student might have a medical report they are willing to disclose if they underwent medical treatment or rehabilitation following their injury.

The key is to create a supportive environment in which the brain injured student feels able to disclose their difficulties and discuss what their needs are. With the appropriate level of support from education institutions more talented individuals may be able to revisit their education post brain injury.

Sally Simpson is an Associate solicitor in the Adult Brain Injury Department at Bolt Burdon Kemp, a team of specialist lawyers seeking compensation to help their clients rebuild their lives after they have suffered a brain injury.

The Bullying Doctor

December 1, 2020

Autistic psychologist Emily Lovegrove says that when her children left home, she “needed something else to obsess about”. So she studied bullying to PHD level and now arms young people with strategies to cope if they are being targeted.

Ignoring it, telling someone and fighting back are, she says, logical strategies for an emotional subject. Instead, Lovegrove suggests working on your self-esteem, learning grounding exercises, practising meditation and keeping a bunch of written down self-care options to hand.

It’s a tough subject but this is a joyful episode full of Robyn and Jamie’s trademark humour and fascinating insight.

Presented by Robyn Steward and Henry, Jamie Knight and Lion. Produced by Emma Tracey.

Listen via your smart speaker by saying “Ask the BBC for 1800 Seconds on Autism” and subscribe on BBC Sounds. email stim@bbc.co.uk

The Crown’s Learning Disability Storyline Highlights Painful Lack Of Progress

December 1, 2020

There are 1.5 million learning disabled people in the UK, but they are rarely seen or heard from. Little is spoken of this demographic of people, who in many cases completely rely on others in order to live.

Unless you’re a family carer or professionally involved, you may not know or have regular contact with any learning disabled people.

However, in episode 7 of the latest season of The Crown, viewers learn more about the royal family and learning disabled people. Peter Morgan, creator of the series, writes about two learning disabled women, Nerissa and Katherine Bowes-Lyon.

In Morgan’s fictional depiction, Princess Margaret and the Queen discover that Katherine and Nerissa, their cousins on their mother’s side, are still alive, despite being listed as dead in Burke’s Peerage, and have spent their adult lives in an “institution for mental defectives”.

Despite being born into wealth and privilege, Nerissa and Katherine found that their background didn’t protect them from a harsh truth that still perpetuates today: learning disabled people are, in the main, forgotten.

I would like to be comforting, to ameliorate and to say the Bowes-Lyon sisters were born in another time; an age that lacked enlightenment, far removed from our own. But these institutions are still with us, now called assessment and treatment units, and a recent report showed that within NHS hospitals like these and some specialist schools, learning disabled/autistic people are subjected to prone restraint every 15 minutes.

The world knows how dangerous prone restraint is, because we watched in horror as a version of the technique was used on George Floyd this summer.Covid-19 deaths must prompt better healthcare for people with learning disabilitiesRead more

I’d like to be able to look back to another time and place when I reflect on the fate of the Queen’s cousins. I want to say that things have moved on significantly in all areas of life for disabled people. But this month, the BBC is commemorating the 25th anniversary of the Disability Discrimination Act and seemingly only physically disabled people are being featured in the broadcaster’s celebrations.Advertisementhttps://87316bce20a4d1b80964cf8b4337766a.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

Learning disabled people are still denied work opportunities; in England, only six in 100 people with a learning disability are in employment, compared with 52.5% of the wider disabled community in Great Britain.

And in the context of the pandemic, learning disabled people in the UK are six times more likely to die of Covid-19 and learning disabled people in the UK aged between 18 and 34 are 30 times more likely to die from Covid-19. Learning disabled people have not as yet been included on the extremely vulnerable shielding list, even though respiratory conditions were the leading cause of death of learning disabled people in 2018 and 2019.

In the episode The Hereditary Principle, Morgan chooses not to forget. He wanted to tell the world that these two women – the Queen’s cousins – existed. I loved the episode, and loved too that the production team chose learning disabled performers to tell Nerissa and Katherine’s story.

It’s key that the representation of learning disabled people onscreen is authentically rendered, which is definitely the case with the writing and direction. There is no sentimentality, no “inspiration porn” on view.

In 2009, I launched a campaign called Don’t Play Me, Pay Me after our then 14-year-old child was the first autistic person in the UK to play an autistic character, in the BBC’s Dustbin Baby. At the time, it was a radical notion.

The campaign drew attention to the lack of disabled people in creative industries to highlight that disabled people’s ambitions aren’t diminished by a lack of talent, only by a lack of opportunity. I met broadcasters including the BBC and the campaign prompted widespread news coverage. I was diagnosed as autistic in 2014 and went back into the acting career I’d trained for, but if TV and film representation of disabled people is rare for young disabled actors, it’s even rarer for those, like me, in middle age.

In The Crown, Morgan puts the reason for the forgotten story of Nerissa and Katherine Bowes-Lyon’s secret lives and unmarked deaths as being down to the Queen Mother’s desire to protect the monarchy from her own personal, perceived family shame.

My question is that in keeping contemporary learning disabled people’s lives away from the public gaze, isn’t 21st century society guilty of denying and betraying our shared humanity in a world that would much rather forget that learning disabled people exist?

  • Nicola Clark is a writer, campaigner and performer

PIP And ESA To Increase By Just Half A Percent Next Year

November 30, 2020

With many thanks to Benefits And Work.

 

PIP, ESA and most other benefits will increase by just 0.5% in next year’s annual uprating, Therese Coffey, secretary of state for work and pensions told MPs today.

Coffey announced that “working-age benefits, benefits to help with additional needs arising from disability, carers’ benefits, pensioner premiums in income-related benefits, Statutory Payments, and Additional State Pension” will increase in line with CPI. This has increased by only 0.5% in the relevant period.

By our calculations, even a claimant on the maximum award of PIP will receive just 76p a week extra.

An ESA support group claimant will get an additional 57p a week, those in the work-related activity group will see their income rise by 37p.

There was also bad news for universal credit claimants. Coffey revealed that no decision has been made as to whether the £20 uplift to universal credit and working tax credit will continue once it has been in place for a year in March 2021. A further announcement is likely in the new year.

There was no indication whatsoever that the DWP is considering an uplift of £20 in legacy benefits to match universal credit, in spite of the continuing campaign for such a measure

Coffey has, however, used her discretionary powers to increase the state pension by 2.5%, stating that:

“The full rate of the new State Pension will now be worth £179.60 per week. The Standard Minimum Guarantee in Pension Credit will also increase by the same cash amount as the basic State Pension, rising by 1.9%.”

The new rates come into effect on 12 April 2021.  

With a potential increase in the cost of household goods looming when Brexit arrives, such tiny increases mean a tough year ahead for many claimants

You can read Coffey’s statement in full on the parliament website.

MPs Raise Concerns About PIP And ESA Decisions During Pandemic

November 30, 2020

With many thanks to Benefits And Work.

 

A report by the SSAC published last week has found that some PIP and ESA claimants are missing out because of the suspension of face-to-face assessments and raises concerns about the accuracy of decision making based on telephone assessments.

The report found that there were some claims where neither a paper assessment not a telephone assessment was appropriate. As a result of the pandemic, a backlog of these cases has developed.

The report found that:

“Delays in getting these assessments has meant delays in entitlement decisions, leading to ESA claimants remaining on the assessment rate, and UC claimants remaining on the standard rate, and potentially missing out on additional income that they may be entitled to.

“For PIP claimants, no financial support is available pending assessment as there is no assessment rate for PIP. While additional income claimants may be entitled to can be backdated, the delay in accessing income as it is needed is problematic.”

SSAC has called on the DWP to establish a maximum time period for which claimants can be kept waiting for an assessment and decision.

SSAC also found that there were concerns from advice agencies that the accuracy of decision making has been affected by the pandemic:

“. . . advisers tell us they have observed increased variation with some awards being much higher than they would have expected, and occasionally unexpectedly lower. This observation is supported by DWP’s statistical summary which identifies that the PIP statistics for April to July show ‘distortions’ to trends in awards, clearances and decisions.”

SSAC has called on the DWP to research and publish data on what difference the type of assessment makes to awards, looking at telephone, paper-based and face-to-face assessments.

SSAC say that “This is vital, given that face to face assessments are not likely to be resumed for all claimants in the immediate future.”

SSAC also want an assessment of recent decision making “to ensure consistency and accuracy are maintained”.

Many claimants will be surprised by the idea that accuracy was a feature of DWP decision making prior to the pandemic, but unsurprised to learn that standards may have now fallen even further.

You can read a copy of A review of the COVID-19 temporary measures: occasional paper 24 on the .gov website.

Emmerdale Star Chris Bisson Reveals Personal Connection To Laurel And Jai’s Emotional Story

November 27, 2020

Emmerdale star Chris Bisson has opened up about his personal connection to Jai Sharma’s upcoming storyline.

Jai will face a big decision with his partner Laurel in upcoming episodes after discovering that they’re expecting a baby together.

When the couple learn that their child will be born with Down’s syndrome, they ultimately make the decision that Laurel will have a termination – after some very difficult and intense conversations.

Speaking on Digital Spy’s Soap Scoop podcast, Chris – who plays Jai – explained:It’s a difficult story for me, I’ll be quite straight about that.

“I have a cousin who has Down’s syndrome, and he has been the centre of our family. I’ve had to have difficult conversations with both charities and with family as well.

“I had to speak to my auntie because my cousin is a massive Emmerdale fan, and I wanted her to know that this story was coming.

“I also wanted to work out if he [his cousin] would be watching it and whether he would process the information or interpret the information in the way we play it, whether he would be able to make sense of that, whether it would be upsetting for him.”

Discussing the extensive preparation he did for the storyline, Chris added: “I did a lot of research for this part, and we had some case studies as well.

“The conversations with the case studies were some of the most heartbreaking conversations that I’ve ever had to have when researching a storyline. It was very important to me to play those truthfully, honestly.”

Fans can hit ‘play’ on the podcast embed in this article to hear our full interview with Chris, where he also discussed the show’s Christmas plans, and the future for Laurel and Jai.

Ed Davey’s Stand Up For Carers Campaign

November 27, 2020

Same Difference has been sent the following petition:

Carers – paid and unpaid, young and old – do a remarkable and important job.

They deserve our support but are far too often forgotten and ignored. Liberal Democrats will stand up for carers and lead the way to a more caring society as we emerge from this pandemic.

This starts by raising Carer’s Allowance for unpaid carers by £1,000 a year.

As it happens, Same Difference has been campaigning for a similar rise in Carer’s Allowance for several years.

Like Ed Davey, who is a parent carer himself, we have seen firsthand the value of parent and family carers. They play a priceless role in the lives of so many and have had a particularly difficult time in 2020.

Same Difference is thrilled to see this extremely important issue recognised by an organisation as large and powerful as the Liberal Democrats. Our full support is not worth half as much to them as theirs is to us, but we offer it anyway.

Caroline Pidgeon’s Work On Accessible Transport In London

November 27, 2020

Same Difference has received the following email regarding Caroline Pidgeon’s work on disability issues, particularly accessible transport, in London:

 

 

The one issue Caroline has most recently been involved in is the issue of TfL restoring physical access for disabled people, such as TfL staff guiding blind and visually impaired people or pushing a wheelchair up a ramp to a train on a London Overground and London Underground station.  Guiding by TfL staff can also include providing assistance to people with dementia.

 

The issue was covered on BBC Radio 4’s In Touch programme a week ago last Tuesday, where Caroline was interviewed:

 

https://www.bbc.co.uk/programmes/m000pfh1

 

The good news is that physical assistance by TfL staff was finally restored, returning on Monday this week.

 

I hope these links are useful:

 

https://www.citymatters.london/physical-assistance-for-blind-travellers-reinstated-on-tfl/

 

https://twitter.com/TfL/status/1330526455659368461

 

 

Caroline has been raising this issue for quite some time.   There have been some horrific cases facing blind people during the Covid pandemic, such as the experience of Kesley Trevett at Harrow-on-the-Hill tube station.

 

https://www.mylondon.news/news/north-london-news/blind-teenager-left-stumbling-around-19019680

 

 

We were first contacted about this issue on the 30th June and immediately took up it with TfL through the casework system.   Caroline has been pushing for chance in the policy since then

 

What has been really frustrating that the policy adopted by TfL has not even been the same as rail companies operating across the country.  As you can see from the enclosed guidance produced by the Rail Delivery Group, which covers the train operating companies, physical guidance being offered has been recommended, subject to basic safety steps being taken.

 

On a totally separate issue Caroline should also be appearing on next Tuesday’s Radio 4 In Touch programme on the issue of tactile paving at stations.  We have discovered that across the UK there are 35% of railway facilities which do not have this facility.

Letter to Editor: This Carers Rights Day, Thursday 26 November, Revitalise are here to support unpaid carers

November 26, 2020

Our Editor received the following letter, which we are publishing with pleasure. If you would like to send us a letter for publication, please email samedifferenceone@hotmail.co.uk

 

As a charity we’re supporting Carers Rights Day, and this year the focus on home carers has never been more important.

It is estimated that since the start of the pandemic, a shocking 4.5 million people have become carers – taking the total number of carers in the UK to 13.6 million.

The pressures on these unpaid home carers, who are nursing and caring for seriously ill or disabled loved ones 24 hours a day, have become intolerable this year. Largely because the Emergency Coronavirus Act allowed Local Authorities to axe their duty of care responsibilities towards the disabled and the elderly.

Revitalise has provided respite care breaks – a vital lifeline to so many unpaid home carers and their disabled family members – for over 57 years. We have around the clock, nurse led care at our centres and are in a perfect position to accept guests in need of a break. Sadly, the Government have imposed blanket 14-day isolation guidelines for anybody entering any care setting, meaning anyone wishing to stay with us would need to stay in their rooms for a fortnight.

As a result, desperate families have been stripped of any hope of respite care support at a time when they need it most. So many of the families we usually support are now at breaking point.

One carer, Hilary said: “I try to keep myself calm, and tell myself I know I’m not the only one struggling like this, but I just can’t physically do it. It’s a desperate thing, we both just urgently need a break.”

This is why we have launched our campaign, Care For Carers and the fundraiser Raise a Million, aiming to raise £1 million to support carers and their loved ones to access respite care breaks following lockdown. In the short time it’s been going it has already reached an audience of over 4 million and received celebrity support from the likes of Revitalise Vice President Dame Judi Dench, Rory Kinnear and Alexei Sayle.

I am so proud to work for Revitalise as we amplify the voice of carers, and will continue to do so until carers stories are heard. Please support our campaign if you can, and help us spread the word about the struggles carers are facing right now.

To find out more about Revitalise, our breaks, or the ways that we may be able to support guests, please visit: www.revitalise.org.ukor call: 0303 303 0145.

Devon Prosser, Revitalise
www.revitalise.org.uk

Girl’s Backflip Challenge For Down’s Syndrome Charity

November 26, 2020

A nine-year-old girl is aiming to complete more than 1,000 backflips in November to raise money for charity.

Imani, from Knaresborough, is aiming to perform 1,021 flips by the end of November this year.

She is raising money for Sunshine 21, which provides support for families who have children with Down’s syndrome, including her sister Felicity.

Face coverings in Wales’ secondary schools could have serious consequences for deaf children

November 25, 2020

A press release:

The National Deaf Children’s Society has responded to face coverings becoming compulsory in communal areas in all Wales’ secondary schools.

Debbie Thomas, Head of Policy at the National Deaf Children’s Society Cymru, said:
 
“Face masks and coverings in communal areas could have serious consequences for Wales’ 2,500 deaf children, almost all of whom rely on lip reading and facial expressions to communicate.
 
“Socialising in corridors, break time chats and playground games are all rites of passage, but deaf young people now risk missing out because they can’t understand what others are saying. They’re also more likely to experience loneliness, isolation and bullying.
 
“Public health is the priority, but schools and colleges must move quickly to introduce reasonable adjustments to help deaf young people during this difficult time.” 

Boccia England survey confirms the sport’s positive impact on physical and mental wellbeing

November 25, 2020

A press release:

Boccia England, the national governing body for the disability sport, has released the findings of its 2020 survey which show that, despite the impact of Covid-19, the game is making a significant difference for players with limited mobility. 81% say playing boccia is having a positive impact on their daily lives, and for 76%, participating in the game has improved their confidence.

 

Asked about playing boccia outside of the Covid-19 restrictions, 66% replied that they play once a week or more, and 39% say it has encouraged them to get involved in other activities where possible.

 

Boccia is an international target ball game played from a seated position and is ideal for wheelchair users. It tests muscle control and accuracy as players propel balls to land close to a white marker ball. Over 54,000 people in England played the game in 2020, and for over half the regular players it is the only sporting option open to them.

 

The survey asked about the impact of Covid-19 on players’ levels of activity and on their mental health. 51% of respondents are less active now as a direct result of the need to stay safe, and for 47% there has been a significant impact on mental wellbeing.

 

Nineteen-year-old Azhad Fauzi plays boccia through his club in Durham. During the first pandemic lockdown, Azhad took part in The Rainbow Cup, an online competition organised by Boccia England.

 

He says: “The Rainbow Cup was an amazing way to stay connected and to share my progress with friends and family. It has given them a small insight to what Boccia was and how important it is to me. It sparked a spirit that I thought had been lost during isolation and made me more motivated and competitive with every challenge. It allowed me to be creative and use the limited space and resources around me that I never knew could be helpful for training.” 

CEO of Boccia England Chris Ratcliffe said: “The results of our annual survey cover the period affected by the pandemic when we launched Boccia at Home. I’m delighted to see how the game is being played for fun, or competitively in kitchens, dining rooms and gardens and then streamed online. It’s all about giving people a way to build back physical and mental resilience, as well as maintaining a sense of social and community involvement.

“In time we will be able to get back to our local clubs and the face-to-face competitions all of us enjoy.  Despite the limitations we face, it’s clear from the survey that this game makes a massive difference in the lives of people who would otherwise miss out on the benefits a sport can bring”. 

DWP Staff Don’t Understand PTSD Says Royal British Legion

November 25, 2020

Disabled ex-armed forces personnel are being let down by the welfare system, with many experiencing stress and anxiety brought on by the struggle to access social security benefits, according to the Royal British Legion.

The charity said frontline Department for Work and Pensions (DWP) staff were insufficiently aware of their obligations under the armed forces covenant, which requires public services to give special consideration to injured ex-service personnel.

Among the difficulties reported by veterans to a Royal British Legion survey was the failure of benefits officials to understand post-traumatic stress disorder (PTSD) when carrying out and scoring health assessments for disability benefits.Advertisementhttps://cc84282e08ce3bdb28bd71394d580ab1.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

“I have PTSD, borderline personality disorder, anxiety and depression and the assessor said I had no psychological symptoms,” one respondent said. “I supplied a consultant psychiatrist letter stating all my mental health conditions. I scored zero on mental health. This is laughable.”

Benefit eligibility assessors often failed to understand the condition and lacked insight into PTSD and how it affected daily life, the report said. “For many veterans who struggled to access military compensation for their mental health conditions, undergoing another assessment for welfare support was an upsetting experience.”

Veterans also felt they were punished at face-to-face assessments because they were smartly dressed, which they believed led officials to believe they could not possibly be ill. “There was little understanding of the military mindset, where military personnel are expected to be well presented and turned out at all times.”

The legion report, carried out with the charity Poppyscotland, said veterans who had received permanent military compensation awards for injuries sustained in the service were left stressed and anxious by the continuous cycle of re-assessments for DWP disability benefits.

“The whole process makes me feel harassed and it is almost as if I’m a suspected fraudster,” said a veteran with PTSD in the report. “It is simply criminal to put people through this repeatedly.”

The legion survey found nearly two-thirds of veterans struggled to complete the application form for employment and support allowance, while three quarters had difficulty with personal independence payment paperwork. According to the legion, 39% of army recruits have a reading age of 11 or lower.

“At the Legion we support injured veterans who can sometimes struggle to access benefits to which they are entitled, simply because the system doesn’t always acknowledge their unique needs or injuries sustained whilst serving in the military,” said Matthew Seward, assistant director, public affairs and public policy, Royal British Legion.

Mark Collins, the chief executive of Poppyscotland, said: “Injured veterans often struggle to access benefits because the system doesn’t understand their needs or time in service. Too many face challenges accessing the essential financial support that they need and deserve.”

The DWP said it would give the report careful consideration. “The department recognises the sacrifices made by the brave men and women who serve in our armed forces, and is a proud supporter of the armed forces covenant,” said a spokesperson.

“As part of our commitment to supporting the armed forces community, our networks of DWP work coaches and Armed Forces Champions are in place to ensure that the support, guidance and advice offered reflects their needs, and all work coaches receive training on armed forces issues.”

There are an estimated 90,000 veterans of working age receiving military compensation. The Iraq and Afghanistan conflicts between 2001 and 2014 alone saw 22,000 servicemen and women medically discharged from the armed forces for physical or mental health reasons.

A study by a Salford University academic published last year found many armed forces veterans with complex needs reported overwhelmingly negative experiences of universal credit, disability benefits assessments and benefit sanctions.

A Fifth Of Disabled People Have Work Requests Refused

November 24, 2020

One in five disabled employees had their request to work from home, be furloughed or redeployed during the pandemic rejected, research has shown.

Scope found 22% of disabled staff were put in an “impossible position” of having to choose between keeping their job or staying safe.

It wants the government to give people on the clinically extremely vulnerable list the automatic right to furlough.

The government said it was the employer’s responsibility.

In a statement, the Treasury said: “Employers must ensure the safety of those with disabilities when considering working arrangements, including whether work can be completed remotely, and it is for employers to decide whether to make use of the furlough scheme.”

Katie Cheval, 30, from Kent, has mobility issues, a learning disability, chronic asthma and mental health problems.

She was initially put on furlough from her retail job, but when she returned to work she did not feel safe and decided to resign. She is now looking for a new job.

“In a shop with no window you’re right in the thick of it,” she said. “We were given gloves which were too small and an apron, but I can’t wear a mask due to my asthma and anxiety.”

Ms Cheval said her employer held a meeting about safety precautions such as only one person using the till per shift.

“That went out of the window pretty quickly,” she said. “I didn’t feel safe.”

‘Lives on the line’

The survey of 1,004 disabled adults by the charity, found 18% had their request to work from home denied while 11% were refused a request to be furloughed. A further 11% were told they could not be redeployed within their company.

More than half (55%) said they felt disabled people had been “forgotten” in the government’s economic recovery plan.

Alexis Hutchinson, 25, from Worcestershire, is a lay clerk – a professional choral singer. She has autoimmune hepatitis and fibromyalgia, and is in the extremely vulnerable category.

She was on flexi-furlough, which allows employers to bring furloughed staff back to work on a part-time basis, but has now been told she can return to furlough full-time until the government’s current guidance is reviewed on 2 December.

Ms Hutchinson said: “What I really want from the government is to make sure people who don’t feel safe going to work have the option to be furloughed, protecting the jobs and careers we have worked so hard for, without forcing us to put our lives on the line.”

James Taylor, the executive director of strategy at Scope, said the fact it was “down to employer discretion” meant there was currently “no guarantee” disabled people would have their jobs and health protected.

“Furlough is a vital safety net for disabled people who don’t feel safe in the workplace, but whose jobs cannot be done from home,” he said.

Tablet For Visually Impaired Helps Through Lockdown

November 24, 2020

A specially designed tablet has been given to people who are partially sighted to help them stay connected with family and friends through lockdown.

The Halifax Society for the Blind loans the tablets to people who use the service in the area.

Margaret, 86, is one of the first recipients and said: “It will open up new worlds, I’m only at the very beginning of it now.”

The tablet has audio instructions and special large text to help those who have sight problems use it.

The charity is run by volunteers and is funded by donations and a lottery grant. The cost of the tablet is subsidised by the charity’s donations.

Patrick Quinn: Ice Bucket Challenge Activist Dies Aged 37

November 23, 2020

Patrick Quinn, one of the men who helped drive the wildly popular Ice Bucket Challenge fundraising campaign, has died aged 37.

Quinn, a New Yorker, was diagnosed with the incurable neurological disease amyotrophic lateral sclerosis in 2013.

He died on Sunday morning, his supporters wrote on his official Facebook page. “He was a blessing to us all in so many ways,” they said.

The viral campaign has raised $220m (£163m) for ALS research.

The Ice Bucket Challenge did not begin with Quinn, but he and his family and friends helped it become a global social media phenomenon in the summer of 2014.https://emp.bbc.co.uk/emp/SMPj/2.36.3/iframe.htmlmedia captionFormer US President George W Bush was among those to take the challenge

To complete the challenge, people would dump a bucket of ice water over their heads and post the video to social media, challenging others to do the same or make a donation to ALS research. Often, people did both.

The challenge drew high-profile participants like former President George W Bush, Oprah Winfrey, Lady Gaga and President Donald Trump.

Last year, Pete Frates – the former college baseball star who was another key figure in the campaign – died aged 34.

