That was the heartbreaking question Osime Brown asked his mum:
‘Can I get the bus from Jamaica to Dudley to come & see you?’- what 21 y/o Osime Brown asked his mum when told he was to be deported after being released from jail this wk for robbery, attempted robbery & perverting course of justice over theft of a mobile fone. Osime is autistic pic.twitter.com/49B1ujqkY0
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.
IAS (Atos) have begun recording telephone assessments for personal independence payment (PIP) Therese Coffey, secretary of state for work and pensions, told the Work and Pensions Committee on Wednesday 30 September.
Coffey told the committee that IAS had begun recording the assessments on 21 September
“But that has not yet started with Capita. That is under, I can assure you, active management to get Capita going quickly on this”
This means that claimants can now ask for a copy of the audio recording of their assessment if they wish to challenge the decision or if they simply want to have a copy for their own records.
We’ll be updating the PIP guide later this week and the latest version will include a simple Subject Access Request you can send to request a copy of the audio recording.
We don’t know when Capita will begin audio recording and whether any announcement will be made. But, as it could begin very soon, there is nothing to stop claimants making a request for a copy and, at worst, being told that no recording was made.
We would still strongly recommend that claimants consider making a covert recording of their assessment, just in case the DWP’s copy goes astray when you challenge a decision.
There’s more about recording your assessment in our PIP guide.
The DWP have begun trialling video assessments for personal independence payment (PIP) Therese Coffey, secretary of state for work and pensions, told the Work and Pensions Committee on Wednesday 30 September.
Coffey was able to provide very few details, except that
“We did try to get some extra capital on video assessments. We weren’t successful in getting additional money, so we have reprioritised some of our capital budget to get that underway.”
John Paul Marks, a senior civil servant at the DWP was able to provide the committee with a little more information.
“For video, CHDA has started trialling how to do fit for work decisions by video, so we’re starting that now.
“For PIP we’re trying to also test doing video assessments for about 500 customers.
“So we can understand, does that improve the health care professionals capacity to ensure a positive experience for the customer and be able to get more evidence to support a recommendation on a functional assessment.”
Many claimants will be deeply unhappy with the idea of video assessments. Some will find the experience of talking on camera provokes considerable anxiety. Some will have concerns about data protection, given that a copy of the video is likely to be saved on a server by the DWP.
At the moment it is not clear whether claimants will have the option to refuse to have a video assessment and insist on either a telephone or, when they become available and safe, face to face assessment instead.
We’ll keep readers informed as more information about video assessments becomes available. And if any of our readers is subject to a video assessment we’d love to hear from you.
Campaigner Lynn Stewart-Taylor said the devolved administrations in Wales, Scotland and Northern Ireland all provided the service.
She said the issue was “life or death” for the deaf community.
The government said sign language editions of briefings were available on Freeview channels.
However, Ms Stewart-Taylor said many people were unaware these existed or were unable to access them and said it should not be up to individual broadcasters to provide the service.
She began the walk on Saturday to highlight the lack of British Sign Language (BSL) interpreters as part of the ‘Where’s The Interpreter?’ campaign.
“This is a life and death situation. It’s making me very anxious,” she said.
“We’re getting information at such a late stage compared to the hearing community.”
Ms Stewart-Taylor, who is walking with fellow campaigner Mark Hodgson, wants to raise money for possible legal action against the government, which she says has breached the 2010 Equality Act.
“We are in a national emergency. There are 87,000 BSL-using deaf people in this country,” she said.
“Deaf people have been telling me that the government’s refusal sends a message to them to say, ‘we don’t care if you deaf people live or die’.
“This is really impacting their mental health and wellbeing.”
A spokesman for the Cabinet Office said: “We are committed to supporting disabled people through every stage of this pandemic and have established BSL interpretation at the No 10 press conference via the BBC News channel and iPlayer, available on all TV packages as part of Freeview.
“The BBC has also made their video feed for the BSL interpreter available to all other broadcasters and for use on No 10 social channels.
“We continue to work across government to ensure that information and guidance is fully accessible.”
A man who uses a wheelchair said he pulled himself up three flights of stairs to take his driving theory test as the centre had no disabled access.
Sam Law, 21, from Cardigan, Ceredigion, said the experience left him feeling angry and “completely left out”.
His mother took photos of what happened at the centre in Haverfordwest, Pembrokeshire on Thursday.
The Driver and Vehicle Standards Agency (DVSA) said it was “extremely sorry for the unacceptable distress”.
A spokesman said it was investigating as a matter of urgency, adding: “We want everyone who is able, to take any driving test and will always make reasonable adjustments for people who are disabled and want to pass their theory or practical exam.”
Service providers have to make reasonable adjustments for people who have a disability so they are not put at a substantial disadvantage compared to those who are not disabled when accessing services.
Mr Law said he specified he used a wheelchair when he booked his test online and requested to have it in Aberystwyth as he knew the centre there had wheelchair access.
He said he tried calling the Haverfordwest centre on the morning of the test to check access but no-one picked up.
“I was very disappointed and angry,” he said.
“I felt left out, completely left out.”
He said staff at the centre advised he return home and book another test, but he did not want to delay the test so decided to climb the steps with his brother’s assistance.
“It was very, very hard work – lifting yourself. Because I sit down all the time, I break bones easily,” he said.
Mr Law, who has used a wheelchair since having a spinal stroke when he was 16, said he was shocked a building used by a government department did not have disabled access.
“It shouldn’t be a case of ‘you need to go to another centre’,” he said.
Michael Beynon was warned by doctors he may need a wheelchair for the rest of his life.
But this weekend, the 25-year-old becomes the first person with Down’s Syndrome from Wales to run the London Marathon – held virtually this year.
He also has a visual impairment and muscle condition, hypertonia – but wasn’t going to let that stop him.
“I’ve had a dream of running a marathon,” Michael tells Radio 1 Newsbeat.
He ran in aid of learning disability charity Mencap, to help change attitudes.
“I’d like to give something back so they can continue supporting people like me. People with a learning disability”.
As you can imagine, running a marathon takes a lot of preparation. And lockdown gave Michael the chance to do that.
“I’ve been doing lots of virtual challenges during lockdown to stay fit and motivated.”
He’s been doing practice races which at times “has been good, sometimes hard”.
In this year’s virtual marathon, runners have 23 hours 59 minutes and 59 seconds to complete the 26.2 miles – either by running, walking or jogging.
And it’s not the first time Michael’s attempted something sporty – in fact, he’s got a stellar track record.
He’s represented Wales and Great Britain in the Special Olympics which has seen him win over 60 medals across different events, including shot-put, long jump and track events such as 100m and 200m.
Michael says he’s inspired by his family – and running giant Mo Farah.
And that support has meant he’s not let his learning disability hold him back.
“If you have a dream, aim high,” he says.
Erica Walker, Michael’s mum says he’s “he’s always been very inspirational and a determined young man”.
Nothing ever seems to faze him and he “puts 150% into everything he does”.
“He’s stubborn, determined and always has a lot of reserve in him to try and be committed at whatever he does.”
‘Determined to live’
Erica says from the day he came out of an incubator at six months, that was “the turning point”.
“He was determined to live.”
A testament to his determination is his performance at the Special Olympics skiing competition this year.
“With his vision impairment, we didn’t even think he’d come down the slope. But he’s blown me away and running a marathon will do that even more.”
Erika will be running as Michael’s support runner – and she’s excited even if it’s “been a while” since she’s last run a marathon.
“But it’s nice doing it alongside him and letting him achieve what he wants to.”
“Adrenaline junkie” Hannah and her sister Becky Cheetham visited the resort on Monday to celebrate a birthday.
In a Facebook post addressed to the park, the sisters wrote they had an unforgettable day “for all the wrong reasons.”
Alton Towers said it was “deeply sorry” for the incident.
Ms Cheetham, who is in a wheelchair, has visited the park every year and has previously gone on every ride she wanted.
When the sisters, from Greater Manchester, went to go on the Smiler ride, a park worker shouted “she can’t walk” to another co-worker, “embarrassing” them by shouting “insecurities across the ride for a crowd of people to hear”.
They arrived at another ride, Rita, where workers watched as Ms Cheetham carried her sister to the ride.
Once strapped in, they were then told they were not allowed on the ride due to health and safety.
Ms Cheetham said she was in tears after the workers “embarrassed” her by “publicly” removing her sister from the ride, leaving her “angry and fed up due to the ignorance of your staff”.
The sisters went to a further ride, Duel, as it has disability access, but were later told by a member of staff the disabled access is not there anymore.
Ms Cheetham said at that point they left the park, having spent £40 each on tickets to go on two rides.
A petition started by the pair online calling for disability awareness training for public-facing staff members, has more than 27,000 signatures.
Ms Cheetham said the attitude of staff was “disgraceful” and not one person had spoken directly or apologised to her sister.
Kate McBirnie, from Alton Towers, said the experiences fell “well below the high expectations we have for our employees”.
She added: “At Alton Towers Resort, we pride ourselves on being an inclusive resort and we really value the feedback that Hannah and Becky have sent to us.
“We have certainly listened and we want to do better – particularly in the area of staff training and the way we communicate ride restrictions to guests with disabilities.”
Same Difference warmly welcomes the disability/medical exemption. We thank all involved in making sure that was allowed and clarified to the public. The bolding of the relevant paragraph below is ours.
A ban on single-use plastic straws, stirrers and cotton buds has come into force in England.
The measure, originally due to start in April, makes it illegal for businesses to sell or supply the items.
People in England use an estimated 4.7 billion plastic straws, 316 million plastic stirrers and 1.8 billion plastic-stemmed cotton buds each year.
Environmental campaigners welcomed the ban but called for a crackdown on further single-use items.
An exemption will allow hospitals, bars and restaurants to provide plastic straws to people with disabilities or medical conditions that require them.
Environment Secretary George Eustice said the government was “firmly committed” to tackling environmental “devastation” caused by single-use plastics.
Campaigners welcomed the move but said the items formed only a “fraction” of the plastic waste littering the environment.
Sion Elis Williams, of Friends of the Earth, said ministers “must also do more to challenge our throwaway culture by forcing a shift away from all single-use materials in favour of reusable alternatives”.
Tatiana Lujan, of environmental law charity ClientEarth said straws, cotton buds and stirrers were “some of the most pointless plastics out there” and the ban on them was “a no-brainer”.
But they remained “a tiny fraction” of single-use plastics, she said, adding that countries such as Ireland and France had “shown far more ambition” with targets on reusable packaging and deposit return schemes.
Mr Eustice said the government was “building plans” for a deposit return scheme to encourage recycling of single-use drinks containers.
As India approaches its ninth month of the coronavirus pandemic, many disabled people continue to struggle to buy food and obtain basic medical care and many are losing their livelihoods, as Arundhati Nath reports.
Twenty-five-year-old Swaminathan used to be the breadwinner for his family-of-five.
“I worked as a steward at Talking Hands Restaurant in Hyderabad until the lockdown was announced,” says
Swaminathan, who is deaf and lives in Thanjavur, South India.
When the restaurant where all staff are deaf closed in March, he lost his livelihood.
“Without a job, money was a problem and we had trouble getting provisions for food and refilling gas cylinders,” he says.
While organisations like the Deaf Enabled Foundation support him and other deaf people financially, Swaminathan and his family remain affected by health issues, but are fearful of visiting a hospital because of the scale of the crisis.
“My mother and brother are ill. Earlier, they used to undergo regular treatment at the government hospital and they received free medicines. But due to the spread of the virus, we had to restrict our visits to the hospital to once every two months lest we get infected.”
With a population of 1.3bn, India’s healthcare system is under tremendous pressure as Covid cases continue to rise. More than 6m Indians have tested positive for the virus so far and there have been more than 92,000 reported deaths.
Sanjay Kumar Bakshi and his wife, Sanju, from New Delhi, are visually impaired.
He says: “I was forced to leave my job at a private company as my employment contract wasn’t renewed.”
He had been earning $203.50 (£160) each month and although he is now selling incense sticks, he makes less than half his previous wage.
“I’m still on the lookout for a job, but I wonder why no one wants to give me a job although I’m educated and have work experience.”
A study of 1,067 disabled people by the National Centre for Promotion of Employment for Disabled People (NCPEDP) found that 73% of respondents had faced severe hardship and challenges during the pandemic.
It found 57% of those faced financial crisis, 13% faced challenges in accessing basic food and 9% faced obstacles in access to healthcare.
The NCPEDP says some disabled people – such as those who sold goods at railway stations or were factory workers- reported losing their livelihoods. It has also noted an increase in domestic violence against disabled women and children.
In India, disabled people are sometimes seen as objects of sympathy and unsuited to professional employment. This value judgement has been compounded during the pandemic by a reduction in transport services and an increase in the use of online education, which is often inaccessible.
Ramya Miryala, director of Deaf Enabled Foundation, says some deaf people she has worked with have been bankrupted due to not being able to travel to work when public transport ceased and the cost of private cabs was prohibitive.
“Some hearing-impaired people were unable to pay rent and their landlords were troubling them to pay up,” she says. “Many companies that these people worked for couldn’t pay salaries on time, owing to loss of business due to the lockdown.”
It can be challenging for some deaf people, in lower economic groups, to pursue certain jobs because of a lack of accessible technology and interpreter support all of which impacts on employment prospects.
Hyderabad-based G. Sunitha, 37, used to work as a housekeeper, but had to resign when public transport stopped during lockdown.
“My husband is disabled as well and doesn’t have work now, my father too passed away recently. We’ve had difficulties getting food and we had to leave our house because we couldn’t pay rent,” she says.
“I’m currently staying with my sister.”
Although Sunitha receives some subsidised food, she is yet to receive the monthly disability pension of $19 (£15). She had to re-apply for the provision in March but there have been administrative delays due to lockdown. While she waits, she struggles to pay for the basics and her daughter’s education.
It is not just a lack of financial support which has impacted the disabled community. Acts of human kindness and offers of help – such as guiding someone through a train station – have also decreased temporarily, due to fears of the virus and social distancing.
George Abraham, Founder and CEO of SCORE Foundation which works for the empowerment of visually impaired people, says: “People are now likely to be apprehensive and hesitant to come forward to lead and guide a person with disability like they did earlier.”
But he believes these changes will be temporary and things will improve in time.
“I believe technology can provide solutions as far as education and accessibility is concerned. There will be a lot of changes in the future.”
Other people in the charity sector, however, remain more sceptical.
The NCPEDP says it wants pensions to be provided swiftly and that the food, healthcare and Covid-testing needs of disabled people and their families should be prioritised. It says caregivers should also be issued with passes to enable them to travel to their clients’ homes.
But it also fears these calls may not be heard.
Its executive director, Arman Ali, says, “In spite of creating so much noise and engaging with the government at all levels across the country, I’m not sure if disabled people would be prioritised in any future disasters.
“Since disability in India continues to be looked at as charity work only, there isn’t much political will and unfortunately, disability issues do not find a place in the mainstream agenda and policies.”
Although approached, the Indian government’s Disability Affairs department declined to comment on this article.
The Australian TV personality is the highest-profile player to lace up his boots for a game of PDRL. He introduced himself to the sport by throwing an intercepted pass that resulted in the first try being scored in the English game before eventually going on to conquer the world with Warrington Wolves.
Now with all competition on hold because of the coronavirus pandemic, and the financial fallout hitting rugby league hard in the United Kingdom, he has donated money to all five PDRL clubs with a sense of parental pride.
“I feel very responsible for it, almost like a parent as I was there as it came into the world,” he told BBC Sport.
“I just want to give it the best start it can possibly have. I believe in the sport of PDRL so much. I’ve loved it.
“It has been completely life-changing for me and I know it has been for my team-mates and all the other people who play it.”
The 50-year-old has given profits from his documentary, Take His Legs – which charts the game’s inception in the northern hemisphere and Warrington Wolves’ journey to claiming the World Club Challenge trophy in Australia – to the charitable arm of the Cheshire club as well as Leeds Rhinos, Wakefield Trinity, Castleford Tigers and Wigan Warriors.
As a project that Hills initially self-funded, he was keen to put money back into the sport after its success on Channel 4 and its export to Australia.
“I just felt bad taking all the money. I got so much out of it,” he said.
“I ended up playing rugby league again. We played at Anfield, at the Halliwell Jones, at ANZ and did all this amazing stuff, and for me that is what I got out of it. So I wanted to make sure that some of the profits went to the foundations.
“I gave some money to the Wolves Foundation, ended up sponsoring the training kit with some of the profits, and had some left over so wanted to make sure that all foundations benefit from this.
“Warrington started up the first PDRL team in the UK, but if it wasn’t for Leeds, Wigan, Castleford and Wakefield we wouldn’t have had anyone to play against. If not for them we wouldn’t have a competition.
“I felt that as much as we are enemies on the field, we all have a drink afterwards and we are all bonded by this common experience of having disabilities and being able to play rugby league. We are all a bit of a family.”
Leeds Rhinos Foundation welcomed the money as an “amazing gesture” during the trying financial times of the health crisis.
“It is very welcomed in these times of uncertainty,” said Gareth Cook, head of community and engagement at Leeds.
“Any donation, big or small, is always well received.
“We got an email out of the blue from Adam saying we would get a donation from the profits from this documentary that we all watched. It is very generous and he didn’t have to do it.
“For us, it will go towards buying new kit for the team next year. It really shows the togetherness of rugby league.”
Hills said he always intended to share takings from the show, adding that it was the “best time” for the money to be made available.
While competition has been put on hold this year, there are plans to relaunch in the coming months, with hopes also high that the sport will be included in the 2021 Rugby League World Cup.
“Some have never had a chance to play rugby league, while some of us did and had it taken away, so it feels like we have just rediscovered it again,” he said.
“The thing I’ve learned through all this is that sport goes hand in hand with mental health, especially disability sport.
“It is not just about playing rugby league, it’s about turning up to train every week and having a whole bunch of guys that you can call your mates that you can bond with and who understand disability but don’t necessarily have to talk abut it.
“It’s so good for everyone’s mental health and something we are all missing that at the moment.
“Charities are all being hit, and yes I was always going to distribute money to the foundations, but now with lockdown and Covid it is even more important.”
Ofsted had suspended services at Bradbury View Children’s Home in Newcastle amid “serious and widespread concern” after visiting in September.
Issues included staff not knowing the “complex” health needs of children causing one child “actual harm”.
Home owners the Percy Hedley Foundation said the coronavirus pandemic caused “a number of very concerning issues”.
The inspectors report said children at the home in Forest Hall were at “serious risk of harm” and “of loss of life” because of the way the home was run.
“Children and young people are not safe in this home,” the inspectors said.
Incidents the inspectors noted included:
One child suffering “actual harm” after staff failed to supervise them as required by a risk assessment
A fire caused by a build up of dirt in an oven
Staff failing to respond to reports a child was being hurt by another young person, leading to that child being hurt again
Not all staff trained to deliver emergency medication, for example when a child has an epileptic episode, which could cause “loss of life”
High staff turnover means staff are “unfamiliar” with children’s individual needs
Lack of management and oversight at the short-staffed home
The home, which has space for up to 20 children aged between six and 18, was rated good by Ofsted at its last inspection in October 2018.
Percy Hedley said it reported concerns to Ofsted prompting the inspection and, while disputing some of the report’s factual accuracies, accepted the “thrust of its main conclusions”.
The charity said: “Rather than continue the uncertainty by trying to put actions in place to enable the home to re-open whilst managing the impact of Covid-19 across all of our services, the board made the decision that this residential home should not re-open in the near future.”
Eleven residents have been affected by the closure, some of whom have already been moved to new homes.
The site plays musical notes to create sonic graphs of Covid-19 cases that allow the visually impaired to keep track of infection rates and fatalities, using the latest official data for health boards and local councils.
It borrows a technique used in high-energy astronomy where astronomers use audible tones to augment charts of complex information from parts of the electromagnetic spectrum invisible to the human eye.
Its developers were drawn from a group of 1,000 volunteers called the Scottish Tech Army (STA), set up to help charities and public bodies use technology during the pandemic. They believe it is the first time this technique has been used in a public health project.
Alistair Forbes, a tech entrepreneur who co-founded the STA, said the system, known as sonification, could be easily taken up across the UK and overseas.
Developed with a charity for the blind called Seescape, it allows visually impaired people to make fully informed decisions about visiting or working in other areas, and following the news about the pandemic.
“It’s a generic technique,” he said. “It is taking any time-series dataset and applying this technique to it.”
Eirini Komninou, a Glasgow-based computer scientist who lost her sight in 2016 and helped develop the prototype for the sonic graphs, said people with impaired vision were frequently unable to follow the evidence about the scale and significance of local outbreaks.
“We want to be inclusive and make data as accessible as possible for those people who don’t have functional eyesight,” she said.
The audio capability has been added to a data dashboard developed by the STA that allows users to track coronavirus outbreaks using heat maps, graphs and data bars that display infection rates across the country.
Komninou said those charts would be easily read by fully sighted people, but the audio descriptors and screen readers used on computers and smartphones by the visually impaired were unable to cope with graphs and charts.
The new system uses eight tones, or pitches, to create an audio map of charts that contain each day’s infections or fatalities, either across Scotland or at health board or local council level, since 28 February.
Adding this sonification technology has made the charts much more accessible to visually impaired people. The team’s next task was to ensure blind users could select much shorter time periods from the graphs, choosing just to hear the last week or month of results.
Tina Snow, from the Isle of Wight, was unable to see the warrant card produced by an officer at her home, and he had no other way of identifying himself.
Hampshire, West Yorkshire and Thames Valley police have now launched the Visual Impairment Protocol scheme.
It is hoped it will be rolled out across all forces in England and Wales.
Ms Snow, of Newport, said: “Last year I had a police officer call at my door…unfortunately he did not have any braille ID on him.
“I let him in and I shouldn’t have because I was taking a huge risk, as he could have been anybody.”
She then approached Hampshire Constabulary and called for the system to be reviewed.
The force has developed the new scheme, which can be used by anyone with a visual impairment or their carers, with West Yorkshire Police.
It has also been adopted by Thames Valley Police.
When a visually-impaired person calls 101 or 999 and informs the call handler they have an impairment, a password of their choice is agreed.
If an officer then visits that address, they are expected to state the password before gaining entry.
‘No good moaning’
Ms Snow said: “Hopefully the new scheme will safeguard people in the future, though it is worrying that it has taken this long.
“It doesn’t need to cost money to solve these issues.
“If you have a disability it’s no good moaning when something’s wrong. You’ve got to work with that organisation to find a solution.”
Assistant Chief Constable Craig Dibdin, of Hampshire police, said the force was working with local sight charities to improve the scheme.
He added it was hoped all 43 police forces across England and Wales would adopt the scheme in the future.
Lockdown was easy for me, it has become my daily state more frequently throughout my life. I have a debilitating connective tissue disorder that keeps me indoors most days. It was a relief I no longer had to go out and pretend to be normal when wracked with ill-health and hidden pain. Like thousands of others with rare conditions, I’m already in a minority within a minority, marginalised by our NHS, battling increasing disability day by day. So, while many fear a second lockdown over the winter months, I haven’t gone out more often since the first one was lifted because I risk a double jeopardy – catching Covid, then being a low priority for medical care.
Back in March, without consultation and days before the first lockdown, the Clinical Frailty Scale (CFS), a worldwide tool used to swiftly identify frailty in older patients to improve acute care, was adapted by the National Institute for Health and Care Excellence (Nice). It asked NHS staff in England to score the frailty of Covid patients. Rather than aiming to improve care, it seems the CFS – a fitness-to-frailty sheet using scores from one to nine – was used to work out which patients should be denied acute care. Nice’s new guidelines advised NHS trusts to “sensitively discuss a possible ‘do not attempt cardiopulmonary resuscitation’ decision with all adults with capacity and an assessment suggestive of increased frailty”.
Checking the scale, I found I would score five, the “mildly frail” category, and therefore should I get Covid I could be steered towards end-of-life care. Bluntly, if I catch the virus, the NHS may help me to die, not live.
By early April, there was a proliferation of illegal“do not resuscitate”(DNR) notices in care homes for people with learning disabilities, and for older people in care homes and in hospitals. Many acutely ill patients stayed at home with Covid symptoms in the belief that they risked being denied care in hospital. Following warnings by the healthcare regulator, the Care Quality Commission, and other medical bodies, that the blanket application of the notices must stop, and legal challenges by charities, exclusions were made to the Nice guidelines.
These included “younger people, people with stable long-term disabilities, learning disabilities or autism”. Yet the guidelines remain in place, in spite of the fact that they appear to contravene the Human Rights Act (including the right to life, article 2, and the right to non-discrimination, article 14). I feel no ease, for myself or countless others.
England’s initial Covid strategy of herd immunity cost time and preparedness: patient numbers quickly outstripped resources, and medical staff were left to deal with harsh choices. Along with so many missing diagnoses and treatments for cancer and other serious conditions, by May the UK was found to have the most excess deaths of any country in Europe. In June, the Office for National Statistics released Covid-19 statistics that revealed that disabled girls and women (aged nine to 64) were 11.3 times more likely to die of Covid than non-disabled girls and women of the same age, and the majority of people who had died from Covid in the UK had been disabled.