2px presentational grey line

Amyotrophic Lateral Sclerosis (ALS)

  • Rare condition where parts of the nervous system become damaged, causing progressive weakness, usually with muscle wasting
  • Known as motor neurone disease (MND) in the UK
  • In the US it is often called Lou Gehrig’s disease, after the famous baseball player who was thought to have died from the disease
  • Occurs when specialist nerve cells in the brain and spinal cord called motor neurones stop working properly; as the condition progresses, sufferers find basic activities such as walking, speaking, swallowing and breathing increasingly difficult to do
  • Life expectancy for about half of those with ALS is three to four years from start of diagnosis, but some can live 10 years or longer – Prof Stephen Hawking had ALS for 55 years
  • Source: NHS Choices

Sia Fires Back At Disabled Community Over Feature Directorial Debut ‘Music’

November 23, 2020

Pop singer/songwriter Sia is facing criticism on social media following the release of the trailer for her directorial debut, titled “Music,” on Thursday. In the inspirational musical drama, Sia casts her longtime collaborator Maddie Ziegler as an autistic teenager, and Twitter users were quick to knock Sia for not placing an actually autistic person in the role, accusing the Grammy-nominated singer of ableism.

“Several autistic actors, myself included, responded to these tweets. We all said we could have acted in it on short notice. These excuses are just that- excuses,” tweeted one user. “The fact of the matter is zero effort was made to include anyone who is actually autistic. #NothingAboutUsWithoutUs”

“Maybe you’re just a bad actor,” Sia wrote in response.

Directed by Sia, “Music” is co-written by the pop icon with Dallas Clayton, with Sia writing and performing all of the songs. It’s set for a theatrical release in IMAX in February. Star Ziegler is best known for her dance work in the majority of Sia’s music videos, from “Chandelier” to “Elastic Heart.”

“It’s a mighty shame that someone with such a colossal platform is using it to exclude disabled and neuro diverse actors from their own narratives,” tweeted another user. “I’ve been a long time fan of your work, so this is really disappointing.”

Sia continued to defend herself, writing on Twitter, “Fucking bullshit. You have no fucking idea because you weren’t there and haven’t seen the movie.” She also pointed out that for the film, co-starring Kate Hudson and Leslie Odom, Jr., she cast “thirteen neurotypical people, three trans folk, and not as fucking prostitutes or drug addicts but s [sic] as doctors, nurses and singers. Fucking sad nobody’s even seen the dang movie. My heart has always been in the right place.”

At another point, Sia tweeted, “Grrrrrrrrrr. Fuckity fuck why don’t you watch my film before you judge it? FURY.”

Also on Thursday, Sia released the first single from the movie, titled “Hey Boy,” which is one track off the soundtrack album that will accompany the film.

The plot of “Music” centers on Hudson as a newly sober drug dealer named Zu who winds up as the sole guardian of her autistic half-sister Music (Ziegler). Together, they overcome myriad obstacles in a film that explores community and togetherness.

Sia said that she didn’t cast a disabled actor because “casting someone at her level of functioning was cruel, not kind, so I made the executive decision that we would do our best to lovingly represent the community.”

Sia also added that she spent “three years” researching the film, which is also courting controversy due to Autism Speaks, whose reputation within the community is debated. Sia said the group came on board after the film was finished.

 

Representatives for “Sia” did not immediately respond to IndieWire’s request for comment.

 

 

 

‘DOCUMENT LOVE, NOT DISABILITY’, HUMANITARIAN PHOTOGRAPHER TELLS QF’S EDUCATION CITY SPEAKER SERIES

November 20, 2020

Our editor was invited to listen in to this event. It was enjoyable as well as educational. The press release below is published with pleasure.

Online talk in collaboration with WISH sees Afghan blast victim Giles Duley speak about the challenges of perception that people with disabilities still face

Doha, Qatar, November 18, 2020: An award-winning photographer, humanitarian, and activist who lost three of his limbs in an Afghanistan blast has spoken of the “constant challenge” people with disabilities face to make others realize what they are capable of, in the latest edition of Qatar Foundation’s Education City Speaker Series.

The event, in collaboration with the World Innovation Summit for Health (WISH) – the global healthcare initiative of Qatar Foundation (QF) – saw Giles Duley, renowned for his work covering the human impact of war, speak about his own journey to cope not just with the physical injuries he suffered in 2011, but the mental toll they took.

In a talk titled Reframing Our View Of Disability, held during the WISH 2020 virtual summit, Duley told his story through his own black-and-white photographs – and those taken of him in the moments, weeks, and months after he lost both legs and an arm when he stepped on an improvised electronic device while on patrol with a US regiment in Afghanistan. 

And he told the online audience who tuned in to QF’s global dialogue platform: “Too often, people with disabilities are shown as victims, but I rarely find that – what I find instead is resilience, strength, fortitude and, more often than not, humor.

“I’m not a war photographer. My job is to document love. For people with disabilities, our injuries are often the only focus of the story, but the things that should instead be focused on are our love stories.

“I realized my greatest disability is in the eyes of others, and when people see me missing my limbs, they make assumptions about what I can and can’t do. And it is hard, and there are days when it is overwhelming, because we live in a society that makes it harder for us. But, equally, I do believe that people with disabilities can live a full life – and that, most importantly, we can love and be loved.”

Duley explained that one of the greatest obstacles people with disabilities face is “the perceptions of others”, saying: “You’d be amazed how many times people ask me if I can be in a relationship – it can be as if people think we’re not able to lead normal lives.

“Everyone fights this in their own way but, for me, it’s about showing what I can do. There are very few photographers with injuries like mine – we are often the subject, not the storyteller. I tell people I’m just an angry man with a camera, who wants to make sure that someone sees a photograph I take and that something positive happens from it. I couldn’t go home and feel I was leaving the people I photograph behind without anything changing.

Speaking about the need for progress in the way people with disabilities are perceived, Duley said: “There is still a long way to go – look at the representation of people with disabilities on television.

“They make up a very small percentage of people on screen and they tend to be portrayed as villains – every James Bond villain, for example, seems to have a facial disfigurement or be missing a limb. It’s actually quite hurtful and we have to stop representing people with disabilities in this way.”

Duley also revealed that his battle to overcome depression after his injuries was “a greater battle than dealing with losing three limbs”, saying: “When people trivialize mental health and say ‘pull yourself together’, I can tell you that regaining my mental health was harder than the physical injuries, but what got me through it was finding purpose, and through dealing with depression I built the resilience that gave me strength.

“People around the world have gone through incredibly difficult things, but still see more joy than anyone. Resilience is life’s gift for dealing with suffering.”

Wrexham FC: Rob McElhenney Pays £6,000 To Adapt Fan’s Home

November 19, 2020

A lifelong Wrexham FC fan said he “feels amazing” after the club’s new Hollywood star owner donated £6,000 to adapt his home.

Aiden Stott, who has cerebral palsy, had been trying to raise the cash to get a bathroom so his family could wash him.

On Wednesday, he woke up to find the entire sum had been donated by actor Rob McElhenney, who is set to take over the club, alongside Ryan Reynolds.

Mr Stott said he “couldn’t believe it”.

The football fan, who has been a season ticket holder for several years and is a member of the club’s Disabled Supporters’ Association, said he was blown away by the generosity of everyone who had donated.

“It means the world to me, it really does,” said Mr Stott.

After cuts to his care, the 37-year-old’s parents sold their family home to buy a flat for him to live closer to them in Manchester.

But after finding out adapting the bathroom to make it safe for Aiden, his family and carers, would cost £6,000, the family decided to set up a fundraising campaign.

“I had been deliberating whether to do it or not, because there are so many people in worse positions than us, it’s not like Aiden is starving, he’s got a roof over his head,” his sister Cheryl said.https://emp.bbc.co.uk/emp/SMPj/2.36.3/iframe.htmlmedia caption‘Wrexham has the potential for growth’

On Monday, Wrexham Supporters Trust (WST) members voted overwhelmingly to back the takeover by It’s Always Sunny in Philadelphia star McElhenney and Reynolds.

While a number of people had already donated to the fundraising campaign, Cheryl said she was woken up on Wednesday by a friend telling her to look at the page.

“It was there, his name, no message, obviously I wrote a message to him and told him he made my mum cry, but we haven’t heard anything from him,” she said.

“That a Hollywood movie star looked at a picture of my brother and read his little story and what he’s going through, it’s just incredible.

“It’s amazing that he bought the club in the first place, which we are all really excited about, but to do that as well, it just shows his true character and meaning.”

Ms Stott, a firefighter, said since the donation, more companies had come forward saying they would adapt the bathroom for a lower price.

“This means we can get him carers quicker as well… it’s not just the bath it’s being able to employ people to look after him and not to rely on his dad,” she said.

Steve Gilbert, chairman of the club’s Disabled Supporters’ Association, said everyone was overwhelmed by the star’s generosity.

Mr Gilbert said he tweeted McElhenney the link to Aiden’s campaign on Tuesday in the hope he could generate some interest.

“I am still choked up about it, I still can’t really put into words what it means,” he said.

“Rob contacted us on Twitter five or six weeks ago, he told us he had spoken to Ryan, and he had said accessibility and inclusion was very important to them.

“A day into their ownership and they have already done this, we are just chuffed.”

Mr Stott said he would love to meet the club’s new owners and thank McElhenney for his lovely gift.

“That would make my day,” he said.

Dementia In Football: PFA To Create Taskforce To Examine Issue Of Brain Injury Diseases

November 19, 2020

The Professional Footballers’ Association is setting up a new taskforce to further examine the issue of brain injury diseases in football.

The PFA has been criticised for a lack of support by families of ex-players who have died of, or have dementia.

It is understood it plans to speak to ex-Blackburn forward Chris Sutton, whose father, Mike, has dementia.

The union will also engage with Dawn Astle, the daughter of former West Brom and England striker Jeff Astle.

Neuropathologist Dr Willie Stewart said Astle died of a brain condition normally linked to boxers, and that it was caused by heading footballs.

Stewart’s research into the issue, which was commissioned by the PFA and the Football Association, found that former footballers were between two and five times more likely to die from degenerative brain diseases.

The PFA said on Tuesday that it would continue to fund Stewart’s research at Glasgow University.

On Wednesday, it said members of its new Neurodegenerative Disease Working Group (NDWG) “will be invited personally and are not yet confirmed” and added that the taskforce would “ensure a more holistic support system is available for former footballers and their families”.

“By establishing this advisory group, we hope to give the people most affected a strong voice in how the PFA supports former players and seeks to protect current players,” the union said.

The introduction of a taskforce comes amid criticism from the family of 1966 World Cup winner Nobby Stiles, who said football needs to “address the scandal” of dementia in football.

The ex-Manchester United and England midfielder died in October, aged 78, after suffering from dementia and prostate cancer.

Stiles is the fifth member of England’s World Cup-winning squad to have been diagnosed with a brain injury disease.

Speaking to BBC Radio 5 Live, Sutton, whose father played for Norwich, Chester and Carlisle, said: “Not enough is being done and the players of Nobby Stiles’ generation aren’t getting looked after well enough. It’s as simple as that.

“It’s not just the dementia sufferer, it’s actually the effect that has on the families.

“I know only too well the effect it has had on my mother.”

Could former players take legal action?

Lawyers are asking to hear from former players who want to take legal action against football and other sports regulators “with respect to brain injuries caused by contact sports including football”.

The move would be similar to the class action taken by NFL players in the United States, where they sued the sport for £700m because of the brain damage they suffered from concussions.

The legal team bringing the action features personal injury specialists John Foy QC and James Byrne, plus sports lawyer Nick de Marco QC, who said: “The litigation is still in its early stages and we still want to hear from professional sports players.

“Nonetheless, the stories emerging tell us of a pattern of silent suffering caused by life changing and sadly often fatal brain injury conditions, that underlines that this is a serious endemic issue.

“The science proving the link between repeated blows to the head and brain injury has been around for many years, a key question the courts will be interested in is whether football, and other contact sport regulators, have taken timely and proper steps to prevent the injuries we are seeing.

“By bringing this case we hope, not only to provide our clients with adequate compensation to pay for the future medical treatment and care they will inevitably need, but also to bring about much needed reform to protect all players in sport, whether amateur or professional, adult or child.”

Heading in training ‘more detrimental’

On Wednesday, World Cup winner Sir Geoff Hurst told BBC Breakfast he thought heading a football in training is “probably more detrimental” to players than in matches.

Hurst, who wants to donate his brain to dementia research, believes links between heading and dementia are “more than a coincidence”.

But the medical chief of the world players’ union said more “robust” evidence of a link between heading and dementia is required before football can introduce training restrictions at the professional level.

“You could look at some of the games I played in where I hardly headed the ball, but it’s the practice,” Hurst said.

“I look at my club West Ham, we had a ball hanging from the ceiling in the gym, you’d spend half an hour, 45 minutes practising heading a ball swinging from the ceiling.

“We’d play head tennis in the gym and then you get on to the field and you’d practise what we were well-known for at West Ham, which was the near-post crosses and the near-post headers. That could be 20 minutes, half an hour.

“So the enormous amount of practice of heading the ball is probably more detrimental to players than in a match.”

Dr Vincent Gouttebarge, the chief medical officer at world players’ union Fifpro, said: “We need to have more robust evidence in order to make a decision.

“I know in the UK you have referred to the very good study from Professor Willie Stewart, but I looked at the study again this morning and I didn’t see the words ‘heading’ or ‘concussion’ mentioned one time in this study.

“Based on that study a lot of media in the UK made the conclusion that heading the ball or concussion lead to dementia, and I don’t think this is a very thorough conclusion.

“I don’t think we have the scientific evidence with this study that there is a causal relationship between heading the ball, concussion and dementia.”

UK Parliament launches new educational resources to mark Disability History Month

November 19, 2020

A press release:

 

UK Parliament is launching a new pack of educational resources to celebrate Disability History Month which runs from 18th November to 20th December.

Illustrated by Ananya Rao-Middleton, the downloadable book includes six stories exploring the lives of people who have influenced disability laws and rights in the UK. The resource is suitable for teachers, home educators and parents to share with children aged seven to 11.

Among those featured are Dame Anne Begg, one of the first wheelchair users in the House of Commons and Ben Purse, whose activism led to the first law in the world to support the working rights of people with a disability.

Other people included are the artist and diversity champion Deborah Williams, disabled suffragette Rosa May Billinghurst, Lord Alf Morris and Baroness Jane Campbell. Their stories are complimented by activities which encourage children to think about how to make the games they play more inclusive.

This is the latest in a series of educational resources provided by Parliament. In October, as part of Black History Month Parliament launched a resource containing stories of influential black Britons who have impacted UK laws and equal rights. Similar resources are also being developed on LGBT and Women’s history.

Sir Lindsay Hoyle, Speaker of the House of Commons said:

“I am so pleased that Parliament is marking Disability History Month this year. These innovative resources are a brilliant way for young people to learn about and celebrate the valuable contributions of people who have impacted disability rights and laws in the UK.

It is so important that we not only recognise these achievements, but also strive to make Parliament a more inclusive and accessible space for those with disabilities.” 

The Lord Speaker, Lord Fowler said:

“Marking Disability History Month at Parliament helps us remember how far we’ve come and how far we’ve still got to go with equal rights for disabled people. I’m proud that Baroness (Jane) Campbell of Surbiton, who serves in the House of Lords today, is featured in this brilliant new pack. I hope these stories will be an inspiration to young people who want to fight for change”

UK Parliament has worked alongside the Shaw Trust to produce the pack and some of the stories also feature people who are part of the Shaw Trust Foundation Power 100 list.

Chris Luck, CEO and Clare Gray, Organisational Lead for Disability Advocacy from the Shaw Trust said:

“Shaw Trust has welcomed the opportunity to be involved in the creation of this educational resource. The Power 100 list produced by Shaw Trust highlights the ongoing work of people from the disabled community who continue to impact the current and future legislation for disability rights. All young people benefit from having role models to inspire and to develop their future leadership potential to influence changes for the benefit of everyone”

Illustrator Ananya Rao-Middleton said:

As an illustrator and chronic illness activist, working with Parliament on the Your Story, Our History book has enabled me to delve into the exciting, varied and powerful lives of UK figures who have stood out in making a difference in the lives of disabled people.

“As someone living with chronic conditions myself, working on this book has fortified my belief that change is possible and that as disabled people we are powerful and capable of being change-makers. Whilst we still have a lot of work to do to make our society disability-friendly in all areas, I feel determined that by inspiring young people with books like Your Story, Our History we can create the changes needed to reach this vision”

Nobby Stiles: Family Says Football ‘Must Address Scandal Of Dementia’ Affecting Former Players

November 18, 2020

The family of 1966 World Cup winner Nobby Stiles says football needs to “address the scandal” of dementia in the game.

And they criticised the Professional Footballers’ Association, saying there had been a lack of support for players.

The ex-Manchester United and England midfielder died in October, aged 78. He had dementia and prostate cancer.

Stiles is the fifth member of England’s World Cup-winning squad to have been diagnosed with dementia.

Previous research has shown that ex-footballers are three and a half times more likely to die of dementia than the general population.

In a statement paying tribute to their pride of “what he achieved but more importantly, the man he was”, the family said: “There is a need for urgent action.

“These older players have largely been forgotten and many are in ill health, like dad.

“How can it be that these players are left needing help when their own union has tens of millions of pounds available today?

“How can it be that these players struggling when the Premier League receives £3bn a year? The modern player will never need the help required by the older lads. How can it be right that some of the heroes of 1966 had to sell their medals to provide for the families?

“These older players are dying like my dad. Many don’t have medals to sell. It is right, of course to seek to identify the cause of dementia in older players but in truth the cause is irrelevant to the older players. Whatever the cause they need help now. I hope dad’s death is the catalyst for this scandal to be addressed.”

Stiles made 397 appearances for Manchester United between 1960 and 1971, later going on to play for Middlesbrough and Preston North End.

He won 28 caps for England and is the seventh member of the England team that started the 1966 World Cup final against West Germany to die, after captain Bobby Moore, Alan Ball, Ray Wilson, Gordon Banks, Martin Peters and Jack Charlton.

He had a minor stroke in 2010, and was then diagnosed with Alzheimer’s disease and prostate cancer.

In a BBC documentary screened in 2017, Stiles’ son John told former England captain Alan Shearer he was “utterly convinced” heading a football was responsible for his father’s dementia.

BBC Sport has contacted the PFA for comment.

In a statement, the Football Association said: “We continue to work closely with the Alzheimer’s Society and, alongside other sport governing bodies, we are pleased to be a part of their Sport United Against Dementia campaign to help raise awareness and gain support for their valuable work.

“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.”

RNID design Christmas game to help tackle ‘Dinner Table Syndrome’ which can often make many deaf people feel socially isolated

November 17, 2020

A press release:

RNID, the leading charity working to make life fully inclusive for deaf people and those with hearing loss and tinnitus, has designed a Christmas dinner party game for families, friends or colleagues that’s inclusive of people with hearing loss as well as being lots of fun. The game was designed to help tackle ‘Dinner Table Syndrome’ a phenomenon in which deaf people or people with hearing loss are perpetually left out of conversations.

One in five people in the UK has hearing loss, so it’s likely that someone at your dinner table this Christmas could find it difficult to follow the conversation, especially if it’s loud and several people are talking at once. It’s impossible to lipread more than one person at a time and trying to keep up can be really draining. The game draws attention to these challenges, encouraging everyone at the dinner table to be mindful of how they communicate with others – all while having some festive fun.

Evie Cryer, who became deaf in her twenties, explains her experiences of dinner table syndrome as a child and the feelings of isolation and loneliness that she felt as a result:

“I was born hearing. I grew up the centre of attention, or at least battling my sister to be centre of attention. I am a very sociable person and love to be around friends and family, chatting, talking and generally putting the world to rights.

I started to lose my hearing as an adult. I had surgery on my ears as a child and I first noticed a drop in my hearing at around age 23. I was eventually told this was due to scar tissue on my eardrums. I was fitted with two behind-the-ear (BTE) hearing aids but all they did was make everything louder. I invested in private hearing aids which mimicked natural ears and at least attempted to filter sounds.

As my hearing loss developed, I found myself favouring 1-1 or small group interactions. I did so to avoid that drowning sensation of failing to follow a multitude of voices and sinking into isolation as you become further and further behind.

When out for tea one night with my better half, I realised I hadn’t ‘heard’ a word she’d said over the din of other diners, waiters, pots, glasses clinking and feet stomping.

Rather, I had lipread everything almost word-for-word. Suddenly, the excitement at the idea of being able to survive, even in crowded places, thrilled me. Little did I realise how draining or isolating it could still be.

Back then, I didn’t know that it’s a situation and feeling well known by the deaf community. It even has a name: ‘Dinner Table Syndrome’.”

Evie adds how she explains ‘Dinner Table Syndrome’ to hearing people:

Imagine you are sitting around the table with 10 people, all chatting about what they watched on TV the previous night. But instead of speech coming out of each mouth, each sentence is a separate text message bubble being released into the air.

As a lip-reader, in order to follow the conversation, not only do you have to read each bubble as it is released, but you have to work out which order to read them in, and read the facial expressions of each person to know the context of what they have said.

You’re always slightly behind, and it’s incredibly draining.

I’m lucky in that that my hearing aids give me a level of hearing that means I can follow in small groups, and especially in quiet surroundings – for instance, at my own dinner table. But I know there are deaf people for whom this is not the case, and for whom the festive period brings anxiety and social isolation.

My Christmas wish is for hearing people to ask their deaf friends and family two things, how best to make their dinner table deaf-friendly and how to reduce social isolation for deaf people.”

Paul Hayward, Head of Public Fundraising at RNID said;

“Our Christmas dinner party game is a great alternative to the quizzes so many of us have taken part in as we have spent time at home throughout 2020. As well as enjoying the fun activities, we hope people will think about how they communicate with others and be deaf aware. By ordering one of our Christmas dinner party games, people will be supporting our work to make life fully inclusive for deaf people and those with hearing loss or tinnitus”.

To order your game pack by Sunday 6th December 2020, please complete the online form and make a donation at: https://rnid.org.uk/get-involved/donate/christmas-dinner-game/  

Your donation will help the RNID to make life fully inclusive for deaf people and those with hearing loss or tinnitus.

Thousands Of PIP Claimants NI Numbers Published Online For Years

November 16, 2020

With many thanks to Benefits And Work.

 

The Daily Mirror is reporting that the DWP published more than 6,000 PIP claimants national insurance numbers (NINOs) online for more than two years before they were spotted and removed this week.

The numbers were included in a list of payments to Capita published online by the DWP in 2018.

Individual payments for assessments were listed along with the NINO number of 6,000 claimants.

The spreadsheet was removed by the DWP on Monday night, after they were alerted to the breach.

A second spreadsheet was due to be removed last night after the Mirror alerted the DWP to it.

It is unlikely that any claimant could be identified solely by their NINO, nor is it likely that this information alone would allow identity fraud to be committed.

But the failure to keep claimants data safe by an organisation that collects such huge amounts of information is clearly troubling

A DWP spokesman told the Mirror:

“Information issued in error as part of our regular transparency releases has been removed and will be replaced with revised data as soon as possible.

“While no one can be identified from the additional information published, we apologise for the mistake.

“We take our responsibility to protect data very seriously and have reported the incident to the Information Commissioner’s Office.”

The DWP did not say whether they would contact affected claimants to inform them of the breach or offer an apology or compensation.

You can read the full story in the Mirror.

Claimant Dies After Being Refused Home PIP Assessment

November 16, 2020

With many thanks to Benefits And Work.

 

The family of a claimant who died after Capita refused a home PIP assessment last year have blamed the DWP for her death because of a failure to safeguard her.

Philippa Day, 27 and mother of a young child, died last October as a result of an insulin overdose.

A letter was found beside her body refusing to allow her to have a PIP medical at home and instead obliging her to attend a face-to-face assessment at an assessment centre. Her family believe she took her own life as a result. An inquest began on Friday.

Philippa was diabetic and had been diagnosed with emotionally unstable personality disorder which resulted in her being afraid to leave home following an abusive relationship..

Philippa’s PIP had been stopped because, according to the Guardian of ‘missing paperwork’. She became increasingly despairing and had repeated stays in psychiatric hospitals following episodes of self-harm and drug misuse.

Philippa’s community psychiatric nurse requested that she have her PIP assessment at home because of her acute distress. But despite several such requests, Capita insisted that she must have a face-to-face assessment at an assessment centre.

Philippa’s sister Imogen told the Guardian:

“What needs highlighting in this case is that my sister was a young, pretty, middle-class white woman and they [the DWP] still ruined her life. Because of our family’s privilege it is our moral responsibility to speak out. There are so many people who don’t have this voice,” she said.

“My sister bore her trauma well. She was able to connect with people and help them in her worst moments. She had ambitions to become a mental health support worker. All she wanted to do was help other people. She took that pain and made something quite wondrous with it.”

You can read the full story in the Guardian

Covid Deaths For People With Learning Disability In England Six Times Average

November 13, 2020

People with learning disabilities are dying of coronavirus at more than six times the rate of the general population, according to “deeply troubling” figures that have prompted a government review.

A report from Public Health England (PHE) found that 451 per 100,000 people registered as having learning disabilities died after contracting Covid-19 in the first wave of the pandemic, when the figures were adjusted for age and sex.

Because not all Covid deaths among people with learning disabilities are registered as such, the true figure is likely to be 692 per 100,000, or 6.3 times the UK average, the report estimated.

Campaigners said the figures showed the government had failed to protect the most vulnerable.

The report found that Covid deaths among those with learning disabilities were also more widely spread across age groups, with far greater mortality rates among younger adults.

Those aged 18-34 were 30 times more likely to die with the virus than their counterparts in the general population.

The higher death rate is likely to reflect the greater prevalence of health problems such as diabetes and obesity among those with learning disabilities, the report said. It also noted that some learning disabilities, such as Down’s syndrome, can make people more vulnerable to respiratory infections.

People with learning disabilities are also likely to have difficulty recognising symptoms and following advice on testing, social distancing and infection prevention, the report said. It may also be harder for those caring for them to recognise symptoms if these cannot be communicated, it added.

The care minister, Helen Whately, said she had asked the Scientific Advisory Group for Emergencies (Sage) to review the findings and advise on further action. Advertisement

Dan Scorer, the head of policy at the learning disability charity Mencap, said the review “must look closely at why so many people with a learning disability died from Covid-19 and what should have been done differently”.

He said: “The government has failed to protect some of our most vulnerable citizens. Decades of underinvestment in social care has left most people with a learning disability with no support to understand ever-changing guidance on staying safe and accessing testing.

“This, combined with the closure of the NHS for all but the most urgent care, has clearly had a devastating impact on people with a learning disability, and exacerbated already shocking levels of premature death and health inequalities.”

Prof John Newton, PHE’s director of health improvement, said: “It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.”

The shadow care minister, Barbara Keeley, called for immediate action to address the problem. In a letter to the health secretary, Matt Hancock, she said: “People with learning disabilities deserve better than this, they deserve action to protect them from increased risk this reports shows they have of catching Covid-19 and dying from it.”

The study examined data from the English Learning Disabilities Mortality Review (LeDeR) and NHS England’s Covid-19 Patient Notification System (CNPS), which records deaths in hospital settings.

LeDeR received 623 reports of deaths among people with learning disabilities that were definitely or possibly related to Covid-19 between the beginning of February and 5 June. This suggests a national total of 956 deaths after accounting for under-reporting.

The virus accounted for 54% of deaths of adults with learning disabilities in residential care in the review period, and 53% of the deaths of those receiving community care.

The number of deaths among white people with learning disabilities from all causes in 2020 was 1.9 times the number in the two previous years, the report said. For Asian or British Asian groups it was 4.5 times and for black or black British groups 4.4 times.

Whately said: “A third of those with learning disabilities who sadly died were living in residential care. There is now regular testing of staff and residents in care homes, and testing has also been rolled out to supported living settings in high risk areas.

“We’re also offering free PPE and the joint committee on vaccines and immunisation has proposed those living and working in care homes should be top of the list for vaccination.”

Newton said: “It is essential to practise rigorous infection control if you are in contact with someone with a learning disability, whether or not they live in a care home.”

Royal Mail Driver Wins £14,000 Payout Over Disability Harassment

November 13, 2020

A disabled man has won a £14,000 compensation payout from Royal Mail for disability harassment in what he described as a “toxic work culture”.

The case is the latest of a series of discrimination cases Royal Mail has lost. At a hearing at London Central employment tribunal earlier this month, Nabil Mehdinejad, a delivery driver based at Royal Mail’s Mount Pleasant sorting office in central London who has ADHD, dyslexia and dyspraxia, won his case for disability harassment. A senior manager described him as a “good worker, very good”.

He alleged that a manager, Muhammed Hafeez, approached him and then insulted and intimidated him by making repeated references to him being “dodgy”. As a result, and due to other concerns previously raised, Mehdinejad went on protracted sick leave. Advertisement

Although two witnesses supported Mehdinejad’s account, Hafeez denied making the comments. An independent caseworker upheld Mehdinejad’s complaint and said the comments were “wholly inappropriate … in any situation”.

Despite the findings of the independent caseworker, Royal Mail opposed the claim for disability harassment and said it was not aware of Mehdinejad’s disability.

The tribunal upheld the claim for disability harassment and found that Royal Mail had been aware of Mehdinejad’s disability , which was discussed directly with some line managers and adjustments made, since his application to join them and throughout his employment. It found that Hafeez was relying upon rumours for his accusations of Mehdinejad being “dodgy” and that he had a negative perception of Mehdinejad due to his disability.

The tribunal accepted Mehdinejad’s account of events and rejected the speculation by Royal Mail that the comments were intended as a joke, noting that no one had been laughing. It concluded that the line manager in question had “deliberately concocted a false account” and had used Mehdinejad’s disability to try to excuse his behaviour.

Mukhtiar Singh, of Garden Court Chambers, who represented Mehdinejad, said: “Mr Mehdinejad was particularly frustrated by Royal Mail’s denials which, at one stage, extended to denying that he was disabled and then denying knowledge of disability despite his line managers making reasonable adjustments.

“This case shows that an individual can take on a large organisation successfully, but also demonstrates the steps some large organisations will take to defend a discrimination claim. It is also a reminder that even in a single event case, damages can be substantial when discriminatory conduct has such an adverse effect on the worker.”

Mehdinejad said: “Twenty five years after the introduction of the Disability Discrimination Act, employers of this size are still getting it badly wrong. Disabled people do not have to tolerate loss of dignity and unfair harassment at work. The comments made me feel loss of dignity whilst humiliating me in front of my co-workers.

“This was not the first incident. Working at the Mount Pleasant mail centre, the hub as it were, I believed that this behaviour and toxic work culture was tolerated: this is really worrying. I hope that being awarded aggravated damages demonstrates the harassment and bullying is not tolerated by the employment tribunal, even if the company is as large as Royal Mail.”

Royal Mail has been approached for comment.

GPs to help deaf patients navigate remote appointments

November 12, 2020

A press release:

New toolkit will help doctors communicate more effectively with people who are deaf or have hearing loss

A new toolkit to support GPs to deliver care for patients with hearing loss and aiming to encourage deaf patients to access primary care, has been launched today. 

The educational kit, developed by Royal College of GPs (RCGP) in collaboration with the UK’s largest hearing loss charity, RNID and NHS England and Improvement aims to support GPs to consult effectively with deaf patients by offering tips on how to communicate during face to face and remote appointments.

It also offers guidelines on how to recognise early symptoms of hearing loss and how to refer patients for a hearing assessment. The project aims to support GPs implement the latest NICE Guidelines, the NHS Accessible Information Standard and Guidance across the UK.

GPs are currently following official guidance and delivering a large proportion of care remotely to manage infection control and keep patients and practice staff safe during the Covid-19 pandemic. However, when face to face appointments are necessary, they are being facilitated.

In a recent survey of people who are deaf or have hearing loss by RNID, more than 70 per cent of respondents said they ‘did not feel confident that their communication needs would be met during a remote appointment’ and over half admitted they had ‘put off’ seeking advice from their GP because of remote care, meaning they were at risk of missing out on vital medical care. 

Martin Marshall, Chair at Royal College of GPs said: “GPs and our teams have worked hard during the pandemic to swiftly transform the way we deliver services to ensure continued access to safe care.

“Remote care will of course not be suitable for all patients – and in these circumstances, face to face appointments are being facilitated in as safe a way as possible.  We do not want patients to be deterred from seeking care because they are unable or uncomfortable accessing our services remotely – something that as this survey shows, is the case for a significant number of deaf patients.

Dr Devina Maru, RCGP National Clinical Champion for Deafness and Hearing Loss said

“We are pleased to be working with the RNID to create resources to help support GPs communicate with deaf patients during both remote and face to face consultations, to ensure GPs feel equipped to deliver the best possible care and patients feel most comfortable when accessing our services.”

Ayla Ozmen, Head of Research and Policy at RNID, said:

“Under the Accessible Information Standard, all health and social care providers must identify, record and meet people’s specific communication needs. Even in these exceptional times, accessible standards must still be upheld and there are simple options that will improve the accessibility of services for people who are deaf or have hearing loss.

“We are thrilled to be working with the Royal College of GPs to help highlight the needs of people who are deaf or have hearing loss. There are 1 in 5 adults with hearing loss in the UK, and this is expected to increase to 15.6 million people by 2035. Unmanaged hearing loss can have a major impact on daily functioning and quality of life. It can affect communication, social interactions and work, increasing the chances of experiencing loneliness, emotional distress and depression.”

More information about the project and the toolkit can be found here.

Mo Farah & Hollie Arnold Trusted To Make Right Decisions, Says British Athletics

November 11, 2020

British Athletics “trusts” Mo Farah and Hollie Arnold will make the “right decisions” regarding their Tokyo 2020 plans during their stint on I’m A Celebrity… Get Me Out Of Here!

The duo are part of the line-up for the ITV show, which starts on Sunday.

Last year, Farah, 37, revealed his plan to return to the track and bid for a third successive Olympic 10,000m title at the delayed Tokyo Games.

Arnold, 26, is looking to defend her Paralympic F46 javelin title in 2021.

A representative of Farah has confirmed to BBC Sport that provisions are in place for anti-doping testing to continue as normal during his time on the TV show.

Because of coronavirus restrictions, this year’s I’m a Celebrity is taking place at Gwrych Castle in north Wales, rather than the usual Australian jungle location, and will last for three weeks.

“I hope by going on the programme, it inspires people,” said Arnold in a statement.

“Yes I have a missing arm and I am in the Paralympics, but I want to show people nothing stops me and it shouldn’t stop anyone else either.”

British Athletics confirmed that in line with its policy, it will suspend the APA (athlete personal award) funding for athletes involved in the programme and will reinstate it once they return to full-time training.

BBC Sport understands this will only impact Arnold as APAs are means-tested and Farah’s commercial income makes him ineligible.

“We trust in them and their support networks to make the right decisions around their preparations before the Tokyo Olympics and Paralympics,” said a British Athletics spokesperson.

Olympic champions Sam Quek (hockey) and Rebecca Adlington (swimming) have both taken part in the series in recent years, albeit after announcing their retirements from their respective sports.

Both the Olympics and Paralympics, scheduled for last summer, were postponed in March because of the coronavirus pandemic.

The Olympics, which will still be called Tokyo 2020, will be staged from 23 July to 8 August 2021 and the Paralympics will take place from 24 August to 5 September 2021.

Chris Nikic Becomes First Person With Down’s Syndrome To Finish An Ironman Triathlon

November 11, 2020

A 21-year-old triathlete from Florida has become the first person with Down’s syndrome to finish an Ironman event – swimming 2.4 miles, cycling 112 miles and running a 26.2-mile marathon.

Chris Nikic crossed the line in 16 hours 46 minutes nine seconds – less than 14 minutes under the official cut-off time at the Visit Panama City Beach Ironman in Florida – to earn official recognition from Guinness World Records.

“You have shattered barriers while proving without a doubt that anything is possible,” the official Ironman account tweeted.

In Ironman’s 42-year history, no athlete with Down’s syndrome – a genetic condition that can cause varying degrees of learning disability and slower physical development – has even attempted an event, let alone finished one.

On Saturday, footage circulated on social media of Nikic’s father helping put running shoes on his son’s feet while – his voice breaking with pride – telling him “you are almost an Ironman buddy. You’re two thirds of an Ironman”

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Sporting cuts on his knees from a minor bike crash earlier in the day, Nikic duly did the rest, completing the marathon leg in darkness in six hours 18 minutes.

His journey to the finish line had started three years earlier when, after noticing his son was becoming increasingly sedentary, Nik Nikic encouraged him to become 1% fitter each day. Training began with a single push-up.

“To Chris, this race was more than just a finish line and celebration of victory,” said his father.

“Ironman has served as his platform to become one step closer to his goal of living a life of inclusion, normalcy, and leadership. It’s about being an example to other kids and families that face similar barriers, proving no dream or goal is too high.

“If Chris can do an Ironman, he can do anything.”

An Instagram ‘superstar’

Guinness World Records called Nikic’s achievement “awe inspiring” and registered him as officially the first person with Down’s syndrome to complete the gruelling challenge.

He has 33,000 new followers on Instagram, where he has received messages calling him a “superstar” and thanking him for inspiring the parents of children with Down’s syndrome.

“Goal set and achieved,” posted the man of the hour, a keen public speaker. “Time to set a new and bigger goal for 2021.”

He now has his eyes set on a being part of the 2022 Special Olympics, which will take place in Orlando, Florida.

“No limits. No boundaries,” tweeted tennis legend Billie Jean King. “Keep dreaming big and going for it, Chris!”

NOT ACCESSIBLE, NOT ACCEPTABLE!

November 10, 2020

A press release:

Leading charities unite to call on the government for better accessibility of public health information for disabled people about coronavirus during the second lockdown.

A group of leading disability charities¹, including RNID, Sense and the Royal National Institute of Blind People (RNIB), have teamed up to challenge Downing Street directly about significant concerns over the accessibility of public health information in relation to coronavirus, and the risk this poses to disabled people and the nation as a whole.

In the latest blunder by the government, Shielding letters have been distributed to thousands of people that are not in accessible formats and lack signposting to where alternative formats, such as large print or braille, can be found. As well as this, government updates on coronavirus still don’t include the provision of a BSL interpreter at all its live press conferences; deaf people are unable to access the latest and most critical public health information in real time.

There is a population of more than 4.5 million people who are missing out on vital public health information at this critical time, including those with moderate to profound hearing loss, and those with moderate and severe sight loss. As well as an estimated 1.5 million people with learning disabilities in the UK. Significantly, these groups are also likely to be over-represented in the part of the population at risk of becoming severely ill as a result of coronavirus.

More than 70% of people aged over 70 years old have hearing loss, while one in five people aged 75 and over has sight loss. Many people in these groups have comorbidities.

While this issue brings significant risk to disabled people themselves, it also impacts their communities and the NHS and has potential to undermine national efforts to delay the spread of the virus.

Mark Atkinson, chief executive at RNID said:

“Not accessible is not acceptable. It feels like déjà vu. We raised our concerns about the inaccessibility of Government communications ahead of the first lockdown but the same mistakes have been made again. Letters have been issued that are entirely inaccessible and we still don’t have a BSL interpreter for all public health broadcasts, despite other countries around the world being able to manage this. Deaf people should not be expected to wait until after lockdown has begun or to search far and wide to get the information they need to keep themselves and their families safe. It’s simply not good enough.”

Sense Chief Executive, Richard Kramer, said:

The Government has a responsibility to produce guidance that is accessible, and we should be under no doubts that their failure to do so is putting disabled people’s lives in danger.

Throughout this pandemic, disabled people will make important decisions regarding isolating safely, purchasing food and accessing health and community services. If vital guidance from the government isn’t in an accessible format, is confusing or unclear, then these decisions become challenging.

Either nothing has been learnt by the Government over the last nine months, or they are indifferent to meeting the needs of disabled people.”

Sarah Lambert, RNIB Head of Social Change, added: “Time and again, making sure that crucial health information is in a format that blind and partially sighted people can access – whether that’s large print, braille or audio – has been treated as an afterthought at best. For example, just this/last week, letters, with guidance on what to do if you had been shielding, went out to millions of people. For those in this group who are blind or partially sighted, these letters contain vital information but are inaccessible. Alternative formats are now being produced, but it is not clear how people will know where to find these alternatives. Nor is it right that blind and partially sighted people who have been shielding should only be able to access this information after the new lockdown has started. It is important that accessibility is built into all government communications from the beginning.”

Inside Out: Rosie Jones To Headline No Direction Home Online Comedy Special

November 10, 2020

A press release:

Refugee and migrant comedy collective No Direction Home return to the Southbank Centre with a special online event as part of the Inside Out series, headlined by Rosie Jones on Sunday 22 November, 8pm. 

The stand-up comedy group mentored by award-winning comedian Tom Parry, return following their hugely popular summer Zoom gig for Refugee Week headlined by Nish Kumar, and hosted in partnership with the Southbank Centre.

Rosie Jones has appeared as a guest in TV shows including Live at the Apollo, The Jonathan Ross Show, 8 out of 10 Cats and Mock the Week. Jones completed two sell-out runs at the Edinburgh Festival Fringe with her show Fifteen Minutes, and as a writer, she has worked on Netflix series Sex Education and has acted in TV programmes including Silent Witness.

Created by Counterpoints Arts and Camden People’s Theatre, No Direction Home is an ongoing project of workshops, mentoring and performance for new comics. Since the group’s creation in 2018, they have brought hilarious and uplifting comedy to gigs around the country with guest headliners including Romesh Ranganathan, Nish Kumar, Sindhu Vee, Joel Dommett and Suzi Ruffell. The Southbank Centre is a long-term partner of Counterpoints Arts.

The event is live-streamed exclusively for the Southbank Centre.

Emmerdale Criticised By Down’s Syndrome Rights Campaigners For Laurel And Jai’s Emotional New Story

November 9, 2020

Emmerdale has been criticised by Down’s syndrome rights campaigners after announcing a devastating new storyline for Laurel Thomas and Jai Sharma.

The ITV soap confirmed last week that the couple will discover this winter that they are expecting a baby and after a scan prompts them to have a CVS (chorionic villus sampling), they will find out that their child will be born with Down’s syndrome.

The couple will have some incredibly difficult conversations about whether to go ahead with the pregnancy and they eventually decide to have a termination, with the soap set to explore the sense of loss the couple feel afterwards.

Emmerdale has worked with Antenatal Results and Choices (ARC) on the storyline, with Laurel actress Charlotte Bellamy saying that “the scripts have been so well written” and adding that she feels “the story is told fairly”.

Series producer Laura Shaw explained that the story has been “arguably the most challenging and difficult writing our writing team had ever been tasked with”.

Since the story was announced, the soap has received criticism from Down’s syndrome rights campaigners, with a petition on Change.org calling for producers to drop the storyline attracting more than 15,000 signatures to date.

The petition starter writes that they are “shaken” that “a popular TV show watched by millions has sought to perpetuate the antiquated stereotyping, embedded and, often unconscious, prejudice combined with misleading information about Down’s Syndrome that is endemic in our society”. Advertisement – Continue Reading Below

Model Kate Grant, who has Down’s syndrome, has also criticised the story, telling The Belfast Telegraph: “I love life and life loves me and this is my right, a right that I have because my parents made the decision that I was enough, that I mattered and I do.

“All people with Down’s syndrome matter and have a right to life. Please don’t show the world any different. I am Kate Grant and I am a model – Down’s syndrome doesn’t define me.”

Responding to the criticism of Laurel and Jai’s storyline, Emmerdale told Digital Spy in a statement that “the full context” of the issue will be explored.

“Viewers who watch Emmerdale will know Rhona and Marlon have a much loved son, Leo. Leo has Down’s syndrome and for the last nine years he’s been on screen portraying a happy, fun-loving boy who is very much wanted and cared for by his parents and family,” the statement says.

“After much consideration and extensive research, Emmerdale decided to tell the story of Laurel and Jai and their choice to terminate their pregnancy.

“The full context of Laurel and Jai’s story will be portrayed in detail in forthcoming episodes, because understandably the couple only reach this heart-breaking decision after much soul-searching. Emmerdale felt the story of thousands of couples who make this choice every year, feeling unable to talk about it, needed to be told.”

Emmerdale previously explored having a child with Down’s syndrome when Marlon Dingle (Mark Charnock) and Rhona Goskirk’s (Zoe Henry) son Leo (Harvey Rogerson), who is still in the soap, was born in 2011.

Covid: Lack Of Ventilator Supplies ‘Hit’ Disabled People

November 9, 2020

Some disabled people in the UK have been struggling to obtain essentials such as medication and breathing equipment during the Covid pandemic, research for the BBC suggests.

Some 60% of those who rely on social care told a YouGov survey they were finding it hard to obtain at least one of their necessities.

Charity WellChild said people felt more “forgotten than they ever have been”.

But ministers say the needs of disabled people were being considered.

The Department of Health and Social Care says it has sufficient stocks and patients should contact their local care provider.

Like one in 20 of those survey respondents who receive social care, Fi Anderson, a mother of two with muscular dystrophy from Bolton in Greater Manchester, said she has faced problems obtaining breathing apparatus.

Her local hospital told her to re-use the filter for her portable ventilator, recommending she boil it, because supplies were so short.

She ended up using a dirty filter for six months when it should be changed every day.

“I appreciate the government is in a difficult position and is trying to increase the supply, but it’s not happening fast enough. It’s putting us at increased risk of hospitalisation,” she said.

“I’m scared I will end up with pneumonia from using dirty filters too long and the girls will end up without a mum.”

Disabled people who rely on social care – which funds equipment and other support to allow them to live independent lives – also said they had struggled to obtain personal protective equipment (PPE) such as face masks.

Many of them receive funding directly to employ carers in their home, so they also need to provide them with PPE during the coronavirus crisis.

The survey, which the BBC commissioned to mark the 25th anniversary of the Disability Discrimination Act, asked more than 1,000 people about life in the UK with a disability and how it has changed in the shadow of a pandemic.

More than 65% felt their rights had regressed, and 71% said disabled people’s needs had been overlooked.

The Coronavirus Act, which granted the government emergency powers, gave local councils the ability to reduce care, education and mental health provision for disabled people if it became necessary during the pandemic.

According to the latest figures from the Office for National Statistics, nearly six out of 10 deaths from Covid-19 were of disabled people.

‘Lack of contingency planning’

Tara Parker, director of programmes at WellChild, criticised the government for failing to recognise the needs of disabled people.

She said: “It’s a complete lack of contingency planning and thought about disabled people and their families.

“They’ve struggled with the right PPE, access to their usual therapies, respite, across the board, there has been a lack of clarity for disabled people what their path should be through this pandemic.”

Many of the nurses at Wellchild working with disabled children and young people who use ventilators report that they are experiencing problems with the supply of vital equipment, Ms Parker said.

She said this has happened despite reassurances from the government that there would not be problems in the event of a second wave.

Justin Tomlinson, minister for disabled people, defended the government’s record and said it had sought to create “good awareness” of disability issues to ensure “our support is inclusive”.

He said the government is developing a national strategy for disabled people, which is setting challenges for each department to “remove barriers in society and help create a more inclusive society”.

Was 1995 The Year That Changed Everything For Disabled People?

November 9, 2020

It’s 25 years since mass protests helped pressure the government into making it illegal to discriminate against someone because of their disability.

The rights of disabled people have changed significantly since then, but many say there are still significant gaps.

What were the protests about?

In the late 1980s, ITV had started holding a bi-annual telethon to raise money for disability charities.

But many disabled people found these fundraisers patronising and demeaning. They felt they were portrayed as objects of pity rather than functional members of society.

By the time of the 1992 telethon, hundreds had gathered outside ITV studios before the event, blocking the entrance, putting up a PA system, singing, dancing, and chanting.

‘What telethon and programmes like it should be doing is encouraging able-bodied people to make disabled people members of their pubs and clubs, to employ them, let them into their schools, give them reasonable access to public places,” campaigner Rachel Hurst told the Independent at the time.

What happened next?

Protest groups including the Direct Action Network continued to campaign for the civil rights of disabled people and to end discrimination.

Overall, more than 100,000 people took part in the protests in some way, whether handcuffing themselves to buses or joining demonstrations outside Parliament.

There were 14 attempts to push civil rights legislation for disabled people through Parliament between the early 1980s and mid-1990s.

In 1995, the Disability Discrimination Act (DDA) was finally passed. It made it illegal for employers and service providers such as shops and restaurants to discriminate against someone because they were disabled.

This was as big a step forward for disability rights as the 1965 Race Relations Act and the 1975 Sex Discrimination act were in their fields, a government inquiry later reflected.

Did the Disability Discrimination Act work?

Critics pointed out the new law had a number of shortfalls, including that it was only rolled out in stages.

Employers had to make ”reasonable adjustments” to workplaces from 1996, the first time this concept was introduced.

But until 2004 it only applied to firms employing more than 15 people.

Service providers such as libraries, banks, shops and restaurants didn’t have to adjust their policies, for example by offering documents in accessible formats, until 1999.

They weren’t required to make reasonable adjustments to physical barriers to access, such as widening doorways, until 2004.

Laws preventing discrimination on transport and ensuring reasonable adjustments to housing didn’t come into law until 2005. This was also the first year that conditions such as HIV, cancer and multiple sclerosis were covered from point of diagnosis.

Another issue was that the DDA could only be enforced in a civil court, meaning disabled people could seek damages but companies or authorities couldn’t be punished. It also meant they often had to fund the action themselves, and that could be very expensive.

What replaced it?

In 2010, the law was expanded again. For the first time, it covered harassment because of a disability.

People no longer had to demonstrate that their disability affects a particular capacity, such as mobility or speech, to be protected from discrimination.

The road to equal rights

  • 25years since it became illegal for employers to discriminate against someone due to disability
  • 14attempts had already been made to push the legislation through Parliament since 1982
  • 1999service providers like shops and libraries had to adjust their policies and procedures
  • 2004they had to take reasonable steps to reduce physical barriers
  • 2010the Equality Act replaced and extended existing disability discrimination law
  • 53%of disabled people in the UK were employed in 2013-19, compared with 82% of non-disabled people

The law now said people should not be discriminated against because of a past disability, because they associate with a disabled person, or are mistakenly thought to have a disability.

These extended rights come under the Equality Act, which rolled together more than 100 of pieces of discrimination legislation including laws around disability, sex, race and sexual orientation.

It replaces the DDA in England, Wales, and for a large part Scotland. But an amended version of the DDA is still in effect in Northern Ireland.

What do people still want to change?

The idea of the Equality Act was to simplify and strengthen anti-discrimination law and remove inconsistencies.

But many disabled people told a government inquiry that they had found life easier under the DDA.

Some suggested disabled people lose out under the Equality Act because, unlike other protected groups, they may need different, or more favourable treatment in order to have equal opportunities.