A spokeswoman for Nice says it is “very aware of the concerns of some patient groups about access to critical care, and we understand how difficult this feels. Our Covid-19 rapid guideline on critical care was developed to support critical care teams in their management of patients during a very difficult period of intense pressure.
“The guideline says that on admission to hospital, all adults should be assessed for frailty, and that other co-morbidities and underlying health conditions are also taken into account. The frailty scoring system is not perfect, therefore Nice has always made clear that clinicians should take any decisions about care in conjunction with patients and their carers where possible, and that a holistic assessment is the best course of action.”
“Difficult” is a hollow word for the feeling of being selected to die. It’s difficult not to conclude that those with long-term conditions and disabilities, like myself, have become viewed as a sacrificial herd. There are many other high-risk categories of people. Men, overweight people and BAME communities, for example, have all been shown to have a higher risk of dying from Covid, and it would be deplorable if they were denied care on this basis. Why, then, is this acceptable for frailty? The human race has progressed to an era where diversity and inclusion enriches us all, but a deplorable Nice Covid-19 policy has instead regressed 100 years to the darkest era of social Darwinism, where medical care could be denied to those of us who are less fit and healthy.
Thirty years after the passage of the Americans with Disabilities Act, universities still have a long way to go toward making their campus recreation programs accessible and inclusive to people with disabilities, a new Oregon State University study found.
The study, published Thursday in the Journal of Kinesiology and Wellness, analyzed the language and official statements relating to disability access on university recreation program websites along with the photos used to promote those programs online.
Across the 24 large universities chosen for the study, researchers found a surprising dearth of imagery and language indicating that people with disabilities were welcome in campus recreation programs and that accommodations and access were readily available to them.
“If you have representation, or if there’s a perception of representation, then that in and of itself can capture interest and serve as an invitation. But if you don’t see yourself in something, you just don’t look at it,” said co-author Brad Cardinal, a kinesiology professor in OSU’s College of Public Health and Human Sciences.
If a college has no pictures of people with disabilities using its gym facilities, or its website still uses outdated terms like “handicapped,” Cardinal said that sends an implicit message to people with disabilities: “This program doesn’t really care about me.”
The study combed through recreation program websites for 24 colleges throughout Alaska, Arizona, Hawaii, Idaho, Montana, Nevada, California, Oregon, Utah and Washington. Oregon State University, Portland State University and the University of Oregon were all on the list.
Researchers reviewed the sites for usage of terms relating to disability, such as “access,” “adapt,” “accommodation,” “wheelchair” and “inclusive.” They also looked for whether these websites included any images of people with disabilities or equipment that was specifically adapted for use by people with disabilities.
Finally, they looked to see if the websites offered any disability statements, whether those were recreation center-specific statements, or links to the university’s overall disability or non-discrimination statements.
Results showed disability-related words appeared 618 times across all the recreation program websites, but just two out of the 24 universities accounted for nearly 40% of occurrences.
Photographs relating to disability appeared 49 times, but only 10 universities had a disability-related photo, and even then, only five universities had photos that showed actual people with disabilities using accessible exercise equipment rather than standalone pictures of the equipment.
As for disability statements, 18 of the universities simply linked to the generic university non-discrimination statement.
“It’s kind of disheartening to me, the idea that equipment and things like a parking space or a ramp get a photo, but then there’s an absence of people with disabilities,” Cardinal said. “That is very uninviting.”
As addressing the language and images used on a website is a fairly low-cost endeavor, Cardinal speculated that the reason university recreation programs are so lacking in inclusive statements is due to a lack of representation among the employees crafting these promotional messages.
“It’s an after-thought, sometimes, for people,” he said. “I think somebody from the disability community could really help inform on this. Their contribution to a committee would be invaluable.”
The researchers recommended that universities create specific “Inclusive Recreation” or “Accessibility” web pages devoted to highlighting accessibility features, people with disabilities and adaptive equipment within their recreation centers.
Universities could also push for more basic-level disability service staff training, as well as one-on-one facility, equipment and program orientations so people with disabilities can become more familiar and comfortable in recreational spaces.
In his years of research, Cardinal said he’s learned that barriers to access can be humiliating and exhausting to people with disabilities.
“They say, ‘We just want to go and work out. We don’t want to have to go and advocate for ourselves in yet another setting,’” he said. “It wears them out.”
James Chilvers, 22, from Gorleston, Norfolk, featured in a BBC Three documentary called Step Into The Ring, which follows a group of young wrestlers.
He said: “The last thing that I saw were bright headlights and then there was this intense ringing in my ears. Instantly, everything that I did before, I could no longer do because my dad was drink-driving.”
His trainer Zak Knight said: “The guy’s just got so much positive energy and so much determination that every session is a test for me.
“It’s like, what am I going to do with this guy next week?”
Smart devices have been helping make homes more accessible for people with disabilities, care needs and older people for awhile.
But now the National Robotarium at Heriot-Watt University is collaborating with care providers and users of assisted living services to create technology and solutions together.
BBC Click’s Paul Carter visits the Ambient Assisted Living Lab to find out more.
A new wheelchair accessible boat has been launched in memory of “legendary” angler Bob Church at the reservoir where he used to fish.
The vessel allows disabled anglers to fish independently at Pitsford Reservoir in Northamptonshire.
The boat, provided by the Wheelyboat Trust, has been named “Bob Church MBE”.
Andy Beadsley, director of the trust, said it was “important for disabled anglers to have hassle-free access”.
Mr Church was one of the best known anglers in the UK and won gold at the World Fly Fishing Championships in 1987 and 1988.
He wrote more than 20 books on fishing, and also served as a director and later president of Northampton Town Football Club.
The Angling Trust, which represents anglers in England and Wales, described him as “legendary” and he was awarded an MBE for services to fishing in 2015.
Mr Church had Parkinson’s disease and used an accessible boat at Pitsford Reservoir to continue fishing. He died in 2019, aged 83.
Mr Beadsley, a wheelchair user himself, said he thought Mr Church “would have very much approved” of the new boat at Pitsford.
Jake Williams from Anglian Water, which runs the reservoir, said Mr Church was “a huge part of the angling family at the reservoir and was well respected by everyone”.
He said: “We hope many more people with limited mobility will be able to use the boat to gain access to the water as a lasting legacy to Bob’s passion and love for the sport.”
A terminally ill man who is paralysed from the neck down has set a world speed record in a custom-made electric wheelchair.
Jason Liversidge, who has motor neurone disease, reached nearly 67mph (108km/h) at Elvington Airfield, near York.
The father of two, from Rise in East Yorkshire, had been aiming for the record for about three years.
The world speed record for an electric all-terrain mobility vehicle was previously 62mph.
Mr Liversidge – who once hit the headlines for trialling a synthetic voice with a Yorkshire accent – was presented with his official Guinness World Records certificate at the airfield after setting the new mark earlier on Sunday.
His wife Liz said: “I think it is safe to say he feels amazing. We just want to thank everyone who has been involved – it’s been a long road, but here’s finally got there.
“Everybody has done a fantastic job.”
Mr Liversidge, who was diagnosed with motor neurone disease in 2013 when he was 37, previously said he wanted “to leave a legacy for his little girls” and raise money for the Motor Neurone Disease Association.
Mrs Liversidge said: “Jason has always been a bit of an adrenaline junkie. He loved fast motorbikes when he was well. He’s skied all his life.
“He can’t ride motorbikes now and he can’t drive a car, so for him it seems a practical solution.”
Revitalise chairman urges Government to act now on Social Care Sector COVID-19 Support Taskforce Report to restore vital respite care services
Failure could result in permanent damage to physical and mental health
The chairman of Revitalise Respite Holidays, George Blunden, today warned Government that its failure to allow home carers and their loved ones to take desperately needed respite care breaks during this autumn and winter could cause serious long-term damage to the physical and mental well-being of tens of thousands of ordinary people.
He urged Government to respond urgently to the recommendations of the recent Social Care Sector-COVID19 Support Taskforce Report* by changing the rules and opening-up vital short-term care breaks at places like Revitalise, without delay. Restoring hope to the army of forgotten unpaid carers, whose invisible sacrifice goes on behind closed doors in every street, village, town and city across the UK would provide a much-needed boost.
Revitalise chairman George Blunden said:
“The prospect of another six months of isolation and anxiety for unpaid home carers, already at their wits end, will be the final straw for many.
“Their only escape – a respite care lifeline – was snatched away, just when it was within their post-lockdown grasp and now, they have been condemned by a seemingly uncaring Government, to get on with it!
“The Government must act now on the recent Social Care Sector COVID-19 Taskforce report which recommends that vital respite care services like Revitalise should open without delay.
“We cannot allow the long-term physical and mental well-being of home carers and those they care for to be put at risk”.
The voice of carers
“I am just drained physically. It’s a terrible feeling waking up and being tired. I’d like to see the Government live in my shoes for a week”.
Tracey, carer for son Conor
“Carers are ignored. I woke up and thought how long am I going to live with this anxiety? But there is no-one there to listen to us”.
Fatima, carer for daughter Sindhi
“It’s really been like Groundhog Day for most of the year. Carers do their best to hold up psychologically and don’t show their feelings for fear of showing weakness, especially men. But it has played on our mental state”.
John, carer for wife Alison
“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 urgently need a break”.
Hilary, carer for son Shaun
“It’s hard to stay positive all the time. I would love to be able to take a break – I am stressed out to the world’s end. The coronavirus is a nightmare, I’m so scared that I am going to bring it home”.
Kevin, carer for wife Annette
These are the unheard voices of home carers, as they struggle to keep going 24 hours a day, 7 days a week. Many face their caring challenge alone as the Coronavirus Act, shortly to be renewed by Parliament, will continue to deprive them of all community support.
Revitalise chairman, George Blunden concluded:
“Covid-19 is a deadly disease but, in an emergency, patients have the best of NHS treatment awaiting them in hospital.
“Is it too much to ask that selfless home carers and their loved ones are able to call on emergency short-term respite care, when they reach crisis point?
“We must protect home carers and we must protect our NHS from the fall-out of a willful failure to make urgently needed respite care available”.
Growing Space said some people would “starve themselves” rather than leave home to go to the shops.
Aneurin Bevan health board said clinicians were expecting a surge in mental health referrals this winter.
The health board is already seeing rising levels of anxiety in those with existing mental health problems.
Rhiannon Currie, 36, has seen her anxiety increase throughout the pandemic, which has meant she has sometimes gone without food.
“I feel a lot better when I’m home because I know no-one is going to get me and nothing is going to get me,” she said.
When Ms Currie is hungry, she prefers to order a supermarket delivery to her home and wait for that, which can sometimes take days, rather than leave her home.
“If I decide to go to the shop and I really need to get something I’ll psych myself up to go out, or I’ll think I don’t feel like going out today, I’ll go out tomorrow and I keep putting it off,” she said.
Growing Space, which helps people with mental health conditions access food and medication, said it was expecting a wave of people needing help.
The charity operates horticultural therapies across the Aneurin Bevan health board area and is expanding its services to the Cardiff and Vale area because of the level of demand.
Chief executive Bill Upham said: “We know people who would starve themselves because they have been so scared to go to the shops.”
“Some have been so terrified to collect their medicines that they have been having suicidal thoughts. We have been delivering food and medicines.”
Amy Mitchell, divisional head of occupational therapy for mental health and learning disabilities at Aneurin Bevan health board, said there had been an increase in “crisis referrals” in the past month and rising levels of anxiety.
But she said the increase in referrals could be for a variety of reasons.
“We’ve noticed quite a big increase in crisis referrals, people who are socially isolated and feeling quite depressed as a result of that.
“We’re seeing more referrals at the primary care level for things like anxiety management,” she said.
“We are anticipating a surge in referrals, particularly over the winter.”
She added it was likely anxiety about the pandemic had meant people have struggled to access food and medication, but said a “welfare initiative” was in place to help people who were suffering.
Ahead of the winter she said: “We are trying to put measures in place so that people feel supported and they know how to access services directly.”
Former Formula 1 driver Alex Zanardi has shown “signs of interaction” as the Paralympic champion remains in semi-intensive care after a road accident, doctors said on Thursday.
In a statement, the San Raffaele hospital in Milan said he “responds with transient and initial signs of interaction with the environment” to visual and acoustic stimuli.
Despite Zanardi’s significant progress, doctors say it is still too early to make a prognosis because of the “complex overall clinical situation”.
The statement added that the 53-year-old Italian had recently undergone craniofacial reconstruction after suffering serious head injuries when he lost control of his handbike during a road race in Tuscany and crashed into an oncoming truck on 19 June.
“A first intervention has already been successfully performed a few days ago, and a second is already planned for the next few weeks,” it said.
Zanardi had both his legs amputated after a motor racing accident in 2001 at the Lausitzring track in Germany, and has since become one of the best-known figures in Paralympic sports.
He raced for Jordan, Minardi and Lotus in F1 in the early 1990s before switching to the CART championship in the United States where he was series champion in 1997 and 1998.
He returned to F1 with Williams in 1999 before heading back to CART.
Zanardi won two gold medals at the 2012 London Paralympic Games and four years later won two more in Rio de Janeiro.
Hospital patients in one area of Wales have been “absolutely loving” clear face masks which allow greater visibility of the face, according to a doctor.
Staff at Betsi Cadwaladr health board in north Wales have been taking part in a trial of the plastic face masks.
The equipment is made of a clear plastic sitting across the face, with foam pads across the nose and chin.
Dr Sarah Bent, principal clinical scientist at the health board, said they had been very popular with patients.
Audiologists say they allow patients with hearing difficulties to once again rely on lip reading to communicate.
Reader Hazel Simmons posted this lovely tribute on Facebook:
RIP Sir Harry Evans,every Thalidomider in the UK owes you a great debt, I doubt very much we would have got anywhere with our fight for justice without you, you stuck your neck on the line for us. You also got to know a few of us personally. Thank you for all you did. You will be very much missed when we celebrate the Thalidomide Society’s 60th Birthday xx For those that don’t know what this great man did for us:
More than two million students are starting a new term at university, all under new ways of learning – with socially distanced socialising and living with people they weren’t sharing with during lockdown. As part of Radio 1 Newsbeat’s university coverage, Aberystwyth student Lacey Small writes about her worries for those with attention deficit hyperactivity disorder (ADHD).
University is going to be very different this year.
At the moment everyone seems to be talking about how sorry they feel for freshers, but no one is talking about how current students are going to struggle too.
One thing that has been on my mind for the past few months is online learning because I know I’m going to struggle.
In 2018 I started my undergraduate degree studying film. My first year I excelled in all of my practical modules but never did quite as well with my theory ones.
“What’s wrong with me….stupid idiot….why can’t you just sit still and concentrate?” These thoughts ran through my mind on a daily basis.
It was in my second year that I had finally had enough.
Me and my friends were on a night out, we arrived outside one of the local clubs and suddenly I lost all the energy I had, I did not want to go in. After half an hour of being inside I was ready to go home but everyone wanted to stay. I couldn’t hear myself think, it was too loud, people were everywhere bashing into each other. I just started to cry.
The following morning, I decided to google everything I had been struggling with.
ADHD. Four big bold letters across my screen.
My doctor agrees I have it but I’m still on a waiting list for a special test.
Finally having a name for what I have been struggling with all my life was the biggest relief I have ever felt. Since discovering I have ADHD, it has allowed me to figure out easier ways for me to study and learn while finishing my degree.
Face-to-face learning is where I feel the most comfortable. I can ask as many questions as I need, I can also ask for help when I’m struggling to understand something and I’m surrounded by my other peers. I am petrified to start university again because face-to-face learning is mostly gone and I have to adjust to a new way of learning.
My best friend Willow also thinks they have ADHD. Over quarantine they confided in me the fears they have for this upcoming year. “Am I going to fail my degree because of online learning?”
We laughed together when they said this but deep down we were both petrified.
Like me, Willow struggles focusing on a task and part of that is time management.
Another friend of mine, Marcella, has autism. She is terrified of these new changes to the way we learn. She’s feeling overwhelmed and says big changes to her routine are a lot to process. It’s very daunting for her as this is something none of us could prepare for.
One of her main concerns is having to adjust to this new style of learning quickly enough so her assignments don’t get affected.
Most students with neurological conditions up and down the country are probably panicking right now.
Panicking about the thought of online learning and if they will get extra help when needed. It is a very scary time for us, all we want is to finish our degrees and not fail because of new changes.
I was so excited to go into my final year at university, I was looking forward to seeing my uni friends for the last time before we all split off into the real world, but now I don’t know what I’m looking forward to.
My final year is now filled with so much uncertainty and that’s terrifying.
Same Difference has been asked to publicise the following event:
Is TV somewhere you can work if you have a disability?
What is this panel session about?
The RTS Midlands Careers Fair will feature an incredible 24 hours of workshops, seminars and Q&As. From October 12 to October 15 the brightest and best talents from the TV world will give you all the best tips and tricks on how to get into the industry.
This session is entitled ‘Is TV somewhere you can work if you have a disability?’ and spoiler alert: the answer is yes! In this revealing discussion, five talented individuals from in front and behind the camera talk about the challenges they have faced and their journey to success. From the commissioning editor who oversees popular series such as Escape to the Country and Great British Menu to the man who deployed a Natural History Unit wheelchair user on a foreign shoot for the first time, this Q&A is all about saying ‘yes you can’.
When and where is it?
The Q&A panel takes place on Monday 12 October, 1.45pm, via Zoom. The session will be 45 minutes long. You can book onto it here.
Who is on the panel?
Martin Dougan – Newsround Presenter
The former captain of Glasgow’s wheelchair basketball team, Martin began his career as a presenter in 2012 after he was chosen to be a commentator for Channel 4’s Paralympics coverage. He joined BBC Newsround the following year, where he has become a firm favourite. Martin loves sport and travelling. He recently travelled to Fiji to report on climate change for a Newsround special and this will be airing later this month. He will host the panel Q&A.
Julie Shaw – BBC Commissioning Editor
Julie Shaw became part of the BBC Daytime and Early Peak commissioning team in March 2017, developing many new and established brands and overseeing their move into Peak. She has been the commissioning editor of long-running series like Great British Menu, Escape to the Country, The Sheriffs Are Coming and Fake Britain. Before joining the BBC, Julie worked as a series producer/showrunner in current affairs and daytime programming, covering both studio, outside broadcasts and pre-recorded programmes. She works to champion on and off-screen representation of under-represented groups.
Jay Francis – Freelance Online Editor
Jay started in television in Birmingham in 2001. Over the past16 years he worked his way up from an assistant, working for various production companies in the city, including Maverick Television, North One Television and the BBC. He became an Online Editor in 2014 and went freelance in 2016. Since then he has worked on popular shows like Snackmasters, Great British Menu and Michael Portillo’s Great Railway Journeys. He is currently working on Escape to the Country at Boundless West in High Wycombe.
Corie Brown – Channel 4 Continuity Announcer
Corie began her broadcasting career in local radio, moving to the BBC as a Continuity Announcer in 1998. She joined Channel 4 in 2001 and over time has become an ardent champion for change around Inclusion and Diversity. Corie is a founding member and co-Chair of 4Purple, Channel 4’s disability ERG and is named on the Powerlist 100 2019 as one of the most influential disabled people in the UK.
Doug Mackay-Hope, NHU Executive Producer
In his role at BBC Studios Natural History Unit, Doug looks after shows as diverse as Looking for a Unicorn, Endangered with Ellen DeGeneres (Discovery Network), Secrets of Skin (BBC 4) and the 10 part series Animal Impossible. He is the former head of the NHU’s development department, creating numerous high-profile series including the BAFTA winning Big Blue Live, Attenborough and the Giant Dinosaur and helping develop the multi award-winning Blue Planet II and Seven Worlds, One Planet. He recently deployed the NHU’s
How can I find out more about the RTS Midlands TV Careers Fair?
To find out more about the RTS Midlands Careers Fair click here.
To find out more about this panel session contact Jack Pitts on jack.pitts@bbc.co.uk or 07834 845545.
Those of you who knew James Partridge, the disability campaigner for people with facial disfigurements, may be interested in this letter from his friend John Morrison, which was sent to the Guardian in tribute to him.
On setting up the London-based charity Acid Survivors Trust International (ASTI), which supports organisations in countries where there are acid attacks, I turned to James Partridge for advice. I needed guidance with developing support systems for women and children who had been attacked with acid, and so had severe facial injuries.
James gave generously of his time on the kind of help they needed, and subsequently became our treasurer. There are hundreds of women and children around the world who now lead improved lives thanks to his work.
A former army paramedic – who was paralysed from the chest down after being hit by a car – will attempt a solo swim across the English Channel.
Nerys Pearce, 38, says she ended up “18 stone and bedbound” after the accident in 2008. But after rediscovering a love of sport, she went on to compete in multiple events at the Invictus Games in 2016 and Commonwealth Games in 2018.
If weather conditions allow, she will attempt the 21-mile crossing from Dover to Calais using only her arms, starting in the early hours of Tuesday, 22 September.
Disability Wales and Leonard Cheshire Cymru called on employers and the Welsh Government to help disabled people work from home in future.
More flexible working could open up thousands of new jobs for disabled people, they believe.
Home working was widely adopted during lockdown.
Because of problems commuting or accessing public transport, the charities believe it would help many people into work.
Currently, 48.6% of disabled people are employed in Wales, with the unemployment rate for disabled people (8.9%) twice that of able-bodied people (3.4%), according to figures from the charities.
“It shouldn’t have taken a pandemic to show some of the positive opportunities for employers to allow and enable remote and flexible working,” said Rhian Stangroom-Teel from disability charity Leonard Cheshire Cymru.
“We need to make sure that doesn’t go backwards.”
Joshua Reeves from Cardiff, who has cerebral palsy, was forced to adapt his way of working when lockdown was introduced.
His job as a campaign support officer involves arranging focus groups for disabled people and, before March, he would travel 40 miles to Swansea on public transport to run these.
Now most of the groups have moved online, which participants have found easier to access.
“It’s been an eye-opening experience,” he said.
“We’ve seen a lot of disabled people who couldn’t access focus groups or events in the past because they didn’t have carers to take them to those places.
“So, letting them have an option on Zoom or Microsoft Teams has been very helpful.”
The Equality Act 2010 requires employers to make reasonable adjustment to ensure disabled employees are not disadvantaged in the workplace.
But a survey by Wales Trade Union Congress in 2018 found 28% of disabled people in the country thought their boss found their disability a problem, and 57% felt disabled people were not treated equally in the workplace.
Many disabled people also believe they have been turned down for jobs because companies fear the costs of accommodating their disability, it found.
Campaigners are now pressing for more government support to help more disabled people work from home.
“Disabled people as well as older people are still disadvantaged when it comes to communicating online,” said Miranda Evans from Disability Wales.
“What we need now is a focused, concerted effort to up-skill disabled people and support them to purchase equipment.”
Employment champions
The Welsh Government said more than 10,000 disabled people have received employability mentoring support, and it has funded a £3m scheme in lockdown to make 600 laptops available through local authorities.
It is also planning to employ a network of disabled people employment champions to work with businesses to improve access and opportunities.
Wales Equalities Minster Jane Hutt said: “It’s a pan-Wales scheme and they are going to help people into work and also respond to the additional barriers that have arisen as a result of the Covid-19 pandemic.”
Details of the scheme are due to be released on the Welsh Government’s Skills Gateway website soon.
Many people who had just had a stroke found it harder to obtain clot-busting drugs or undergo surgery to remove a blood clot from their brain, both of which need to happen quickly.
Rehabilitation services, which are vital to help reduce the impact of a stroke, also stopped working normally as the NHS focused on Covid, the Stroke Association said. It is concerned “many could lose out on the opportunity to make their best possible recovery”.
Juliet Bouverie, the charity’s chief executive, said: “Strokes didn’t stop because of the pandemic. Despite the tireless efforts of frontline clinicians who have gone to herculean efforts to maintain services under extremely difficult conditions, some treatments still became unavailable and most stroke aftercare ground to a halt. This means more stroke survivors are now living with avoidable, unnecessary disability.”
Fear of Covid also played a key role. Three in 10 (29%) of those who had suffered a stroke did not seek emergency help, for example by dialling 999. Similarly, while half of stroke survivors had sessions of therapy cancelled, 56% did not feel safe to attend a scheduled appointment.
“We were worried [during the pandemic] about the reduction in the number of people presenting to hospital with mini stroke and stroke. Covid-19 also affected the treatment and rehabilitation available and the speed with which they could be delivered,” said Prof Rustam Al-Shahi Salman, the president of the British Association of Stroke Physicians.
Four in five specialists said stroke care had been affected by the widespread NHS suspension of many forms of care while hospitals coped with the first wave of Covid patients.