The TUC trade union body suggested many employers do not understand that they can, and should, treat disabled people more favourably than others when making adjustments as part of the Equality Act.

Transport also remains a key issue. Accessible taxis didn’t have to accept and assist wheelchair users until 2017, while many private hire vehicles remain inaccessible. One in three disabled people felt public transport difficulties had reduced their independence, a 2019 report found.

Many point out that while changes have been made, disabled people still do not experience a level playing field.

Today, about half of disabled people in the UK are in employment, compared with about 80% of non-disabled people, according to the Office for National Statistics.

Disabled people are about half as likely to have a degree and four times as likely to report often feeling lonely. They are also less likely to own their own home and more likely to experience a crime.

Down’s Man And His Mother And Brother Die Withing Days Of Each Other

November 9, 2020

A man’s wife and two sons have died in the space of five days after testing positive for Covid-19.

David Lewis, 81, from Pentre, Rhondda Cynon Taf, lost his wife Gladys, 74, on Thursday last week, and sons Dean, 44, the next day and Darren, 42, on Monday.

All of them lived in the same block of flats in Treorchy. Other family members are now isolating.

Dean’s widow, Claire Lewis, said the family were struggling to come to terms with what had happened.

The family, she said, had been careful to avoid catching Covid-19 because Gladys had chronic obstructive pulmonary disease (COPD), Darren, who had Down’s syndrome, had been on life support with pneumonia earlier in the year and her husband David “was not well himself”.

Mrs Lewis said she did not understand how they had caught the virus.

The 44-year-old, from Treorchy, said: “We are totally devastated, all of us. My father-in-law is broken, he has lost his wife and his two children.

“He keeps on saying to us, ‘It should have been me, it should have been me’.

“It’s so difficult to try and help him, and hold me and my children together, because my children are absolutely devastated, and my sister-in-law is.

“She just she does not know what to do with herself, she is the baby of the family and she has lost her big brothers.”

She said her mother-in-law Gladys would do “anything for anyone”.

“To think she is not going to be there anymore is almost heartbreaking,” she said.

Mrs Lewis, who has three children, warned people thought Covid-19 was “a big joke”.

“People need to wise up,” she said.

She added being in isolation made coping “so difficult”.

Mrs Lewis and her youngest son, 12, have tested positive for the virus and she is waiting on results for her eldest children, 14 and 19.

“People don’t think this is going to happen to them, but look at our family,” Mrs Lewis said.

A GoFundMe page has raised more than £5,000 for the family since being started four days ago.

Anne Hathaway Apologises Over Disability Portrayal In The Witches

November 9, 2020

The Witches star Anne Hathaway has promised to “do better” following the criticism the film has received for its portrayal of limb difference.

The actress acknowledged that many people “are in pain” over the way her Grand High Witch character is depicted.

“I owe you all an apology,” she wrote on Instagram.

In the new adaptation of Roald Dahl’s 1983 book, the witches are revealed to have three elongated fingers on each hand and toe-less feet.

Comedian Alex Brooker and others with hand and arm impairments have accused the film of being insensitive towards disabled people.

“To me It sends out a message that we should be scared of people with missing fingers,” Brooker told the BBC earlier this week.

But he added he does not blame Hathaway for this situation, and feels that more awareness and education is needed.

Hathaway said she “did not connect limb difference with the GHW [Grand High Witch] when the look of the character was brought” to her.

“If I had, I assure you this never would have happened,” continued the star, who won an Oscar for her role in Les Miserables.

“I particularly want to say I’m sorry to kids with limb differences,” she went on. “Now that I know better I promise I’ll do better.

“And I owe a special apology to everyone who loves you as fiercely as I love my own kids: I’m sorry I let your family down.

The actress described herself as “someone who really believes in inclusivity and really, really detests cruelty”.

She also shared a video from the Lucky Fin Project, an organisation supporting those with limb differences.

‘Deeply saddened’

Hathaway’s message followed the apology Warner Bros issued earlier this week over the portrayal of the witches in the film, which varies from the one in Dahl’s original.

The studio said it was “deeply saddened” to learn Robert Zemeckis’s film “could upset people with disabilities”.

“In adapting the original story, we worked with designers and artists to come up with a new interpretation of the cat-like claws that are described in the book,” its statement continued.

“It was never the intention for viewers to feel that the fantastical, non-human creatures were meant to represent them.”

The Witches had originally been set for a cinema release but was instead distributed on digital platforms last month following the Covid-19 pandemic.

Shortly afterwards, the hashtag #NotAWitch began trending on social media.

Face masks in communal areas have serious consequences for deaf children

November 6, 2020

A press release:

The National Deaf Children’s Society has responded to updated Government guidance requiring all secondary school pupils and staff to wear face masks in communal areas from Monday.

 

Jo Campion, Deputy Director at the National Deaf Children’s Society, said: 

 

“Mandatory face masks in communal areas will have serious consequences for England’s 45,000 deaf children.  

 

“Socialising in corridors, playground gossip and taking part in games at break time are all rites of passage at school, but many deaf children now face a very real danger of missing out because they can’t understand what others are saying. 

“Public health must always be the priority, but schools and colleges must step up and make every reasonable adjustment possible so that no deaf child has to face loneliness, isolation or damage to their mental health. Deaf children have the same right to a childhood as everyone else and this cannot be put at risk.”

Covid: Care Homes Advised To Allow Visitors In England During Lockdown

November 5, 2020

Care homes must provide a Covid-secure environment – such as floor-to-ceiling screens or visiting pods – to allow families to visit loved ones during the new lockdown, the government says.

The updated guidance for care homes in England comes into effect on Thursday.

It says all residents should be able “to receive visits from their family and friends in a Covid-secure way”.

However, charities have criticised the guidance for suggesting measures that won’t be practical for some residents.

All face-to-face visits were banned during the first national lockdown at the height of the pandemic in the spring.

Guidance in England over recent months has allowed visits on a “limited basis” where alternative arrangements were not possible, but visits have been severely curtailed or prohibited entirely in those areas subject to enhanced restrictions, which have applied to large parts of England.

Under the updated government guidance, care homes – especially those who haven’t allowed visits since March – “will be encouraged and supported to provide safe visiting opportunities”.

It says visits should be “tailored to residents and facilities and should prioritise residents and staff’s safety” to limit the spread of coronavirus, with measures such as social distancing and personal protective equipment (PPE).

The guidance also suggests:

  • Visitors and residents enter through different entrances, meet in Covid-secure areas/pods separated by floor-to-ceiling screens, and visitors should not enter or pass through the care home
  • Window visits where visitors don’t need to come inside the care home or they remain in their car, and the resident is socially distanced
  • Outdoor visits – with one other person – in areas which can be accessed without anyone going through a shared building
  • Virtual visits, with care homes encouraging the use of video calls

Health Secretary Matt Hancock said care homes “should feel empowered by this new guidance to look at safe options to allow visits to care homes that suit their residents and facilities”.

“We’ve seen some really innovative solutions used to help families see each other safely, face-to-face, which has been life-changing for some.

He said he knew “how heart-breaking and incredibly frustrating it has been for families and friends who haven’t been able to see their loved ones” during the pandemic, adding that “we must allow families to reunite in the safest way possible”.

‘Prison-style screens’

However, Kate Lee, chief executive at Alzheimer’s Society, said: “We’re devastated by today’s new care home visitor guidance – it completely misses the point: this attempt to protect people will kill them.”

She said the pandemic had left people with dementia isolated and thousands had died. The guidelines “completely ignore the vital role of family carers in providing the care for their loved ones with dementia that no one else can”, she added.

She said the “prison-style screens” proposed by the government with people speaking through phones were “frankly ridiculous when you consider someone with advanced dementia can often be bed-bound and struggling to speak”.

That view was echoed by Caroline Abrahams, charity director at Age UK, who said she was “acutely aware” that the methods being sanctioned were “unlikely to be useable by many older people with dementia, or indeed sensory loss”.

She added: “Overall we think this new guidance is too restrictive. In practice we fear it will result in many care homes halting meaningful visiting altogether, because they will be unable to comply with the requirements laid down.”

The government has outlined plans to carry out testing on visitors to care homes, with trials to begin later this month.

It also said a new national programme for weekly testing of professionals who regularly visit care homes would be “rolled out in the coming weeks” following a pilot in Cambridgeshire, Peterborough and Northamptonshire.

Cancer Patients And Adults With Down’s Are Extremely Clinically Vulnerable

November 5, 2020

Clinically extremely vulnerable people in England are being strongly advised not to go to work outside their homes during lockdown from Thursday.

Under updated government guidance, they should only go out for exercise and to attend health appointments.

People with stage-five chronic kidney disease, those undergoing dialysis and adults with Down’s syndrome are now also advised to follow the advice.

This group is at higher risk from Covid-19 than the general population.

The government will give local councils in England more than £32m to fund support and access to local services for more than 2.24 million clinically extremely vulnerable people.

They include people undergoing treatment for serious medical conditions, such as certain cancers, or those with rare diseases.

This number could rise by 80,000 over the next few weeks, as NHS England sends letters to those affected.

New national restrictions will apply to everyone in England from 00:01 on Thursday, 5 November, until Wednesday 2 December.

The updated guidance for clinically extremely vulnerable people strongly advises:

  • Stay at home as much as possible, although people can exercise outside in their support bubble
  • Avoid all non-essential travel, except to GP and hospital appointments unless told otherwise
  • Don’t go to any shops or pharmacies
  • Don’t go to work if you cannot work from home – you may be eligible for statutory sick pay or other allowances – but people in the same household can still attend work
  • Most children who were shielding no longer need to be and can go to school – but parents should check with their GP if they are unsure
  • Children who live with someone who is clinically extremely vulnerable should still go to school

‘Late in the day’

An online support service has been set up to help people in this group access supermarket deliveries and other local support.

Asthma UK and the British Lung Foundation said the guidance was “a step forward” but had given people less than 24 hours to prepare for the changes to their lives.

“While it’s good news that furlough is still an option for some, it is very late in the day for people to be having this discussion with their employers and there is no guarantee that everyone who needs it will be able to access it,” said Sarah MacFadyen, head of policy.

She said it was vital that no one was left without essentials and delivery systems were easy to access.

The clinically extremely vulnerable group includes:

  • solid organ transplant recipients
  • people with specific cancers
  • people having active chemotherapy for cancer
  • people having radical radiotherapy for lung cancer
  • people having any treatment for cancers of the blood or bone marrow, such as leukaemia, lymphoma or myeloma
  • people having immunotherapy or other continuing antibody treatments for cancer
  • people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • people who have had bone marrow or stem-cell transplants in the past six months or are still taking immunosuppression drugs
  • people with severe respiratory conditions, including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
  • people with rare diseases that significantly increase the risk of infections, such as severe combined immunodeficiency (SCID) or homozygous sickle cell
  • people on immunosuppression therapies sufficient to significantly increase risk of infection
  • adults with Down’s syndrome
  • adults on dialysis or with chronic kidney disease (stage five)
  • pregnant women with significant congenital or acquired heart disease
  • others classed as clinically extremely vulnerable based on clinical judgement and an assessment of their needs – GPs and hospital clinicians have been provided with guidance to support these decisions

The over 70s, pregnant women and people who are very obese are not included in this group – they are classified as clinically vulnerable. They may still be more at risk of Covid-19 and are advised to stay at home as much as possible and minimise contact with others.

Mum Of Disabled Boy Says He Was Refused Entry To A Covid-19 Testing Site For Not Wearing A Mask

November 4, 2020

A mum said she was fuming after her disabled son was turned away from a coronavirus testing centre for not wearing a mask.

The 38-year-old said her son is exempt from wearing a face covering as he is autistic and has special educational needs.

She booked in a test at the Belle Vue walk-in site on Saturday, October 24.

Her son, who she asked to remain anonymous, had a temperature – one of the symptoms of Covid-19.

He visited the site with her husband, but when they arrived, she claims the pair were turned away as her son wasn’t wearing a face covering.

“(My husband) said ‘he is autistic, he has special needs, he is exempt from wearing one'”, she said.

“(The member of staff) said ‘it is a testing centre, no one comes in without a mask'”, she added.

“My husband was frustrated. My son started running round the car park grunting. He is verbal but with autism and additional needs he is nervous about tests, he doesn’t like things in his face. He was really worried that if he was positive he would be off school.

“He had been off school before. He was frustrated that he couldn’t go in,” she explained.

The Gorton mum said she was ‘really angry’ when her husband phoned her about the incident.

“In the small print it says children over three should wear a mask. But I saw that and thought ‘that’s fine, he is exempt'”, she said.

“I didn’t think (him not wearing a mask) was going to be an issue.

“I was fuming, he is only 10-years-old. It’s a shame he was treated like that. It’s upsetting enough for him”.

She told her husband to go back to the testing site and show evidence of a disability living allowance award.

“(Staff at the testing centre) said he is not coming in, it doesn’t apply”, she said.

The family were told to book another test at a drive through centre, which they were able to book at the Etihad.

“What if, like many Gorton residents – and other families with disabled children – we didn’t have a car?”, she said.

“Thankfully his test returned negative, but what kind of government can justify turning a disabled child away from a Covid test centre?”

The experience has left the mum feeling angry, she said the guidance is not clear that children exempt from wearing masks cannot be tested at walk-in sites.

“It’s just not clear guidance. It seems a shame that disabled children can’t use a walk-in site. He was OK (after the incident), but I did explain as best as I could that what happened to him wasn’t OK.

“I don’t want him to grow up thinking he is less than anyone else, his rights should be the same as everyone else’s.

“I felt like he had been discriminated against”, she said.

“I was so upset initially. I took a bit of time to calm down so I didn’t do anything I would regret,” she said.

The mum contacted her local MP Afzal Khan about the incident.

In a statement to the Manchester Evening News , the Gorton MP said he found it ‘unbelievable’ that a child with symptoms could be refused a test.

Mask Exemptions Must Be Clearer, Rape Campaigner Says

November 4, 2020

A rape campaigner is calling for government to “educate” the public about face-covering exemptions, as England moves into a second lockdown.

Having her mouth covered still prompts traumatic flashbacks for Georgina Fallows, who was attacked and raped some years ago.

And now, she feels re-traumatised by being verbally abused in public when she doesn’t wear a mask.

She has written to ministers with seven mental-health and disability charities.

‘Public understanding’

They are asking the government to promote a “recognised badge [or] identifier to signify the wearer as exempt”.

But, the letter states, a badge “is no substitute for greater public understanding” of why people might not be able to wear face coverings and that this reason may be invisible.

“My attacker literally pulled me off the street and raped me,” Ms Fallows says.

“Having something in front of my mouth feels like his hand.”

Severe distress

She has severe post-traumatic stress disorder and flashbacks, sometimes so extreme she has been sedated by paramedics.

And she has waived her right to anonymity in order to campaign for greater awareness.

Face coverings are mandatory in most indoor public spaces in England, including shops and public transport.

But there are exemptions for people for whom “putting on, wearing or removing a face covering” will cause “severe distress”.

‘Screamed at’

People who cannot wear a mask because of a physical or mental illness or disability are also exempt.

There is a note that can be downloaded from the government website.

But Ms Fallows is concerned it is not viewed as “official”.

And when she has shown her exemption pass after being challenged, people will often not accept it.

The 30-year-old solicitor has been “screamed at” for not wearing a mask.

And one woman accused “people like me of killing her father”.

There are also fears the notes could be misused by people who do not have a valid reason not to wear a face covering.

Ms Fallows wants government to consider backing the Hidden Disabilities charity’s sunflower lanyard, which is already being used for this purpose and is widely recognised.

‘Medical emergency’

For now, though, she avoids shops and transport wherever possible for fear of being verbally abused.

“People think it’s just a bit uncomfortable,” wearing a mask.

But for Ms Fallows, it can be a “medical emergency”, resulting in three- or four-hour flashbacks that end with her being restrained and unconscious.

And it is a problem shared by people with a range of other mental-health conditions, disabilities, autism, and Alzheimer’s disease.

Hate crimes

The letter, sent to Public Health Minister Jo Churchill, Disability Minister Justin Tomlinson and former Disability Minister Penny Mordaunt, was co-signed by charities including Mind, Sense, Alzheimer’s UK and Disability Rights UK.

A Disability Rights UK survey of 350 people uncovered reports of people fearing hate crimes and feeling like prisoners in their own homes.

Difficulties wearing face coverings particularly affect people with mental-health conditions, sensory disorders and hidden disabilities such as autism, its research suggests.

Widespread misinformation online has suggested face coverings can impair breathing.

Heightened breathlessness

The British Lung Foundation says: “Wearing a mask does not reduce a person’s oxygen supply or cause a build-up of carbon dioxide.

“You may have read stories that say that it can – but this isn’t true.”

But wearing a face covering can give people a psychological perception of heightened breathlessness.

And Ms Fallows says those who do not wear one “through choice… do a genuine disservice to those who ‘cannot’ wear one and are exempt”.

“They make it easier for those who are sceptical of the exemptions to case aspersions on those who qualify”.

DWP Slammed By Judge For Trying To Rely On Evidence Of Disgraced Capita Assessor Alan Barham

November 3, 2020

With many thanks to Benefits And Work.

 

An upper tribunal judge prevented attempts by the DWP to rely on evidence of a disgraced Capita assessor who said on one occasion that he had completed an assessment on a claimant before they had even walked through the door and boasted of earning £20,000 a month.

Alan Barham was discredited by the Channel 4 “Dispatches” programme, following undercover reporting in 2016.

Barham told the undercover reporter:

“The money? It was ridiculous. I was getting around 20 grand a month, most months.

They’d pay around £80 an assessment for the first 8 assessments, then they paid £160 an assessment for 8-14, then they paid £300 per assessment for 14-21. . . we was flying through them, because of that money. That’s 20 grand a month.”

In relation to a claimant who had had a leg amputated, Barham said:

“I’d literally finished his assessment before I’d even walked through the door. I’d done it on Saturday. Cos the informal observations with only one leg…”

And in connection with another claimant, he said:

“Disability known as being fat. She asks for help to wipe her arse because she’s too f**king fat to do it herself”

Yet even though Capita dismissed Barham and he was found guilty of misconduct by a professional standards tribunal in 2017, the DWP still went to an upper tribunal hearing and argued that his evidence should be relied upon.

In the case in question, the claimant went from the higher rate of both components of DLA to no award of PIP, based on an assessment by Barham. On appeal to the first tier the claimant was awarded standard rate daily living only.

The claimant appealed to the upper tribunal. The DWP then produced a new assessment report dated 2017, which was paper-based but still based in part on the original report produced by Barham.

The DWP argued it would be up to a new tribunal, if the upper tribunal sent the case back, to decide what weight to attach to the report.

The judge was having none of it, saying that “was not good enough, because the criticisms of Mr Barham meant that his purported observations and purported examination could not be relied upon.”

The judge told the DWP they must either agree to award the claimant the maximum of each component, making a new report unnecessary, or they must say whether they were “going to

send the claimant for a fresh examination and if not, why not.”

In the end, the judge told the DWP that there was “a wealth of evidence” already in the papers from other health professionals and if that wasn’t enough for the DWP they could order a new assessment.

The judge went on to make it clear that there was no reason for the case to go back to a new tribunal and that either the DWP should come to an agreement with the claimant or the judge would decide on an award.

In the end, the claimant and the DWP did reach an agreement. The claimant was awarded 11 points for the daily living component, giving them the standard rate, and 12 points for the mobility component, giving them the enhanced rate.

The award runs for 10 years from the date of the original decision.

The fact that the claimant had to fight for four years to get a fair decision, that did not rely on the evidence of a totally discredited assessor, says a great deal about how unfair and unfit for purpose the entire disability benefits system has become.

PM To Look At Idea Of Raising CA By £20 A Week

November 3, 2020

Norwich North Tory MP Chloe Smith Diagnosed With Breast Cancer

November 3, 2020

Conservative MP Chloe Smith has revealed she has been diagnosed with breast cancer.

The mother-of-two, who is the Minister for Constitution and Devolution, said she aimed to “carry on as normally, positively and openly as possible” during her treatment.

She also urged the public to check for lumps and to continue to use the NHS throughout the lockdown.

Ms Smith, 38, has held the Norwich North seat since 2009.

She said she wanted to let people know she had breast cancer and would be starting treatment soon.

“Please, check for lumps and see your GP without delay if you find one.” she added.

Ms Smith said even though England was about to enter a four-week lockdown due to coronavirus, it was “very clear that the restrictions will help non-Covid healthcare to keep going”.

“You should continue to use the NHS, get your scans, turn up for your appointments and pick up your treatments.

“There are some fantastic sources of information and help out there, like Breast Cancer Now, and locally Norfolk’s own Big C and Keeping Abreast,” she said.

When Ms Smith won the Norwich North by-election in 2009 at the age of 27, she was the youngest MP at that time.

She then became the youngest minister in government at the age of 29.

CripTales

November 2, 2020

Sir Bobby Charlton Diagnosed With Dementia

November 2, 2020

England World Cup winner and Manchester United legend Sir Bobby Charlton has been diagnosed with dementia.

The news follows the deaths of his older brother Jack in July and fellow World Cup-winner Nobby Stiles on Friday, both of whom had also been diagnosed with dementia.

Sir Bobby, 83, won three league titles, a European Cup and an FA Cup with United during 17 years at Old Trafford.

“Stay strong, we love you,” said United striker Marcus Rashford.

His wife, Lady Norma Charlton, expressed the hope that the knowledge of his diagnosis – first reported by the Telegraph – could help others.

Manchester United said in a statement: “Everyone at Manchester United is saddened that this terrible disease has afflicted Sir Bobby Charlton and we continue to offer our love and support to Sir Bobby and his family.”

Rashford, 23, said on Instagram: “Sir Bobby, you are my hero and I am devastated that you are having to go through this.

“I filmed alongside this man as a child and was in awe. I still am when I see you. This man, from day one, was everything I wanted to be. Kind, professional, caring, talented.”https://platform.twitter.com/embed/index.html?dnt=false&embedId=twitter-widget-0&frame=false&hideCard=false&hideThread=false&id=1322894875768008707&lang=en-gb&origin=https%3A%2F%2Fwww.bbc.co.uk%2Fsport%2Ffootball%2F54770216&theme=light&widgetsVersion=ed20a2b%3A1601588405575&width=550pxReport

Air crash survivor and Ballon d’Or winner

Joining United in 1953, he scored 249 goals in 758 games for the club, long-standing records which were eventually broken by Wayne Rooney in 2017 and Ryan Giggs in 2008 respectively.

Born in Ashington, Northumberland, he remained England’s record goal scorer until Rooney surpassed him against Switzerland in September 2015.

At the age of 20, Sir Bobby was a survivor of the Munich air crash of 1958 in which 23 people died, including eight of his Manchester United team-mates.

He inspired United to a first European Cup win in 1968, scoring twice in the final, and was awarded the Ballon d’Or in 1966 after playing every minute of England’s World Cup victory.

Sir Bobby came second in the BBC Sports Personality of the Year Award in 1958 and 1959. In 2008, he received the lifetime achievement award.

United renamed Old Trafford’s South Stand in honour of Sir Bobby in 2016.

Dementia in football

Sir Bobby is the fifth member of England’s 1966 World Cup-winning side to be diagnosed with dementia.

In addition to his brother, Jack, and Stiles, both Martin Peters and Ray Wilson – who died in 2019 and 2018 respectively – also had the condition.

Stiles, Peters and Wilson were diagnosed with it while still in their sixties. In a BBC documentary screened in 2017, Stiles’ son John told former England captain Alan Shearer he was “utterly convinced” heading a football was responsible for his father’s dementia.

A study by Glasgow University in 2019 found former professional footballers are three and a half times more likely to die of dementia than people of the same age range in the general population.

The study began after claims that former West Brom striker Jeff Astle died at the age of 59 because of repeated head trauma and compared deaths of 7,676 ex-players to 23,000 from the general population.

The inquest into Astle’s death found heading heavy leather footballs repeatedly had contributed to trauma to his brain, but research by the Football Association and the Professional Footballers’ Association was later dropped because of what were said to be technical flaws.

Astle’s daughter, Dawn, said “players who have suffered dementia must not be a statistic” after she was left “staggered” by the study’s findings.

In response, the FA launched new coaching guidelines to restrict the amount of heading by under-18 players in training.

DISABILITY PAY GAP RISKS BECOMING CHASM

November 2, 2020

A press release:

 

GMB union has called for drastic action from the UK government as TUC figures reaveal widening pay gap for disabled workers 

GMB, Britain’s General union have called figures released by the TUC showing a widening pay gap a “wake up call”. 

The analysis by the TUC, shows that pay gap has widened by £800 over the last year to £3,800 and that is expected to grow as Covid-19 economic crisis hits. 

The figures also revealed that disabled women are paid on average around £6,700 less than non-disabled men and disabled workers worked around 60 days a year for free.    

Nell Andrew, GMB National equality and inclusion officer said: 

“The pay gap is widening and in real risk of becoming a chasm. 

“Today’s figures must be a wakeup call to the government. Their support for disabled workers throughout this crisis has been a nothing short of negligent. 

“As the economy falls off a cliff, disabled workers face a double whammy of being more like to impacted by covid19 in the workplace, from a lack of reasonable adjustments, jobs cuts or sickness, to no real support or disability furlough package if they need to shield.  