Lack of rehabilitation, especially physiotherapy, could increase demand for care for years, as well as the risk of patients suffering another stroke, further disability or death, Bouverie added.
Stroke doctors are worried the number of people admitted to hospital after a stroke fell by 13% in April, the first full month of the lockdown, and that 52% more people than usual died of a stroke at home during the pandemic.
An NHS spokesperson said care had been available in the spring and anyone who needed help after a stroke should seek immediate help.
“Hospitals have been open for all major conditions, including stroke, throughout the pandemic and the NHS has been working with the Stroke Association to adopt new ways of working so that everyone who has had a stroke can get the support they need, including a new service for follow-up care, which has already helped hundreds of people.”
The open letter, addressed to Prime Minister Boris Johnson, points to “a looming recession and disabled people at the sharp end of poverty,” and asks the government to “take urgent action.”
With its survey showing 59% of disabled people felt forgotten by the government during the pandemic, the charity says the effect “is taking its toll.”
It says disabled people and their families have “disproportionately faced loneliness and worsening mental health.”
“Shielding may be pausing, but for millions of disabled people there is no pause button on their anxieties,” the letter says.
Difficulties social distancing
Steven Morris, who is blind and has a hearing impairment, is concerned about how he will return to work as a charity policy and campaigns officer.
He needs “a lot of support when outside my home” so is particularly worried commuting.
He explains: “I need guiding to be able to get on and off trains.
“While I know that staff are supposed to assist with this, with appropriate precautions in place, I have heard a number of accounts of staff not being aware of this and refusing to assist due to the requirements of social distancing,” he says.
He is worried about other passengers too, pointing to “attitudes I may encounter from other members of the public if I were to inadvertently enter their space.”
Because he cannot see, he relies on other people to keep their distance, and worries that if this does not happen he will risk his health as well as his colleagues’.
He says he is unlikely to go back to the office until social distancing rules are relaxed.
“I don’t feel that the government is taking my concerns as a disabled person into account at all,” Steven says.
“I’m concerned that the push to get people back into their workplace could have a negative impact on disabled people.”
National Disability Strategy
The letter calls for disabled people to be included in “every plan and change in regulations around the easing of lockdown from the start,” and for the government to “prioritise the vital National Disability Strategy,” ensuring “it provides a clear plan to mitigate existing inequalities the pandemic has further magnified.”
In the last Queen’s Speech, the government committed to publishing the strategy – which aims to improve disabled people’s access to opportunities.
Scope’s letter highlight’s the prime minister commitment at the beginning of 2020 for government departments to act on the inequalities faced by disabled people.
“It is vital now that government delivers on this ambition,” it says.
“Economic recovery is key, and disabled people must be included in this,” it says, including measures to help them back into work.
“The commitment to tackle the disability employment gap set out in the Conservative manifesto must be upheld” it says.
It stresses that not everyone who was previously employed will be able to work in the circumstances of the pandemic and urges the government to “guarantee a safety net which supports rather than punishes” disabled people who are unemployed.
“Before coronavirus, life for disabled people and their families was tough. The government’s recovery plan has forgotten about disabled people, and risks making their lives even tougher.
“An equal society shouldn’t treat millions of disabled people as an afterthought,” the letter says.
A Work and Pensions department spokesman said the government was committed to supporting disabled people on safely returning to work and ensuring they “have a say in determining our forthcoming national strategy”.
“Huge efforts have been undertaken by employers to make workplaces COVID-secure and we want to see employers and employees discussing their working arrangement to ensure individual needs are taken into account,” he said.
“We are publishing advice and guidance for disabled people, making £3.7 billion available to local authorities to help address pressures on local services including adult social care, and pledging £750 million to ensure charities can continue their vital work.”
Fears of another DWP mess are growing as Benefits and Work members tell us that they have not received a PIP review form or a further extension of their PIP award.
The claimants are all within six months of the end of their PIP award and would normally expect to have received an AR1 review form.
One member, posting on the forum, told us that their PIP was due to end in January but they had not received a review form.
On the moderator’s advice they contacted the DWP and were told that if they had not done so their PIP would have stopped in January, as there was nothing on the system to say a review form should be sent out.
Another member in the same position also rang the DWP. Within a week they had received a review form which needed to be returned within a month.
One member whose claim is due to stop at the end of January phoned to ask when they could expect a review form.
The advisor told them it was a good job they had called because they seemed to have been overlooked. They said that a form would be sent out in the next few days.
Yet another member in the same position was asked to wait a few more weeks to see if the form was sent out, but when they objected that this would give them less time to return it and have a decision made, the DWP agreed to send the review form out.
In some cases, even when our member has called and been told that form will now be sent out, they are still waiting for it to arrive.
It may be that the DWP will make further extensions of PIP awards in the coming weeks and months. But there is concern that there is a growing element of chaos in the department.
Anyone who is within six months of their award ending and who wishes to be sent a review form should consider contacting the DWP to ask for one to be sent out and keep a record of the time and date of the call.
We would be interested to her from anyone else who has not received an expected PIP form.
The DWP has mistakenly been sending out letters to PIP claimants telling them their PIP has been stopped because they failed to return a review form, the Disability News Service (DNS) is reporting.
Back in March, when the pandemic first began, many PIP claimants were told that they did not need to return their PIP review form and that their claims would be automatically extended.
However, it appears that last month an official at the DWP did a check for late return of forms and sent out letters to an unknown number of claimants telling them that their PIP had been stopped and, in some cases, that they had to return their Motability vehicles and might have to repay some of the money they had received.
One claimant who received a letter told DNS that she had originally been told by the DWP that she did not need to return her renewal form and that her PIP would renew until September and then again until March 2021.
“I felt sick, I felt absolutely sick.
“Losing that extra money – I wouldn’t have coped. It would have sent me into a major depressive episode and potentially my self-harming and self-injuring behaviour would have peaked.
“I would lose my car, I would lose my independence.
“They cannot be trusted with anything. They really and truly cannot.”
The DWP is refusing to answer questions about how many claimants have wrongly been told that they failed to return a review form.
The British Fashion Council (BFC) today announces its Diversity & Inclusion Steering Committee, an essential part of its long-term plan to fight prejudice and discrimination and galvanise the industry into action. The Committee is made up of industry and BFC representatives and its role will be to address key challenges facing minority communities in gaining fair representation within the fashion industry.
The Committee’s priorities will include stamping out racism and addressing the specific challenges each minority community faces within the fashion industry. The Committee will work as part of the Institute of Positive Fashion (IPF) to set the bar for accountability and best practice for all fashion businesses, and alongside the wider BFC team to address existing programmes.
Today, the Committee issues its Mission Statement ahead of London Fashion Week September2020:
“The Diversity & Inclusion Steering Committee aspires for the fashion industry to be open for all and reflect the diverse, global communities it inspires and serves.
The Committee aims to reach this ambition by bringing together leaders in business, culture and education to create a framework which will build better, broader engagement and access for all under-represented groups; creating more opportunities and driving greater diversity throughout the industry.
Its ambition is to create true equity, increase diversity and inclusion and provide a platform to role models who will inspire future generations.
In year one, the Diversity & Inclusion Steering Group commits to:
Create a D&I framework fashion businesses of all sizes can implement to reach global leading standards: The BFC will support businesses through providing practical advice and toolkits to ensure organisations can create change and measure their successes.
Ensure development programmes are fair and equitable for all: The BFC will review all its current programmes, from scholarships to Fashion Weeks. In addition, the Council will look at Talent ID programmes and networks to ensure that diverse perspectives and voices are heard during selection processes.
Create inclusive cultures: The need for inclusive representation has never been higher. The BFC will challenge and address racism, prejudice and biases and will promote allyship by providing toolkits that will support both businesses and individuals. The BFC will also address barriers to entry and career progression for underrepresented groups and, specifically, support the development of resources to recognise the influence of black culture on the fashion industry.”
From June 2020, the BFC has taken a series of actions to fight prejudice and discriminations that include:
The appointment of three new Non-Executive Directors to its Executive Board: Jamie Gill, Chief Executive Roksanda; June Sarpong OBE, Director of Creative Diversity BBC; Scott Morrison, Founder The Boom!
The diversity monitoring of initiatives and business support programmes
Hosting fortnightly calls with the Black, Asian and Minority Ethnic fashion community while developing its Diversity & Inclusion Steering Committee. The calls allowed participants to address challenges and start working on solutions and next steps for the industry. More than 200 industry professionals were invited to join the calls.
The creation of a Diversity & Inclusion Internal Working Group whose role is to make sure it moves the D&I agenda forward internally with a yearlong strategy.
A group of head teachers have said they have no confidence in Birmingham’s school transport service for children with special needs.
They wrote to the city council after some pupils were not picked up from home and others dropped off at the wrong school.
A petition has been signed by more than 280 people demanding answers.
Kate Booth, cabinet member for children’s wellbeing, “wholeheartedly and unreservedly” apologised.
Denise Fountain, chair of the Birmingham Special Schools Head Teacher Association, told the Local Democracy Reporting Service transport for many children had been “complete chaos” at the start of this academic year.
She said some schools had themselves picked up children who had been missed and head teachers simply had “no confidence” in those organisations managing the system.
Parent Mary Riddell, from Great Barr, said the bus did not turn up on her 11-year-old daughter’s first day of term and she received “zero communication” about it.
Mother-of-twins Charlotte Bull, from Rednal, who set up the petition, said she was “absolutely sick” of the “sub-standard provision”.
The city council said at the start of term a “very small number of pupils were transported to the wrong school by home-to-school transport providers” and an investigation would take place.
‘Exceptional let down’
A spokesman for the council said home-to-school transport had run “smoothly” for the vast majority, but was aware there had been “some issues”.
Councillor Kath Scott, chair of the overview and scrutiny committee that oversees Special Educational Needs and Disability transport, said it was an “exceptional let down”.
“Children cannot get to school and are missing their legal right to an education,” she said.
“We need to take this way more seriously, and take action more swiftly.”
Ms Booth said: “I really do not underestimate the emotional turmoil this failure in service has created, and can only apologise on behalf of the service, and say we are acting as quickly as possible to resolve the issues.”
Germany has announced plans to take more than 1,500 migrants following the fire at a detention centre on the Greek Island of Lesbos which left thousands without refuge.
The tragedy was a reminder of the scale of a crisis which has seen vast movements of people fleeing war and poverty.
Five years ago at the height of the migrant crisis the BBC’s Fergal Keane reported the extraordinary story of Nujeen Mustafa, a Syrian refugee, who crossed Europe in a wheelchair.
Five years on, Fergal has met up with Nujeen to hear how her life has changed.
Action on Hearing Loss, the UK’s leading charity for those affected by deafness or hearing loss, has teamed up with Debenhams during National Lip Reading Week (14th-21st September) to highlight the need for retailers and the general public to be more deaf aware.
The charity has placed facemasks on mannequins in Debenhams’ flagship store windows on Oxford Street alongside ‘live’ mannequins. The facemasks carry the slogan “Read my lips…#bedeafaware” tohighlight the communication barriers of face coverings for anyone who relies on lipreading. The mask aims to encourage the public to be aware of face covering exemptions and to raise awareness of how to communicate with people who have hearing loss or deafness.
With face coverings now mandatory in all shops, they are having a huge impact on the deaf, hearing loss and tinnitus communities who rely on lip reading. Action on Hearing Loss is concerned that face covers are a communication barrier for 12 million people in the UK who are deaf or have hearing loss, resulting in many feeling even more isolated and scared at an already difficult time. To help tackle this new issue, the charity has designed some communication tips¹ to help communicate better with those that need it and have teamed up with high street retailer Debenhams to help promote these.
Many people who are deaf or have hearing loss rely heavily on visual cues for effective communication including facial expressions and lip-reading. Being able to see lip patterns and facial expressions is also vital for those who communicate through British Sign Language. Words, which sound similar but have different meanings become very difficult to distinguish. This can lead to a breakdown in communication.
Mark Atkinson, Chief Executive at Action on Hearing Loss said;
“Too often people living with deafness and hearing loss find that society isn’t deaf aware. For people with hearing loss to be able to go about their daily lives it is now even more important that everyone, especially those providing frontline services to the public, considers how they communicate with each other to be as inclusive as possible. Where facemasks are worn and lip-reading isn’t possible then people can still follow a number of simple communication tips: speaking clearly and slowly whilst using plain language, using assistive devices such as hearing loops and microphones and reducing the amount of background noise such as piped music. If this still proves difficult then people should be prepared to write information down for those with hearing loss.”
Jacqui Press, a Trustee for Action on Hearing Loss who has hearing loss herself, and is and one of the UK’s leading experts in lip reading added:
“With the use of face coverings, many people are realising how much they rely on lip-reading and are becoming aware of problems with their hearing for the first time. The general public need to be more understanding of those in society that will be struggling with masks. There are exemptions for not wearing a face covering include travelling with, or providing assistance to someone who relies on lip-reading to communicate. Today we are trying to help the public understand this and give them tips on how to make the situation better for everyone.”
A spokesperson from Debenhams said;
“The safety and comfort of all our customers and colleagues is of paramount importance. We are closely following government guidelines and encouraging all of our customers to follow them, whilst recognising there are exceptions to the requirements on face coverings. We have provided our colleagues with a face visor or mask to help keep each other safe, and we will be encouraging them to use these communication tips, to help communicate as clearly as possible and make sure we can support our customers with hearing loss.”
Samantha Baines, an award-winning comedian, actor, hearing aid wearer and Action on Hearing Loss Ambassador who took part in the event as one of the ‘live’ mannequins added;
“This isn’t just about masks, this is about changing behaviours. It’s so important that everyone understands how isolating it can be to leave your house and not be able to understand anyone. Even buying a loaf of bread becomes a huge trial. There are very simple ways to be deaf aware that can make a huge impact.”
If you are concerned about your hearing or want more information please contact us by calling 0808 808 0123 or emailing information@hearingloss.org.uk.”
When I was 18, a long period of depression led me to jump from a height in a suicide attempt. In doing so, I sustained life-changing spinal cord injuries that to this day mean I have little mobility or sensation below my waist and my bowel and bladder do not work.
Yet only a few years after that first attempt, I tried to take my life again. One of the main reasons was due to the lack of practical and psychological help I was receiving to cope with my new disability.
The mental health services assessed me using a narrow psychiatric lens noting non-compliance with psychiatric medication as the only risk. This continual failure to register my physical disability by the mental health team was matched by an inadequate response from the physical disabilities team who refused to look after me, citing the suicide attempts and my depression.
Now, aged 49, the only change in my care has been that my bipolar has been recognised as the secondary problem and my spinal cord injuries as my primary issue. Yet, for some unknown reason, I am still a patient with the mental health team rather than physical disabilities. My needs straddle both health teams but as they don’t work together, they are not getting met.
There are an estimated 50,000 people who live with a spinal cord injury in the UK, and 2,500 people sustaining an injury every year. I wanted to find out how those with a more recent injury and also a mental health condition were being treated.
Eleanor, 41, told me she too suffered severe spinal cord injuries after a suicide attempt six years ago. When she had recovered enough physically, she was moved on to a psychiatric ward for treatment for her mood disorder.
She says: “I had to be placed on a different ward on the ground floor, separate to everyone else but even then, there weren’t any disabled toilets or hoists and the staff were unwilling to help. As well as my three unstable fractures both my legs were in casts, so I had to put bin bags on them to cover them when I was trying to wash myself. Soon my legs started to smell. The staff tried to tell me I was having olfactory hallucinations, but I knew it was my feet rotting as water had leaked into the casts.”
Since coming out of hospital one of her main physical problems has been pain, but she says, because she had taken an overdose in the past, there was a flat refusal by both her GP and pain clinic to give her suitable medication: “All I was offered was mindfulness – by phone.” She says to get the pain relief she needed, she had to go privately, with the help of her parents.
Eleanor believes she has continued to face judgmental attitudes: “I had a real set-to recently with a GP about giving me medication for breakthrough pain. I’m in my 40s but my mother had to intervene and say she would take responsibility, which I find just ridiculous. They see my mental health problems but not my physical disabilities.”
Tammy, 52, who also has spinal cord injuries, feels there is not a good enough understanding by mental health services of the impact of such an injury. Following her injury in 2009, she was diagnosed with fibromyalgia. The pain connected to the spinal cord injuries has increased considerably with this diagnosis and, along with the trauma she experienced, has contributed to two serious suicide attempts.
“I don’t think they understand how debilitating it can be – especially when you have more than one condition. You might have a good day with one disability but find the other is playing up. You have so much more to contend with, just to get up and take a shower. They just don’t get it, or the emotional pain that can hit you like a bereavement.”
Tammy was offered some limited help from a psychotherapist, but what she felt she really needed was support from the pain clinic.
“My life consists of me sitting in bed, all day. I have a fear of going out that used to be due to worries about my bowel and bladder or problems with pain and fatigue, but now it’s worse than ever because I feel mentally done in.”
Like Tammy, I too became scared of going out. My spinal cord injuries isolated me at home. This then impacted on my already fragile mood, which in turn made the situation worse. The mental health team suggested an increase in my antidepressants, failing to address the complex nature of my problems.
Of course, it isn’t just those with a spinal cord injury who might have such difficulties. In England, 46% of adults with a mental illness have some form of long-term physical disability.
When so many people are affected and the links between mental health and physical disability have long been known, why have my experiences of joined-up care, and those of many others, been so patchy or completely absent?
The answer might seem clear-cut, in that care for those with physical disabilities and mental illness has been historically and, to this day, organisationally distinct. But the failure to think holistically and work in partnership with other professionals is something rarely appreciated unless you, or someone you care for, is on the receiving end, passed from service to service, in a bewildering and time-demanding process.
Liaison psychiatry teams, now present in A&E and general hospital wards in England, are supposed to provide longer-term interventions to bridge the divide between physical and mental health care. These teams could be invaluable in coordinating the various medical disciplines involved as well as those outside the hospital, such as wheelchair services and supported living initiatives.
However, Dr Allan House, the emeritus professor in liaison psychiatry at Leeds University’s School of Medicine, told me these teams are “under-resourced for the scale of the challenges they face”.
Recent investment from NHS England has led to an increase in liaison psychiatry staff. “But this is targeted at improving 24/7 acute care, rather than the management of complex long-term conditions,” House explains.
The Spinal Injuries Association (SIA) has recognised the impact of gaps in mental health services and has developed a telephone counselling service and a peer support network.
For Michael from Lancashire, who was involved in a catastrophic accident on his bicycle last year, aged 67, the peer support from Gary was invaluable.
“The fact that Gary was in a wheelchair with a very similar level of injury got all our attention from the start. His knowledge about rehab, essential skills that I would need to develop, and the challenges that we faced were everything that we needed to hear. He didn’t sugarcoat it or say it was without its challenges, but for the first time since the accident this meeting with Gary provided us with a route map to a life, a different life for sure, but a life nonetheless.”
The development of the charity’s telephone counselling service was, in part, to fill the gap in ongoing NHS psychological support for people with spinal cord injuries: “We see it as essential that everyone affected by spinal cord injuries has access to lifelong, expert counselling support when required, and it’s very concerning that wider NHS mental health services in general are under such pressure at the moment,” says a SIA spokeswoman.
She says it is also committed to raising awareness of these issues at the highest levels of government and NHS England to secure the long-term investment in ongoing psychological services that is so desperately needed.
Alex Thomson, a consultant liaison psychiatrist at Northwick Park hospital, echoes the call for improvements in long-term services but believes it shouldn’t just be left up to members of a liaison psychiatry team to bridge the gap between mental and physical illness: “All staff in acute or community settings need to have a baseline level of skill and awareness to respond supportively to those with both spinalinjuries and mental health needs, so that all health services can meet the needs of people with multiple conditions,” he says.
I believe it will be only then, when the NHS is on the path to providing high-quality services and partnerships, that those with complex disabilities will be viewed holistically, lessening the chance of someone being left behind or failed, like I was all those years ago.
Parents of children with special educational needs have told the BBC that their children are not being offered the same access to education as their peers because of the restrictions around coronavirus.
The BBC’s Nikki Fox spoke to Dawn Ashton who said she wanted a full-time education for her son Lewis who has been offered two days at Astley Park School.
Headteacher Kieran Welsh said a phased return would allow children to adapt to the new school routine.
“The positive impact of the phased return on children’s learning and well-being has been incredible and a joy to witness.”
A woman with Down’s syndrome was left “offended and upset” when she saw T-shirts sold on Amazon with the slogan “Let’s Make Down Syndrome Extinct”.
Heidi Carter, from Coventry, said when she had first found the items online she was “nearly crying my eyes out”.
Her mother Liz Crowter accused Amazon of promoting hate speech.
The company has since removed the product, which was being sold by a third party, after complaints and a petition signed by more than 25,000.
Speaking to Victoria Derbyshire on BBC News, Ms Crowter said: “I’m just disgusted anyone would want to make them or wear them.”
image copyright Change.org
She said it was “not acceptable” for such words to be used, adding: “It is hate speech against people with Down’s syndrome.”
Down’s syndrome is a genetic condition which typically affects someone’s learning and physical features.
The T-shirts – which bear a similar slogan to ones referring to coronavirus or cancer – were sold in March and then removed but have now appeared again, Ms Crowter said.
“If you look at the Amazon policy on hate speech, they talk about racial, sexual, religious intolerance and they will not promote organisations with such views, [and] they will also remove listings that graphically portray violence, all victims of violence, but there is nothing in the policy about hate speech for disability,” she said.
“So, that will continue hate speech for disability until they change their policies.”
In a statement, Amazon said: “All sellers must follow our selling guidelines and those who do not will be subject to action including potential removal of their account.”
Ex-Royal Marine, Simon Mahoney, 73, from Ashbourne, Derbyshire, has said he hopes the book – based on his culinary learning curve – entitled “First Catch Your Rabbit”, will help blind and partially-sighted people to start cooking.
The book is due to be published later this year as an e-book.
It has attracted interest from several charitable groups including the Royal National Institute of Blind People and Blind Veterans UK.
The 28-year-old also revealed that her fourth Paralympics in Toyko next summer would be her last.
“There is a big gap in the earnings of Grand Slam players and those on the ITF tour,” Whiley told BBC Radio 4.
Asked if wheelchair tennis players could earn enough money for a career, Whiley said: “Absolutely, if you are competing at the Grand Slams consistently.
“There are 20 people who are full time and making a decent living and that is where I think it needs to change so more people can do that.”
However, the Birmingham-born player said the tournament organisers at the US Open “did a really great job”.
“We have each had our own private suite with food and drink on demand,” she added. “Everything has been spotless and everyone is abiding by the rules. I cannot fault it.”
The 12-time Grand Slam winner also confirmed next summer’s Tokyo Paralympics would be her final event because of her desire “to expand our family”.
“I have done this for 20-odd years of my life and I think it’s time for a new chapter,” she said.
Today on her excellent programme, Victoria Derbyshire devoted a lot of time to coverage of the importance of visits for people living with dementia in care homes.
She spoke to Line of Duty stars Vicky McClure and Adrian Dunbar, who both count dementia as a cause close to their hearts.
The link to the programme on iPlayer will sadly only work until tomorrow, but it is well worth a watch.
In the second hour of the programme, Victoria spoke to the Morrison family. John Morrison, 37, has CP and has had great difficulty with care agencies, having the care he is entitled to stopped twice.
This part of the programme is not available to link to, but one viewer said of the story:
On #victoriaderbyshire now the shocking case of a severely disabled man who has had his funding for continuous care stopped. Twice. Between assessors, agencies and various admin pushers and a health package approved no care has been given. The mum was told to put her son
Same Difference sincerely thanks Victoria Derbyshire for her excellent coverage of both these very important issues. We particularly hope this coverage will lead to the Morrison family getting the care John deserves.
The coronavirus is spreading through care homes again, according to leaked documents that show the government is failing to protect the most vulnerable from the spiralling number of cases.
A Department of Health report marked “official sensitive” and circulated on Friday stated that the rate of the coronavirus recorded through satellite tests — almost all of which take place in care homes — had quadrupled since the start of the month. It now stands at an estimated 1,100 new cases every day.
Matt Hancock, the health secretary, took an emergency update on Wednesday saying that outbreaks had been detected in 43 care homes after months of calm.
On Friday night he wrote to care home leaders to confirm that the virus had reappeared: “The infections are mainly affecting the workforce but clearly there is a risk the virus will spread to residents or to other parts of the care sector.
“Unfortunately, in some care homes, with recent outbreaks, this does appear to have occurred, with residents also becoming infected.”
A memo sent to the health secretary’s team lists care homes in Bristol, Nottinghamshire, Wiltshire and Wolverhampton as among the worst hit.
At the start of the pandemic the decision to move hospital patients into care homes, often without testing, contributed to 20,000 Covid-related deaths.
To prevent another outbreak, the government promised weekly testing for staff and monthly tests for care home residents in July. It reached the target only last week.
The majority (52%) of Covid-19 tests carried out by care homes take more than 72 hours to be processed.