“The Government must work with Trade Unions to build a better package of support to bridge this gap or risk a two-tier workforce in the near future.” 

Covid-19: Carers ‘Worn Out’ By Virus And Need Services Back

November 2, 2020

Unpaid carers in Wales are “worn out” and need support services lost during the coronavirus pandemic to return, a charity has said.

It comes as research suggests some are reporting 10 times the rate of mental health problems of other parents.

One mother told BBC Wales she sometimes felt like “heading for the hills”.

The legal right for carers’ needs to be assessed was suspended as part of Covid rules – and the Welsh Government is consulting on whether it should resume.

“The pandemic has placed enormous pressure on carers in Wales, who are caring round the clock for loved ones with little or no outside support,” said Claire Morgan, director of Carers Wales.

“Carers are desperately worried about how they will manage over the winter and in the face of further lockdowns and tightening of restrictions.”

The charity has spoken to nearly 600 carers in Wales and more than a third said they are providing more care because needs have increased since March.

A similar number said their local services had been significantly reduced or closed because of Covid-19.

“The Welsh Government must ensure that services for carers and those they care for are reinstated as soon as possible,” Ms Morgan said.

“The charity wants to see the vital role of unpaid carers in supporting the health and social care system clearly recognised in the rebuilding, and delivery, of health and social care going forward.”

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‘Caring during the pandemic has been hard on us’

Sixty-year-old Jean knows the social services system well – she was a social worker herself for 40 years before retiring to look after her daughter Branwen in the Swansea Valley.

Branwen is now 25 and has global developmental delay.

This means she has a moderate intellectual disability and has needed life-long care and support.

“It’s been extremely difficult, for Branwen in particular,” said her mother.

“She’s very frightened, because she sits and listens to the news with me, and even this week she has been crying at the reports of the deaths from Covid.”

Jean said her daughter was “a very active young lady” before the first lockdown in March and spent most of the week at activity centres and on a job placement.

“Of course they all stopped,” she said. “From the perspective of a young person with a learning disability, it is very, very frightening.

“It is very socially isolating. Most of the people Branwen socialises with are other young people with learning disabilities.”

But it is not just Branwen’s life that has felt the impact of the pandemic – the ripples have reached Jean and her husband, as they pick up more and more of the caring duties.

“Sometimes, I have to tell you, I feel like heading for the hills,” said Jean.

“It has been hard on us – it has been very difficult at times.

“It certainly has had an impact on our own mental health as well, really – there’s no doubt about that.”

(The names of Jean and Branwen have been changed at their request)

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The calls from the charity are backed by new research which examined the plight of carers looking after individuals with intellectual disabilities.

Psychologists found reported rates of mental health problems under lockdown were up to 10 times higher than parents without those caring responsibilities.

The team was led by Swansea University’s Prof Paul Willner, working with researchers from Warwick, Kent and Birmingham universities and the Challenging Behaviour Foundation.

They also found the carers they spoke to were five times more likely to report severe anxiety, and also to be four to 10 times more likely to experience depression.

The teams analysed the results of 244 surveys with carers undertaken during the strict first Covid-19 lockdown.

It also found nine out of 10 of those taking part were women.

Prof Willner said the study suggested carers of children and adults with intellectual disabilities were “adversely affected” by the pandemic.

“This effect is over and above any pre-existing mental health problems,” he added.

“They are also affected to a greater extent than parents of people without disabilities but are less well supported.

“Our findings are one illustration of how the pandemic has amplified existing inequalities.”

It all comes as a consultation is being held by the Welsh Government on rules brought in under Covid-19 legislation.

Before the pandemic anyone requiring care, and carers themselves, had the legal right to have their needs assessed by local authorities.

Those rights were suspended when the first lockdown was imposed in Wales.

The consultation asks whether that measure continues, or is suspended. It closes on Monday.

Welsh Government ministers had said at the time they still expected councils to carry out assessments.

However, the Wales Carers Alliance wrote to officials over the summer stating those assessments “ceased” over the lockdown.

“Many carers are anxious that support will not be reinstated following coronavirus restrictions being lifted,” warned the alliance, which represents 16 disability, health and care bodies in Wales.

The Welsh Government said it has awarded £2.6m to care organisations in Wales over the next three years in projects to help carers know their rights and improve services.

They also said £50,000 was given to Carers Wales to extend their mental health support.

A new £1m hardship fund for carers was also announced on Tuesday.

A Welsh Government official added: “We recognise the remarkable work that carers have been carrying out in very difficult circumstances during this pandemic.

“We have provided more than £2.5m funding to support carers and an extra £8.5m for mental health services during the pandemic.”

Sense Connect

October 30, 2020

Tokyo 2020 Paralympics To Feature Six-Strong Refugee Team

October 29, 2020

The International Paralympic Committee (IPC) will send up to six athletes to Tokyo 2020 as part of a Refugee Paralympic Team (RPT).

London 2012 Paralympian Ileana Rodriguez – herself a former refugee – will be the team’s chef de mission and will select the team with the IPC.

A two-person Independent Paralympic Athletes Team – a refugee and an asylee – competed at Rio 2016.

There will also be a refugee team competing at the Tokyo Olympics.

Ten athletes competed in the 2016 Olympics in Rio but the team for the postponed Tokyo Games is set to be larger.

The IPC said it wanted to “create awareness of the plight faced by refugee athletes” and “send a message of hope to the almost 80 million forcibly displaced worldwide”.

It will support prospective RPT athletes by providing funding to allow them to attend qualification events and helping them prepare for competitions by providing coaching support.

Those selected will receive further support during the Games and will be given the opportunity to compete at other competitions through to the end of 2021.

The Tokyo Paralympics, postponed because of the coronavirus pandemic, will take place from 24 August to 5 September 2021.

The Snooker Champion Who Plays Without Arms

October 28, 2020

Watch as Mohammad Ikram, a snooker player in Pakistan, showcases his talent for the game despite being born without arms.

He hopes to play abroad and gain the backing of Prime Minister Imran Khan, the former cricket all-rounder who led the Pakistan team to victory in the 1992 World Cup.

Why Is Basic Decency Towards Learning Disabled People Remarkable?

October 28, 2020

In late July 2019, I tweeted asking families with autistic or learning disabled children to share their experience of “sparkling” actions by health and social care professionals. I was writing a book about how professionals could make a difference in the lives of children and their families, and the manuscript was woefully negative.

The tweets started appearing and the thread grew across the next few weeks. They included extraordinary examples of what I came to call “pockets of brilliance”. An administrator who included pug memes in the appointment letters for a dog-loving young patient. Professionals who were prepared to sit on the stairs so a child could stay in their bedroom during a visit. The GP who told one mother: “I don’t know very much about autism, but I promise you that I will do all I can to learn.” Another GP who rang a mother in the evening after he’d been kicked during a distressing appointment, gently asking what he could do to help. These behaviours could be badged as “reasonable adjustments”, but to give them any type of label is part of the problem. The shoehorning of human actions based on kindness, thought and sense into jargon dehumanises what should be everyday, normal conduct. Advertisementhttps://0aa004fcaf4f2b971ceb9bcf2e00c411.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

These tweets generated a visceral feeling in me, in part because of the simplicity of the actions captured. Why would you not ring someone after a particularly difficult appointment to check on them? Isn’t remembering what children like and engaging with their interests an obvious way to generate good relationships? Telling a parent their child has been a pleasure to support is commonplace, surely? And then I return, as I often do, to the way in which our beautiful son, Connor, was left to drown in an NHS hospital bath while nearby staff finished an online Tesco order. Certain people, children and adults, in our society are consistently and routinely positioned outside of “being human”, leading to an erasure of love, care and thought by social and healthcare professionals. They become disposable.

Some people kicked back on the tweet thread asking, “Why should basic decency be applauded?” These encounters are not examples of brilliance; they are examples of good practice, and shouldn’t be held up as something special. I agree. The problem is, they remain so rare that they are extraordinary. Some stories dated back years, and part of their power and significance is in how much they stand out in people’s memories.

These pockets of brilliance provided a hook of relief to write around. But there were further knocks. I contacted one mother to ask if she was happy for me to include her tweet as a “finale” to the book as it was so moving, particularly given what had happened to Connor: “A support worker on daughter’s unit has asked if she can switch her shift so she can be in the car to bring my daughter home for good on Thursday,” she had tweeted.

The mother replied that I could use it, but it wasn’t to be the high point I had hoped to finish on. She added that despite the support worker’s request, she didn’t actually turn up with her daughter. She still has no idea why.

In addition to the tweets, key, largely unknown figures emerged through my research; people who called out appalling practices, sometimes repeatedly. In the 1960s, Michael Pantelides, from Cyprus, was working as a nursing assistant at Ely hospital in Cardiff, and raised concerns about abuse. His concerns were ignored, and he eventually wrote to the News of the World, leading to the first NHS public inquiryand the setting up of the Hospital Advisory Service, a precursor of the Care Quality Commission (CQC). Wales’s first minister, Mark Drakeford, chillingly says it took “fresh eyes” to recognise the abuse.

Four decades on, Terry Bryan, a nurse at Winterbourne View, approached the BBC after witnessing horrific abuse by staff on residents at the assessment and treatment unit for people with learning disabilities and autism. He had made complaints to his employer, Castlebeck, and the regulator, the CQC, which were all ignored. In May 2011, Panorama exposed the abuse with shocking footage captured by a reporter in a few weeks of working undercover at the unit, near Bristol.

What has also become clear to me is how much the treatment of people and their families remains on a failing loop, despite extensive research, legislative and policy changeto make their lives better, and potentially transformative moments like the exposure of the Winterbourne View scandal. At the heart of this loop are loving families and a diverse range of allies, surrounded by a large cast of bystanders who, instead of fresh eyes, have vision clouded by ignorance and sometimes prejudice.

To rehumanise society, we need more people with guts and integrity who are prepared to step up and call out poor practice, and to look afresh at how we could do things so much better with a focus on love and brilliance.

Coronavirus: ‘Bosses Should Be More Open-Minded About Hiring Disabled People’

October 28, 2020

Emma Dobson, 23, says it is “soul destroying” that she hasn’t got beyond a first interview yet.

She has cerebral palsy and has been job-hunting since completing her Masters degree at Aston University this summer. But despite making about 40 applications since July, she has had little success.

“Because I live by myself and like lots of people, I haven’t done much socialising recently… I’m desperate to find something,” Emma tells the BBC.

She and many other disabled people are facing a “jobs crisis” amid the coronavirus pandemic, according to the Leonard Cheshire disability charity.

It says about 7 in 10 disabled people have seen a hit to their income, been furloughed or feared redundancy due to Covid-19.

The charity also said some employers were discouraged from hiring disabled people, fearing they would not be able to provide the right support during the crisis.

‘I’m desperate’

Emma, who has been applying for jobs in everything from academia to retail, urges employers to do whatever they can to support disabled candidates – in the application process and at work.

“Covid has shown us that a lot of the things that disabled employees have been asking for, such as flexible hours, remote working, hosting meetings online – are all very doable,” she says.

“Lots of bosses managed to bring in these new measures at the drop of a hat – so there’s no excuse for not fixing any roadblocks to hiring a disabled person, or maintaining those new ways of working, as we’ve been asking for them for years.”

The Leonard Cheshire charity surveyed 1,170 working age disabled people and 500 employers. It found two in five hiring managers saw “being able to support” disabled people properly during the coronavirus pandemic as a barrier.

Meanwhile, a fifth of employers said they were less likely to hire a disabled candidate overall.

Of the 7.7 million disabled people of working age in the UK, 53.6% are currently in work, in comparison with 81.7% of those who are not disabled, according to the Office for National Statistics.

More than half (57%) of disabled 18-24 year olds surveyed by the charity said they felt that the pandemic had affected their ability to work. The majority also felt that it had hit their future earnings potential.

Leonard Cheshire described its findings as “stark”.

“But we should see them not as gloomy forecasts for policymakers but as motivators for immediate, wide-ranging action,” said its head of policy, Gemma Hope.

The charity is calling on the government to extend the furlough scheme for working people who are shielding, and to make statutory sick pay available from the first day of employment.

‘At the sharp end’

In September, charity Scope also said that disabled people had been “hardest-hit” by the pandemic.

In an open letter, addressed to Prime Minister Boris Johnson, it pointed to “a looming recession and disabled people at the sharp end of poverty”.

Scope called for the government to prioritise the publication of the National Disability Strategy, ensuring “it provides a clear plan to mitigate existing inequalities the pandemic has further magnified”.

The government committed to publishing the strategy – which aims to improve disabled people’s access to opportunities – in the last Queen’s Speech.

“We understand this has been a very challenging time for many disabled people and we remain committed to supporting their safe return to work,” a government spokesperson said.

“We are working to support and protect disabled people with one of the most comprehensive economic responses in the world.

“In addition, we have boosted welfare support by £9.3bn to help those who need it most.”

Sister Of Jamie Foxx, Deondra Dixon, Dies At 36

October 27, 2020

Disabled Juror Forced To Quit Case At Maidstone Crown Court Because All Lifts Were Broken

October 27, 2020

A disabled juror was forced to quit her duty because all five lifts in a Kent court were broken.

The woman was discharged from a robbery trial after spending a fortnight listening to the case because she could not get back in.

It left just 10 out of 12 jurors because another was discharged earlier.

The case finished the next day with unanimous guilty verdicts against two men at Maidstone Crown Court, the MirrorOnline reports.

Alison Kerry, of disability equality charity Scope, said: “Disabled people shouldn’t be barred from doing their civic duty because our courtrooms aren’t accessible.

“One in five of us is disabled and juries should reflect that.

“It’s unacceptable five lifts could be out of order at once.

“This could also prevent disabled clerks and solicitors from being able to work.

Courts and the government should do much more to make sure our justice system is accessible.”

Negligence solicitors Bolt, Burdon and Kemp found just two per cent of courtrooms in England are fully accessible.

Its research in August found wheelchair access and availability of working lifts were the main issues.

Just 15 per cent of courthouses in England are fully accessible for wheelchair users.

Of British 444 courts tested, only eight met all 11 of their accessibility criteria.

These include disable parking, accessible toilets, hearing loops and welcome assistance dogs.https://d622e86eed7c27fce4b524f91efbee4a.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html138208672551

The law firm concluded: “We see first-hand the difficulties our clients go through before attending court, whether they’ve recently suffered major trauma, or have come to terms with historic issues for which they’ve had to summon a lot of courage to seek redress.

“Being made uncomfortable in court because the buildings aren’t equipped to handle their disability or other issues adds an extra sense of discomfort, making an already distressing time even more difficult.”

A courts spokesman said: “Two of the lifts were repaired within a matter of hours and work is under way to fix the remaining three.”

Covid-19: Essex Boy’s Lockdown Art Project Ends Up In Gallery

October 27, 2020

Artwork created by a boy who wanted to pass the time during lockdown has gone on display in a gallery.

More than 250 artists from across the world came forward to help 12-year-old Noah, who lives in Dedham, Essex.

His father posted on Instagram in April, asking artists to finish the pictures he had started while he could not go to school.

Nathan Jones said he could never have imagined the paintings would end up in a gallery.

Mr Jones said he was “incredibly proud” and described the exhibition at Firstsite in Colchester as “a real visual treat”.

“Finally seeing all the collaborations in an exhibition has been rather overwhelming,” he said.

“They look absolutely stunning and Firstsite has done an incredible job. It spectacularly shows off just how huge this project became.

“It is totally amazing what beauty can be achieved when so many wonderful people come together for a great cause.

Noah, who has hydrocephalus, epilepsy and cerebral palsy, was painting on pieces of cardboard when his father had the idea.

He offered to post out the backgrounds that Noah had created to artists, who would finish them off.

Artists from the UK, Colombia, Italy, Spain, France, Sweden, Germany, the US and Australia have all taken part in the project.

The family has created a book, called Background Bob, to raise money for the Colchester and Ipswich Hospitals Charity and also plans to auction off the individual paintings next year for the same cause.

Mr Jones said it was their way of saying thank you to the doctors who have played “a huge part” in Noah’s life.

He said anyone interested in the project could follow Noah on his Instagram account background_bob.

Down’s Syndrome: ‘In All Honesty We Were Offered 15 Terminations’

October 26, 2020

Ninety per cent of women whose unborn babies are diagnosed with Down’s syndrome choose to have an abortion, which is legal right up until birth. But campaigners say expectant parents are routinely given outdated advice and encouraged to have a termination. We hear from three mothers who want the system to change.

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‘The support was only there if I chose an abortion’

Jaxon Buckmaster is, in many ways, a typical six-year-old boy. He loves swimming, cars, dinosaurs, Mickey Mouse and performing on stage with his musical theatre group.

The youngest of five children, he is described as “a little comedian” with a “really cheeky” sense of humour.

Jaxon also has Down’s syndrome, meaning he has an extra chromosome and a learning disability.

“It takes him longer to reach milestones, but we celebrate them so much more because they are such an achievement for him,” his mother Lorraine says.

Jaxon excels at his mainstream school, where he has lots of friends, and has no other health conditions.

So Lorraine, who lives in Milton Keynes, cannot understand why midwives were so negative about the condition when she was pregnant.

She found out Jaxon might have Down’s syndrome after being persuaded to have an extra screening and a blood test due to her age.

“I was 45 at the time and knew there would be a higher chance, but it didn’t matter to me,” she says. “The midwife said we would get longer to see Jaxon on the screen so we went along with it.”

The sonographer explained that if the baby showed markers of the condition, the next step would be an amniocentesis, a test which carries a small chance of a miscarriage.

“I said no, we wouldn’t be interested, partly because we had lost a baby the previous year. She was very aggressive and said ‘women like you make me sick. Why bother having a screening at all if you’re not going to do anything about it?'”

A midwife later phoned, saying she was “ever so sorry” but had “really bad news”, confirming the baby had a one-in-five chance of having Down’s syndrome.

Lorraine and her husband Mark declined all further testing. They wanted to keep their baby, no matter what.

“The support was only there if I chose to have an abortion, and that was what they presumed, but they weren’t interested when I said I wanted to keep Jaxon,” Lorraine adds.

Jaxon was diagnosed at birth and Lorraine says the family has never looked back. She says her other children adore him and will fight over who gets to look after him when they are older.

“I want him to get married and work and have a normal future,” she says. “We know he will always need support but we really believe he will lead a full life. He’s a showman, a real entertainer and we think he will end up on the stage.”

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‘At 38 weeks, I was told I could still terminate’

Emma Mellor felt under pressure to abort her daughter Jaimie throughout her pregnancy. Aged 24 at the time, she already had a young son with her husband Steve.

“In all honesty we were offered 15 terminations, even though we made it really clear that it wasn’t an option for us, but they really seemed to push and really seemed to want us to terminate,” she says.

At her 20-week scan, Emma was told her daughter had some fluid on her brain. Doctors said she was likely to be disabled.

“From that moment on, they recommended we should terminate and told us to think about the effect on our son and his quality of life.”

Their son Logan was on the waiting list for surgery at the time, having been born with a hole in his heart.

Emma says they could not imagine ending their daughter’s life with an injection in the heart to stop it beating – the recommended termination method after 22 weeks – while they were waiting to fix their son’s.

“It inspired us to make the right choice. We decided to carry on and hope for the best.”

At 32 weeks, a test showed she had Down’s syndrome and doctors reminded Emma several times that she could be legally aborted until birth.

“At 38 weeks, the doctors made it really, really, really clear that if I changed my mind on the morning of the induction to let them know, because it wasn’t too late.

“I was told that until my baby had started travelling down the birth canal, I could still terminate.”

When Jaimie was born, Emma was told she had Down’s syndrome but was otherwise healthy.

Five years on, Jaimie is “the best of friends” with her brother and attends a mainstream school in Lincolnshire, where she is ahead of some of her peers for reading.

“She loves dancing and trampolining. She has a few difficulties but she is just like any other child her age. She lights up the room and people just gravitate towards her.

“When we got the diagnosis, I did worry about her future. She will undoubtedly face some challenges as she gets older but she is continuously proving that she shouldn’t be underestimated.

“Jaimie can do anything that she sets her mind to.”

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‘I started to ask myself what is so wrong with him having Down’s syndrome?’

Sixteen years ago, Nicola Enoch was certain she did not want a baby with Down’s syndrome. Pregnant at 39, she found out there was a higher chance of this happening after a screening and booked in for an amniocentesis.

However, she cancelled at the last minute. Having already suffered four miscarriages, she was concerned it might cause her to lose the baby.

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Down’s syndrome

  • For between 700 and 1,000 babies born, one will have Down’s syndrome, meaning they have an extra chromosome and a learning disability
  • About 40,000 people in the UK have the condition
  • Around half have heart defects but only 10-15% require medical intervention
  • 80% of children with the condition are born to women younger than 35
  • In the 1960s, life expectancy was 15 – it is now between 50 and 60

Source: NHS/Positive About Down Syndrome

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When Tom was born, Nicola was euphoric. But the following day, a paediatrician asked her if she thought he looked normal.

Tom was diagnosed with Down’s syndrome and Nicola’s world fell apart.

“I was offered absolutely no support to rebuild it,” she says. “I felt complete and utter despair and devastation. Gone was this gorgeous baby and instead he was replaced with this unknown entity.”

He would never be able to go on a trampoline, doctors said, while a community midwife burst into tears.

Nicola grew increasingly distant from her baby and considered having him adopted.

“I was grieving for the baby I had hoped for and expected, terrified of the future, and I actually wondered if it would be better for us all if Tom didn’t survive,” she says.

Nicola’s maternal bond had been “severed” and it took her more than a year to fall back in love with her son.

“I started to ask myself, ‘what is so wrong with him having Down’s syndrome?'”

Tom, now 16, is a pupil in mainstream education. Nicola describes him as “charming, witty and charismatic”. A West Bromwich Albion fan, he also enjoys golf, snorkelling and kayaking and hopes to get a job and get married.

Nicola says cancelling the amniocentesis was the best decision she ever made.

“I am terrified I would have terminated Tom’s life. I was led to believe he would have a negative impact on our lives but he has enriched them and we are without doubt better people for having him in them.”

Nicola runs a charity called The Ups and Downs, which supports more than 70 families, and has set up a website called Positive About Down Syndrome.

She has also published several books, distributed literature to maternity units across England, provided training sessions for the NHS and successfully campaigned for the advice on its website to be changed.

Nicola says she worries “every single day” that parents are making life or death decisions based on outdated information.

She also believes the existence of Down’s syndrome is under threat by a new blood test called non-invasive prenatal testing, which Public Health England (PHE) expects to roll out across England next year.

It will be offered to women whose initial screenings show a higher chance of Down’s syndrome. PHE said it wanted to enable parents to make “personal informed choices” and the optional screening “should be offered sensitively, in a non-directive way”.

Clare Murphy, deputy chief executive of the British Pregnancy Advisory Service, said the test had simply given women a more accurate and less invasive screening option.

“It is a hugely important step forward in women’s healthcare,” she said. “To restrict it would be to restrict women’s access to the most effective and low-risk way of obtaining information about their own pregnancies – and that would not be ethical at all.”

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What is the advice given to parents?

The NHS website says it can be a very difficult decision whether to continue a pregnancy with Down’s syndrome.

It advises women to speak to medics, family, friends and various charities and to people who have been in the same position.

It says women should take their time and that whatever they decide, they will have support.

Helpless And Bereaved: How Covid Separated Blind Couple After 47 Years

October 26, 2020

For their 47 years of marriage, Peter and Linda Wilkins were inseparable. Both born without sight, they met as teenagers at Henshaws school for the blind in Greater Manchester, where they became some of the best braille readers their teachers had produced.

Linda went on to become a professional braille proofreader and Peter a typist, the pair living together in the middle of Stockport. They loved listening to music and delighted in finding mistakes in braille manuscripts. “We’ve always been braille perfectionists. Whenever we read a book and found a mistake we’d tell each other: ‘They’ve not put the quote marks right here,’” said Peter.

But when Linda lost the use of her legs and had to go into hospital and then a care home earlier this year, suddenly the couple were split up. Covid restrictions meant Peter was unable to visit his wife in hospital or in the care home, where the “window visits” on offer were of little use to two blind people, nor the offer of video calling.

Linda died suddenly in her care home on Wednesday and now Peter is speaking out in the hope that “nobody else will be in the same situation as me”.

He wants the government to change the restrictions in England to allow weekly care home visits – and not just at the end of life, as currently permitted.

He also wants relatives to be allowed to make hospital visits, wondering if he would have been able to “advocate” for Linda had he been allowed to see her when she was in hospital, confused and alone.

Linda was born with a spinal condition and three years ago developed rheumatoid arthritis which made it difficult to stand. By March this year she could not walk at all and in July was admitted to Stockport’s Stepping Hill hospital just as the Covid crisis hit the NHS, with all visits banned.

“When she started to not be able to move her legs and I couldn’t help her, and she couldn’t do anything for herself, I had no option but to send her to hospital. I didn’t want to, and she didn’t want to go, but I persuaded her it was the only possibility, with the hope that eventually we would get her back home,” said Peter.

He felt helpless back at the house, unable to grab a doctor on the ward to explain what was going on. He was never able to get to the bottom of whether or not she had internal bleeding, nor the “lumps” found behind her eyes when she had a brain scan.

“When she was in hospital last year I visited her every day and was able to assess her situation. If she had any difficulties or problems I could speak on her behalf,” he said. “If I had visited I wouldn’t have left the hospital without collaring a doctor and finding out what was going on. You can’t do it as easily from home. I could have advocated for her, which I always did through her life anyway.”

In August, she was discharged from hospital into Fernlea, a care home in Hazel Grove, Stockport. Peter has nothing but praise for the care she received there, but he was frustrated at not being able to visit.

An exception was made on 25 August, for the couple’s 47th wedding anniversary. That was the last time he was with Linda. After that, he was offered the chance to stand beneath her window for a visit. “But I wrote to the home and I said I didn’t think that would work on the first floor anyway but blind people [really] wouldn’t be able to cope with it,” he said.

He thinks all care home residents should be allowed one “designated partner” who can visit once or twice a week, in personal protective equipment.

On Thursday he made the case to Andy Burnham on the Greater Manchester mayor’s monthly Radio Manchester phone-in show. The call temporarily silenced Burnham, who said: “If there’s any way we can help you, we will … Health is about more than controlling the virus. We’re in danger of getting into the position where the virus is everything. And it isn’t everything; it is a major concern but it needs to be balanced alongside people’s emotional and mental health, people’s relationships.”

Peter was pleased with Burnham’s response but remains sad at how Linda died without him, aged 69.

“It would have been nice to visit her. I can’t fault the home. They were doing what they had to do,” he said. “But I am talking out because I would like something to be put in place so that nobody else will be in the same situation as me over the last three months, when I couldn’t be with Linda in her time of need.”

Makeup And Disability

October 26, 2020

A fun question, readers:

Textbook Makes Autistic People ‘Sound Like Toddlers’

October 23, 2020

A publisher has said it will conduct an “immediate review” into an A Level textbook accused of being “deeply offensive to autistic people”.

Pearson’s A Level Psychology Revision Guide says children who have “tantrums” due to routine changes may be autistic.

The National Autistic Society called it “misleading” and has urged the publisher to correct the book.

It said: “A meltdown is not a tantrum. It is an intense response to an overwhelming situation.”

The revision guide, aimed at but not approved by the AQA exam board, says some autistic children “like to stick to the same routine, and little changes may trigger tantrums”.

But George, who is autistic and studying A level psychology says: “It makes us sound like toddlers.”

He says: “If that’s how they describe meltdowns what other inaccuracies are there going to be? Calling it ‘tantrum’ feels condescending.”

His concerns are echoed by Tom Purser, Head of Campaigns at the National Autistic Society.

He said: “It’s really disappointing to see this misleading phrase in an A-level textbook.”

Mr Purser says a meltdown happens when “someone becomes completely overwhelmed” by a situation and they temporarily lose control of their behaviour – “they may shout, scream or lash out”.

He says: “To call it a ‘tantrum’ suggests that this reaction is naughty, over the top or even intentional, which is simply not true and deeply offensive to autistic people and their families.”

In a statement, Pearson said it was investigating the matter “urgently”.

“We are committed to ensuring our products are held to the highest standards and will be consulting with an independent expert to help us conduct an immediate review.”

FA Review After ‘Concerns’ Raised By England Para-Football Players

October 23, 2020

The FA is conducting an internal review of the culture in its England Para-football squads after “concerns” were anonymously raised by players.

The governing body said it was taking the issues “very seriously” and would “offer support to anyone who needs it”.

Funding agency UK Sport have been asked to help interpret the results of the review and make recommendations.

The FA supports international elite blind, partially-sighted, cerebral palsy, deaf and powerchair squads.

Les Reed, the FA’s technical director, has written to the players informing them that a survey would be conducted “as a consequence of some recent feedback”.

In his email, seen by the BBC, Reed explained it was being done “in case anything needs to change”.

Players were told that John Donnelly, UK Sport’s head of integrity, would be helping to assess the results and conducting focus groups after the review was over.

Among the questions players have been asked was: “Are you aware of times when there has been poor behaviour towards you or others in your team? Eg negative or abusive comments, bullying or discrimination?”

Players were also asked if they and their team were treated fairly, whether they were treated with respect and dignity, and if the Para-teams were well led.

When approached, an FA spokesman said: “The FA is currently undertaking a cultural review across our Para-football teams in collaboration with UK Sport.

“This review follows some recent anonymised concerns that were raised to us about the culture within Para-football.

“Although these concerns have not been raised as formal complaints, we still take them very seriously and have quickly begun a confidential process to better understand the full nature of these matters and to offer support to anyone who needs it.

“Throughout this process, we have been working alongside UK Sport who have been able to provide an independent perspective as we look to address any issues as diligently as possible, whilst respecting anyone who wishes to remain anonymous.

“The wellbeing of our employees, coaches and athletes is something we really care about, and we will continue to do everything we can to offer a safe way for people to speak up.

“Since 2017, we have partnered with UK Sport across a number of initiatives including upskilling our coaches on how to handle complaints and grievances in a high-performance environment. We have introduced robust processes to manage any concerns that we are made aware of so that we can take the appropriate course of action.”

CQC Report: Care Of People With Learning Disabilities ‘Inhumane’

October 22, 2020

Too many hospitals for people with learning disabilities or autism are providing poor care which is, at times, undignified and inhumane, the care regulator for England has said.

The Care Quality Commission (CQC) found physical restraint part of the culture in some places, and cases of patients secluded or segregated for 13 years.

It said national change was needed to stop people “falling through the gaps”.

Care Minister Helen Whately said the findings were “deeply concerning”.

“Nobody should be receiving such poor care,” she said.

“We are already taking action, including investment in community services, independent case reviews of people in long term segregation, and the ongoing work overseen by Baroness Hollins.

“I am determined that this level of care should no longer have any place in our health system, and will carefully consider the recommendations in this report.”

The NHS said it was reducing the number of people in specialist hospitals.

A spokesman added that, since 2015, the number admitted had been cut by nearly a third and the NHS was committed to reducing that further while it invests more in community support and improves the quality of inpatient care.

The CQC’s review comes after a 2019 BBC Panorama programme exposed the mistreatment of residents at Whorlton Hall Hospital.

The specialist hospital in County Durham was closed after undercover filming showed staff intimidating, mocking and restraining patients with learning disabilities or autism.

In 2018, the regulator was commissioned by Health and Social Care Secretary Matt Hancock to review the use of restraint, seclusion and segregation of autistic people.

It visited 43 hospital wards for people with a learning disability or autism, and specialist child and adolescent mental health wards, and other facilities.

Inspectors found most of the mental health wards were not therapeutic environments and could be “noisy, chaotic and unpredictable”.

People were seen “as a condition or a collection of negative behaviours”, the report found, with the result often being restraint, seclusion or segregation.

Patients were “often” subject to restrictive practices because they did not receive care early on, it found.

The regulator also said it was concerned that some people were being prosecuted for injuring staff, when a failure to treat their needs may have contributed to their aggression.

The review also found:

  • Most (81%) of 313 wards for children and young people had used physical restraint in the previous month
  • The length of time people spent in long-term segregation ranged from three days to 13 years
  • A lack of suitable care in the community was preventing the discharge of 60% of people it saw during its review
  • Some people in seclusion were not allowed to wear their own clothes, while others lacked a clean environment and crockery, cutlery and toilet paper

In one case, ward staff stopped the mother of a 24-year-old in long-term segregation from visiting for five months, prevented the patient from using the toilet on occasion, and left her in pain for months with an injured arm.

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Will this report lead to change?

Analysis box by Alison Holt, social affairs correspondent

Part of the tragedy that lies behind today’s report is that the failings of long-term hospital care for people with learning disabilities and autism are well documented – in abuse scandals, in report after report calling for change and in missed government deadlines for their closure.

But the problems start long before people reach hospital.

I’ve spoken to family after family who say if there had been enough specialist help when their child’s behaviour first became challenging, usually during puberty, then they might not have reached a crisis.

They struggled to get the community support needed to keep their child out of hospital, but local help centred on the individual is likely to cost less than the huge sums paid for inpatient care.

This report underlines the predictability of many of the problems and sets out clear solutions.

The question now is will it lead to change this time.

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The CQC found the ward environment, a lack of specialised training and support for staff meant patients’ care did not always meet their needs, with people in community-based services experiencing a better quality of life.

The report Out Of Sight – Who Cares? has called for better capacity in the community and across education and health and care to provide earlier care and prevent people being admitted to hospital.

Dr Kevin Cleary, the CQC’s deputy chief inspector of hospitals and lead for mental health, said seclusion and restraint should only be used in extreme cases.

“We saw too many examples where people were subject to unnecessary restrictions and examples of people’s human rights at risk of being breached.”

He added people often ended up in hospital because they “did not have the right support early on” and said that once in hospital people often did not receive specialist treatment and had no support to leave.

“There is no excuse for this,” he said.

Edel Harris, chief executive of the learning disability charity Mencap, said the findings were “shocking but sadly not surprising”, adding “people deserve to live in homes, not hospitals”.

A NHS spokesman said the NHS has funded a restrictive practice programme led by the Royal College of Psychiatrists that had “already resulted in the reduction of physical restraint and seclusion” and said it would be backed by “intensive support for the 20 young people’s inpatient services where the use of restraint is most prevalent”.

The Disability Power 100

October 22, 2020

The Disability Power 100 is what it says it is. A list of the 100 most powerful people with talents, brains, dreams, and DisAbilities in the UK.

Sadly, yet again, I am not on the list, but I highly respect many of those who are, and have the pleasure of calling some of them my Facebook friends.

I sincerely congratulate them all.

Shielders Need The Support Of A Mayor

October 22, 2020

As coronavirus cases rise, headlines are dominated by northern leaders being forced by central government to accept inadequate financial aid packages. This is a shameful dereliction of duty by the Tories and is rightly attracting ire, both from regional mayors and the press. And yet it is striking that a similar thing is being done to another group – shielders – but with even less attention. New guidance for shielding for people at high risk because of underlying health conditions was released by the government last week, but without even a small offer of financial support. The new guidance advises “vulnerable people” in high alert areas to stay at home as much as possible, but offers no support to help them cope with paying the bills or accessing food and medicine. Even in the highest alert areas, if shielders are unable to do their jobs at home, the guidance only says they “may” be eligible for some benefits. Advertisementhttps://tpc.googlesyndication.com/safeframe/1-0-37/html/container.html

What’s happening to people with underlying health conditions and communities in the Midlands and north are not two separate issues but clearly overlap. Boris Johnson’s second-wave strategy is consistent: restrict people’s livelihoods but offer little or no government funds to survive that. With state support schemes closed, shielders in locked-down Leicester are surviving on food brought by volunteers. Class status is also linked to disability: disabled people are more likely to be in poverty, poor housing and insecure jobs.

Many high-risk employees are terrified of being at work: teachers with low immunity back in packed classrooms and temp workers with asthma forced to get on a busy bus because they have no car. Others have been stuck in their homes for eight months with next to no recognition of what this is doing to their mental health or day to day lives. It is striking that when the psychological impact of lockdown is discussed, there is little mention of the mental health of shielders the group that is more isolated than any other and in some cases, shut away all year.

None of this is about calling for the blanket reintroduction of lockdown, but recognising that inadequate support is putting people at risk. Giving clinically vulnerable people guidance to stay at home is little help if it doesn’t come with the practical, psychological and financial support to help them do so. It is not difficult to understand that if a virus means some people need to stay indoors indefinitely, practical questions will need answering. Can I access food? Will I lose my job? How can I safely have human contact?

Similarly, it was not hard for ministers to predict that existing inequalities experienced by disabled people would lead them to be more vulnerable to the pandemic’s fallout. That a quarter of disabled workers fear they’ll lose their job during the crisis is all the worse considering how much harder it is for disabled people to be hired. Meanwhile, disabled women are twice as likely to suffer domestic violence than women without disabilities but they haven’t even been mentioned as abuse rocketed during lockdown.

I can’t help but long for a mayor of high-risk people to fight our corner. The steps ministers should take are clear enough: extend the furlough scheme for people who are high risk and unable to work from home; ensure that workplace health and safety measures are enforced stringently; help people get deliveries of essential items, such as food and medicines; work to ensure the health and care services disabled people rely on don’t shut down as cases rise; provide better and more accessible communication of information, including for those without the internet, an easy read format for learning disabled people, and signers for deaf viewers.

Johnson’s failure to piece any of this together is a reflection of the limitations of Tory small state ideology in dealing with a pandemic, but also a sign of their ease at abandoning ignored communities. Just as the long-forgotten Midlands and the hnorth are being left to fend for themselves as the virus spreads, people dealing with chronic illness and disability are an easy sacrifice to make. There is not only a sense of the government leaving parts of the public to fend for themselves, but of reneging on a deal: people sacrificed seeing their family and risked their jobs, yet ministers have still not provided a functioning test-and-trace system or financial packages. High-risk communities are more than doing our part. It’s time the government did the same.

Equality Gains In The UK Risk Being Reversed By Coronavirus, Says EHRC

October 21, 2020

Hard-won gains in equality and human rights in the UK are at risk of being reversed by the coronavirus pandemic, and society, the economy and living standards are facing long-lasting damage, the UK human rights watchdog has said.

A report by the Equality and Human Rights Commission says young people, ethnic minorities, older people and disabled people have been disproportionately hit by the pandemic, which has highlighted and widened existing inequalities.

“While everyone has been affected by either the virus or the restrictions imposed in response to it, our report shows that the negative impact has been more severe for some groups than others,” said Caroline Waters, the commission’s interim chair.

“Sadly, this isn’t surprising. We’ve reported for many years now of the persistent and structural disadvantages facing certain groups in our society. It is deeply concerning to see how quickly large numbers of people have become at risk of living in poverty.”

She added: “Without a clear strategy to address this, the small gains we have made in equality and human rights over the past few years are set to reverse with clear and long-lasting damage to our society and our economy.”

Areas of concern highlighted by the commission’s report, titled How Coronavirus has Affected Equality and Human Rights, include:

  • The potentially severe and long-lasting impact on young people, who risk becoming a “lost generation”. School closures, exam chaos and lack of access to remote learning technology mean recent gains in academic attainment could go into reverse.
  • The disproportionately negative effect of the pandemic on ethnic minorities, some of whom are more likely to die from the virus and more likely to experience financial hardship and unemployment as a result of the pandemic.
  • The isolation of care home residents from their family and friends, with significant consequences for their mental health. The report says ministers must balance protecting the lives of older people against their other rights, especially to a private and family life.

While poverty and deprivation are likely to dramatically increase as a result of the pandemic, the commission says it has concerns that universal credit – the principal method of helping those hit by job and income losses – was not built to help those in most need of its support. Advertisementhttps://tpc.googlesyndication.com/safeframe/1-0-37/html/container.html

The report says: “The UK government’s social security system will not be a sufficient safety net to secure an adequate standard of living for everyone, and, given our previous concerns that social security reforms have impacted some groups disproportionately, nor will it protect everyone equally who is at risk from entering or falling deeper into poverty and material deprivation.”

The commission urged the government to intervene to help mitigate the impact of school closures and educational disruption, rising unemployment and plunging living standards on communities already most at risk.

It also highlighted areas where it believes Covid may have had an impact on human rights but where as yet there was insufficient evidence to formally respond. These include concerns that LGBT people have been unable to access healthcare or medication during the pandemic.

The commission is also concerned that older and disabled people are disproportionately affected by the transfer of a wide range of public services online as a result of the pandemic, potentially excluding them from accessing key services.

A government spokesperson said: “Throughout this pandemic the measures introduced have been designed to protect and support everyone, including our most vulnerable.

“The vital steps we have taken include ensuring that NHS frontline staff from ethnic minority backgrounds are best protected, and spending £4.3m on ground-breaking research to understand the links between the virus and ethnicity.

“Our £1bn Covid catch up package will help tackle the effect of the pandemic on young people by reducing the impact of lost teaching time through a £650m catch up premium to help schools support all pupils and £350m National Tutoring Programme for disadvantaged students.”

Billy Caldwell Given Lifelong NHS Medicinal Cannabis Prescription

October 20, 2020

MULTI-DISCIPLINARY ARTIST RICHARD BUTCHINS PRESENTS DOCUMENTARY ON DISABILITY AND ART

October 20, 2020

A press release:

Art In.. is delighted to announce that their artist Richard Butchins will present the documentary the Disordered Eye on BBC4 on 4 November 2020 at 9pm.

This investigative, entertaining and provocatively polemic one-hour film, reveals the enormous impact made on art by impairment and disability and in so doing, reveals that seeing is far more nuanced than we imagine. From blind sculptors, painters, to neuroscientists, Richard uncovers some fascinating ways contemporary visually impaired artists deal with vision loss. 

Richard Butchins is not only an award-winning filmmaker but an artist himself. His own disability informs Richard’s work as an artist and he currently is undertaking a PhD by Practice at the University of Kent’s School of Arts. Richard says: “I use my own experience as a multiple disabled person to make work which examines disability through both mainstream television documentary in arts and current affairs, and my personal art practice.”

At present Richard is reinventing Vanitas through fine art photography, this project is called Floracide. He places flowers and meaningful objects in dramatic lighting, using techniques that reflect his background in film making. This can be translated into private commissions that incorporate items that are personal to the individual or client. Richard says:” The purpose of Vanitas paintings was ‘Memento Mori’ outwardly an expression of luxury and wealth, it was actually about the transient and fleeting nature of life and the possessions therein. It was considered the lowest form of the painted arts. The portrayal of the ‘perfection’ of the human form was the epitome of artistic expression. How apt then, to use Vanitas as a metaphor for the disabled body. While it could be said beauty is in the eye of the beholder I’m interested in the way beauty obscures cruelty and brutality. Cut flowers. Dismembered and broken bodies. These are pictures of the process of death.”

On his disability, Richard says: “All my work is informed by disability in some way or the other. I am not an activist or a campaigner but disability is the reason I take photographs and not painting.” Richard says:” In my PHD, I’m researching how disability has been completely ignored and side-lined by the art world. Cezanne is famous for painting apples. No one asks why he painted apples and not bananas or pineapples for example. It wasn’t for their shape or their colour, what made them so unique for him is it’s the fruit you use when you have diabetes to stop your blood sugar from crashing. Cezanne had diabetes and he would have to eat apples and bread to stop him from having crashes. Cezanne’s biographers by ignore this fact. His work was completely informed by his disability. My point is that there are many more significant artists out there whose work was intimately linked to their disability, although I am no art historian and should not claim this, I suppose it’s why I am doing a PHD.”

For images and release click HERE

For further information and high-res images contact:

Servanne Sohier or John Cotton: pr@artin.agency

 

Comedians With Tourette’s Help To Show It’s No Laughing Matter

October 20, 2020

“I really find it quite uncomfortable being around people with Tourette’s,” confessed comedian Gerard Harris. “I don’t like them, they set me off.”

This is not the preamble to some bad taste joke: it is Harris’s genuine view and one that he is well qualified to explain. Like an estimated 1% of the population, Harris, 47, who has been doing standup since his early 30s, has Tourette’s syndrome.

“My shows are hour-long therapy sessions, but I am over the vast majority of my shit,” Harris said. “I’m doing it because I’ve got to work and I like making other people laugh.”

Harris who has OCD, ADHD and experienced childhood trauma, describes Tourette’s as “by far the most shameful affliction that I have”. Advertisementhttps://tpc.googlesyndication.com/safeframe/1-0-37/html/container.html

“It impacts on your life physically and psychologically in every way,” he explained.

Making the decision to be a comedian took a leap of courage. “It’s bloody hard to do comedy, but even harder when you are used to hiding your own damn self in public. The last thing you want to do is draw attention to yourself more.”

Now, along with other comedians around the world who have Tourette’s, Harris is taking part in a groundbreaking project to destigmatise a syndrome that remains the butt of jokes even today.

At last year’s Edinburgh fringe, controversy surrounded the “funniest joke” award presented to comedian Olaf Falafel.

His joke – “I keep randomly shouting out ‘broccoli’ and ‘cauliflower’. I think I might have florets” – drew criticism from many within the Tourette’s community for the stereotypes it helped to perpetuate about a hereditary, neurological condition characterised by “tics” – sudden, uncontrollable movements or sounds that can be painful and very debilitating. Contrary to popular belief, very few people who have Tourette’s swear involuntarily, but comedy has helped perpetuate this view.

“Coprolalia is the most extreme example,” Harris said. “I say it’s the only bit of Tourette’s I don’t have. I just swear a lot because I’m British.”

The collaboration between Harris and his fellow comedians with researchers from the universities of Bath and Oxford will help inform a forthcoming book, Tourette Syndrome, Stigma and Society, which will include chapters examining the relationship between the syndrome and humour.

It builds on earlier qualitative work by the research teams, which examined the stigma and social exclusion many with the syndrome have experienced when growing up.

“I was hidden in the cupboards and the rooms,” one person with the syndrome told the researchers. “I was never taken out in public. I was even kept away from my own family, except from my grandparents.”

“Many of our participants with Tourette’s reported that they rely on their partners or family members for support as they would be too ashamed or embarrassed to ask for help for a ‘swearing disease’,” explained lead researcher, Dr Melina Malli from the University of Oxford. “Many talked about the loneliness linked to having a condition that renders them a joke, while others highlighted the lack of reasonable adjustment their employers were willing to make for them. These are all aspects of Tourette’s that have not been talked about, as the condition has been trivialised through humour and jokes.”

Professor Rachel Forrester-Jones, director of the Centre for the Analysis of Social Policy at the University of Bath, explained: “Over the years jokes about Tourette’s have resonated and have shaped what people think about the condition, yet in a very narrow and specific way. This matters and has tangible impact on people’s lives because, partly as a consequence, we’ve too often downplayed the severity of Tourette’s and the support people need.”

Forrester-Jones has herself done standup, performing at venues in Margate and Canterbury. She said: “This new work is a recognition that comedy is a powerful tool. But by turning this issue on its head and by interviewing comedians who themselves have Tourette’s, we want to give them ownership of the issue, empowering them to shape the debates and discourse which influence attitudes towards Tourette’s.”

The researchers are keen to interview as many comedians with the syndrome as they can find. Participants have already been found in the Netherlands and Iceland.

“Studies suggest that people with Tourette’s are generally very creative and engage in different artforms, for example, comedy, music and theatre,” Malli said. “It is though interesting to understand why so many have focused on standup comedy. Some of the comedians I talked to said they liked the fact they could use comedy to make people laugh with them, rather than at them.”

So what did Harris think when he heard a Tourette’s joke had won the award at the Edinburgh fringe?

“Envy.”

Remembering the impossible Dave Toole.

October 19, 2020

alanlaneblog

There were two David Tooles in my life.

Dave Toole & Billydog.

There is ‘Dave’. Who was my friend. Who was quite grumpy. The man who had a taste for champagne and chips. Dave who had to climb out of his wheelchair to get through my kitchen door, which meant that by the time he sat down at the lunch table my old dog Billy had already snogged his face off.It was this Dave who tweeted the day before he performed in the Paralympic Opening Ceremony whilst sat in his hotel room drinking the mini bar’s Moet: “To think in 24 hours all this will be over,” That was Dave. Human sized, Leeds through and through.A grumpy bastard. And when he wasn’t in the mood to be otherwise, impossible.

Then there was ‘Dave Toole’. It was this Dave who flew in the Paralympic Opening Ceremony: mighty, beautiful and with a…

View original post 319 more words

Quadruple Amputee: ‘Wear Mask To Protect People Like Me’

October 19, 2020

A woman who lost her feet and hands after contracting Covid-19 and sepsis has urged people to distance and wear a mask to “protect people like me”.

Caroline Coster, 58 and from Bedford, was recovering from coronavirus in March when she developed sepsis and had to have a quadruple amputation.

She said: “I have lowered immunity because of sepsis, I have no antibodies to Covid, I could get it again.”

The teacher asked people to “please take the coronavirus seriously”.

While in recovery from Covid-19 the mother-of-two developed sepsis, an extreme reaction to infection that causes vital organs to shut down.

She almost died twice while in a medically induced coma at Bedford Hospital.

She recovered but her hands and feet had been deprived of blood and had to be amputated.

Mrs Coster said before she contracted coronavirus she was “walking miles every day”.

“Please wear a mask, please keep your distance, please take Covid-19 seriously,” she said

“It’s an awful illness.. it could have broken me but it didn’t.”

Mrs Coster paid tribute to her GP and the staff at the hospitals where she was treated and added she planned “to have a full life”.

“Losing my hands and feet hasn’t made me any different,” she said.

She will continue to raise funds for a Kenyan charity and wants to register her dog as a therapy dog so she can take him back to her former school to give the pupils “a different perspective on differences”.