In his message to care homes, Hancock ended with a warning about the potential dangers as winter approaches: “This winter will place unique pressures on the health and care system. Covid-19 will be circulating with seasonal flu and other viruses and transmission may increase.”
On the same day, scientists at Imperial College London warned that the R infection rate had reached 1.7 — meaning that cases were doubling each week.
Last week care homes in Newcastle, Gateshead and Sunderland shut their doors to visitors because of early signs that the virus was returning.
Jon Ashworth, the shadow health secretary, said: “Failures over tracing and isolation now mean infections are rising. Failure to protect care homes early on meant many lost their lives. It would be unforgivable if the same mistakes were made again.”
A health department source said: “We have been doing everything we can to ensure care home residents and staff are protected, including testing all residents and staff; provided 200 million items of protective equipment, ring-fenced £600m to prevent infections in care homes and made a further £3.7bn available to councils to address pandemic pressures.”
Government guidance is making emergency respite care impossible
Pressures on unpaid home carers, nursing and caring for a seriously ill or disabled loved one, 24 hours a day, have become intolerable.
This is the consequence of the emergency Coronavirus Act which has allowed Local Authorities to axe their duty of care responsibilities towards the disabled and the elderly. As a result, desperate families have been stripped of valuable home and community support at a time when they need it most.
For 57 years, Revitalise has provided respite care breaks to a huge range of people. These are a vital lifeline to so many unpaid home carers and their disabled family members.
At the start of the pandemic, the Government abandoned care homes completely. Now, in trying to rectify this, they have imposed blanket 14-day isolation guidelines for anybody entering any care setting. These are indiscriminate and prohibit access to emergency respite care for people who are already desperate. In short, this guidance is flawed and failing those who need it most.
This is completely contrary to what is happening in the NHS, where inevitably, emergency treatment cannot require any isolation period whatsoever.
Revitalise CEO Jan Tregelles said:
“I have been told by countless carers that they are desperate and have nowhere to turn for help. They need emergency respite now. I am appalled that the Government guidance has continued to leave them forgotten, alone and stranded.
“You only have to listen to the outcry from holidaymakers faced with the prospect of quarantining for fourteen days on return. People will drive through the night or pay thousands for flights to avoid these restrictions, yet those who have already been isolated for six months and urgently need respite, are expected to comply. This is not two weeks of inconvenience; this is a matter of life or death.”
James Taylor, Executive Director of Strategy, Impact and Social Change at disability equality charity Scope, said:
“Disabled people and their families have been amongst the hardest hit throughout the Coronavirus pandemic and this is yet another example of how their needs have been forgotten. Respite care breaks can play an important role and help relieve some of the pressures families face.
“We know from the increase in demand that we have seen to Scope’s own family support services and helpline, that Coronavirus has had unbearable consequences on the mental health and wellbeing of disabled people and carers. The Government needs to prioritise the needs of disabled people and their families who have endured so much throughout the pandemic.”
John Turner, CEO of the Respite Association, added:
“The need for respite has never been so vital. The COVID 19 situation has been devastating for carers, adding genuine fear to the isolation that so many already felt. The Respite Association and Revitalise have been inundated with carers in some truly desperate situations, who just need a chance to catch their breath, but have no way to do that.
“Organisations like Revitalise that normally provide these services are hampered by the care home guidelines, which are wholly inappropriate for respite breaks. Thousands of desperate carers need our help now before they burn out; The Respite Association and Revitalise give them hope, which is not much to ask for given the sacrifices they make day in and day out.”
None of us know what the next 12 months will bring, but unless the current crisis faced by home carers is addressed, the future looks bleak for thousands of families.
Jan Tregelles concluded:
“Levelling-up must include everyone. With Covid-19 infections increasing across the country and the imposition of more restrictions and isolation, there needs to be a change. Don’t let the absence of respite care become a death sentence for home carers already at breaking point.
“We urge Government to shine a light on the hidden impact of COVID-19 and to look again at their public health restrictions which make essential short-term respite care breaks impossible. Exhausted home carers need our help and they need it now.”
Community captions – when users upload subtitles to other people’s videos – are being removed from the platform.
The British Deaf Association and Action on Hearing Loss say YouTube should engage with the deaf community on the decision.
YouTube says the feature is hardly used and is open to abuse or spam.
The hashtag #DontRemoveYoutubeCCs trended online this week.
How does subtitling work on YouTube?
There are three main ways YouTube videos are subtitled, or captioned.
YouTubers can subtitle their own videos with manual captions, although many don’t do this.
Automatic captions are generated by speech recognition software and can sometimes be inaccurate.
Community captions are when fans of a channel write and upload their own subtitles to a video – either in the original language of the video or in another language.
YouTube says only a tiny percentage of videos have community captions uploaded to them, which means it’s not worth continuing with the tool.
‘It wasn’t well-promoted’
Liam O’Dell, 23, is a mildly deaf journalist and campaigner who thinks community captions should stay.
He says many creators don’t even know about them.
“When you consider how well the feature was promoted, it wasn’t easy to find at all,” he tells Newsbeat.
“When I searched online on YouTube and Team YouTube’s Twitter account, they’ve never once said, ‘Hey, here’s how you can add community contributions to your platform.'”
Another reason YouTube says it’s getting rid of the feature is that it’s open to abuse or inaccuracies – as anyone can write anything.
“That’s always problematic because captions’ primary objective is to provide accessibility,” says Liam.
“It’s not there to be a humorous, tongue-in-cheek joke. That’s not what captions are for.”
But he points out that YouTube changed the rules last year so that creators can now approve the community captions that people upload to their videos.
What do the charities say?
Action on Hearing Loss says it’s seen through its social media channels that many people are concerned about the removal of community captions.
“We urge YouTube to engage directly with the deaf community to understand the benefits that community captions provided and to consider the barriers people with hearing loss face on YouTube and the best ways for them to make their platform accessible,” says Robert Geaney, head of campaigns and public affairs at Action on Hearing Loss.
The British Deaf Association says community captions are “a feature that brings together communities, to increase accessibility and awareness.
“This decision puts up further barriers for deaf people’s access to enjoy non-signed videos, since the standard of auto-generated captions are poor and should not be considered as a viable substitute.”
‘It’s not just deaf people’
“It’s been quite interesting seeing the wide range of people who have expressed concerns with this,” says Liam.
“Not just deaf people, but those learning a foreign language, those with auditory processing disorder, autism – it can benefit everyone.”
Plus, he says, automatic captions aren’t always that accurate – especially for communities that have “nuanced or specific terms to do with a subject”.
Members of the K-pop and VTube communities are also speaking out against the removal of community captions.
Bilingual K-pop fans can upload community captions so that non-Korean speakers can understand lyrics or interviews.
And many VTube (virtual Youtube) videos are in Japanese, which means community captions can be useful for their international fans.
“It feels a bit weird from a messaging point of view that getting rid of something that is a positive force in the community like this,” Liam adds.
“YouTube has always stressed the community… so when they introduced a feature called community captions, that can really be a nice way of viewers giving something back to that channel.”
Should YouTubers be better at subtitling?
YouTube is offering a free six-month subscription to a piece of captioning software after community captions disappears on 28 September.
In a video released in April, the company said it was working on new captions software which will make it easier for creators to add subtitles and to improve automatic subtitles.
Action on Hearing Loss says: “The main responsibility for accessibility should rest with the creators of the content who need to ensure that they provide accurate captions which are appropriately positioned within the screen”.
The charity makes the point that it’s not just the one in six people with hearing loss in the UK who benefit from subtitles, but increasingly many other people prefer to watch videos with subtitles too.
It adds: “There are numerous free platforms on which subtitles can be added to videos and therefore there is no reason for content creators not to make their YouTube videos accessible.”
How good are other platforms with subtitling?
“If you’re talking about the big players like Facebook, Twitter, Instagram and TikTok, I’d say they’re still pretty dire,” says Liam.
“I’ve tried to caption a video on Facebook… it is a nightmare.
“On Instagram, there’s hardly any tools available yet that the allow people to do caption their stories other than just typing in text.
“The same goes for TikTok… I know a lot of creators have talked about the frustration that has come with painstakingly adding in captions into their video.
“Across the board, a lot of the main platforms still have a long way to go in terms of accessibility.”
Dara McAnulty, a 16-year-old secondary-school student from Northern Ireland, has seen off competition from established writers to win the Wainwright prize for nature writing, for his debut Diary of a Young Naturalist.
McAnulty started his wildlife blog, Young Fermanagh Naturalist, when he was 12. He started writing Diary of a Young Naturalist at 14, documenting the year from spring equinox to spring equinox, from his 14th to 15th birthday. In it, he recounts his life as his family moves across Northern Ireland, transporting him away from his beloved local forest, changing schools and dealing with bullying. McAnulty, who is autistic along with his two siblings and his mother, seeks sanctuary in nature as he juggles school, friendships and environmental campaigning.
“I have the heart of a naturalist, the head of a would-be scientist, and bones of someone who is already wearied by the apathy and destruction wielded against the natural world. The outpourings on these pages express my connection to wildlife, try to explain the way I see the world, and describe how we weather the storms as a family,” he writes.
Ahead of his win on Thursday evening, McAnulty said he was very surprised by the news. “I just feel disbelief because there were so many amazing books on the shortlist. It was really quite humbling because this is my first book I have ever written. Knowing my voice can be heard, as a young, autistic person, has delighted me,” he said.
Chair of judges Julia Bradbury said the panel was unanimous in selecting Diary of a Young Naturalist, and called for it to be added to the national curriculum, “such is the book’s power to move and the urgency of the situation we face”.
“This book would be good if it was written by anyone of any age,” she said. “Dara’s writing is beautiful. He’s remarkably astute and candid. We felt it was a very important book to win because it will reach young people and that is vital. So we gave it to him both because of and regardless of his age – it is beautifully written, and by the way, he’s 16. He’s obviously going to be extraordinary whatever he decides to do.”
Due to McAnulty’s age and autism, the judges were concerned that the win “might turn the spotlight on him too much”, Bradbury said, so the prize organisers approached the McAnulty family and offered him the opportunity to decline the win if he felt daunted by the pressure.
“We wanted to make sure we could take care of him, especially in this day and age with social media. You could mention Dara in the same breath as Greta Thunberg, and look at the stick she’s received. We did wonder if we were doing the right thing,” said Bradbury. “But his family are involved, his publishers care about him deeply. He’s not going to be lost to the media wolves. He’s a smart young man.”
Adrian and Gracie Cooper, the husband and wife team behind McAnulty’s publisher Little Toller, a small independent based in Dorset, called him “an inspiration for us all”.
“We’re elated for Dara, for his family, and for ourselves. This is the first award Little Toller have won since we started publishing 12 years ago, and we’re grown used to not getting prizes or reviews. So I hope this prize will urge other small presses to keep doing what they do, overcoming adversity to nurture writers, challenge stereotypes, stretch boundaries and keep finding inventive and passionate ways to connect writers with readers,” they said.
McAnulty, who is currently writing a children’s book, said he wanted to donate the £2,500 prize money to his school’s environmental group, Roots and Shoots at Shimna Integrated College.
“While I was writing, it held me together for a long period of time, giving me human contact. So I want to give something back to them, because they have shaped parts of who I am. I could write the book because of them,” he said.
Named after nature writer Alfred Wainwright, the prize is traditionally worth £5,000 to the winner and has been won by the likes of Robert Macfarlane and Amy Liptrot. However, this year McAnulty will split the prize with Benedict Macdonald, who has won the inaugural prize for books on global conservation and climate change, for his “visionary” book Rebirding, a manifesto for restoring Britain’s wildlife.
He’s made a speech too:
I’m an autistic teenager. I’m not polished. I don’t rehearse (sometimes I wish I did!). I’m raw and real and very very imperfect. But look what can happen, to an ordinary boy who had a story to tell, in all its rage and love. I forgot to say here – but THANK YOU TO MY FAMILY 🙌🙌 pic.twitter.com/IGCS1TCnAl
Holly Girven, from Gainsborough in Lincolnshire, applied to be a paralegal for BT in Sheffield but claimed the interview was pulled when she asked about wheelchair access.
Ms Girven, 23, said she was glad to have been given the same chances as other people.
BT has said it was “conducting a full investigation”.
Ms Girven has been in a wheelchair all her life and applied for the paralegal job through a specialist legal recruitment agency as a first step towards a career as a barrister.
She said she “just wanted a level playing field” adding it was the first time in her life she had come up against
something like that from such a big company.
“I don’t apply for certain jobs like waitressing because I know I couldn’t do it,” Ms Girven said.
When Ms Girven initially applied online she said there was no option to state she needed a wheelchair.
‘Unacceptable’
But at the next stage of application she said the interview was suddenly cancelled “because I was told there was no wheelchair access at that office”.
She has since been interviewed and is due to start the job soon, but has not yet signed a contract because BT is considering options for her to work from home or from an office with better access.
Ms Girven said she was “so pleased”.
“Hopefully it’ll stop other employers from doing that same thing,” she said. “It’s unacceptable.”
He was experiencing a crisis because it was her first day back at work in almost a year and “he has bad separation anxiety”, she said.
“I said, he’s unarmed, he doesn’t have anything, he just gets mad and he starts yelling and screaming,” Ms Barton said. “He’s a kid, he’s trying to get attention, he doesn’t know how to regulate.”
At a press conference, Sgt Horrocks said officers were called to a “violent psych issue” and reports that a boy – who they did not name – had made “threats to some folks with a weapon”. He added that there was no indication when they attended that the boy was armed.
An officer shot the boy when he tried to flee on foot, Sgt Horrocks said.
According to an online fundraiser set up to raise money for medical bills, Linden Cameron has suffered “injuries to his shoulder, both ankles, intestines and bladder”.
“The long-term effects of his injuries are still unknown, but it is likely that his recovery will be long and require multiple kinds of treatment,” the page, set up by a friend of the family, says.
According to data compiled and regularly updated by the Washington Post, 1,254 people with a mental illness have been shot dead by US police since the beginning of 2015. This represents 22% of all people shot and killed by police across the country over that period.
Grammar schools in England will have to ensure their 11-plus entrance exams are accessible to disabled pupils, after a legal ruling found a visually impaired child suffered discrimination when he was refused the opportunity to take the exam.
The boy had applied for entry to Reading School, an academy with grammar school status in Berkshire. But he was unable to sit the 11-plus because adjustments needed for him to take the exam, including the use of larger type on the exam questions, were not carried out.
The boy’s case was backed by the Royal National Institute of Blind People (RNIB), which said it had been concerned about the accessibility of selective school exams “for a number of years”.
After a referral from the RNIB, the Equalities and Human Rights Commission (EHRC) supported a legal challenge at the government’s tribunal on special educational needs and disabilities. The tribunal ruled that Reading School was responsible for ensuring access to the exam by disabled applicants.
The boy – who cannot be named – subsequently received a place at another grammar school that waived the requirement for him to sit the 11-plus.
“It is completely unacceptable that, at a crucial and formative time in a child’s educational life, they should experience discrimination in a way that could damage their confidence and be denied the opportunity of a better future,” Rebecca Hilsenrath, the EHRC’s chief executive, said.
“Every child has the right to achieve their full potential. Grammar school education needs to be available to all children and that means grammar schools making reasonable adjustments for entry exams in accordance with the law.
“The Disability Discrimination Act is 25 years old and the Equality Act over a decade. It is the law that disabled children are entitled to equal access to education, and in 2020 we shouldn’t have to be reminding schools of their responsibility to make exams inclusive.”
The boy’s mother said: “As someone who grew up with a severe vision impairment myself, I benefited from a supportive learning environment, and that’s all I want for my children.
“When my son heard he was unable to sit the exam he was upset and in tears, particularly as he had worked hard to prepare for them.”
The EHRC said it is writing to all grammar schools and other selective schools to outline their legal duty not to discriminate against disabled children.
Caireen Sutherland, the RNIB’s principal education officer, said: “We have been concerned about the accessibility of 11-plus tests for children with vision impairment for a number of years. Every year we receive inquiries from parents and professionals regarding the process of testing for grammar schools and how to ensure the tests are accessible.”
Sutherland said the RNIB would work with schools and 11-plus providers to ensure adapted exams were available for children with sight issues, and that parents could contact the RNIB if they had concerns.
The boy’s mother said: “We’re grateful for the support we’ve received, but challenging a process that is both arduous and unequal for children with special educational needs is inherently unfair and the whole experience has left us fatigued and disappointed.
“Fortunately, my son started at grammar school last week and is settling in brilliantly. It’s now our hope that other grammar schools ensure their entry exams are accessible to all children and that other parents of disabled children don’t experience the frustration and barriers that we did.”
Reading School and the National Grammar Schools Association were contacted for comment.
“Often disability/impairment or disorders are not regularly discussed within all family units,” says Hannah Ward, “and I think sometimes this is just simply because it is not directly present or affecting that family. Families may not know how to discuss topics around disability/impairment or disorder. But this is where I want to start encouraging and opening up regular and informative conversations within families and I believe my books can help make the unknown, known.”
In Clicket Cricket Joins a Band, there isn’t anything Clicket Cricket wants more than to share his love of music. But he is too shy to do anything about it because he has a stammer that makes him very nervous to speak in front of people – let alone sing! But with his friends’ help, his dream could finally be in reach – if only he has the courage to get up on stage!
In Perm Worm and A Different Day, we meet Perm Worm who struggles with everyday life. You see, Perm Worm has autism which is something that just makes it a little harder for him to cope when anything changes in his day to day life. One day, Perm Worm has a very hard day and he struggles to find a way to show it. Luckily, with the support of his family, there may be a way forward. It just takes a big amount of courage from a small worm.
“My inspiration behind writing these books are both the children I have worked and working with as a paediatric occupational therapist but also my own wonderful children,” Hannah explains. “I absolutely love working with the amazing, inspirational children and families in my care and I am in constant awe of them.”
As a disabled writer, it has been a little strange to watch publishers rush to put on online events during the pandemic. Authors have been understandably worried about the impact of Covid-19 on sales and their relationship with their readers – book signings are pretty tricky over Zoom – but this sort of adaptation isn’t novel for all of us. When I released my book, Crippled, last year, my chronic illness meant I couldn’t do a traditional in-person book tour. Instead, I did several online events with book groups with audiences from Belfast to London, all from my living room. Everyone I worked with was kind and problem-solving, but I was very aware I was doing something rare. At times, I felt like the only disabled author out there.
Diversity in publishing has thank goodness been on the agenda of late, but there’s been very little mention of disability. Disabled people are the biggest minority in the world – one in five will have a disability, mental health condition or chronic illness in their lifetime – but the publishing industry is still disappointingly unrepresentative of us. A 2019 Publishers Association survey found only 6.6% of the workforce identified as having a disability, and there aren’t any available statistics on disabled authors. Another 2019 study found that only 3.4% of children’s books published last year had a disabled main character.
Disability, particularly in fiction, is often written about by non-disabled authors, a fact that sometimes sees damaging tropes perpetuated. Think of classics such as Treasure Island, where disability is a sign of evil; or modern bestsellers such as Jojo Moyes’ Me Before You, in which death is a positive alternative to life in a wheelchair. Disabled authors, meanwhile, find themselves trapped in a kind of catch-22: like many minorities, we are often expected to only write about our identity, then dismissed as niche if we do. When I wrote Crippled, I actively tried to include disabled voices – the book covers austerity and in the new edition, coronavirus, partly through the experiences of a dozen disabled people – because it is so rare for them to be listened to. It has been well-received, but I’ve still found myself having to argue that disability is a mainstream political issue, and that my book belongs alongside commercial political books, those typically written by non-disabled authors.
This isn’t to say that there aren’t incredible authors with physical and mental health problems making strides in the industry: Alice Wong’s Disability Visibility, Bryony Gordon’s Glorious Rock Bottom, Rebekah Taussig’s Sitting Pretty and Sinéad Burke’s forthcoming Break the Mould. But we should think about why disabled authors are still largely in the margins, and what we can do to address that.
In recent weeks, authors took to Twitter to share how much they were paid to write their books with the hashtag #publishingpaidme, and in doing so exposed the racial disparities in advances paid to black authors by big publishers. This sort of transparency would also be useful for disabled authors, especially black disabled writers, who are dealing with two inequalities compared to their white peers. On top of money, we must also inspect the subject matter disabled people are being permitted to cover. Books on disability need to be given more mainstream credit, but progress also comes when disabled authors are welcomed to write about relationships, politics or crime, just like any other author.
And if we want more disabled writers out there, we need to look at the rest of the industry. Publishing professionals – agents, editors, critics – shape how readers view disability, as well as whether disabled talent is either elevated or ignored. Helping get more disabled people in these positions of power will take a cultural shift, but there are also simple practical measures that will help – from ensuring internships at publishers are paid, offering remote or flexible working, to putting out job ads that explicitly ask for disabled applicants.
Disabled authors not only need the publishing industry to improve, but the industries around them – including the media, which decides how these books will be presented to their audiences. In one television interview about my book, I’ve been asked by a producer if I would be filmed “doing things around my house in my wheelchair” – something I doubt a non-disabled author would be asked. (I said no.) The more frequently disabled writers are given a platform, the less likely it is their disability will be fetishised.
All of this is the right thing to do, but it is not charity or compassion – it’s simply good business. Disabled authors will have different experiences to their non-disabled colleagues, and their inclusion will create richer storytelling. And there is so much disabled talent that is untapped, and waiting.
When Derek Burt’s mother was diagnosed with a terminal illness six weeks ago, she asked for one more trip – a holiday with her family.
“MND is such an evil and unpredictable disease,” Mr Burt says.
“We have no idea if she will be able to go on a family holiday with us when all the Covid craziness is over, so had to make the tough decision and deliver on one of her wishes now.”
With trips to Florida and Croatia already cancelled, they settled on Portugal when quarantine restrictions were lifted two weeks ago.
But now the family from Dunfermline in Fife is having to race to get home from the Algarve to beat the new restrictions that come into force at 04:00 on Saturday in Scotland.
Their original flight is due to land seven hours later.
Mr Burt says the family researched different holidays and tried to follow the guidance available, but “nobody has a clue what the governments are thinking”.
“We cancelled Florida as her condition deteriorated as she wouldn’t be able to get around,” he says.
“We then decided on Croatia. One week after booking, time to cancel Croatia one week before we were due to fly as it was withdrawn from the travel corridor.”
Although the virus rates seemed on the high-side in Portugal, he “assumed the government knew what they were doing” and would not return the country to the quarantine list. So the family travelled to the Algarve.
“How stupid was I to show any faith in our countries’ decision-makers?” he says.
Scotland’s new quarantine rules come into force at 04:00 on Saturday and include French Polynesia as well as Portugal. Quarantine has already been reintroduced for arrivals from Greece.
In Wales, those travelling from Portugal and six Greek islands have to self-isolate.
Portugal, Greece and French Polynesia are still on England and Northern Ireland’s lists of travel corridors.
Mr Burt says he is “incredibly frustrated” by the decision of the Scottish and Welsh governments to impose quarantine rules, describing it as a “complete shambles”.
But he says they have had an amazing week, and his mother was able to fulfil her wish to watch her grandchildren playing in the pool of their villa.
Benefits and Work is asking people who have successfully claimed PIP for arthritis to share their experience with others and perhaps changes many lives for the better.
We suspect that this may in part be because the advice workers, housing workers and social workers, who would often be the first to alert people that they may be eligible for PIP, are now more difficult to access.
The result is that thousands of people every month are missing out on a life-changing benefit that they are entitled to.
We would like to try to reach some of those people by providing free webinars and downloadable information to encourage people to make a claim.
We’re starting with arthritis because it is a very common condition that gives rise to an award of PIP.
But we really want to include experiences and encouragement from people who have successfully made a claim for PIP because of the effects of arthritis.
We know that hearing from someone who has the same condition and who has managed to get an award of PIP is a powerful incentive for people to make a claim themselves. Knowing that a claim is not hopeless and that an award has made a real difference to someone in a similar position can really help
So, if you have 5 minutes to spare, please complete our questionnaire – a maximum of 9 questions in total, depending on your circumstances – and you may help to change someone’s life for the better. Your replies may be included in our materials, but they will be completely anonymous.
Once we’ve covered arthritis, we intend to add resources on other physical and mental health conditions.
If you know someone else who might be able to help, or you post on a forum that supports people with arthritis, please share this article with them.
It will be possible to claim PIP online by the end of the year, a government minister has revealed.
Justin Tomlinson, minister for disabled people, gave a written answer on 3 September in response to a question asking whether the DWP would “permit personal independence payments assessment forms to be completed online during the covid-19 outbreak.”
Tomlinson stated:
“We are focused on transforming the PIP claimant journey overall to provide a more streamlined and user-friendly approach. We are committed to providing a digital channel – “PIP Apply” – to widen claimants’ choices on how to make a new claim for PIP. Using the digital channel is optional and we will ensure we provide effective alternatives for those who are unable or prefer not to use our online services. We are aiming to provide this service by the end of the year.”
The DWP conducted a trial of an online PIP2 form earlier this year, but made it available only by invitation to selected claimants.