Caroline Russell suggests Mayor uses taxis for vulnerable Londoners needing Covid tests

October 19, 2020

A press release:

People who can’t physically get to walk-in or drive-through coronavirus testing centres should be given free taxis by TfL, said Caroline Russell today. 
Caroline questioned the Mayor on whether he would do this for older or disabled Londoners who are excluded from at-home testing because they can’t pass the credit reference checks, don’t have a car and can’t physically get to a walk-in testing centre. 
The Mayor said he was ‘happy’ to pass on this idea to his team of negotiators who are currently wrangling with Government to secure a new financial deal to keep TfL afloat during the current crisis. [1] Caroline previously found that up to a million Londoners may be ‘unbanked’ i.e. not have a bank account to help verify their identity through the TransUnion credit reference agency needed to order an at-home test. [2]

Caroline Russell says:
“Up to a million Londoners could be barred from ordering at home tests through no fault of their own. You shouldn’t be blocked from accessing a vital coronavirus test because you don’t have a bank account, a car, or because you are unable to walk far.The current way of getting tests risks leaving some Londoners completely out in the cold, untested and unsure about their health. I’m glad the Mayor is taking this seriously and will add my idea of providing safe, Covid-secure taxis for these Londoners to get tested.”
Caroline Russell, when chair of the London Assembly Economy Committee, published a report, Short-changed: the financial health of Londoners. The report found:

  • Identification requirements still bar some [from accessing bank accounts]. Migrants, gypsies and travellers, homeless people, people leaving abusive partners, young people leaving local authority care, and people with learning difficulties and poor mental health, can all struggle to get access to a bank account if they are unable to provide standard forms of identification to meet money laundering regulations. And despite policy changes to relax the restrictions, some people, such as those living in temporary accommodation, may still be denied access despite having the required documentation.
  • While the number of people with access to a bank account has increased, there is evidence many are choosing not to use them. Estimates suggest around eight million people in the UK have access to a bank account but do not actively use it. In London, this could be as many as a million people.

 The Mayor highlighted a series of problems facing Londoners, including those excluded from credit checks, in his letter to the Prime Minister, published today. [3]

1 in 4 deaf children’s teachers wearing face masks in class despite Government advice

October 19, 2020

A press release:

•  27% of deaf children are being taught by teachers wearing face masks or coverings in class, survey reveals.
• Figures rise to 49% in sixth form or college and 34% in secondary school.
• Governments across the UK do not recommend them in class and the National Deaf Children’s Society says many deaf children won’t understand their teacher.
• Charity calls for schools and Governments to act fast to stop the gap between deaf and hearing children’s results widening.
 
One in four deaf children across the UK could struggle at school because their teachers are wearing face masks or coverings in class, new research shows.
 
According to the National Deaf Children’s Society’s research with more than 500 parents, 27% said that some or all of their deaf child’s teachers were wearing a face mask or covering during lessons. 
 
All four Governments across the UK say face masks and coverings are not currently necessary or recommended in classrooms and the charity says unless schools act quickly, deaf children will struggle even more academically because they won’t be able to understand their teacher.
 
The survey also shows that face masks and coverings become much more common as the age of pupils increases. In colleges and sixth forms, almost half of respondents (49%) said that at least some of their child’s teachers were wearing them during lessons. One in ten (9%) said all teachers were wearing them.
 
One in three (34%) said that some or all teachers were wearing them in secondary schools and one in six (16%) said the same for primary schools.
 
Deaf children in England already achieve less than their hearing classmates at every stage of school, including an entire grade lower at GCSE on average, and there are serious gaps between the results of deaf and hearing children in Scotland, Wales and Northern Ireland. 
 
With face masks and coverings becoming widespread in classrooms, the National Deaf Children’s Society says that the gap will now get wider unless urgent action is taken because almost all deaf children rely on lip reading to understand what others are saying.
 
As a result, the charity is calling on schools to consult specialist staff, parents and deaf children every step of the way to make sure lessons remain accessible, particularly as the survey revealed just a third (30%) of parents were included in discussions about face coverings in class.
 
It also wants schools to introduce every reasonable adjustment possible to make sure deaf children aren’t disadvantaged, such as providing transformational technology like radio aids, organising more communication support and increasing deaf awareness among pupils and staff.
 
In addition, the charity says that all UK Governments must make sure its guidance clearly explains the impact of face coverings on deaf children, whilst also giving schools and teachers the information and funding they need to make reasonable adjustments for every deaf pupil.
 
Susan Daniels, Chief Executive of the National Deaf Children’s Society, said:
 
“Teachers across the country are battling to educate the next generation and keep everyone safe in extremely challenging circumstances. 
 
“However, the UK’s 50,000 deaf children are part of that next generation and if face masks or coverings are used in class, it must not be at the expense of their education, life chances and mental wellbeing. 
 
“Major changes like this must be discussed with specialist staff, parents and deaf children themselves every step of the way to make sure that lessons are still accessible, particularly when they go directly against Government advice.
 
“Governments across the UK also need to make sure that the impact of face coverings on deaf children and the need for reasonable adjustments is crystal clear for schools.”
 
 “Education is a right, not a privilege, and this doesn’t change because you’re deaf.”
 
                                                                                                   

Capita PIP Assessors Slam Employer And Claimants

October 19, 2020

With many thanks to Benefits And Work.

Assessors allegedly working for Capita have given a string of 1 star reviews for the company on the Indeed website, slamming long hours and unpredictable audits. Some warned of a lack of care or compassion for claimants, but one former assessor calls claimants “aggressive liars” and “supposed invalids” whilst another claimed that they had been “physical and verbally abused” and had a claimant “stork” them.

The reviews all appear on the Indeed website and we have no way of knowing whether they are all from genuine current or former employees of Capita. But they go all the way from the present back to 2014 and it would be very surprising if Capita had not taken action long ago if they believed they were bogus.

Dissatisfaction with Capita clearly goes back years and it seems that a switch to telephone interviews since the pandemic began has done nothing to improve matters.

A former assessor from Belfast gave 1 star out of 5 in August 2020 and said:

“They are desperate! Can’t keep staff. Micromanaged! Daily time sheets breaking down what you did every half hour of your working day to justify every minute. . . If not meeting their targets in 6 months…sacked. I stuck it a year . . . Treated like school kids not health professionals.”

A current assessor from Leicester also gave 1 star out of 5 in July 2020 and said:

“Be prepared for 16 hour days, training is good but after support could improve a lot. You are thrown in after.”

Yet another 1 star review came from a former assessor from West Midlands in May 2020 who said:

“14 hour days but only paid for 7.5.

None clinical managers who have no idea what the job entails .

Do not leave your current nursing job .”

There was the occasional positive review, such as this 5 star one in March from a current employee in Birmingham:

“Competitive pay and great philosophy they take car [sic]of their staff and listen to our needs and concerns

Their values are well known throughout the business and regular training is provided”

But also in March, another former employee warned in a 1 star review:

“Please do not leave a NHS post to join Capita as a Disability Assessor – it’s a job that will completely take over your life. All cases are audited and virtually impossible to pass. There’s a very silly rule about getting five grade A reports in a row to get approved. This is a very difficult thing to achieve as audit will tell you amend cases for things such as not typing a word correctly.”

Another former employee from Derry, said in a 1 star review in February:

“The pay is inviting and even the training..although tough is doable. However the job is horrendous. All your work is put through a rigorous audit..and each auditor has different opinions on your work..so you do something one way one time and it’s right.. next time you do it you’re told you’re wrong.”

A current assessor in Wales gave a more generous two stars, but was as damning as their colleagues:

“Most DAs work in excess of 50 hours per week in the first six months. All work is audited and this can be frustrating when assessments are returned and amendments that you don’t agree with are made in your name. Very high staff turnover and nothing like the interview promises. Pressured and fast pace with 12hours work for every 8 hour shift.”

A lack of compassion and empathy for claimants was raised by some reviewers.

For example, a former employee from Cardiff gave Capita 2 stars in October 2019 and claimed:

“This is a great job for a single person with no life! The working hours are unreasonably long, the management are not supportive in the least and as for the care and compassion you have as a nurse – forget it! The whole job is productivity led with little thought or respect for claimants or those assessing.”

In a 1 star review from August 2019 a former assessor from the East Midlands wrote:

“Had to work extra hour’s on day’s off to keep up with the amount of work they gave you. They had no empathy for people who had a disability, they push more and more onto you. Very very stressful”

And In January 2019, a former assessor from Wales gave 1 star and warned:

“I cannot stress enough to anyone even contemplating this role DONT DO IT!!!! It is the most soul destroying, repetitive, depressing and miserable existence. . . There is so much pressure to get a report done, you and it are just a number and any care for yourself or the claimant will be overlooked as your forced to send off reports you disagree with but your name will be on it!”

Most of those posting reviews reserved their criticism for the company, but there were those who attacked claimants as well. A former assessor from Wrexham gave 1 star and said in October 2019:

“If you don’t mind being physically & verbally abused or have the claimants stork [sic] you, then apply.

No work life balance. Contracted 3 days a week but work 60+ hours with no extra pay. Management have no managerial skills. They couldn’t careless about your safety as long as they hit their targets.”

A (thankfully) former assessor from Ballymena gave Capita 3 stars in May 2019 but clearly hated claimants with a passion:

“. . . nearly everyone lies though their teeth to you and is clearly obvious . . . 90% will be blatant, ill-informed liars who attempt to emotionally blackmail you – as a AHP, this is so, so obvious – not least when you meet these supposed ‘invalids’ playing tennis at a local club or out for a days’ shopping . . . you have to tolerate an hour of a person’s lying and aggression . . . Clients are >90% verifiable, clinically and medically inconsistent, aggressive liars who will ensure you are complained against for telling the truth, so they get an extra £10 a week.”

There are very few reviews by Atos assessors on Indeed and whilst the role is called “Awful”, “Dull” and a “chain gang”, the level of pay is stressed by the majority of posters:

“Excellent pay”, “Wages good”, “Money is really good & that’s often the only reason people stay”, “This is very well paid job for what it is.” are the kind of comments that appear in the reviews.

Which perhaps explains why so few Atos assessors complain about their job, at least on Indeed.

You can read the Atos reviews, and many more Capita reviews on the Indeed website.

Having Someone Replace You At Your PIP Telephone Assessment

October 19, 2020

With many thanks to Benefits And Work.

Documents released by the DWP under the Freedom of Information Act explain the circumstances under which you can get a family member, carer, friend or support worker to replace you at your PIP telephone assessment.

According to the document, health professionals “can carry out the assessment with the claimant’s representative (family member or other third party) where prior consent is given”.

It is important to note that this is not about claimants who have an official appointee who is already legally entitled to make representations on their behalf. This is about a one-off arrangement which is put in place solely for the purpose of completing a single PIP assessment.

The main reasons set out for letting someone else do the assessment on your behalf are:

because you don’t have access to a phone;

because you have persistent phone connection issues which make completing a telephone assessment impossible;

for reasons connected with your health condition/disability.

The document gives no explanation as to what reasons connected with a health condition or disability would be sufficient to allow a third party to do the telephone assessment instead.

But clearly issues such as severe anxiety, depression or an autism spectrum disorder which makes communication by telephone extremely limited would all be possibilities. There are likely to be many others.

Consent for the arrangement has to be obtained both from the claimant and from the person who is to be their representative. This can be done over the phone, it doesn’t have to be in writing and it can take place at any time before or during a telephone assessment.

The conversation between the health professional and the representative can be part of a three way call between all the parties or just between the health professional and the representative.

The person chosen by the claimant as their representative has to know the claimant well and know how their health condition or disability affects their mobility and their ability to carry out daily living activities.

This might be your partner, a close relative, a carer, a friend or an advice worker or someone similar who has been given detailed evidence about how your condition affects you.

Even if the representative can’t answer every question asked by the health professional, their input may be sufficient to allow a decision to be made.

If this is something that you think would allow a more informed decision to be made in your case, it would be a good idea to inform the DWP as soon as you get a date for a telephone assessment.

It is entirely possible that there will be considerable resistance to the idea and there is no legal right to have such an arrangement made.

But the fact that it is DWP policy means that a request cannot legitimately be refused without giving any reason or on grounds that are unfair or discriminatory.

If you are not happy with the response you get from the assessment provider, consider making a formal complaint and involving you local MP’s office from the outset.

You can download the document named ‘Guidance limited evidence decisions’ from the What do They Know website.

Online Appeal System Scrapped Before It Begins

October 16, 2020

With many thanks to Benefits And Work.

 

Continuous Online Resolution (COR), a revolutionary new way of deciding PIP, and eventually all other, appeals online has been scrapped following an unsuccessful pilot, HM Courts & Tribunals Service (HMCTS) has announced.

COR was not the same as simply lodging your appeal online.

Instead, COR was a system whereby an appeal panel considered your appeal online and gave a ‘preliminary view’ of what award of PIP, if any, you should get after reviewing the documents and asking you written questions online.

If you and the DWP agreed with this decision then the appeal was completed. If you didn’t agree then the appeal went to a normal appeal hearing.

COR was originally set to be trialled with 1,000 appellants in the Midlands, Sutton and North-West Tribunal Panel area.

In the event, only 254 claimants accepted the invitation to join the pilot and of these only 145 cases were considered suitable and went ahead.

69 cases were resolved by an online panel and all but one of these increased the DWP’s award.

Claimants involved in the pilot had mixed feelings about it.

Those who got a decision they were happy with from the online panel were positive about the experience. Those who had to go through the online process and then on to a normal appeal were frustrated and disappointed.

Some appellants said they accepted a preliminary decision that they were not happy with simply because “they felt they had waited long enough already and did not want a further delay caused by waiting for a face-to-face hearing.”

HMCTS has now announced that the system will no longer be rolled-out, primarily because it costs too much to select suitable cases and carry out all the admin tasks that were not automated within the software.

According to HMCTS

“Evaluation of the wider context of COR and the administrative resource required to deliver it, revealed that a substantial admin resource was required to support COR in selecting, sifting and onboarding cases, as well as carrying out time-consuming tasks which were not automated by the COR system. This therefore had resource implications for any scaling up of the pilot on a national basis, particularly given the low levels of suitable cases.”

HMCTS say they will continue to look for ways in which appellants can interact with a tribunal online.

I Am Greta

October 16, 2020

There are many extraordinary things about the new documentary I Am Greta.

The first is that the film happened at all. Its director Nathan Grossman had never made a documentary feature before.

The former film student was curious when he heard, in 2018, that 15-year-old Swedish girl Greta Thunberg had decided to bunk off school to sit alone outside the country’s parliament in Stockholm as part of what she was calling a “climate strike”.

He started filming a few days later. At first he shot in a low-quality mode on his camera to save space on memory cards, thinking he would be lucky if her story made a short feature for the local news.

But, within weeks, children around the world had started their own climate strikes. Arnold Schwarzenegger was retweeting Thunberg’s posts and Grossman had switched to full high definition.

He continued to film Thunberg and her father at every twist and turn of the adventure that unfolded over the next year.

And what an adventure. Thunberg herself said it could be a movie but it would be a very surreal one “because the plot would be so unlikely”.

Just being along for the ride is exciting enough, but I Am Greta does much more than that.

What Grossman has made is a coming of age movie wrapped up in a super-hero flick. This is the story of how a troubled and lonely child discovers her hidden powers and uses them to change the course of the world.

The secret of Thunberg’s charisma

The whole thing is just so unlikely. It turns out that this small, rather dour girl with pigtails has a preternatural charisma.

As we unravel the paradox of why that is, we begin to understand what is so special about Thunberg.

Most people don’t realise how unforgiving documentaries are on their subjects: If you pretend to be something you are not, you will be found out.

The only way to be “good” at films like this is simply to be yourself.

Watching the film, you realise Thunberg is so fascinating because she is utterly authentic. She isn’t doing this for appearances, she isn’t doing it because she wants fame or attention, she is doing it because she has no choice.

She feels compelled to do something – anything – to try to get the world to take climate change seriously.

Why she can’t look away

Early on in the film, she tries to explain why. “Once the climate crisis has got your attention you can’t look away,” she says.

“Once you understand the magnitude of the problem, you can’t erase it.”

She doesn’t realise that this is the diametric opposite of how most other people feel: We know it’s happening but do everything we can to look away.

Every time Thunberg addresses a conference, we see world leaders tapping away at their smartphones in the audience, or trying to get a selfie with her, but otherwise apparently oblivious to her words.

That tension – between her desire for change and the lack of urgency the politicians feel – is what makes the story so electric.

When Thunberg urges the European Commission to take action on climate change in Brussels, Jean Claude Juncker – then the commission’s president – responds with a speech about harmonising Europe’s toilet flushes.

The compulsion to campaign

Thunberg gives us her take on events in diary excerpts. We learn she has no doubt that Asperger’s Syndrome is a central part of what gives her such “laser-focus”.

“I have it, I wouldn’t say I suffer from it,” she corrects a reporter at one point. And the film shows how campaigning has helped lift Thunberg out of profound depression.

As her influence begins to grow, there is a wonderful sequence on a train where she is filmed writing her diary.

“It feels almost indescribable that something is finally happening,” she writes and breaks into a contented smile. “There are so many who are interested in the same things as I am.”

She talks about how lonely she was at school and the eating disorders she battles. At one point her father mentions how her “selective mutism” and “compulsions” have vanished.

There’s a touching scene where her mother chokes back tears as she describes the progress Thunberg has made. Yet you can’t help thinking her relentless compulsion to campaign can be a curse.

Towards the end of the film, we see her crouched in the cabin of the racing yacht taking her to New York. Huge waves crash past the windows behind her. Thunberg is in tears as she records her diary on a phone. She is missing her dogs, her home and her “routines”.

‘How dare you’

The climax comes with Thunberg’s “how dare you” speech, where she scolds world leaders for their lack of action.

“The eyes of all future generations are upon you,” she warns at the UN Climate Action summit in New York, “and if you fail us, I say we will never forgive you.”

She later joins tens of thousands of protestors on the streets of New York – and millions more join climate strikes around the world.

It is a triumph for Thunberg and her campaigning, and a landmark in progress for action on climate change.

But you can’t help but feel anxious for her future. We have seen the meaning and purpose she has found in campaigning and wonder how she will fare now she is back at school.

The final scenes of the film show Thunberg with her beloved pony.

“I sometimes think it might be good if everyone had a little bit of Asperger’s,” she says as she grooms him, “…at least when it comes to the climate.”

I Am Greta is released in the UK and Ireland on 16 October 2020. Special screenings followed by a Q&A will take place on Sunday, 18 October.

Mother Creates Campaign Cards To Teach About Downs Syndrome Language

October 15, 2020

A mother of a young boy with Down’s syndrome is helping to teach people about appropriate language, after being hurt by words people often used.

Becca, from Cornwall, uses flashcards to make sure people are aware to say things like saying someone “has Down’s syndrome”, rather than “suffers with Down’s syndrome”.

The campaign is being rolled out in hospitals for midwives and other healthcare workers to use, with many in the profession talking about it on social media.

A children’s clothing company has offered to run it, with her son Arthur as the model, and she has been asked to translate it into other languages.

Coronavirus: Patient Has Sudden Permanent Hearing Loss

October 15, 2020

A 45-year-old British man has been left with permanent hearing loss after developing Covid-19.

UK doctors say it is the first such case they have seen linked to the pandemic coronavirus.

Although rare, sudden hearing loss can follow other viral infections, such as flu.

The ear-nose-and-throat experts told BMJ Case Reports journal steroid drugs could help avoid this damage if given early enough.

Blood transfusion

The patient, who has asthma, had been admitted to a London hospital with Covid-19 symptoms and transferred to intensive care after struggling to breathe.

Tests confirmed he had coronavirus and he was put on a ventilator machine.

He also needed various drugs and a blood transfusion before beginning to recover and coming off the ventilator 30 days later.

But a week after the breathing tube was removed and he left intensive care, he noticed tinnitus (a ringing or buzzing noise) followed by sudden hearing loss in his left ear.

A hearing test suggested the loss was linked to damage to the hearing nerve, the middle ear, or both, rather than inflammation or a blockage to the ear canal.

Doctors could find no explanations for his hearing problem, other than his recent Covid-19 illness.

They gave him steroid tablets as well as injections into the ear, which helped a little, but he has some irreversible hearing loss.

“Given the widespread presence of the virus in the population and the significant morbidity of hearing loss, it is important to investigate this further,” the team, from University College London and the Royal National Throat, Nose and Ear Hospital, said

The virus is thought to enter and infect a particular type of cell found in the lungs, by zoning in on a surface receptor they possess.

The researchers say this same receptor is found on the cells that line the middle ear.

And they are recommending medics look out for hearing complications in Covid-19 patients and refer any with sudden hearing loss to an expert for urgent care.

Sculptor In Nigeria Creates Black Prosthetic Hand For His Brother

October 14, 2020

On New Year’s Eve, 2017, Abokobong Amanam picked up what he thought was a firecracker.  But it was actually a firework which exploded blowing off two of his fingers.  When his family tried to get him a prosthesis, they could only find white-skinned or wooden ones.

So his elder brother, John, a sculptor who’d previously worked in special effects in movies, decided to step in, changing both their lives.

Do-Not-Resuscitate Order: Care Home Use Reviewed

October 14, 2020

The use of do-not-attempt-resuscitate (DNAR) orders is to be reviewed after a number were wrongly applied in care homes at the start of the pandemic.

The Care Quality Commission (CQC) will investigate concerns that some care homes still have blanket orders in place covering groups of residents.

It became clear that blanket use was in place in some care homes in the early weeks of the pandemic.

But it was widely condemned by the CQC and medical bodies.

The decision about whether or not to attempt resuscitation if a very sick person falls dangerously ill is supposed to be discussed with the individual, or family members if they are too sick.

Doctors can make a decision on the spot without consultation in exceptional circumstances.

However, the decisions are always supposed to be made on an individual case-by-case basis.

The health minister Lord Bethell has asked the CQC to investigate the latest claims. He told the House of Lords that blanket use of DNARs was “unacceptable”.

Extraordinary pressures

Dr Rosie Benneyworth, CQC chief inspector of primary medical services and integrated care, said: “Health and social care providers have faced extraordinary pressures this year. Both staff, and people using services and their loved ones, have at times raised concerns with us about care.

“It is vital that we take this opportunity to learn from what has happened – challenging poor care and sharing the ways that providers have put people’s needs at the heart of their care so that others can learn from them.”

Dr Benneyworth said it was unacceptable for DNARs to be applied to groups of people of any description.

“These decisions must continue to be made on an individual basis according to need. Through this review we will look to identify and share best practice in this complex area, as well as identifying where decisions may not have been patient-centred, and ensuring mistakes are not repeated.”

NHS England said it had already made clear that orders should only ever be made on an individual basis.

The charity Pohwer said it had found blanket DNARs put in place across Norfolk, West Midlands, London, Oxfordshire, Sussex, Surrey and Buckinghamshire, potentially affecting more than 700 people.

In a statement, the charity said: “There are probably many more cases where the homes did not necessarily admit to the blanket DNAR order, or where they did not feel comfortable speaking with an external organisation. So 704 is the minimum number of individuals that would have otherwise been affected.”

Last week Amnesty International said sending thousands of older untested patients into care homes in England at the start of the coronavirus lockdown was a violation of their human rights.

More than 18,000 people living in care homes died with Covid-19, and Amnesty says the public inquiry promised by the government must begin immediately, including a thorough review of the use of DNAR forms.

Assessed For PIP- In Hospital

October 13, 2020

Melburnians With Disabilities Fear Aftermath Of Long Lockdown

October 13, 2020

When Lina Pane is swimming she glides weightlessly. She describes herself as a mermaid – her swimming pausing the searing pain that regularly afflicts her body.

“I am free. I feel no pain that one hour that I am in the water,” she says.

But when she is on dry land Pane speaks about her body very differently.

“I live with a terrorist. That’s the only way I can describe it. I just never know when it’s going to go off,” she says.

“If a [muscle] spasm happens then I could be down for a week or two weeks, and I’ll be wasting more muscle and it will take me longer to get back up … It’s like spiders and snakes just biting you so badly that you can’t move.”

Pane was born with arthrogryposis multiplex congenita (APC), a rare disorder that affects muscle and joint development. The most effective form of exercise – and relief from intense pain – is swimming in a wheelchair-accessible, heated pool.

But Melbourne’s months-long lockdown due to the coronavirus has forbidden Pane from accessing this escape. And with the state’s roadmap requiring 14 days of zero cases in metropolitan Melbourne before indoor pools can reopen, relief is likely still months away.

“I just thought the pool would be closed for a few weeks, but it just kept on dragging on. And then the pain was increasing, the spasms were increasing,” Pane recounts.

“I’ve gone from being a few hours in my bed to the majority of the day, because my spasms are so bad.”

Pane uses a wheelchair when she goes out, but prior to the pandemic she was able to walk fairly easily around her home. However, months without access to hydrotherapy has caused her to rapidly deteriorate.

“As each week goes past it’s getting worse … I’m worried I’m not going to be able to walk anymore,” she says, tears cracking her voice.

Pane used to use a scale of one to 10 to describe her pain levels, but now that no longer suffices. Each day is now closer to a 12.

“I’m petrified that I’m going to live in my bed.”

Outdoor pools opened on 27 September but Pane says this won’t work as the water’s frigid temperature could do more harm than good.

Victoria’s Department of Health and Human Services (DHHS) told Guardian Australia people could access private hydrotherapy pools for medical reasons, such as those in hospitals and rehabilitation centres, but Pane says this isn’t possible as the vast majority of these facilities are not allowing outpatients inside.

Her support coordinator, Nicky Thursfield, says she has been trying for weeks to get Pane and dozens of other clients with disabilities into a pool.

“I’ve been regularly on the phone to most of the pools, MSAC, GSAC, private pools. I’ve even tried getting clients into hospital pools but it’s just not happening. Even the hospitals are taking a very conservative approach, which I know they have to,” Thursfield says.

“But a lot of the pools in the hospitals are separate from the rest of the hospital. So why can’t we open them up to get people back into them on a monitored and step-by-step process?”