Action needed to prepare for deaf pupils’ return to school and college.
On average, deaf children already achieve less than hearing children throughout their education and the gap risks getting wider.
The key support staff deaf children rely on must return as soon as it’s safe to do so and technology needs to be available quickly.
“Education is a right, not a privilege, and that doesn’t change because you’re deaf.”
The gulf between deaf and hearing children’s grades could get even wider unless schools and colleges act quickly before they return, three organisations have said.
In an open letter to schools and colleges across England, the National Deaf Children’s Society, the British Association of Teachers of the Deaf and the National Sensory Impairment Partnership say that deaf children must be supported as they try to catch up after months without access to education.
Deaf pupils already face a range of challenges and many underachieve compared to their peers, even though deafness isn’t a learning disability.
The organisations say the gap in achievement could get even wider after the coronavirus pandemic made it impossible for many deaf children to access vital technology or get support from the specialist staff they rely on.
The letter also raises concerns that despite the best efforts of schools, many resources offered for learning at home were simply not accessible to those deaf pupils that need subtitles or translation into British Sign Language.
As a result, all three organisations are calling on schools and colleges across England to make sure all the necessary steps are taken now to meet the challenges deaf pupils will face when they return.
A key recommendation is making sure that the necessary precautions are put in place to give deaf children safe access to the support staff and technology they rely on. The organisations warn against one-size-fits-all policies that do not take into account the needs of individual deaf children.
The letter also asks schools and colleges to hold detailed discussions with specialist staff, including Teachers of the Deaf, parents and deaf children themselves to work out the best ways to meet their needs and enable them to catch up on what they’ve missed.
It also raises some of the issues associated with the resources that children were given to learn from at home and offers advice on how to make sure they’re accessible for deaf pupils moving forward in the event of local lockdowns or moves to a mix of online and face-to-face learning.
Ian Noon, Chief Policy Advisor for the National Deaf Children’s Society, said:
“Every pupil in England has been excluded from education this year, but this is nothing new to deaf children, many of whom have already seen their support slashed in recent years.
“As education returns, we cannot allow deaf pupils to go without the support and technology they desperately rely on. They’re facing the challenge of their educational lifetime to catch-up and they must not be left to do it alone.
“Schools and colleges need to make sure the necessary technology and key support staff that deaf children rely on is in place as soon as they can. They also need to consult with specialist staff, parents and deaf pupils themselves to make sure they can catch up quickly.
“With support from the Government, which has an important role to play, education providers can give every deaf pupil the chance they deserve to reach their potential, even in these challenging times.
“Education is a right, not a privilege, and that doesn’t change because you’re deaf.”
Steph Halder, President of the British Association of Teachers of the Deaf, said:
“It is crucial that the needs of deaf pupils are borne in mind in all the discussions about returning to school. This includes issues such as the implications of wearing face coverings, remote learning, the vital role of specialist external support and the importance of deaf pupils being fully involved in any catch-up activities which must be tailored to their needs to be effective.
“The involvement of Qualified Teachers of the Deaf is therefore essential.”
This is a guest post by Monaco Solicitors. Published with thanks.
The Equality Act 2010 protects you, if you are disabled, from disability discrimination at work. Below, we summarise some of the key issues and practical steps that you can take if you are disabled or have been discriminated against in the workplace because of your disability.
What is disability discrimination?
Disability discrimination in the workplace occurs when you are treated worse than employees who do not have a disability or are put at a disadvantage in some way because of your disability.
Discrimination could be ongoing, in the form of a workplace policy or obstruction that prevents you from accessing things that you need to do your job, or it could only occur once.
What is disability?
The Equality Act classes a disability as ‘a physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities’.
The law recognises that there are different types of disability discrimination, as with other forms of discrimination. Those for disability include;
Direct discrimination
Indirect discrimination
Discrimination arising from disability
Harassment
Victimisation
Failure to make reasonable adjustments
Looking at each of these in turn:
1. Direct discrimination
Direct discrimination occurs where you are being treated less favourably than other colleagues who do not have a disability, because of your disability. Common examples that we see of this include: not employing you, denying you promotions or training, giving you less favourable terms and conditions or even dismissing you – just because you are disabled.
Indirect discrimination
Indirect discrimination is where you are adversely affected compared to other colleagues who are not disabled, by a policy or practice adopted. This differs from direct discrimination as the policy or practises adopted are permissible if the employer can show that it can be ‘objectively justified’.
An example of his form of discrimination, taken from the Equality and Human Rights article on, is: ‘Disability Discrimination’:
‘A job advert states that all applicants must have a driving licence. This puts some disabled people at a disadvantage: they may not have a licence because, for example, they have epilepsy.
If the advert is for a bus driver job, the requirement will be justified. If it is for a teacher to work across two schools, it will be more difficult to justify.’
3. Discrimination arising from disability
This form of discrimination will occur because of certain needs that you may have arising from your disability, rather than from the disability itself.
An example of this would be that you may need an assistance dog, regular absences form work for appointments or more frequent toilet breaks. Discrimination arising from your disability would then occur if your employer makes life difficult because of these needs.
However, your employer can only be liable for this type of discrimination if they knew or should have known about your disability.
This type of discrimination may be lawful if your employer can show that this treatment is proportionate. (In plain English, this justification means that the goal achieved by the discrimination must outweigh the disadvantage incurred by the discrimination)
4. Harassment related to disability
This type of discrimination is when you are treated in a way which makes you feel offended, humiliated, intimidated or belittled, because of your disability, or creates an environment which makes you feel any of those feelings.
An example of this type of discrimination is if you have an evident physical disability, you may be taunted because you may not be able to do things as quickly as your able-bodied colleagues or being called unpleasant names referring to your disability.
This form of harassment is of growing concern (see our article on bullying and harassment). However, claims of harassment relating to your disability only succeed where your employer has failed to do everything possible to prevent the perpetrator(s) from harassing you.
5. Victimisation
Victimisation is where you are single out for bad treatment (for example, being refused promotion or threatened with dismissal) because you have made a complaint about disability discrimination in your workplace, or because you are thought to be assisting with someone in their disability claim.
6. Failure by employers to make reasonable adjustments
The law requires employers to accommodate employees with a disability through making reasonable adjustments, to prevent disability discrimination.
The three types of adjustments are:
To property and premises e.g. installing a lift, ramp or handrails in the office
To provide auxiliary aids e.g. provision of alternative equipment like a large computer screen or an ergonomic chair
To practices and policies e.g. changing the employee’s job description to vary duties
The first two types of adjustments will depend on the circumstances of each case and what is reasonable in terms of the nature of the adjustment, the size and resources available to the employer, the costs involved etc. What is reasonable for one employer in one set of circumstances will not necessarily be the same for other employers.
It has also long been established that employers are obliged to make reasonable adjustments to job roles and descriptions, within reason.
For example, if there are aspects of your job that you are unable to perform due to your disability, then your employer is obliged to consider adjustments to the job description, removing duties that you can’t perform or to consider offering another, more suitable, role within the organisation.
Reasonable adjustments to job roles and pay protection: new case law
The law surrounding whether ‘pay protection’ is a reasonable adjustment has been less clear until recently. This includes whether an employer who moves an employee to a new post due to the employee’s disability will be required to pay the employee the same salary as the old post, regardless of the lower salary in the new role.
The Employment Appeal Tribunal recently ruled that, in these circumstances, the employer should continue to offer pay protection to that employee. Implementing a wage cut where an employee is moved to a lower-paid role due to their disability, is, therefore, disability discrimination. The Tribunal held that there was no reason in principle that pay protection could not be considered a reasonable adjustment, however, there was no indication of whether pay protection should carry on permanently.
This case was ruled according to the circumstances of the case, so a change in circumstances could mean that the adjustment is no longer a reasonable obligation on the employer.
Advice for disabled employees needing reasonable adjustments
Firstly, you should ensure that your employer is made aware of your disability. Where they are not aware of your disability, they cannot reasonably be held responsible for failure to make reasonable adjustments. Not every condition constitutes a disability for the purposes of this article.
Next, you should assess the difficulties that you are facing in your role or workplace due to your disability, considering the adjustments or options for what would alleviate those difficulties. For example, you could have a condition that makes it difficult for you to comfortably use office equipment, and that you need ergonomic equipment.
Other examples include that you need adjustments to your employer’s attendance policies or targets as your condition means that you may require more absences than your non-disabled colleagues, and so you are not subject to the same process as your other colleagues for absences.
Once you have informed your employer of your disability and have proposed any solutions, it will be for them to make a decision. Good employers would then refer your propositions to an occupational health assessor for a medical opinion on your condition and to advise what steps would constitute a reasonable adjustment.
Where your employer does not seek medical assessment, or if you disagree with the outcome of the assessment, then you could seek a medical opinion of your own accord to support your propositions, for example, from your GP. Where there is a conflicting opinion between the two medical assessments, your employer will have some leeway to choose which opinion they follow.
Organisations such as Disability Rights UK and the Equalities and Human Rights Commission can provide useful information and signposting if you require support and guidance. Under the Access to Work, employees can also secure funding, subject to assessment, to assists their employer in making reasonable adjustments.
If you are having problems at work due to your disability…
In the first instance, you should raise a grievance to formally set out your complaints if your employer fails to acknowledge or address your situation. Most employers have a written grievance and equalities policy that will set out the complaints process that you should follow.
If despite being made aware of your disability, your employer fails to make reasonable adjustments, you also have the option to pursue legal action through the employment tribunal for disability discrimination. A claim like this must be made within 3 months less one day from the date of the discrimination. In the case of your employer’s failure to make reasonable adjustments, the deadline will be 3 months less one day from the date that the employer decided not to offer you the reasonable adjustments.
Raising a grievance about the circumstances will not suspend this deadline, so you must not delay legal action even when you have started an internal complaint.
Our editor has been interviewed by Vuelio as part of their Blogger Spotlight series, after making their Top Ten Healthcare Blogs for three years running.
The majority of children with special educational needs and disabilities (SEND) felt less stress and anxiety away from school and at home during lockdown, according to a survey of parent carers carried out by the University of Sussex.
Three out of five parent carers felt their child with SEND were less stressed as lockdown allowed greater time spent with families, increased one-to-one time and greater flexibility to pursue own interests at home while removing the social pressures of school, requirement to wear uniform and experiences with bullies, the nationwide survey reveals.
But the study, carried out by the University of Sussex School of Education and Social Work, also details how four in ten parent carers of children with SEND felt they received no support from education or other agencies during lockdown.
Parent carers told the University of Sussex researchers they felt children with SEND had been overlooked and forgotten about. Some felt their children with EHC plans should have been allowed to continue attending school and receiving one-to-one support.
Schools and government ministers are now being urged to take steps to ensure that the return to classrooms for children with SEND is a gradual, phased and slow-paced process in order to support the wellbeing of children.
Education experts at the University of Sussex are recommending teachers and schools focus on mental health, wellbeing, routines and relationships across the first term back rather than prioritising the catch-up on academic progress. They are also advising that schools incorporate the positive aspects of lockdown homeschooling and bring them into the classroom environment.
Dr Jacqui Shepherd, Lecturer in Education at the University of Sussex, said: “Our survey has shown that the experience of lockdown has been very different for different families but the message for a return to school is near unanimous; it must be phased and gradual with priority given to routines, wellbeing and social aspects of education ahead of academic pressures. Teachers, teaching assistants and SENCOs should take time listen to parent carers and children with SEND as they have had unique experiences that can be used to revitalize and improve education.”
Dr Christina Hancock, Lecturer in Primary Education at the University of Sussex, said: “Schools, teachers and SENCOs should ensure personalized discussions with children and parents to fully understand their unique experiences through the Covid-19 pandemic. Using this knowledge will help to ensure the support is appropriate to the needs of the child. Some children might prefer highly structured activities across the first few days whilst others need time and space to speak with their friends.”
Parent carers surveyed this summer were divided over their perceptions on returning to school with an equal number indicating their child was eager to go back as there were respondents who felt their child was not looking forward to the prospect.
Four out of five parent carers reported concerns about their children returning to school after many had been happy and more relaxed at home. They expressed a range of anxieties including: social pressures, being bullied, being behind in their work, Covid risks, being in a new class or school with new children and adults, keeping up with homework and adapting to new routines.
For other parent carers, the return to school was seen as helpful because of the increasingly challenging verbal and physical behaviours shown at home while some children were also keen to be with friends and back in a familiar routine. Nearly 90% of survey respondents identified personal stresses and problems at home related to the care and responsibility of supporting their child with SEND during lockdown.
Dr Shepherd said: “In our survey, it was clear that parent carers of children with SEND had a number of concerns about returning to school including social interactions, social distancing, noise, all day learning and transport arrangements. Parent carers also reported a preference for ensuring the current needs of children are assessed given that some children might be at a very different level socially, emotionally and academically than they were before lockdown.”
Building on parent carers’ concerns about returning to school, the experts at the University of Sussex have made a number of recommendations for schools and teachers designed to help ease the transition in a newly published report.
The recommendations include schools being prepared to incorporate technology, phased returns, one-to-one support, small group work, social stories, checklist and visual supports to support children to transition back to full-time education as well as incorporating home learning preferences established over lockdown to allow them to be continued in the classroom.
Parent carers in the study have suggested schools use technology to further engage families into the school day or to conduct virtual tours walking pupils through all the changes related to the learning environment. Parents also told researchers that the use of a checklist or social stories would help ease anxieties for returning children by providing clarity around changes such as social distancing rules.
Dr Hancock said: “We believe the significant changes brought about by the Covid-19 pandemic have created an opportunity to revitalize education for children with SEND if schools, government and policymakers consider retaining or adapting the aspects that worked well across the home learning experience.
“Although parents encountered many challenges in homeschooling during lockdown, our survey shows they clearly had some positive experiences that enhanced learning and reduced anxieties such as more time with their families, greater flexibility, the ability to pursue personal interests and limited social pressures. Parents found that small aspects such as their children deciding their own routines or taking a break when needed were all beneficial and these could be continued in the classroom.
“Embedding these positive aspects of homeschooling into schools offers the potential for real and lasting impact for children with SEND and would significantly enhance their classroom learning experience.”
John’s Campaign says many care homes in England are still refusing regular face-to-face visits, often essential for people with severe dementia.
Dr Angela McIntyre, a retired doctor backing the campaign, has not seen her 92-year-old mother since March.
A Department of Health spokesman said: “We know limiting visits in care homes has been difficult for many families.”
He added: “Our first priority is to prevent infections in care homes, and this means that visiting policy should still be restricted with alternatives sought wherever possible.
“Visiting policies should be tailored by the individual care home and take into account local risks in their area.”
But John’s Campaign believes the guidance does not take into account how important visits from family members are for dementia patients and believes it could be in breach of the law.
It cites the case of Dr McIntyre’s mother, Joan, who is bed-bound and isolated in her top-floor room.
The charity said: “Her daughter’s visits [were] previously her only comfort. It’s now six months since Angela has been allowed to visit Joan despite advising that she would take all infection-control precautions and only enter her room via the fire exit stairs.
“Instead she has been told that she will only be permitted when her mother is dying.”
John’s Campaign co-founder Julia Jones, whose mother June spent the last two-and-a-half years of her life in a care home, said: “We know we’re speaking for thousands who are experiencing extraordinary bewilderment and anguish.
“We can only hope that the government will waste no more of these people’s precious time and will give clear direction and the necessary support for their needs and wishes to be respected.”
‘Grateful to hold mum’s hand’
When Rosie was finally allowed to visit her mother in her care home in June, after months of lockdown, she was shocked to see her dementia had worsened.
During the August heatwave, and after a spell of not eating, Rosie’s mother had begun refusing liquids – a grim sign which led carers to allow Rosie to spend more time with her mother, as long as she wore PPE.
Being able to hold her mother’s hand in her final days “felt really important” and Rosie was “really grateful I could be there”.
“But at the same time, 30 minutes and a carer would come and say ‘you need to leave now’,” she told BBC Radio 4’s Sanchia Berg.
While Rosie was grateful to the carers who allowed her longer visits in the last days before her mother’s death, Rosie said she felt like the months of lockdown where no visits were allowed had led to her mother’s decline.
In comparison with paid carers on varied shifts, Rosie says her family “were the constant in understanding my mum’s needs” – and that family members should therefore be “considered equal to paid care staff” when it comes to access to care homes.
John’s Campaign has instructed two legal firms who, it says, are “in the process of preparing a pre-action letter, the first stage of a legal challenge” against the government’s advice.
In July, other leading charities, including Dementia UK and the Alzheimer’s Society, wrote to the health secretary demanding relatives of care home residents with dementia should be treated as key workers.
The letter also noted the “inconsistency” of the visiting guidance across the UK nations.
In Scotland, care homes that are virus-free for 28 days were able to accept visitors from 3 July
In Northern Ireland, care homes that are free from the virus can allow one person to visit at a time, with a second person accommodated “where possible”
In Wales, visits have been allowed to care homes and their residents since 1 June, provided they take place outside and two-metre social distancing rules are followed
Ebenezer Azamati was “accosted” by a security guard when he tried to return to a seat he had reserved at a debate on 17 October 2019.
The postgraduate student was accused of being dishonest and violent before the union later accepted the allegations were “wholly unfounded and untrue”.
It also agreed the allegations caused “serious harm to his reputation”.
The Oxford Union, which is independent from the university, has a tradition of hosting debates and speakers stretching back to 1823.
Ahead of a debate in the union’s chamber in Frewin Court last year, Mr Azamati, who is a member of the society, was “forcibly and violently prevented” from taking his reserved seat.
The St John’s College international relations student had been initially turned away from the debate before he was allowed in and then removed.
Video footage showed an argument between security and Mr Azamati in the chamber before staff appeared to manhandle him.
Mr Azamati, from Ghana, sought legal advice after the incident which he said made him feel “unwelcome in the union, Oxford and even the country”.
In a statement released on Twitter, the union said: “What happened to Mr Azamati was fundamentally wrong.
“We apologise to him unreservedly and have made a compensatory payment to him in recognition of this.”
The amount of compensation has not been disclosed.
What is the Oxford Union?
The Oxford Union is one of the most prestigious societies in the world and its debating chamber intentionally resembles the House of Commons.
Former prime minister Harold Macmillan once said the union is “the last bastion of free speech in the Western world”.
The union invites world leaders, politicians, celebrities and controversial speakers to give speeches to its members, who are mostly current or former Oxford students.
Past presidents include Prime Minister Boris Johnson, the former prime minister of Pakistan Benazir Bhutto and former Liberal Partyy leader Jeremy Thorpe.
The student previously said he was “treated as not being human enough to deserve justice and fair treatment”.
The union said it accepted calls for “root and branch changes” to be made at the society.
It said following discussions with Mr Azamati’s legal team, the society had agreed to commission a review by two lawyers to “closely examine our rules, policies, procedures, practices, staff roles and responsibilities”.
The review will produce a report with recommendations and be published publicly, the union said.
“We must ensure that we become an institution in which such an incident can never recur. We are committed to that change,” it added.
Biggie made being a big guy cool,” says George Doman. “I want to make being disabled cool. I don’t see why we can’t. Honestly? On this new song, we sound like superheroes. It’s like we deserve our own Marvel movie.”
California resident Doman, 37, has been rapping under the name Georgetragic since the dawn of the century, and in 2007 had a track on an album released with the PlayStation game God of War II. But the new song he refers to represents his best chance yet of reaching a mass audience. He takes the first verse in a collaboration with two other disabled rappers on the title track for the documentary Rising Phoenix, a film by directors Ian Bonhôte and Peter Ettedgui, who made McQueen, the acclaimed 2018 biography of fashion designer Alexander McQueen.
Rising Phoenix tells the story of the Paralympics and some of the games’ competitors. The track of the same name was the idea of soundtrack composer and producer Daniel Pemberton, who chose to work exclusively with disabled musicians on the film’s score and provided the rappers with a huge soundscape, driven by a string-laden pulsebeat. Against images of the film’s Paralympic athletes rendered as classical marble sculptures – a direct visual nod to the end credits of Avengers: Age of Ultron – the superhero notion is writ large. But so is a simmering sense of anger from a community all too used to being ignored.
“I used to tell my friends my disability is my superpower,” says Doman, who has cerebral palsy. “What are the chances that now, during the coronavirus, we’re doing this song, in a movie about the Paralympics, and the film ultimately is about disabilities being a superpower, and I’m one of the spokespeople for the song? It’s just sad that it’s taken so long.”
The decision to make the theme song a rap track was influenced by Channel 4’s use of Public Enemy’s Harder Than You Think as the theme for the station’s coverage of the 2012 London Paralympics. Having decided to go down the rap route, Pemberton set out to find disabled emcees to collaborate with. He made contact with Leroy Moore, a rapper, poet, journalist and disability-rights activist who, in 2007, co-founded the collective Krip-Hop Nation in Oakland, California, and asked whether any of the organisation’s artists might be interested in taking part. The invitation was enthusiastically received.
“In the London Paralympics it was all about Public Enemy – it wasn’t really about people with disabilities,” says Moore. “A famous non-disabled person can do a track for a disabled event? It doesn’t make any sense. Daniel’s really ripping that notion up, and I give mad thanks to him, because usually we get passed by.”
Krip-Hop Nation is both a campaigning organisation and a platform for its musician members to collaborate and help each other reach wider audiences. But its members use the term “krip-hop” to signify more than just the collective: almost like P-Funk or Wu-Tang, the name also stands as a signifier of a shared sound, style or approach.
Moore introduced Pemberton to Doman, Boston-based Krip-Hop Nation co-founder Keith Jones, and Toni Hickman, who lives in Texas. Each wrote their parts at home to a demo of Pemberton’s track, and the composer put the finished song together in London. The verses take the athletes’ stories as a starting point and interweave each artist’s experiences into lines that amplify the film’s overarching themes. The tone is one of strength, pride and defiance.
“It’s an anthem for the human spirit,” says Jones, who, like Doman, has cerebral palsy. “But it’s definitively Krip-Hop, because it’s just funky! The track is nuts, everybody on it bangs. You’re not going to go, ‘One person wrote it with his foot, one person’s in a wheelchair, one person had a stroke’ – that’s not what jumps to the forefront. It’s just a dope song.”
Hickman says: “The song is an extension of the documentary. This may be the biggest thing I’ve ever done in my music career – not because it’s going to be on Netflix, but because of the message that’s about to go into the world.”
Unlike Doman, Moore or Jones, Hickman was not born with a disability. She was signed as a rapper to the Suave House label in the 1990s and appeared on several high-profile records, including Eightball & MJG’s gold-selling In Our Lifetime album. But in 2004 she suffered the first of two brain aneurysms: during surgery for the second, a stroke left her partially paralysed.
“I’m on this line of understanding disability and understanding the ignorance of some people with ablism,” she says. “I understand how a person can think one way. But this documentary is opening the box; the film and the song is putting it dead in your face. You’re going to see how amazing people with disabilities are.”
Discrimination against the disabled takes many forms, including hiding behind a patronising cloak of apparent concern. Ultimately it derives from fear, Doman believes. “What we have is so special – it shines so, so bright – that I think they’re scared of the light,” he says. “I think that’s why it’s so hard for us. I think they’re scared of our potential. I think they fear it.”
Responses to the work of Krip-Hop Nation in organising concerts, mixtapes and advocacy have been mixed, even within a world as steeped in social-justice protest as rap. “When we first started we got a lot of hate emails from hip-hop journalists,” Moore says. “For our first event, we got disabled and queer hip-hop artists together, and we got a lot of flak for that. I was there in New York in the late-70s, and saw women hip-hop artists, people on crutches. But when hip-hop went from the streets to the suites, we got the negative pushback.”
It may only be one song, at the end of one film, but all those involved believe that Rising Phoenix has the potential to catalyse real change. Certainly, the opportunity to confront preconceptions is one that the format of a bullish rap track is well suited to provide.
“Music is the bridge,” says Jones. “You can always bridge a difficult conversation with a song. ‘Able-bodied’, or ‘non-disabled’, people find it conceptually hard to see a person with a different human condition but who has the same kind of drive that a ‘non-disabled’ person has. That, for me, is what I hope we can shatter. As much as [the film] is centred around sport, it’s really centred around life. It’s: ‘Yes, thank you for loving me as an athlete – but would you date me?’ It’s: ‘Thank you for loving my song, but would you marry me?’ If my disability weirds you out, then I don’t know if you’re aware enough of your own humanity to even appreciate mine.”
The entertainment industry has a particular power in reshaping preconceptions, the artists argue. As important as a more diverse workforce in record, TV and film companies would be in helping establish better understanding and representation, having disabled people in front of the microphone and the camera is vital.
“Drake played a handicapped high-school kid on the show Degrassi: The Next Generation,” Doman says, pointing out that the casting of an actor with a disability to play a disabled character on TV – such as RJ Mitte in Breaking Bad – remains the exception rather than the rule. “Thank God Daniel was around to realise that this needs to be authentic.”
“My hope,” says Jones, “is that this doesn’t get played in the media as, ‘Oh, the negroes and the disabled people have overcome, and isn’t this a touching emotional song?’ This song is talking about strength, and what resilience you need in order to wake up, still wanna be an athlete, still wanna rap, still wanna be a human, knowing that society collectively has deemed your human condition less than adequate. That kind of power is what’s underneath the song, and that’s what comes through when I listen to it.”
“There are so many artists that have disabilities, and that’s important because most of us don’t have regular jobs,” says Hickman. “We have to get creative. I live off what I write and create because I can’t do certain jobs. And that goes for a lot of people with disabilities. So I would ask people to support their disabled community, but support their talents as well – because this is literally what they have to give.”
“These are real superheroes – real people: that’s what I want people to get,” says Doman. “You might think of disability as weakness, but it’s not. Because we’re still here, and we’re still rising.”
If Doreen Chappell’s first marriage was a disaster, her second one was a great success. She was born Doreen Brenda Ward in the East End of London, in 1936; her mother was a seamstress, her father, who had seen action at Gallipoli, later became a telecoms engineer.
It was a working-class household: Doreen left school at 15 to look for a job. Like many young women of the era, she became a typist and secretary, even having elocution classes to improve her chances of getting work.
Doreen married young, at 23. Her family didn’t approve – none of them attended the wedding – and when the marriage began to fall apart, they didn’t step in to help. “They thought that she’d made her bed, so now she should lie in it,” says her son, Simon. Doreen’s husband would disappear for weeks at a time, leaving her with the children. Eventually, when Simon was five and her daughter Melanie was a baby, he absconded for good, moving abroad to avoid paying child support. The children have had no contact with him since; they don’t even know if he’s alive.
What followed next was a period of penury that was almost Victorian in its severity. The family moved into a high-rise building where the lift stank of urine. Doreen worked as a cleaner, bringing the children to work with her. She couldn’t afford to heat the flat, so she would take Simon and Melanie for long walks to keep warm. Simon remembers these walks, and the balaclava his mum knitted for him to wear on them. Doreen wasn’t a great knitter, so it had no eye holes. She made him wear it anyway.
There wasn’t enough money for food, so Doreen fed the children and went hungry herself. Her weight dropped to six stone. Lying in bed at night, Simon used to pray for roast chicken. Eventually social services got involved, and threatened to take the children away. But then, in 1968, at a barbecue, she met John Chappell, and he saved her. He was 26, a farmer, five years younger than her.
John is taciturn and Doreen was loquacious – her best friend, Dawn, used to joke that she could talk to a lamp-post – and she talked and talked, and he stood there with a beer and listened. Then he put Doreen, Melanie and Simon in his car, and drove them back to his farm, and they never went hungry or felt cold again. “When he came along,” remembers Simon, “I really thought that God had sent him.”
Doreen and John were engaged within six weeks, and married in 1969. They stayed together for half a century, and they loved each other until the end. “It worked between us,” says John, now 78. “We stayed together for over 50 years. We were soulmates – from the time we got together, we were a pair.”
The trauma of those early years faded, but never really went away. Doreen was left with an enduring terror of abandonment: when she had to be separated from John for any reason, she would become emotional. If a family member was late coming home, she would panic. “It left her quite scarred mentally,” recalls Simon, now 57 and the owner of a marketing business in Warwickshire. “Because my blood father would not come home all night and left her alone. So my father would never leave her. For 50 years, he was by her side. They worked together. He never went to the pub without her. He was always on time coming home.”
Which is why the manner of Doreen’s death was so cruel. When Doreen Chappell died of Covid-19 on 13 April, at the age of 83, John wasn’t there; none of her family were. There was a nurse to hold her hand at the end, but for most of her last week on Earth Doreen was totally alone. “The pain is indescribable,” says Simon. “The thought of Mum not being able to breathe, and suffocating. But the layer that sits on top of all of this is that Mum would have been scared. That’s the way she was. And we weren’t there.
Because her children’s early years were full of privation, when Doreen escaped from poverty, she focused all her energy on creating a safe, loving home for them. There was always a cake in the oven and food in the fridge. Even when Melanie was grown up, visiting with her husband and daughters, Doreen would lay out a dressing gown for her, put flowers in the room, tuck a hot-water bottle at the end of the bed. “You’d feel like a child again,” says Melanie, 54, who runs a business supplying central heating equipment in Northampton. “It was such a lovely, safe, comforting feeling.”
Doreen and John had a child together, Alison, and the family moved from Sussex to a farm in Cornwall in 1973. It was a hard life – the farm was never really big enough to be profitable – and John and Doreen used to let cottages to tourists to make ends meet. If you had visited the house in those days, you would have found Doreen in the kitchen, reading Daphne du Maurier novels, or ghost stories – she was a voracious reader – or preparing something ugly-looking but delicious. “We’d always say her cooking looked blooming awful,” says John, “but it tasted good.”
The house in Cornwall was a ramshackle affair that had been listed in the Domesday Book. “She swore the farmhouse was haunted,” Simon says. “She could hear the stairs creaking in the night.” In adulthood, Simon confessed to his mother: the creaking was him, slipping out to see his girlfriend. But she was unmoving. “She would say: ‘But the clairvoyant came and she could sense there were ghosts in the wall!’” Simon laughs.
When she spoke, which was often, Doreen waved her hands around as if she was conducting an imaginary orchestra. She would chat to strangers on park benches, in shops, on buses. When Melanie remembers her mum, it’s like this: standing outside the holiday cottages, her arms full of laundry and cleaning supplies. It’s changeover day, and Doreen is meant to be cleaning out the cottages. Only she keeps stopping to chat with everyone who walks past. “Everything used to take so long,” Melanie laughs, “because she’d stop to talk to everybody.”
Doreen was a klutz. John wouldn’t let her near the tractor, for her own good. Once she left her Hillman Imp in gear outside the supermarket. When she turned the engine on, the car crashed through the supermarket window. “We were literally sitting in the aisle of this supermarket,” says Simon, “in the car. Mum sat there for a bit, and then started laughing. The shopkeeper came over and started shouting, and Mum said: ‘I’m so sorry! I didn’t want to use a trolley, so I thought I’d use the car.’” John saw the funny side. “They asked me what she was doing at the time on the insurance form,” John notes drily. “I wrote: ‘Window shopping.’”
Because Doreen was so clumsy, her family took some time to realise her motor skills were deteriorating. There was that time in 1983 when they were picking raspberries and Doreen fell over. “She went, bang,” Simon remembers. “We said: ‘What happened there?’ She said: ‘I don’t really know.’ You think: ‘Ah well. Maybe she tripped.’” In 2000, John and Doreen retired to Cumbria, where they spent their weekends walking or touring historic sites – both were history buffs, and they had chosen Cumbria to be near Hadrian’s Wall. There were other falls on country walks, some of them nasty, and Doreen was diagnosed with cerebellar ataxia, a neurological condition that affects the area of the brain responsible for controlling gait and muscle coordination, that same year.
For someone who had always been so physically active – Doreen would go jive-dancing in her 20s – losing her mobility was a hammer blow. By 2009, she was using a wheelchair. “She hated the wheelchair,” says John, “but she accepted it.” He would try to keep her spirits up, but she was often morose. “She felt that there was a stigma around being disabled,” Simon says. “People assumed she didn’t have a brain.” When visiting historic buildings, Doreen would often find that they weren’t wheelchair-accessible. “Things like that made her feel embarrassed,” says Simon. “They made her feel like she was a nuisance.”
On a family holiday in Rome in 2010, Doreen hauled herself through the catacombs after being told the tourist attraction wasn’t wheelchair-accessible. “To this day, I don’t know how she did it,” Simon marvels. “We had to move one leg forward for her, and then another, and she was hanging on to the rails on the side. It was incredible.” This is how Simon likes to remember her: being wheeled around the historic landmarks of Rome; drinking aperitivos in the sun. Doreen was happy. “She’d been worried about whether the wheelchair would get in the way of visiting the monument, but when we got there, she loved it.”
In her 60s and 70s, Doreen was as she ever was: the voluble centre of gravity in the family home. Melanie used to visit her parents around Easter. “My husband and Dad would go for a beer,” she remembers. “Mum and I would prepare the vegetables with a glass of wine. I loved those times. Just that simple hour of being with Mum and catching up.” She sobs. “I will miss that.”
In 2017, John and Doreen moved into Tithe Lodge, an assisted living facility managed by the Orbit housing association in Southam, Warwickshire. Also on site were carers from Unique Senior Care, which provided services to residents on an as-needed basis. By now, John was Doreen’s full-time carer: without him, she couldn’t get out of bed in the morning, use the bathroom or dress herself. “She lost her mojo a bit,” Simon remembers of her move into Tithe Lodge. “She wasn’t as sociable – but they made the best of it. They made friends. They still did everything together.”
When the coronavirus pandemic hit, John and Doreen did what they were supposed to do: they shielded at home, and had their food shopping delivered to their door. Both were high-risk: Doreen because of her disability, and John because he had been diagnosed with bowel cancer in 2012. They were riding out the pandemic in their flat, together, until John woke up on 29 March to find he was haemorrhaging, and was admitted to Warwick hospital for tests.
While John was in the hospital, carers from Unique Senior Care came into the flat to assist Doreen. They visited three times a day, to wash and dress her, give her lunch and put her to bed. She told her family they did not wear PPE. “She rang me one night in tears,” Simon remembers, “saying: ‘They came to put me to bed, and they weren’t wearing masks. I saw on television that they should be wearing masks and a gown and a shield, and they’re not.’” John says he also saw carers doing rounds of the facility, without PPE.
A spokesperson for Unique Senior Care told me: “Throughout the Covid pandemic, we have followed all Public Health England guidelines with regards to procedures and PPE as we have received them. I can also advise that we have had a constant and uninterrupted supply of PPE for all of our care team, which has allowed us to remain compliant with the aforementioned guidelines.”
Tony Clark, the director of independent living at Orbit, which operates Tithe Lodge, said that Orbit was “deeply saddened by the death of Mrs Chappell … We work closely with local authority partners and the agencies that provide care for our residents, to ensure that the most up-to-date guidance from Public Health England has and continues to be followed. We have not been made aware of any instances where this guidance has not been adhered to.”
Government advice from this period – when all existing PPE stock was being frantically directed towards the NHS – was confused and contradictory. Guidance published on 13 March advised that care home operators did not need to provide their staff with PPE. “If neither the care worker nor the individual receiving care and support is symptomatic,” reads the guidance, “then no personal protective equipment is required above and beyond normal good hygiene practices.” (This guidance was withdrawn on 13 May.)
Guidance issued on 2 April by Public Health England, however, required care workers making visits to clinically extremely vulnerable people to wear PPE. (Although Doreen and John were both vulnerable, they never received letters from the government advising them to shield, and the family is unsure if they were on the official shielding register for the clinically extremely vulnerable.) The contradictions between these two sets of guidance was not cleared up by the government for six weeks. A report from the Healthcare Safety Investigation Branch in August criticised this failure. “There was no straightforward way of navigating the gov.uk website,” the report found. “The guidance was not visible.”
This failure to consistently mandate the provision of PPE in the care sector, despite scientists knowing at the time that Covid-19 could be transmitted asymptomatically, has been condemned by MPs. “Too often the basis for decisions or changes, such as on PPE, was seemingly based upon what the system could cope with, rather than clinic advice and ‘what was right’,” the public accounts committee concluded in July.
John was discharged from hospital on 31 March, after testing negative for Covid-19. (This is not conclusive proof that he did not have Covid, since research in May showed that as many as 29% of tests could deliver a false negative result, but he did not develop any of the classic symptoms.) On 6 April, Doreen started to cough. On 8 April, she had blood in her stools, so an ambulance took her to hospital. She was discharged the following day, but was still passing blood, so John called the ambulance again on 9 April. He kissed his wife of 51 years goodbye, expecting to see her in a few days. “Within 24 hours,” says John, “we were told she had Covid, and that was the end of it. I’m sure it must have been the carers who gave it to her. I think we deserved better.”
At this time, Warwick hospital was not accepting visitors, even for end-of-life patients. Doreen’s family know that she would have been terrified, and that is hard for them to endure. “That was the first time in 50 years that she was left alone, anywhere,” says Simon. “She was in that hospital on her own for four days. She would have been a very frightened woman.” Melanie’s husband had to physically restrain her from going to the hospital.
Doctors told the family that Doreen was not a candidate for intensive care. “You trust the doctors and nurses are doing their best,” says Simon. “But when someone tells you that they won’t take your mum into intensive care because she isn’t ‘suitable’, it’s devastating. The only way that I can describe it is that it feels like they’ve given up on her.” He pauses. “I am reluctant to place blame on doctors,” he says. “But the truth of the matter is, if you’re disabled, in a wheelchair, it feels like a different ballgame.”
Doreen died on the evening of 13 April. “It haunts you,” says Melanie. “I have sleepless nights over it. The fact that I couldn’t get in there to see her, to hold her hand, to be with her that one last time … It tortures me to imagine her there. With none of us with her. She will have been so confused about why we weren’t there. And that will stay with me for a long time.”
Doreen Chappell’s family believe that she would be alive today had she not been disabled. “This woman had a will of iron,” Simon insists. “She had more fight in her than most people. The disability was the difference between life and death.” Doreen is one of 22,447 disabled people who died of Covid-19 in England and Wales between 2 March and 15 May – nearly 60% of the total death toll.
Covid has ripped through the disabled population mercilessly, rampantly. In England and Wales between March and May, disabled women and girls aged between nine and 64 who were “limited a lot” in daily activities were 11.3 times more likely to die than non-disabled people, and disabled men in this age and disability bracket were 6.5 times more likely to die. Disabled women aged 65 and over were 3.2 times more likely to die than non-disabled people; it was 2.4 times for men. These are calamitous numbers, and yet the public seems largely unaffected by the scale of this devastation. “These are just numbers to most people,” says Simon. “People think, ‘Oh, they had an underlying health condition, so it’s OK they died. I’m safe, because I don’t have an underlying condition.’ How rubbish is that?”
The government’s handling of its obligations towards disabled people, particularly during the early days of the pandemic, left much to be desired. “Disabled people felt abandoned,” says Fazilet Hadi of Disability Rights UK. On 18 March, the government issued a list of about 1.5 million high-risk individuals who should shield at home and be given preferential slots for supermarket deliveries. “Millions of disabled people found themselves not on the shielded list,” says Hadi. “Suddenly, disabled people who’d always done their food shopping online were told: ‘Sorry, those slots aren’t available any more.’” According to one survey of disabled people living in Manchester, 80% of respondents were not in the official shielded group. The government eventually added another 700,000 people to the register, but not until panic and alarm had rippled through the disabled community. “Charities were getting inundated with calls from disabled people who couldn’t get food,” says Fadi.
The publication, by the National Institute for Health and Care Excellence (Nice), of the clinical frailty scale on 20 March was a low point in the relationship between disabled people and the government. The scale assigned a numerical value to individuals, based on whether they had existing conditions. Those rated five and above – meaning that they needed help with housework and shopping – were considered less suitable candidates for beds in an intensive therapy unit (ITU). “As a rule of thumb,” an intensive care doctor working at a hospital in Essex, who prefers to remain anonymous, tells me, “under five, you’d always be considered for ITU. Five and above doesn’t mean you wouldn’t be considered for ITU. But you’d need to have a good reason.”
He insists that the scale does not discriminate against disabled people. “The frailty isn’t the only scoring system,” he says. “It’s a tool to help decision-making; just because someone has a disability doesn’t rule them out of intensive care.” But he acknowledges that at the peak of the pandemic – when intensive care doctors and nurses worked overtime in sweat-filled protective suits – a disabled person might have been considered a less suitable candidate for intensive care, if a non-disabled person also needed the bed. “I never saw a case of refusing someone a bed because another person was more suitable,” he says. “But subconsciously, it’s always a factor. Medicine is a finite resource. You think: ‘If I take this patient, I don’t have any more beds left if someone else needs it.’”
After an outcry from disability rights groups, Nice updated its guidance on 25 March to state that the tool should not be used for those with learning disabilities, or stable long-term disabilities such as cerebral palsy. But among the disabled community, uncertainty prevails. “Are we going to be treated equally when we get to critical care?” says Hadi. “It [the guidance] left a feeling that we wouldn’t be.”
While disability rights campaigners were challenging the Nice guidance, and mobilising support networks to help disabled people access food supplies, a new insult was added to injury: the government passed the Coronavirus Act on 25 March, giving local authorities the ability to reduce their provisions for social care support – a move that disproportionately affected disabled people. “It signalled to disabled people that, actually, we weren’t that important,” says Hadi. “Because if councils were under pressure, they could stop supporting us.”
As ministers ruthlessly prioritised reducing NHS admissions at any cost, some GP practices began updating the records of disabled people with “do not resuscitate” orders without consulting patients and families. (These orders advise paramedics and hospital staff not to attempt resuscitation, in the event of a cardiac arrest.) “I was shocked when I got the phone call,” says Darren Hunt, the manager of Rix House in Bradford, a 15-bed home for adults with physical or learning disabilities.
It was mid-April, and the Rix House staffer on the other end of the line informed Hunt that one of the GP practices that look after Rix House’s residents had issued DNRs for six residents. But when Hunt investigated further, it appeared that the practice had not properly consulted the residents and their families before issuing the orders. In two out of the six cases, the individuals had capacity, meaning they had the legal right to make decisions about their own care. “That was disappointing,” says Hunt. “The forms the GP filled out stated that they didn’t have capacity. But the only way you can understand that is if you complete an assessment with them. How could you do that without coming to see that person?
“They didn’t want people to go into hospital, I can appreciate that,” he continues. “Hospitals were overwhelmed.” But it seemed to him that the GP was putting these DNRs in place because individuals had a learning disability. He could think of no other reason.
Hunt challenged the DNRs and they were subsequently rescinded. But the overall experience left a bitter taste in his mouth. “For a lot of the people we support, we’re their only voices – they may not have family members,” he says. “Without us fighting for them, they haven’t got anybody. At the end of the day, what right do we have to take away a person’s life because they have a disability?”
Through the worst of the pandemic, disabled people sometimes felt as if their lives were judged as less deserving of the best treatment and care by the government and healthcare authorities. “There was this sense that if someone was healthy, their life was more valuable than yours,” says Hadi. Daily death tolls demarcated those with underlying health conditions and those without, as if it was only really important for the public to know how many healthy people were dying. “People say to me,” says Simon, “‘Well, most of these people would have died in the next six or 12 months anyway.’ But every extra day I could have had with my mother would have been pure gold. We lost her too early.”
In the months since Doreen’s death, her family’s grief has become coloured with rage. “At the time my mum got Covid, the whole country was two-metres distancing,” says Simon. “It doesn’t take a rocket scientist to work out that if the government said we should be two metres apart, and you’re going to put a carer within six inches of my mother’s face with no PPE, that’s going to increase the risk of her getting Covid. You can point at the government guidance all you want – but care companies also have a responsibility.”
Simon is a member of the Covid-19 Bereaved Families for Justice group, which is campaigning for an immediate public inquiry into the government’s handling of the pandemic. But anger has a corrosive effect, and the family are also trying to get on with the business of living. “When there’s something on television,” John says, “you start talking and then turn around to find an empty chair.” He has started gardening, for something to do. With the other residents at Tithe Lodge, he is growing tomatoes, courgettes and runner beans. They planted a bed of freesias to remember Doreen by – they were her favourite.
Melanie feels guilt that she wasn’t there with her mother at the end, even though intellectually she knows it wasn’t her fault. Sometimes she wakes up in the middle of the night and talks to her mother, and says sorry for not being there when she died. Before she falls asleep, Melanie says: “I try to remember her. I imagine the touch of her hand.” She sleeps with her mother’s makeup bag on her bedside table. “It smells of her,” Melanie explains. “It comforts me. I’m dreading that smell fading.”
So much death, and so much of it alone. Doreen Chappell was loved; she had family; she was taken before her time. She must have been scared. It was no way to go.
Born in an Indian village with cerebral palsy, Kuli Kohli was lucky to survive. Neighbours told her parents they should throw her in the river, instead they brought her to the UK. As she grew up here, writing became her means of escape – and transformed her life in ways she never expected.
Waiting to be called on stage in her home town of Wolverhampton, Kuli Kohli felt sick with anxiety. She was petrified her words wouldn’t come out and worried she would fall flat on her face. Her heart soared and her nerves clattered. Self-doubt raced through her mind. “Why am I putting myself through all of this?” she asked herself.
The host welcomed Kuli to the empty chair that was waiting for her. It was dark, a spotlight illuminated the stage, and a small wave of applause rippled around the room.
Emerging from the side of the stage, Kuli nervously approached the mic. She took a breath and a few seconds of silence passed before she shared one of her poems with an audience for the very first time.
Mine
I have a dream; please don’t influence it,
It belongs to me.
I have a delicate heart; please don’t break it,
It belongs to me.
I have peace of mind; please don’t disturb it,
It belongs to me.
I have to follow a path; please don’t obstruct it,
It belongs to me.
I have an amazing life; please let me live it,
It belongs to me.
I have a choice; please don’t choose for me,
It belongs to me.
I have freedom; please don’t capture me,
It belongs to me.
I have incredible feelings; please don’t hurt me,
They belong to me.
I have a lot of love; please don’t hate me,
Love is mine to share.
I’m on my material journey; don’t follow me
It won’t be fair.
So… I have a dream; it’s my dream to be free.
Kuli had more reason than most to experience stage fright. She was born with cerebral palsy, a neurological condition that affects her speech, her movement, posture, coordination and balance.
Getting up on stage and pouring out her poetry was her victory against those who told her that her life wasn’t worth living because of her disability – that she would never amount to anything or achieve her goals. She was embracing and owning a part of her identity, something she had been made to feel ashamed of all her life.
In 1970, when Kuli was born in a remote village in Uttar Pradesh, northern India, it soon became apparent that she was unlike the other children.
Kuli’s mother was about 15 years old when she gave birth to her. She was the first-born and many within the community were disappointed that she was not a boy – first-born daughters were often looked upon negatively. But her gender wasn’t the only thing the villagers noticed.
“People thought I was a strange girl, because I was different. Pretty much as soon as I was born, people would tell my mother to get rid of me because nobody would marry a girl like this,” she says.
“No-one knew what the matter with me was. Disabilities were not understood in my village at the time, and nobody knew what cerebral palsy was. People in the village would tell my family that I was a punishment from a previous life,” she says.
“I was too young to remember but my auntie who lived with us told me that my body was like a rag doll.”
A few villagers argued that she should be thrown into the river and left to drown.
“But I was literally saved by my father. He physically had to intervene to stop my body from being taken from our home and discarded like an object,” says Kuli. “He saved my life and stood up for me.”
It wasn’t long before her family decided her future didn’t lie in this village.
The 1970s saw an influx of South Asian migrants to the UK and Kuli’s family joined them. She was two-and-a-half when they arrived in Wolverhampton in 1973, her father finding work as a bus driver.
But Kuli faced prejudice in the UK too. The idea that her condition was a punishment was still held by many of those around her.
“Even here, some parts of the Asian community regard disability with abhorrence. This results in people with disabilities being ignored, used and abused,” she says.
“They struggle to carry out activities able-bodied people do without hesitation – for example, going out, driving and using public transport, going to university, having relationships, finding a life partner and getting married, owning a home, cooking and carrying out daily chores, having children, having hobbies and interests, getting a job.”
The UK-based charity, Asian People’s Disability Alliance, says some of those who believe disability is a punishment for a sin in another life also fear they will be punished for associating with a disabled person. So disabled people may find themselves genuinely ostracised.
Kuli went to a school for children with disabilities and outside its walls she felt singled out.
“Other kids would call me ‘handicapped’ – a word I despise. I’d be stared at and pointed at. Going to the Gurdwara (Sikh temple) was an ordeal. I hated it because people just used to stare at me, making me feel unimportant, alienated and invalid.
She recalls children asking her: “Why do you walk like that and talk like that?”
As she got older, it became harder for Kuli to communicate.
But what she could not express through her speech, she began to express in writing. It was at Penn Hall Special School that Kuli first found poetry.
“The teachers used to read us poetry and I enjoyed listening to it,” she says.
“Then I started to write poetry as a form of relief and a kind of therapy. I enjoyed making words rhyme and writing about my emotions and feelings.”
At 13, she enrolled into a mainstream secondary school. Things started to improve as she mingled with her new classmates. And she continued writing.
“I wrote for pleasure as well as relief,” she says. “I may not have been able-bodied, but I was of able mind. I felt, thought and saw like everybody else. It made me feel powerful.”
School was a safe haven for Kuli, but she feels she underachieved. She failed most of her GCSEs and left school at 16. She was disappointed that she wouldn’t be able to go to university, though her parents had always doubted she would be able to manage alone there anyway.
Now that she had completed school, Kuli’s family attempted to arrange a marriage for her.