It’s a problem that should have an easy fix, Thursfield believes.

“It’s ridiculous … Break it down so you don’t have 20 people coming at once, but step it out as you would normally do any other medical appointment,” she says.

“I work with a lot of people that require hydro to be able to function. People that have had strokes … Parkinson’s.” Advertisementhttps://a0906900def27047e34f58097da18c93.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

One of the only open outdoor hydrotherapy pools in Melbourne is at the luxury Peninsula Hot Springs, more than a three-hour round trip for Pane. That trip alone would take her days to recover from.

“I was thinking maybe I need to voluntarily admit myself into a hospital or rehab unit to get somebody to notice me,” she says.

Leah van Poppel, chief executive of Women with Disabilities Victoria, says while the state government had made efforts to accommodate people with disabilities, more needs to be done.

“There will be lots of people with physical disabilities who will be experiencing that and it seems it would make common sense for councils to be talking about opening up pools and other facilities to groups of people with disabilities in their local community,” Van Poppel says.

Despite calls for flexibility for people with disabilities, a spokeswoman for DHHS insists public indoor pools must remain closed due to Covid-19 concerns.

“We understand everyone is making huge sacrifices and the closure of indoor pools has been difficult, but this strategy to battle this highly infectious virus is working,” she says.

A strategy that is working for the collective, but not for Pane and those with similar conditions.

The department said their “aim is to do everything [they] can to keep Victorians safe, particularly those who are more vulnerable in our community such as those with a disability or complex health needs”.

But after multiple letters to MPs went unanswered, Pane says she doesn’t feel heard.

“It actually makes me feel really angry because it’s like I feel like I’m invisible, I’m not seen … I know it’s not just me, there are so many other people like me, that are getting worse,” she says.

“After the lockdown is over I will still be left with the aftermath of what it has done to me.”

Quaden Bayles’s Family Getting Death Threats Months After Anti-Bullying Video, Mother Says

October 13, 2020

The mother of Quaden Bayles has told the disability royal commission her family is still receiving death threats and abuse months after their anti-bullying video went viral.

Indigenous woman Yarraka Bayles, whose son Quaden has dwarfism, said on Monday she wanted to use her new platform to change the way the education system dealt with the bullying of children with disabilities.

Bayles explained the lead-up to the video on the first day of a new round of hearings focused on the education system on Monday.

The commission was told how Bayles arrived at Quaden’s school and spotted a group of students patting him on the head and making fun of his height.

She asked Quaden if he was OK, but he shooed her away, the commission heard.

“But then, when he got to the car, he let it out,” the counsel assisting, Kerri Mellifont QC, said.

Quaden had been “hysterically crying and screaming about wanting to kill himself”, the commission heard.

A frustrated Bayles posted the video after she called the school to raise the situation but was told staff would look into it the next day.

The clip – in which the Murri boy urges his mother to “give me a knife, I’m going to kill myself” – made global headlines and prompted an outpouring of support for the family. Advertisementhttps://1fabf6cb7cf76e4f9f6790dc9eab88a6.safeframe.googlesyndication.com/safeframe/1-0-37/html/container.html

Quaden, a keen Rabbitohs fan, was given the opportunity to walk on to the pitch for an exhibition match in Queensland between Australia’s Indigenous All Stars, made up of Aboriginal and Torres Strait Islander players, and the New Zealand Māori.

But the Queensland family has also faced abuse and threats, the commission heard.

“After that video went viral, you actually received online trolling and abuse from people you don’t even know,” Mellifont said.

“Yes, still to this day, every day,” Bayles replied. “People who think it’s their business to make comment.”

Bayles said the family received “lots of death threats … against my children, my granddaughter”.

Last month Guardian Australia reported that the Bayles family was set to receive close to $200,000 in damages plus legal costs after an agreement was reached with the News Corp columnist Miranda Devine over tweets she had shared.

Bayles told the commission Quaden’s school had attempted to improve the situation after her video went viral, but she feared he would be forced to return to permanent home schooling.

However, Quaden is now back at school, in part thanks to his year 4 teacher, Bayles said.

In a pre-recorded video, Quaden was asked by Mellifont what he’d like to see change at his school.

“Probably … one more support worker. A Murri one,” he said. “So when [the support worker] is away, I can have that one and he’s gonna be there.”

Asked about his message to new students who might not know about his disability, he said: “Just don’t be rude to kids who have disabilities and just be kind and be nice.”

Bayles said she would like to see less focus on “anti-bullying”. She said a disability organisation had offered to give a presentation on dwarfism to the whole student cohort, but the school was yet to set a time.

She raised the prospect of an anonymous reporting system that could monitor whether students were being bullied.

“I would rather not call these kids bullies,” she said. “I don’t believe they want to hurt kids. They don’t understand the consequence of their actions. I don’t want to get kids expelled or suspended because that doesn’t help.

“I don’t blame them or the school, in some respects. There’s just not enough education around kids with disabilities, let alone Murri kids with disabilities, in school.”

The hearing continues.

In Australia, the crisis support service Lifeline is 13 11 14. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In the UK, Samaritans can be contacted on 116 123.Other international suicide helplines can be found at befrienders.org

With ‘Deaf U,’ Nyle DiMarco Strives To Show ‘There Is No One Right Way To Be Deaf’

October 13, 2020

When Nyle DiMarco got his start in reality television competing on America’s Next Top Model in 2015, he quickly understood the identity producers were creating for him.

DiMarco is stunningly handsome, with piercing eyes and a penchant for acting. He’s also deaf — a fact that, in the eyes of television producers, seemed to override everything else.

“I always felt that the image that was kind of made of me onscreen was very one-dimensional,” he says. “I was always asked specifically about my deafness, about my identities, but never about the things that I liked or disliked or, really, anything that would have offered more to who I was.”

DiMarco would become the first deaf contestant to win the competition, before going on to Dancing With The Stars and winning that, too.

Now, it’s DiMarco’s turn as a series creator. His new Netflix reality show, Deaf U, follows a group of friends at Gallaudet University in Washington, D.C., the world’s only liberal arts college for the deaf.

It’s a show about college: hookups, activism, awkward dates and late nights in clubs. It’s also a show about friends forging identities and navigating a world not always designed for them.

A Gallaudet graduate himself, DiMarco wanted to show the panoply of experiences on campus — from the “Deaf Elite” descendants of well-known deaf families on campus, to those teetering between a hearing world and a deaf one. Article continues after sponsor message

Some students rely on hearing aids or cochlear implants. Others shun the idea of talking in anything but American Sign Language.

DiMarco spoke with NPR’s All Things Considered about the new show, which debuted Friday on Netflix. “There is no one right way to be deaf,” he told host Michel Martin, through an ASL translator.

Instead, he says Deaf U presents a chance to reframe the world’s understanding of what it means to be deaf. It offers “an entrance into our world, which is so rich in culture and so layered and diverse,” DiMarco says.

“This was a perfect opportunity, and a great entrance point, to bring the hearing world in.”


Interview Highlights

On the divide at Gallaudet between the capital-D “Deaf Elite” and the lowercase-d “deaf”

So often we would refer to people as “elites” who had come from these deaf families, and we’re often forgetting about those other students who had a different perspective. You know, myself, as somebody who views elites as a group, I see it can be a positive thing in preserving sign language, our culture. It’s about passing down those legacies and those traditions that make our culture so rich.

There certainly are “lowercase-d” people who might see elites as someone who’s had an unfair advantage, whether it’s their educational background, their confidence, their identity, their language fluency. Coming into Gallaudet for them, they often face a challenge that they have to not only focus on getting a degree, but also focus on learning a new language and a new culture.

There are so many layers, I believe, to that divide between elites and, perhaps, “lowercase-d” deaf. It’s something that’s really key for our community. It’s very complicated, but it’s a discussion we’re starting to have.

On hiring a largely deaf crew to make the show

As someone who is deaf, I know that if you really want an authentic story, it has to happen behind the camera.

Deaf eyes really capture the culture best, and we actually made it a requirement that we had to hire deaf people. We wanted to ensure that, at minimum, we had 30% of a deaf crew behind the scenes working. We ended up with 50%, which was incredible. And it’s the first time it’s been done in history.

Never in Hollywood history have deaf people had an opportunity to be able to get into these rooms and build power within the community in order to tell our stories in an authentic way. We’re working so later we have a little Hollywood empire, where we’re able to develop our own TV shows and our movies and our content that really reflects deaf culture and an authentic experience. This, essentially, was the start.

On where he hopes to take the series

Obviously, my first hope is for season two. But I really would love to take a deeper dive into some of the layers that make our community so rich. I don’t want to get too serious with the topic, but we’re seeing peoples’ real lives outside of the deaf world, and I would love to highlight that.

I do have a few other projects outside of this. I have another project with Netflix as well, called Audible, which follows a deaf boy at my alma mater high school in Maryland. It’s a really interesting opportunity to see what it’s like for a deaf kid to go to a deaf school and play football with all of his buddies, then go home and not have access to language. His parents don’t sign. And that truly is the authentic story of the deaf community in America.

Birthday Honours 2020: West Brom Runner Dave Heeley Appointed OBE

October 12, 2020

A blind marathon runner who has raised millions of pounds for charity has been appointed an OBE.

Dave Heeley, known as “Blind Dave”, from West Bromwich, has been honoured for services to charitable fundraising.

His endurance feats have included running marathons on seven continents in seven days and plunging into the sea at Alcatraz three months after learning to swim.

The 62-year-old said he was “totally floored” by the honour.

“I do all these crazy things because I enjoy them, not for the recognition,” he said.

“After an event when a charity comes up and says ‘thanks’ that’s all you want.

“But when they told me about this award you could have floored me with a feather.”

Mr Heeley gradually lost his sight throughout adulthood, but it spurred him on to more extreme fundraising efforts.

“It’s not about the money,” he said, “it’s about raising awareness”.

He dedicated his award to his team, saying: “Blind Dave OBE has a fabulous ring to it, but it’s all down to the team around me.”

French Open 2020: Britain’s Alfie Hewett Completes Double By Winning Singles Title

October 12, 2020

Britain’s Alfie Hewett won his second title of the 2020 French Open by beating Belgium’s Joachim Gerard in the wheelchair men’s singles final.

Hewett, who won the doubles event with Gordon Reid on Friday, won 6-4 4-6 6-3 to seal his fourth singles Grand Slam.

He trailed 3-1 in the decider, received treatment for a left shoulder issue but returned take the next five games.

It is the second time he has won the singles title at Roland Garros and his 13th Slam win in singles and doubles.

“I hope to get a good pizza in tonight to celebrate,” Hewett ,22, said.

“It’s amazing to come here today and get the double. Me and my left shoulder are ready for a break.”

As Hewett served for the match there was a lengthy delay at 15-15 because of an mechanical issue with Gerard’s chair.

When play resumed Hewett won the next three points, sealing the match after two hours 36 minutes with a volley at the net.

Hewett’s win with Reid on Friday meant the British pair completed a clean sweep of the doubles titles in the three Grand Slams available this year.

He also reached the singles final at the US Open last month.

Hewett – who has Perthes disease which affects his hip and femur – had been told earlier this year that 2020 would be his final year on the circuit because his disability is not severe enough to meet new classification criteria but he was given a 12-month reprieve last month.

There were defeats, however, for Britons Andy Lapthorne and Jordanne Whiley in the men’s quad singles final and women’s wheelchair doubles final respectively.

Lapthorne was beaten 6-2 6-2 by Dylan Alcott of Australia, while Whiley and partner Yui Kamiji lost on a match tie-break 7-6 (7-2) 3-6 10-8 to Diede de Groot and Aniek van Koot.

After his defeat Lapthorne, 29, said he would take a break from tennis because of mental health issues.

Old name, new purpose: Action on Hearing Loss becomes RNID again

October 12, 2020

A press release:

Action on Hearing Loss, the UK national charity, has announced that it is returning to its original name of RNID. 

The return to the household name, which dates back to 1911, is part of the charity’s ambitious plans to reach more of the 1 in 5 people in the UK who are deaf or have hearing loss. 

The focus on the daily issues deaf people have faced during the COVID-19 pandemic, such as the barriers to communication caused by face coverings, has highlighted the need to be a strong brand, the charity has said.  

Extensive research with 6,000 people led to the charity’s new strategy and brand purpose, which is that “Together, we will make life fully inclusive for deaf people and those with hearing loss or tinnitus.” 

The research found that RNID was still more popular and more trusted despite the name not being used since 2011. People surveyed said they felt that the current brand did not reflect the charity’s history or communicate the amazing work it did.  

Mark Atkinson, Chief Executive, said:

Returning to RNID and redefining our purpose is a critically important step in our journey to make life more inclusive for deaf people and those with hearing loss and tinnitus. RNID continues to be a well-known and much-loved charity and I am proud that we have the confidence to make bold and radical changes which are crucial to our ambition to grow our audience reach and impact. 

“RNID will be a stronger voice for deaf awareness and invest in campaigning for change. We will connect people to the information and advice they need. And we will continue to fund new treatments for hearing loss and tinnitus.  

“Our new purpose, name and identity is about making it clearer who we are for and why we exist. Because now, more than ever, it’s vital that people across society understand the challenges deaf people and those with hearing loss and tinnitus face.”  

The new brand will launch on 2 November. 

Disability Hate Crime: Rise In Reports Of Online Abuse

October 9, 2020

There was an 84% increase in the number of online disability hate crimes reported to police in Wales last year, figures show.

Research by two disability charities shows complaints to the three Welsh police forces that responded jumped from 19 in 2018/19 to 35 in 2019/20.

There are calls for the Welsh Government to introduce tougher legislation to combat the problem.

The Welsh Government said hate crime legislation was a UK government matter.

But a spokeswoman said it would “use every lever available” to combat hate crime, including by providing funding for advocacy and support for victims.

Dyfed-Powys Police has seen reports of online hate crime against disabled people treble between 2019 and 2020, while Gwent Police saw a 50% rise and North Wales Police saw no change, according to figures obtained by the Leonard Cheshire and United Response charities.

South Wales Police did not respond to repeated requests for the information, the charities said.

The figures, obtained under the Freedom of Information Act by the two charities, also reveal just four people were charged by the three police forces that responded last year.

The three forces – Dyfed-Powys, Gwent and North Wales – received 268 complaints alleging hate crimes towards disabled people.

But CPS figures show there were 42 prosecutions for disability hate crime in Wales in 2019/20, with 36 of those (86%) leading to successful prosecutions.

Welsh police forces say they take all forms of hate crime very seriously.

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My autistic son was called ‘frightening’

Alice Legg and a number of her children have autism. She said they had been subjected to “horrible” abuse.

“People call us offensive names like ‘retard’ and ‘spastic’ and make us feel like we shouldn’t be part of the community,” said Ms Legg, from Monmouth.

In one incident, she said her eldest son Adam, who is severely autistic, was left feeling “isolated from the community” after a man told her he was “frightening” his daughter.

“Being told that your son is frightening to other people because of his condition is pretty awful,” she said.

Ms Legg said she had reported another incident she considered to be a hate crime to police, but she did not feel it had been taken seriously.

“I was made to feel like I was just being a nuisance,” she said.

Gwent Police said in that instance no offences were committed but added: “The victim was spoken to by our hate crime officer and has been referred to the Connect Gwent Victims’ Hub for support.”

‘Nothing came of it’

Dan Biddle was one of the worst-injured survivors of the 7/7 London bombings in 2005.

Mr Biddle, who now lives in Abergavenny, lost both legs, an eye, his spleen and is deaf in one ear after Mohammad Sidique Khan detonated a bomb on the Edgware Road tube train.

He told BBC Wales about two incidents where he was the victim of abuse because of his disability.

One one occasion, Mr Biddle said he was called a “lazy bastard” at the local rubbish tip while his wife was emptying the car of waste.

Despite his wife’s best efforts to explain her husband was disabled, the abuse continued.

Mr Biddle reported it to the police but said “nothing came of it” because witnesses would not provide evidence.

In a separate incident, he said two schoolgirls “threatened to tip me out of my wheelchair and stab me”.

He reported the matter to police and it was dealt with through restorative justice.

Mr Biddle said hate crime against disabled people was often due to resentment borne out of a lack of understanding.

He said it was not given equivalence in law with other forms of hate crime, and called for victims to make sure it was recorded as a hate crime.

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What do the charities say?

“As a charity that advocates for digital inclusion, we want to ensure that the internet is a safe place for disabled people,” said Glyn Meredith, director of Leonard Cheshire Cymru.

“Given the recent Covid-19 pandemic, many disabled people have been confined to their homes, with only digital technology to keep them connected to the outside world.”

Mr Meredith said the Welsh Government “needs to demonstrate its commitment to online safety for disabled people” by introducing legislation similar to Scotland’s Hate Crime and Public Order Bill.

A Welsh Government spokeswoman added: “No person in Wales should have to tolerate prejudice or hate crime. We are committed to making sure all victims of hate crime are supported and perpetrators are held to account.”

What do Wales’ police forces say?

North Wales Police said it took disability hate crime “extremely seriously” and had two officers dedicated to encouraging the reporting of such crimes. The force urged victims to come forward.

Gwent Police said it had a team of hate crime support officers who received additional training to support victims, offer advice and signpost victims to other organisations that may be able to offer further support.

It said it knew the numbers of reported hate crimes “still do not reflect the lived experiences of people in Gwent” and urged victims to get in touch.

South Wales Police called on people to report all hate crimes and “hate incidents” to help the force “build up a picture” and allow officers to “offer support and advice to those affected”. It added that “not all hate incidents will amount to criminal offences”.

Dyfed-Powys Police says it is aware that disability hate crime, as with all hate crime, is under reported.

The force said: “Reporting crimes enables the police to investigate and bring offenders to justice, whether that is through the courts or by using other means, such as out of court disposals.

“Some victims prefer not to support an investigation but by coming forward we can help them to get any support they need. We know that the impact of hate crime can be deeply disturbing for those targeted and we are working with our partners to reach them and tackle offenders.”

Robin Smith, UK’s Oldest Man With Down’s Syndrome, Dies Aged 78

October 8, 2020

Staff at a care home in Kettering have paid tribute to Robin Smith, the UK’s oldest man with Down’s Syndrome, who has died at the age of 78, with one care worker saying ”no one that met him could resist adoring him”.

Mr Smith had lived at Northleigh care home since 1986 and died on 27 September, weeks before his 79th birthday. At the care home he took part in yoga and aerobics and could often be found watching the horse racing or singing and dancing to his favourite Cliff Richard and Elvis songs.

Born in 1941, Mr Smith was given a life expectancy of 12 years, due to having Down’s Syndrome.

Billy Fulcher, support worker at Northleigh residential home said: “Robin was the legend of Northleigh. I was so happy to work with such a caring and special individual.

“Robin was more than a resident to me, he became part of my family. He touched everyone’s heart in that way. I take great pleasure in knowing I was part of his life.

“He had such a beautiful soul and he had a laugh I will never forget. He lit up a room with his twinkly eyes and cheeky smile and no one that met him could resist adoring him!”

Elizabeth Munns, a resident at Northleigh residential home, added: “Robin was my friend and he was a very nice man. I’m going to miss him.”

Mr Smith’s brother, Ian Smith, revealed that the time his brother spent at Northleigh was “where he was happiest, with the amazing staff and residents”.

“To all the staff I would like to say a massive thank you for their kindness and amazing care and Robin clearly adored them all.”

The care home will throw a ‘night to remember’ party on 9 October, on what would have been Robin Smith’s 79th birthday, to celebrate his life.

click here for more details or to contact Northleigh

French Open 2020: Britain’s Alfie Hewett Into Wheelchair Men’s Singles Semi-Finals

October 8, 2020

Former French Open champion Alfie Hewett progressed to the semi-finals of the men’s wheelchair singles with a straight-set win over Stephane Houdet.

The Briton, winner in 2017, came through 7-5 6-3 against the Frenchman.

However, Gordon Reid was knocked out when he lost 6-3 6-3 to Argentine second seed Gustavo Fernandez in one hour and 22 minutes at Roland Garros.

In the women’s singles, Jordanne Whiley was defeated 6-3 0-6 6-1 by Dutch top seed Diede de Groot.

Previously Unseen PIP And ESA Documents About Telephone Assessments

October 7, 2020

With many thanks to Benefits And Work.

 

Benefits and Work has begun working through hundreds of pages of guidance and training relating to PIP and WCA telephone assessments that have been published on the What Do they Know website.

The guidance includes previously unseen information that could make the difference between winning and losing an appeal about failing to be present for a telephone assessment.

Benefits and Work has heard from numerous people with experiences like this:

“Capita did not call. My appointment was at 11.45, I waited and no call was received. I phoned them at 1215hrs and was told that I had failed to attend for my assessment and that they had called 3 times! I was sat with my phone waiting for the call.”

However, information in the Capita PIP guidance would make it much easier to prove whether the assessors claims were true.

The guidance states that Capita PIP assessors are required to phone a claimant three times within a prescribed period to carry out a telephone assessment. On the third call they must leave a message on the claimant’s voicemail asking them to rebook.

But we know that some claimants are simply handed back to the DWP rather than given a chance to rebook.

However, If they do not get a response Capita assessors are told they must immediately take a screenshot of their call history and send it to their line manager.

If you have your PIP stopped for not answering the phone when you know that you were never called, you can require Capita to provide you with a copy of the screenshot of the call history.

Different arrangements are in place for IAS. There’s more details in the guide

One of the issues that assessors face as a result of the move to telephone assessments is that they can no longer carry out physical examinations or use visual observations of such issues as lack of eye-contact or trembling to gather evidence about a claimant’s mental health.

For this reason IAS have also published guidance which instructs assessors to ask detailed questions about ‘Fertile areas’, such as childcare and hobbies, in which PIP assessors should look for evidence.

For each fertile area IAS have produced a graphic listing different activities and the PIP related issues that it might provide evidence on.

So, for example, assessors are told childcare is a fertile area and that ‘playtime’ is a potential activity that will allow the assessor to collect information about:

  • motivation,
  • safety,
  • cognition,
  • communication,
  • sensory [issues]

All of which may be true. But if the assessor simply makes the assumption that because you are able to play with your children then you don’t have any issues in these areas then it will not be an accurate assessment.

So, it’s vital that if you are asked about any of these activities you explain in detail any difficulties you have, even if you are not asked to do so.

We’ve provided more information on this in the PIP guide.

We’ll be working our way through the documents over the coming weeks and adding anything else of importance that we find to the guides.

If any readers download the documents and finds anything helpful, we’d be happy to hear from you.

The documents are available to download from the What do They Know website.

Alton Towers Makes Changes After Woman Taken Off Ride

October 7, 2020

A woman with cerebral palsy is to be involved in Alton Towers’ updated disability training after she was left in tears over treatment by staff.

The venue said it had made changes after Hannah Cheetham was publicly removed from a thrill ride when visiting with sister Becky last month.

Alton Towers apologised for that and other behaviour, and has since invited the pair back to discuss practices.

The sisters have agreed to return to the theme park.

They say they want to give disabled people a “better experience” by helping those in public-facing roles.

Becky Cheetham said she had been told her youtube video about the ordeal would form part of staff training.

Sister Hannah, who uses a wheelchair, visits the park annually as an “adrenaline junkie”, and has previously gone on every ride she wished.

But on 28 September, the pair from Greater Manchester were left upset, angered and embarrassed by employees.

They had tried to ride rollercoaster The Smiler and got near boarding without any staff intervention until a worker shouted in earshot of crowds “she can’t walk”, and turned them away.

The sisters were upset further at another ride, Rita, where Becky Cheetham said staff watched as she carried her sister to the attraction – only to be told once strapped in they were not allowed on due to health and safety reasons.

An apologetic Alton Towers says it has “listened” to the Cheethams and wants to do better, particularly in staff training.

A spokesperson said: “We have invited Hannah and Becky back to discuss the changes we can make, and we look forward to showing them how committed we are to making sure that their experience is not repeated.”

Becky Cheetham said: “We feel excited about the prospect of changing attractions for the better

“We hope to help public facing roles improve their disability training and give disabled people a better experience.”

Can I Get The Bus From Jamaica To Dudley?

October 6, 2020

That was the heartbreaking question Osime Brown asked his mum:

He’ll be released from jail tomorrow. There’s a petition here. I’ve signed it and I ask you to do the same.

World CP Day 2020 #CPMakeYourMark

October 6, 2020

Happy World Cerebral Palsy Day, readers.

October 6 is a special day for me. On this day, I celebrate my disability, my life and the support of my family and friends.

This year, World CP Day, like almost everything else, is being celebrated online, through the hashtag #MakeYourMark.

The World CP Day website says:

Make Your Mark This World CP Day

All around the world, people and communities have had to adapt to big changes caused by COVID-19.

People with cerebral palsy have mastered dealing with change, breaking down barriers, and coming up with creative solutions their whole lives.

Make Your Mark this World Cerebral Palsy Day. Show everyone how you adapt and innovate every day.

This year on October 6, we invite you to visit Facebook, Instagram and Twitter and share:

  • Your achievements
  • Solutions you’ve discovered
  • Changes you’re advocating for

Remember to tag us @worldcpday and use the hashtags #WorldCPDay and #CPMakeYourMark

Just in case the organisers of World CP Day pick this tiny little post up, I want to use it to let them know that this, right here, is how I make my mark. Here at Same Difference, I campaign for disability rights through words every single day.