“I remember when families would come over to our house to check if I would be suitable for their son,” she says.
“I’d dress up in traditional clothes and sit in our small living room. When the families who came over saw my condition, they would say to my family, ‘You expect our son to marry this?’ And then leave.”
All her life she’d heard people say that no man would want her, and now those hurtful words echoed through her mind.
No-one knew that she poured her feelings on to paper.
She wrote about what life had been like for her, with the idea that maybe one day someone would read it. She wanted people to know what it was like for an Asian woman with cerebral palsy – not seeking sympathy, but empathy.
And then she met the man who would eventually become her husband.
This time, the young man and his family were keen on the marriage. But Kuli wasn’t.
“I didn’t like him at first, I wasn’t very into him,” she says.
“But after time went by and I got to know him, I fell in love with him and he loved me too.”
His acceptance astonished her.
“He is able-bodied and he didn’t have any issues with my disability,” Kuli says. “It wasn’t important to him.”
Determined to find work, Kuli enrolled into a youth training scheme, which led her to a placement at Wolverhampton City Council – a job she has kept for the last 30 years.
A few years ago, now in her 40s, Kuli was a happily married woman, a mother to three children, and working full-time.
She had proved everyone wrong. But life was far from perfect.
Kuli struggled to live up to the expectations placed on an Asian woman.
“I am expected to provide as a mother, a wife, a daughter-in-law and a full-time worker who should give to her family and job her best on a daily basis,” she says. “It is an ordeal as I am not like able-bodied mothers and I cannot do many things that are expected of me like making chapatis, cooking full meals, shopping and carrying out daily chores.
“I cannot plait or tie up my children’s hair. There are many tasks I wish I could accomplish; this lack of independence causes frustration and anger.”
She had always continued writing though, and one day at the city council she met Simon Fletcher, the literature development officer at Wolverhampton libraries.
Kuli revealed to him that she wrote and decided to show him a few bits of poetry and a novel. She thought that as Simon was a writer himself, he would be able to give her valuable advice. After all, he was manager of a small press called Offa’s Press.
Simon was floored by what he read – the emotion, the honesty and pain.
He became Kuli’s mentor, encouraging her to write a collection of work that Offa’s Press could publish. He felt more people needed to hear her story because there would be many other women like her, who were voiceless. He believed she could help them with her poetry and stories.
Kuli agrees that many Punjabi women of her age and generation find it very hard to express how they feel and it has become her goal to empower these women, through writing.
“I know some second-generation Punjabi women living in the UK, like myself, who have desires and dreams, and some women’s dreams have been suppressed through the sacrifice of being dutiful wives, mothers, grandmothers, daughters and daughters-in-law,” she says.
“Writing and Punjabi women is not a very good match. Punjabi women who express a desire in writing and art are thought of as ‘time-wasters’.
“Punjabis often think that we should be doing something more productive with our precious time, like looking after the family and learning to sew and cook, and things like that. I’m a lucky fish, who has escaped the fishing net.”
Kuli set up a Punjabi Women’s Writers Group in Wolverhampton. Meeting once a month in the city’s Central Library, it gives a handful of Punjabi women a safe place to express themselves freely.
Kuli is very protective of who can attend these sessions. She maintains that the women need to feel free of any judgement from family members, something they have dealt with their whole lives.
She tells me that the women write about how they feel and what they see in their community. For example, alcoholic husbands or fathers and domestic abuse – but also the beautiful and funny side of life.
Kuli was gaining a lot of confidence and she felt the time had come to clear one more hurdle.
Getting up on stage to perform her poetry was an idea that would make her stomach churn. But she felt like she had to overcome this, to finally embrace who she is and display herself with confidence.
So in 2017, she gave the first ever live performance of her work, beginning with the words, “I have a dream.”
“I read out loud with a microphone a 15-minute set of poetry in front of an appreciative audience of about 40 people,” says Kuli.
“I spoke as clearly as I could but slipped up a few times. I knew I could have done better. But the audience was very patient and supportive and they welcomed my work with great enthusiasm.
“I understand that for many people it must be alarming to watch a person like me on stage struggling to perform and articulate my words. I know I am not physically normal but my heart, soul and mind are. I know that I will never be a ‘perfect’ performer but with practice and guidance, I know I will grow to be better.”
As Kuli’s confidence grew, so did the group of Punjabi women she guides. The Punjabi Writers Group performed their poetry as a collective in 2019 at The Festival of Imagination in Ironbridge.
At 49, Kuli has come a long way.
“My conclusion is that disability is the problem of the whole of society,” she says. “Our community doesn’t encourage disabled people enough – their personal issues and problems are not taken seriously and are kept hidden. We all have disabilities to an extent. Ignorance of disability is in our roots and this will take many generations to grow out.”
Kuli has summed up her life in her poem, Survivor.
For Sophie Washington, who’s been shielding in rural Wales since March, you might have thought the coronavirus pandemic has been overwhelmingly frustrating.
But Sophie, 24, a wheelchair-user, says lockdown has actually allowed her to “contribute more” to her role at a London-based charity.
A Unison survey of more than 4,000 disabled people across the UK found many felt working from home during the coronavirus pandemic improved their wellbeing and more than half felt they’d benefit from doing so in the future.
The union has now called for disabled people to be given the right to work from home after the Covid-19 crisis, with penalties for employers who refuse.
The Department for Work and Pensions said disabled workers could benefit from financial support to work from home due to an extension to its Access to Work scheme.
While Sophie’s health prevents her from working in a full-time job, and mobility makes it difficult for her to get out and about, she values her position at Rays of Sunshine – a charity for seriously ill children.
‘Travelling can be painful’
She is an ambassador and is involved in voluntary work, making journeys to the charity’s London office when necessary for meetings.
“Before lockdown I would try and travel down to the meetings, which is not ideal when travelling can be very painful for me and it’s a very long way to go,” she said.
“People say that places are disabled-friendly but until you are actually there in the wheelchair, it’s a completely different story.”
But, Sophie believes “one of the positives” to come out of lockdown is the attitude towards working from home has changed.
“Since lockdown we have had several meetings online and it’s been really great to be involved. I’ve been more well in myself as I haven’t had to make that long journey, and I’ve been able to contribute more, which is a great thing.”
While shielding has been tough, with contact with friends restricted and considerable anxiety around Covid-19, Sophie thinks the possibility of lasting change has helped her see the upside of the pandemic.
“Hopefully, going forward – for myself and a lot of others with mobility issues that can’t reach a traditional work environment as easily – we’ll get some benefits and work from home more now.”
Having the ability to work flexibly, to take short breaks to manage health issues, and having easier access to toilets were among the reasons highlighted for enhancing productivity and wellbeing in the Unison survey.
‘No excuse to turn home working down’
The responses suggested people were less likely to be exhausted and in pain from long commutes.
Half of those who completed the survey had worked from home during the pandemic and almost three-quarters felt they were more productive or as productive working from home compared to their pre-lockdown place of work.
And 54% felt they would benefit from working from home in the future.
Unison assistant general secretary Christina McAnea said: “The pandemic’s demonstrated that there’s no longer any excuse for employers to turn disabled workers down if they request to work from home.”
Disability equality charity Scope said the pandemic had “forced businesses to adapt to flexible home working” and urged employers to embrace change once the pandemic was over.
James Taylor from the charity said: “For many disabled people, flexible home working is something they have been requesting for years with varying degrees of success depending on the employer.
“In the UK there are one million disabled people who want to work but are being denied the opportunity. Done right, inclusive policies such as flexible and remote working can be hugely beneficial for many employees, by allowing them to work in the most effective way for them.”
The UK government said disabled people could now benefit from financial support to work from home due to an extension to its Access to Work scheme.
Those working from home or in the workplace would benefit from extra help including support for special equipment, travel costs and mental health.
Minister for Disabled People, Health and Work, Justin Tomlinson said: “This extension of funding and support will help to protect thousands of jobs, which provide vital independence allowing disabled people to reach their full potential.”
The parents of Caeden Thomson, from Corby, Northamptonshire, were also told he would never sit or talk.
He climbed Ben Nevis on Saturday to raise money for the charity Scope.
Caeden’s mother Lisa Thomson said the challenge was “much harder than any of us really expected” but called her son “an absolute legend”.
She said they began climbing at 09:00 BST and reached the top at 17:30, before making their way to the bottom again at 22:30.
Ms Thomson said: “From three quarters up the pathway is just massive piles of boulders and very hard to climb, and even at the top we didn’t think he would make it down.
“There were danger areas where carrying was really difficult, so he did have to walk down a lot of it too. Bless him. We are all super proud of him.”
As of Sunday morning, the family reached their £8,000 target for the disability equality charity.
The family were due to be climbing the 4,413ft (1.3km) Scottish mountain in May but it had to be postponed due to coronavirus.
Before their latest trip Ms Thomson said he decided to take on the challenge as “he wants to give back”.
She said he had undertaken physiotherapy, speech and language therapy and hydrotherapy since he was born.
“Caeden’s life began with huge struggle, stress and a feeling of the unknown and he was very lucky to have had all the help and support he got,” she said.
“He is a very happy boy who tries his very best not to let his disability stop him from keeping up with his two older siblings and his friends.”
Last year, American Romanchuk, 22, won the Boston, London, Chicago and New York Marathons.
The only man to beat him in the past 18 months, Switzerland’s Marcel Hug, is among the field, along with eight-time London champion David Weir.
Switzerland’s Schar, 35, is also the world record holder.
She had won nine major marathon races in a row before missing March’s 2020 Tokyo Marathon.
Two-time London Marathon champion, British record holder and 2012 Paralympic silver medallist Shelly Woods makes her first return to the event in four years following the birth of her son, Leo.
The wheelchair races, along with the men’s and women’s elite-only races, will take place on a bio-secure closed course amid the coronavirus pandemic.
The route will consist of laps of about 1.5 miles, taking in The Mall, Horse Guards Parade, Birdcage Walk and Buckingham Palace.
Just 36% of parents plan to send their deaf child to school if face masks are introduced, new survey shows.
The National Deaf Children’s Society says the Government has placed parents in an impossible position and must take action now.
“Every child the same right to a world class education and this does not change just because you are deaf”, the charity says.
Case study: “I won’t be able to understand what my teacher is saying.”
Just one in three deaf children across the UK are likely to be in school if facemasks are introduced, a new survey shows.
The research, carried out by the National Deaf Children’s Society among 800 parents of deaf children, shows that just 36% were likely to send their child to school if teachers were asked to wear face masks. A further one in five (19%) were uncertain about what they would do.
Governments across the UK now require face coverings in communal areas in secondary schools or colleges, or will allow schools and colleges to make them compulsory. Whilst face coverings are not currently recommended in classrooms, teachers can choose to wear them.
After dramatic changes in Government policy across the nations, the charity, parents and deaf pupils across the country are now extremely concerned about the lack of clarity and feel this is a slippery slope towards face masks in classrooms – a move some schools have already made.
The National Deaf Children’s Society says that the UK Government has an immediate responsibility to put in place steps for the thousands of deaf children who will be affected by this policy change so that no deaf child is left behind.
The charity also warned that schools and colleges have a legal duty to make sure every child can access their education, meaning they must make every reasonable adjustment necessary to make sure face masks don’t exclude or isolate deaf students.
Ian Noon, Chief Policy Advisor at the National Deaf Children’s Society, said:
“In the decades I’ve worked in education policy, I’ve never seen a policy roll-out that’s happened so quickly and caused so much fear, worry and anguish for deaf students and their families.
“Safety must be the number one priority, but parents will have an agonising choice if face masks are worn in classrooms. Either they send their child to school to face isolation, loneliness and a daily battle to understand their teacher, or they get fined for keeping them at home.
“Every child has the same right to a world class education, so the Government must buy and distribute clear face masks to schools with deaf pupils. We also need more investment in transformational technology to make sure every individual child is getting the tailored support they need to succeed.
“Deaf children are already facing the challenge of their educational lifetimes to catch-up after lockdown and school closures. They cannot be let down yet again.”
Polly, 15, from London, is severely to profoundly deaf.
“As I’m going into Year 11 in September, I’m especially concerned about face masks in schools. I’ve already missed most of my first year of GCSEs because of COVID-19 and I worry lots of my learning next year will be missed because of face masks.
“I use a radio aid in lessons, but I still rely on lip reading and speech clarity to learn effectively. Face masks remove both of these options and it means I won’t be able to understand what my teacher is saying.
“There’s also a possibility that pupils will be asked to wear face masks in communal areas, which is an even bigger issue because the levels of background noise already make it extremely difficult for me, or any deaf person, to have a conversation. It will mean I can’t lip read and can’t follow what my friends are saying, which could lead to me feeling isolated, something no young person needs after months of lockdown.
“I understand why teaching unions are standing up for teachers’ rights and campaigning for face masks in schools. I just want people to understand the impact on deaf young people before any decisions are made.”
James Partridge, who has died aged 67 from cancer, did much to help people with facial disfigurements live with pride and to transform public attitudes. As a burns survivor himself from a car fire, he pioneered the movement for face equality by founding the organisations Changing Faces and Face Equality International.
In December 1970 he had just accepted a place at Oxford University after studying at Clifton college, Bristol. But severe burns to his face and much of his body necessitated five months in hospital and a further five years of complex surgeries.
From despair in the aftermath of the accident, James gradually rediscovered hope and the beginnings of a way forward. He took his degree in philosophy, politics and economics at University College, Oxford, graduating in 1975. Friends there were very supportive, and he learned techniques for coping with intrusive attention: “Keep your eyes looking forward, do not let your chin drop, sanction the staring without reacting to it.”
Then he took an MSc in medical demography, relating disease and mortality to the structures of populations, at the London School of Hygiene and Tropical Medicine. In parallel came his first job, as a research assistant in health economics at St Thomas’ hospital in London. At his interview, one of the panel said: “I see you have had a lot of plastic surgery. Do you think you will be needing some more?” James quickly replied: “Why – do you think I need more?”
In 1978 he married Carrie (Caroline) Schofield. After a spell as a research fellow at Guy’s hospital, in 1979 he moved to Carrie’s native Guernsey to run a farm with her, and later also worked as an economics teacher at the Ladies college, St Peter Port. In 1990 his book Changing Faces: The Challenge of Facial Disfigurement appeared, and two years later he founded Changing Faces, which became the UK’s leading charity for anyone with a scar, mark or condition that affects their appearance; this is more than 500,000 people in the UK alone.
Its approach depends on providing specialist psychosocial support and to lead the way in campaigning for face equality – the fair and equal treatment of all, irrespective of appearance. James’s campaigns led to ensuring that facial disfigurement was included in the Disability Discrimination Act 1995 and more recently in the 2010 Equality Act.
An influential figure in the disability sector, he co-created a unique awareness course called Dining With a Difference, introducing corporate chief executives and their boards to disability opinion formers.
James believed that professionals played a key role in helping people adjust to their changed appearance; whether it was surgeons, doctors, teachers or HR departments, they all needed to become skilled in creating a society where face equality was at its heart.
He led Changing Faces for 25 years, building up a germ of an idea to an organisation with far-reaching international impact. As a former treasurer of Changing Faces and a friend, I found James generous, demanding and loyal.
Persistent in asking for what was needed, he deployed an irresistible charm. When the TV series Downton Abbey ran a storyline about a first world war burns victim that jarred, James immediately got in touch. He did so with such grace that the cast all offered their unqualified support and hosted two wonderful fund-raising evenings.
He enabled many people whose inclination might have been to hide from the world to find confidence and to be visible. In 2009, he read the lunchtime television news bulletin on Channel 5 for a week as part of the charity’s campaign work. “I live with my very distinctive face with pride,” he said. His ambition was for all those with some sort of facial difference to feel the same.
Born in Chipping Sodbury, Wiltshire, and brought up in Flax Bourton, near Bristol, James was the son of Sir John Partridge, a chairman of the Imperial Tobacco Group, and his wife Johnnie (Joan, nee Johnson). Family life was vitally important to James, and he imbued his three children with his own drive and can-do philosophy.
As farmers, he and Carrie started with organic vegetables, then gradually built up a dairy herd of pedigree Guernsey cows. James brought his customary passion to the boards of many island organisations, including the Business Disability Forum.
The media round that accompanied the Changing Faces book brought James into contact with Nicola Rumsey of the University of the West of England, Bristol, when they were both guests on Gloria Hunniford’s programme on Radio 2. They found that they had similar ideas, and James developed programmes with the NHS, businesses and the government. From these came the development of the charity, and James’s family moved to Redland, Bristol.
A Changing Faces research unit was established at UWE Bristol in 1992, and it led to the creation six years later of the Centre for Appearance Research. James received honorary doctorates from UWE Bristol in 1999 and Bristol University in 2005. In 2002 he was appointed OBE.
His understanding of the power of collective action led him in 2018 to launch Face Equality International, and it now has 38 member organisations around the world. By this time he was undergoing cancer treatment, but still hosted its first conference. This year he published his second book, Face It: Facial Disfigurement and My Fight For Face Equality – part memoir, part manual and part manifesto for change.
James is survived by Carrie, their children, Simon, Charlotte and Harriet, six grandchildren and his sisters, Alison and Clare.
• James Richard John Partridge, disability rights campaigner and organiser, born 30 October 1952; died 16 August 2020
Japanese PM Shinzo Abe has announced his resignation for health reasons.
He said he did not want his illness to get in the way of decision making, and apologised to the Japanese people for failing to complete his term in office.
The 65 year old has suffered for many years from ulcerative colitis, an inflammatory bowel disease, but he said his condition had worsened recently.
Last year, he became Japan’s longest serving prime minister. His current period in office began in 2012.
In 2007 he resigned abruptly from an earlier term as prime minister because of his struggles with ulcerative colitis, a chronic condition that he has lived with since he was a teenager.
Mr Abe has a reputation as a staunch conservative and nationalist, and for stimulating growth with his aggressive economic policy known as “Abenomics”.
He has strengthened Japan’s defences and boosted military spending, but has been unable to revise the constitution’s pacifist Article 9, which bans a standing army for anything other than self-defence.
What did Mr Abe say?
The prime minister said his health started to decline as his ulcerative colitis made a resurgence around the middle of July.
He was now receiving a new treatment for the condition which had to be administered on a regular basis and would not give him enough time to carry out his prime ministerial functions, he added.
He said he could not make any mistakes in terms of important decision making, and therefore had decided to step down.
“I made a judgement I should not continue my job as a prime minister,” he said.
“I would like to sincerely apologise to the people of Japan for leaving my post with one year left in my term of office, and amid the coronavirus woes, while various policies are still in the process of being implemented,” he added, making a bow.
Stability and scandal
By Yuko Kato, Digital editor, BBC News Japan
Prime Minister Abe has long suffered from chronic ulcerative colitis. The disease forced him to resign in 2007 – the first time he headed the government.
Now, after weeks of speculation about him being absent from the public eye despite a worrying uptick in Japan’s coronavirus cases, he is resigning yet again due to the same illness.
As the longest-serving Japanese prime minister, he leaves behind a legacy of stability and a strong centralised power base that allowed forceful stimulus policies to revive the economy. He also improved relations with the US by courting President Donald Trump, often on the golf course.
Yet his government was also mired in scandal, including talk of favouritism and wilful destruction of public records. When the pandemic struck, his responses were often criticised as being slow, ineffective, and out of touch.
And perhaps importantly for Mr Abe, his cherished – and highly controversial – wish to revise Japan’s pacifist constitution under his watch, has come to naught, at least for now.
What happens now?
It is not clear whether Mr Abe’s resignation is immediate, or whether he will remain in post until a successor is chosen.
Under Japanese law, an acting prime minister would step in temporarily if Mr Abe were unable to perform his role, with no limits on how long they can stay in post.
Deputy Prime Minister Taro Aso, who is also finance minister, is first in line, followed by Chief Cabinet Secretary Yoshihide Suga.
An acting prime minister cannot call a snap election but they lead on other matters such as treaties and budgets until a new party leader and premier is chosen.
Whether or not Mr Abe remains in post for now, his announcement will have automatically triggered a vote within his party to replace him as president.
This election would be followed by a parliamentary vote to elect a new prime minister.
The winner would hold the post until the end of Mr Abe’s term in September 2021.
Presumably, the makers of this documentary about Paralympic athletes were expecting its release to coincide with the Tokyo games this year, only for them to be postponed because of Covid-19. Hopefully, this partly makes up for the postponement, given that it celebrates the Paralympics and the fortitude and determination of these differently abled athletes, each of whom has a compelling story to tell.
At one point, the charismatic Italian fencing champion Bebe Vio observes that when you see athletes at the Olympics waiting to compete, it often looks as if they all have the same kind of body. Paralympics athletes, on the other hand, each look dramatically different from each other: some have one leg, some have no legs, some have all their limbs but can’t walk, and so on. That range and variety is reflected in the personal histories recounted here.
Some of the athletes were born this way, while others lost limbs due to childhood disease, accidents or even, in the case of runner and long-jumper Jean Baptise Alaize, from injuries caused by machetes during the Burundi civil war. Only the most callous could resist welling up as Alaize describes seeing his own mother killed in front of him when he was three years old, and how he coped with the trauma by learning to run. British runner Jonnie Peacock is a more jovial figure but just as impressive. Indeed, they are all very impressive.
That said, the film would have been more effective if its relentlessly uplifting score didn’t keep figuratively prodding the viewer in the chest, telling us to feel moved, dammit. Likewise, the editing is annoyingly frenetic at times, and you long for a more measured approach that would allow you to appreciate the athletes’ skills, instead of seeing their prowess chopped up into tiny snippets of footage.
A disabled man was knocked out of his wheelchair and left unconscious in a “scary” attack during a night out.
Karl Dean, who has cerebral palsy, was on his way home from The Bank pub when he was assaulted on Holderness Road in Hull, at about 23:30 on Sunday.
His sister Karen Carroll said he was left concussed with a “nasty gash on his head” after he was “pulled out of the wheelchair from behind”.
A 20-year-old man from Hull was arrested on Wednesday evening.
Mr Dean said the attack “won’t stop me from going out”.
Ms Carroll said her brother had seen the perpetrator run off before two friends helped him back in his wheelchair and took him home.
“I was just shocked,” she said. “He can’t defend himself, why would you pick on him? He was really shook up, he’s scared.”
She said the attack had also left her brother without a voice as the talking device installed on his wheelchair had been damaged, leaving him unable to communicate.
“He’s got to get someone to speak for him because he’s kind of lost his voice.”
She said the head injury also prevented him from using a “head-pointer”, which allows him to use the computer.
Mr Dean said the attack will not prevent him going out to see his friends at the pub on Sunday evenings.
He appealed to the man who carried out the attack to hand himself in.
“Why did he do it to me? It could be worse next time.”
Humberside Police said a man had been arrested in connection with the assault of a vulnerable disabled man.
Supt Matthew Peach said: “The man will be questioned in relation to the incident where the victim was pushed out of his wheelchair causing not only facial injuries but severe distress to him.
“Officers continue to support the victim who is being very supportive of our investigation and we also want to thank the public for their messages of support and well wishes for the victim.”
Totally outrageous that I’ve had to spend out on a body camera because a small minority of people think it’s funny to go up and abuse people for their disability. My advice to anyone is don’t do what I do, ignore it and walk on for safety. The journalist in me challenges. https://t.co/p7nGAQO0oF
While not all students are happy about the shift to online learning this year, it’s widely seen as good news for the nearly 100,000 disabled students studying at English unis. “We’ve been asking universities for years to study online,” says Aleksandra Mroczek, a disabled second-year journalist student at Newcastle University.
Sana Ali, wellbeing officer at the University of Leicester’s students’ union, says that although the opportunity to study online will be welcomed, this means that students will be more reliant on tech than before. Universities will need to provide access to reliable hardware for those who can’t afford it. Mroczek, who uses specialist software such as Adobe Premiere, has already invested in a new laptop that can run the programs, but this won’t be possible for all students.
If you have a disability, rest assured that all universities will put a support plan in place. This will include letting the relevant school know about requirements that need to be met to ensure you’re given the same tuition. This includes establishing deadlines for assessed work, and the possibility of extensions based on your needs. The uni will also check in regularly with you to make sure you’re being given all the support you need.
At Ali’s university, Leicester, there’s a specialist accessibility centre, which runs meetings with new students to identify their needs, whether that includes a support worker, or extra programs installed on their computers such as screen readers. At Newcastle, Mroczek received an email before arriving on campus from a student disability adviser. Some unis will contact you first, but if you don’t hear from them make sure you reach out.
“Disabled students should do the best they can to understand the support that they require and be clear to institutions on this,” advises a spokesperson for the National Union of Students. “We would advise any disabled student who doesn’t feel that they are getting the support they require to contact their students’ union.”
When it comes to socialising during the pandemic, there are silver linings for disabled students. Despite big advances in recent years, a lot of traditional student activities haven’t always been as inclusive as they should be. The move online may allow students to participate more frequently and readily in events and socials held over Zoom or Teams. “It’s important, now we’ve explored the digital realm, we should continue for our disabled students,” says Ali. “When we get back on to campus, people will forget that it’s a necessity for some.”
Britain’s US Open hopefuls will return to the match court for the first time since before the coronavirus pandemic at the LTA Wheelchair Tennis Series.
Paralympic medallists Alfie Hewett, Gordon Reid, Jordanne Whiley and Lucy Shuker will be among those competing on 1-2 September.
The tournament at the National Tennis Centre has been developed as a warm-up to the New York Grand Slam.
It will be streamed live on the BBC iPlayer and BBC Sport website and app.
The BBC Red Button will also show most of the action across both days.
“I can’t wait to get back out playing matches again after what has been a really challenging time for so many of us the last few months,” said defending US Open singles and doubles champion Hewett.
Scott Lloyd, chief executive of the LTA, added: “Great Britain has had tremendous success in wheelchair tennis in recent years and the LTA Wheelchair Tennis Series will be vital in helping our players prepare for their return to international competition, including at the US Open next month.”
Also featuring in the men’s and women’s draws at the behind-closed-doors tournament will be Dermot Bailey and Louise Hunt as they also prepare for the return of the Wheelchair Tennis World Tour on 16 September.
The US Open wheelchair tennis tournament will take place from 10 to 13 September at Flushing Meadows.
There’s no easy way to say this and actually it doesn’t even feel real writing this, but here goes. Earlier this year I was diagnosed with breast cancer and a couple of weeks ago I received the devastating news that the cancer has advanced to other parts of my body.
I’m currently undergoing weekly chemotherapy sessions and I am fighting as hard as I possibly can. I understand this might be shocking to read on social media and that really isn’t my intention.
But last week it was mentioned online that I had been seen in hospital, so I feel now is the time to let people know what’s going on and this is the best way I can think of to do so.
My amazing mum, family and close friends are helping me through this, and I want to say a thank you to the wonderful NHS doctors and nurses who have been and continue to be heroes. I am doing my very best to keep positive and will keep you updated here with how I’m getting on.
Same Difference has been asked to publicise Access Rating. This new app lets users rate and discuss disability access in bars, hotels and restaurants across the UK.
With lockdown ending, disabled people need more support than ever to leave their homes and enjoy themselves. An app that rates accessibility seems more important than ever to us now.
Head2Head Sensory Theatre, a specialist theatre charity from Ashtead in Surrey have discovered that the current lockdown has actually enabled them to connect with a much wider audience. The charity, which normally spends the majority of the year developing and touring shows for disabled people of all ages, has had to rethink how to reach its core audience during lockdown. After much thought they decided to put their latest show online as it was impossible to take it on the road. The decision has paid off as their specially tailored shows have now been viewed by families not only across the UK but around the world. With this in mind, the charity has decided that now is the perfect time to focus on raising funds in order to create a purpose-built hub from which to reach even more families.
Since its inception in 2006, it has been the dream of the charity and its founders to one day develop a permanent, uniquely designed base from which to produce their ground-breaking work. Head2Head are about to launch a fund raising campaign to realise this dream. A permanent base will enable the company to reach even more disabled young people who have never had the opportunity to experience the wonder of theatre in its many forms. The vision of the charity is to be able to provide an innovative, educational, arts-focussed space that will include a sensory garden, dance studio, theatre space and life skills arena (for people transitioning from special school education) as part of its remit.
“As part of our on-line performances viewers are encouraged to go on a treasure hunt to find household items that will make the show interactive and sensory. In addition, we have launched sessions hosted on Zoom that are linked to past productions and presented by familiar characters. These have been very popular with families and children have been able to explore the beach, organise a tea party and share the adventures of Mr Toad – all from the comfort and safety of their own homes. The sessions allow the children to enjoy messy multi-sensory play, songs, and chants. Activities have been supported by advance packs, so that families and children can prepare for these immersive experiences and get the most from them.
As one parent said, “We’ve been shielding since March and haven’t been outside in 20 weeks. Things are ‘going back to normal’ (apparently) but we just don’t feel it’s safe enough for our special family and we just can’t risk it. We’ve been feeling very left behind and alone. We are so grateful for an exciting accessible activity to look forward to, thanks to our favourite people at Head2Head!”
We are continually looking at ways to adapt our work and provide more for the families that depend upon us.”
The National Deaf Children’s Society has responded to the idea of face masks being used in schools and colleges.
Ian Noon, Chief Policy Advisor at the National Deaf Children’s Society, said:
“Face masks in education would have serious consequences for the UK’s 50,000 deaf children. For many, there may be little benefit in even attending school or college because they won’t understand their teachers and classmates, with loneliness and isolation a tragic result.
“Public health must always be the priority, so if face masks are introduced, schools and colleges must be ready to meet deaf pupils’ needs by investing in clear face masks, making every reasonable adjustment possible and urgently discussing the best way forward with specialist teachers, parents and deaf pupils themselves.
“Education is a right, not a privilege, and this does not change because you’re deaf.”
Senior coroner Chinyere Inyama said doctors had recently prescribed Ms Freeman antidepressant tablets.
Mr Inyama said: “His mother called a friend in the early hours to state to the friend that she killed her son.”
He said the mother and her friend went to Acton police station in west London and told them what had happened.
The coroner said it appeared Dylan had been administered a sleeping aid.
A sponge was then placed in his mouth, tied with a strap.
Dylan had autism, Cohen syndrome – which is linked to abnormalities on many parts of the body – and other issues.
Dylan’s father, celebrity photographer Dean Freeman, last week described his son as “a beautiful, bright, inquisitive and artistic child who loved to travel, visit art galleries and swim”.
His body was identified four days later by his headteacher.
Mr Inyama gave restriction of the airways as the preliminary cause of death.
There was no other evidence of injuries caused by assault or restraint.
Mr Inyama adjourned the inquest until March 2021, pending the outcome of any legal proceedings.
Ms Freeman is due to appear for a plea and trial preparation hearing at the Old Bailey on 4 November.
Holly Girven, 23, had applied for a job in Sheffield working for a company which provides legal services for BT.
Ms Girven, from North Lincolnshire, asked about wheelchair access but says her online interview was then cancelled as the office was not accessible.
BT said it was “conducting a full investigation”, although the law firm has not yet commented.
Ms Girven said she also had a request to work remotely turned down and described her experience as “upsetting”.
“They had seen my CV,” she said.
“They said… we would like to interview you and then to be rejected for something completely out of my control just seemed really unfair.”
‘People really shocked’
Ms Girven is now calling for a requirement that job adverts should include information such as wheelchair access and whether remote and flexible working is possible.
In a statement BT said: “We take these allegations, and our equal opportunity policies, very seriously, and we expect everyone working with BT to comply with these policies. We’re concerned to hear any allegations where this may not have been the case.”
“We’re conducting a full investigation and will ensure that Holly is kept updated on the progress of that investigation.”
Ms Girven said she was speaking out to raise awareness about the issue.
“When I spoke to people about it a lot of people were really shocked that that still happens,” she said.
“But then speaking to other wheelchair users it’s not a completely uncommon experience.”
Some brilliant news and a brilliant piece of progress that deserves to be celebrated!
Africa is to be declared free from wild polio by the independent body, the Africa Regional Certification Commission.
Polio usually affects children under five, sometimes leading to irreversible paralysis. Death can occur when breathing muscles are affected by the paralysis.
There is no cure but the polio vaccine protects children for life.
The disease is now only found in Afghanistan and Pakistan.
Nigeria is the last African country to be declared free from wild polio, having accounted for more than half of all global cases less than a decade ago.
What is polio and has it now been eradicated in Africa?
Polio is a virus which spreads from person to person, usually through contaminated water. It can lead to paralysis by attacking the nervous system.
Two out of three strains of wild polio virus have been eradicated worldwide. On Tuesday, Africa is to be declared free of the last remaining strain of wild poliovirus.
More than 95% of Africa’s population has now been immunised. This was one of the conditions that the Africa Regional Certification Commission set before declaring the continent free from wild polio.
Now only the vaccine-derived polio virus remains in Africa.
This is a rare form of the virus that mutates from the oral polio vaccine and can then spread to under-immunised communities.
The World Health Organization (WHO) has identified a number of these cases in Nigeria, the Democratic Republic of the Congo, Central African Republic and Angola.
How did Africa eliminate wild polio?
Without a cure a vaccine developed in 1952 by Dr Jonas Salk gave hope that children could be protected from the disease. In 1961, Albert Sabin pioneered the oral polio vaccine which has been used in most national immunisation programmes around the world.
In 1996 poliovirus paralysed more than 75,000 children across the continent – every country was affected.
That year Nelson Mandela launched the “Kick Polio Out of Africa” programme, mobilising millions of health workers who went village-to-village to hand-deliver vaccines.
Since 1996 nine billion oral polio vaccines have been provided, averting an estimated 1.8 million cases of wild poliovirus.
What have the challenges been?
The last communities at risk of polio live in some of the most complicated places to deliver immunisation campaigns.
Nigeria is the last country in Africa to have reported a case of wild polio – in Borno state in Nigeria’s remote north-east, and the epicentre of the Boko Haram insurrection, in 2016.
At the time it was a frustrating set-back as the country had made huge progress and had gone two years without any cases being identified.
Outside Nigeria, the last place to have seen a case of polio was in the Puntland region of Somalia in 2014.
Conflict with the Islamist militant group Boko Haram has made parts of Nigeria particularly difficult to reach, Borno state in particular.
More than two million people have been displaced by the fighting. Frontline workers, 95% of whom are women, managed to navigate areas of conflict like Lake Chad by boat and deliver vaccines to remote communities.
Widespread rumours and misinformation about the vaccine have also slowed down immunisation efforts.
In 2003, Kano and a number of other northern states suspended immunisations following reports by Muslim religious leaders that the vaccine was contaminated with an anti-fertility agent as part of an American plot to make Muslim women infertile. Laboratory tests by Nigerian scientists dismissed the accusations.
Vaccine campaigns resumed the following year, but the rumours persisted. In 2013 nine female polio vaccinators were killed in two shootings thought to be carried out by Boko Haram at health centres in Kano.
It has taken decades to achieve eradication and overcome suspicion around the vaccine.
How polio survivors made a difference
Winning the trust of communities has been key.
Misbahu Lawan Didi, president of the Nigerian Polio Survivors Association, says that the role of survivors has been crucial in persuading people to accept the campaign.
Image caption Misbahu Lawan Didi has worked hard to persuade sceptical parents to allow their children to have the vaccine
“Many rejected the polio vaccine, but they see how much we struggle to reach them, sometimes crawling large distances, to speak to them. We ask them: ‘Don’t you think it is important for you to protect you child not to be like us?'”
From polio survivors, to traditional and religious leaders, school teachers, parents, volunteers and health workers, a huge coalition developed to defeat polio. Working together they travelled to remote communities to immunise children.
How serious is polio?
Polio, or poliomyelitis, mainly affects children aged under five.
Initial symptoms include fever, fatigue, headache, vomiting, stiffness of the neck and pains in the limbs. It also invades the nervous system and can cause total paralysis in a matter of hours.
One in 200 infections leads to irreversible paralysis. Among those paralysed, 5% to 10% of people die when their breathing muscles become immobilised.
Could wild polio return?
Polio can be easily imported into a country that is polio free and from there it can spread rapidly among under-immunised populations.
This happened in Angola, which despite decades of civil war, defeated polio in 2001.
The country remained free from polio for four years until 2005 when a number of cases were thought to have been brought in from outside the country.
The WHO says that it is important countries remain vigilant and avoid complacency until there is global eradication.
If they let down their defence by failing to vaccinate, then wild polio could once again begin to spread quickly.
For all types of polio to be eliminated, including vaccine-derived polio, vaccination efforts will need to continue alongside surveillance, to protect children from being paralysed by the disease in the future.
Lockdown confined everyone to their homes but for some disabled people it has continued even as the country opens up.
Vicky Haylott lives near Edinburgh with her husband and three children.
She says her life was pretty normal before lockdown with the “slight complication” that she is blind, as is her husband and eldest son.
Vicky says the family, including seven-year-old twins Blake and Freya, who are fully-sighted, never let their disabilities hold them back.
“It was never a case of ‘we can’t go there because we can’t see’ because if the kids needed to be somewhere we found a way to get there,” she says.
‘We can’t social distance’
However, Vicky says the new public health rules and physical distancing, where the layout of familiar places has fundamentally changed, have caused her problems she has never faced before.
“Coming out of lockdown has been much harder than being in full lockdown,” she says.
“For those of us with no vision, we can’t social distance, so the measures put in place now are impossible for us to adhere to.
“It traps us because the constant nerves and worrying about whether you’re going to accidentally walk into someone or get run over by a bicycle, or not be able to find the queue for a shop.
“I’d have to rely heavily on the children which I’ve never done. They’re my children, I look after them, and I never want them to be my eyes, that’s not their job in life at all.”
She says people with disabilities have learned their own methods to navigate their way through the world.
“If those strategies are taken away very suddenly, that person can then be faced with an unmanageable situation,” she says.
“It’s not just difficult for a blind person to social distance, it is actually not possible if you are completely blind.”
‘I feel like I’m on a different planet’
Post-lockdown life has raised many questions for Vicky, including questioning her place in the world.
She says she has never felt so blind before and has less confidence as a result of the lockdown changes.
Vicky says she had never really been “fussed” about not being able to see.
“It never made me feel too far behind everyone else,” she says. “But now I feel as if I’m not only behind everyone else but I’m on a different planet.
“Whilst social distancing continues I would never advise any of my blind friends to have children. Whereas before, I was very much an advocate for it.”
Katy Orr is 14 and lives in Ayrshire.
Her sight is limited to some peripheral vision in her left eye.
She too led an active life before lockdown.
Katy loved being outside, walking the dog, helping her gran in the garden, grooming and riding horses. The lockdown world has impacted on Katy’s self-confidence.
“I’m actually terrified now to go out,” she says. “Now I don’t know where I’m going, whether people are going to get into my two metres or I’m going to get in theirs and if I do I don’t know how they are going to react.
“So I’m absolutely terrified now going to the shops.”
‘It’s wiped out her independence’
Mum Lindsay says Katy was enthusiastic about being independent before lockdown and would be roaming around a shop on her own. Now Katy barely leaves her side.
“It’s wiped out her independence,” her mum says. “The mental impact of losing that is crippling to her. And you can really see it in her behaviour. It’s sad to see.”
Sally Witcher, chief executive of Inclusion Scotland, says not enough consideration was given to disabled people and their complex needs when lockdown came into effect, and this is having a continued impact now we are coming out of it.
“Clearly this has not been an easy time for everyone, but the situation that very many disabled people have found themselves in has been in a whole other league of awfulness,” she says.
“Disabled people have been abandoned. They feel forgotten and the responses that have sometimes been developed to support people haven’t helped, or haven’t been adequate, and haven’t recognised the needs that disabled people have.”
The International Paralympic Committee’s decision to declare some wheelchair basketball players ineligible for the Tokyo Paralympics “grossly violates the athletes’ rights”, says Global Athlete.
The international athlete-led movement has called on the IPC to allow all team members who qualified for Tokyo 2020 to play at next year’s rescheduled Games.
In doing so, the IPC required the International Wheelchair Basketball Federation (IWBF) to reclassify players and, as a result, exclude some who no longer met the new criteria.
The IPC warned that failure by the IWBF to act could result in the sport being removed from future Paralympics, including next year’s rescheduled Tokyo Games.
“Athlete groups have taken notice of the IPC’s decision to change athlete classification rules at the end of a Paralympic cycle, resulting in a direct and drastic impact on athletes,” Global Athlete said in an open letter.
“These athletes have sacrificed and worked tirelessly for years to qualify for the 2020 Tokyo Games.
“The unilateral decision made by the IPC to remove players from their teams who rightfully qualified for the Tokyo 2020 Paralympics is illegal and violates the athletes’ fundamental rights.
“A broad consensus exists among athletes and legal advisors internationally that the belated reassessment of certain players is unlawful and grossly violates the athletes’ rights. Thus, the IPC’s attempts need to be vigorously opposed, and the issue must be resolved expeditiously.”
In July, Great Britain’s George Bates told BBC Sport how he may have to consider having his leg amputated to continue his international career as he would be deemed ineligible to play by the IPC’s classification code.
Athletes who have a lower limb amputation are among those eligible to compete.
International players are classified between 1.0 (most impaired) and 4.5 (least impaired), and the IPC required all 4.0 and 4.5 players to go through reclassification before Tokyo. Bates was originally classified as a 4.5 player.
In a statement to BBC Sport, the IPC said: “Since the Code was approved in 2015, the IPC has been working with all International Federations to ensure compliance with the Code by the deadline of 1 January 2018.
“Despite our best efforts and continued offers of support, the IWBF has been reluctant to align with the IPC Athlete Classification Code or propose acceptable solutions to the matter.
“No sport is above the rules and in January 2020 the IPC’s frustration with the IWBF reached breaking point. The IPC Governing Board, half of which is made up of former Para athletes, acted with the whole athlete community’s best interests at heart.”
It added that it wanted to “protect the rights of all eligible wheelchair basketball players”.
What is the background?
The IWBF defines eligible impairments differently to those agreed by the IPC general assembly in 2015 and defined in the IPC athlete classification code.
The IPC believes this has led to athletes competing who have impairments which are not covered by the IPC code. It wants all athletes due to compete in Tokyo in the 4.0 and 4.5 classes – for the least-impaired athletes – to have their eligibility reassessed to decide whether they can play at the Games.
Those whose impairments are not eligible under the IPC code will not be allowed to compete.
The IPC says if the requested action plan is not being complied with, the sport could be excluded from the Tokyo Games. It has also been excluded from the Paris 2024 Games and will only be brought back in if the IWBF becomes fully compliant with the IPC’s regulations by no later than the end of August 2021.
Wheelchair basketball has been part of the Paralympic movement since the first Games in Rome in 1960. It is the third-biggest at the Games, with 264 athletes due to compete in Tokyo across male and female competitions.
Five-time Paralympic champion wheelchair racer Hannah Cockroft talks to BBC Breakfast’s Sally Nugent about the Tokyo Paralympic Games being rescheduled and the impact of the coronavirus pandemic on her and her sport.
During lockdown, a very good friend of mine called me out of the blue. We were talking about this strange new world and the sadness we felt about all the lives lost to this hideous virus.
Then she said something that threw me at first, although now it makes complete sense.
My friend deals with anxiety on a daily basis and she explained to me how lockdown was doing wonders for her. She felt much less anxious. She liked being told what she could and couldn’t do. My friend felt safe at home with her family, happy to play by someone else’s rules for a time… it made the pressures of her everyday life disappear.
Now most people I spoke to at the time were thrown by the sudden change to our everyday lives. Lockdown piled on the pressure for most people I know and for many deaf and disabled people, there were some very pressing, immediate concerns that needed addressing.
How do we do the things we need to do, to get through each day? Will our personal assistants, who help disabled people with everyday tasks, want to work through lockdown? Do we want them to work? How do we get hold of some personal protective equipment (PPE) for those helping us? How do blind people nip to the shops to get food when they’re unable to socially distance and not all online shopping websites are fully accessible? What about deaf people… how do you lip-read when everyone is wearing a face mask?
These problems impacted many disabled people whether they were told to shield or not.
That brings me on to the not-so-catchy, controversially titled, Extremely Clinically Vulnerable list, made up of more than 2.2 million people. Not all have a disability – this group also included people going through certain cancer treatments, those on immunosuppressants and people with severe asthma, for example.
Everyone on the list was told stay put at home, to not go out, not even for exercise.
You only have to do a quick internet search to get your head around the fact that this list was not without its problems. Many believed they should have been on it. Some were on it when they shouldn’t.
My sister Rachel and I are the perfect example of this. As far as we know we have the same disability, muscular dystrophy. I wasn’t sent an official letter but Rachel was. We think it’s probably because she works too hard, doesn’t take her vitamins and has a habit of letting colds turn into chest infections, whereas I am practically Gwyneth Paltrow.
Despite its well-documented challenges, to put it mildly, the shielding list did bring comfort to many.
But on 1 August, the national shielding schemes ended in England and Scotland, and on 16 August in Wales. And with that went most of the protections the shielding scheme offered.
Despite this, thousands are still in unofficial lockdown because they just don’t feel safe enough to go out.
Carolyn Brathwaite has been isolating with her daughter Azaria and the rest of the family since mid-March because Azaria has an ultra-rare genetic condition called NAA10 syndrome. It’s so rare only a handful of people in the world have it and as a result, very little is known about it.
Azaria has complex disabilities and struggles to understand the world around her. There was no way the family were taking any chances with Covid-19. In fact, the moment Carolyn heard about coronavirus she took both her daughters straight out of school and bulk-ordered all of Azaria’s medication.
Now I know Carolyn, she’s my best mate’s cousin. I’d love to have met up with her in person to talk about shielding – but only immediate family and Azaria’s carer have entered their house since the start of lockdown.
She tells me two of Azaria’s hospital consultants advised Carolyn to shield her daughter until there’s a vaccine.
When I ask her to explain what that’s like – to carry on in isolation, albeit unofficially, with bare minimum support, whilst others enjoy greater freedoms – she says: “I think everyone has these worries about this virus but the extra step and intensity that we have to protect her is really hard. Nothing comes into the house until we have cleaned it or quarantined some things we don’t need to use straight away.”
I’ve seen what Carolyn does. She sent us home videos of her spending hours scrubbing her food shop on her doorstep. She won’t allow a box of cereal to enter her home until every inch of it has been sanitised.
What makes life so tough now is the family are without all the support and therapies Azaria needs and the pressures of constant care, coupled with the inability to explain to your daughter what’s going on in the world, why it’s suddenly changed, why she’s no longer going to school, to the park for a swing. Why her therapists are all on a computer…
Carolyn tells me it was “without a doubt one of the hardest periods they’ve been through as a family”.
And there’s no real end in sight. As the world starts to open up, they remain isolated. And that’s hard.
Like many people who were told to shield, the food parcels were a huge help, especially in the early days when there was more chance of me running a marathon than of getting an online food slot.
But what really made a difference to Carolyn and her family was that being an official shielder, meant that her hubby was able stop going to work and for a short time, Carolyn felt safe.
Now shielding’s over, however, the family have to make their own decisions on how best to stay safe. That support has gone. Carolyn’s husband has returned to work, but there is still a choice to be made about whether the girls should go back to school.
And they’re not alone…
I also meet a brilliantly positive young man called Ross Lannon. He kept himself thoroughly entertained during lockdown by creating a coronavirus parody of Vanessa Carlton’s hit song A Thousand Miles. It’s a lot of fun. As is he.
Ross has spinal muscular atrophy and was sent an official shielding letter. Even though shielding has ended, he still doesn’t feel safe enough to start venturing out. The self-confessed “foodie” would love to go to a restaurant, but the fluctuating infection rates don’t fill him with enough confidence to eat out.
The end of shielding, however, brought about bigger problems for Ross. He was forced to make a difficult decision – go back to work and risk his health, or leave his job and stay safe.
He tells me: “It’s the worst position I think anyone could be in because as a disabled person I pride myself on being employed for the past eight years…. Without any protection now with shielding stopping I don’t really have a leg to stand on, it was either you go back to work or you leave.” In the end he felt he had no choice other than to leave.
The former chairman of the Equality and Human Rights Commission, David Isaac, felt so strongly about this that he spoke to me just before he stood down.
‘I am anxious that the shielding provisions came to an end very abruptly,” he said.
“There’s not enough info about the future, the food parcels have stopped and we urgently need to address that because we can’t leave that group of people isolated and high and dry.”
The UK government has defended its decision to pause shielding. It told us average infection rates remain sufficiently low and that its response has been proportionate.
It brings me back to what my friend with anxiety told me -in extraordinarily difficult times, for some, there’s a comfort in being told what you can and can’t do. Disabled people are used to risk-assessing their everyday lives but with something as terrifying as a virus that could end your life, many would welcome some more guidance and a system in place to help. To keep you fed, to back you up if you can’t work.
For the many thousands still self-isolating, the only thing they can rely on is their instincts. As Carolyn says, “It’s a really hard balance you know you find yourself weighing up quality of life versus risk to life.”
She’s not alone in thinking this and like many others, until there’s a vaccine, there’s no end in sight.
Writer with Cerebral Palsy, Rachel Clare, releases second beautifully written novel charting the journeys of two brothers who are bound by a promise but torn apart by war!
Tadeusz and Jacek Lewandowski are the closest of brothers. After the tragedy of losing their mother and with their father in the Polish army, they are raised by their grandfather, a skilled woodcraftsman. They enjoy an idyllic childhood in the Tatra Mountains.
Relying on each other for everything, Tad and Jacek have never been apart. That is, until, the Nazi and Russian armies close in on Poland in September 1939, forcing Tad to leave behind his degree course and everyone he loves to escape across occupied Europe.
Tad’s journey is fraught with danger, but he battles on using the life-skills Jacek taught him growing up. Eventually reaching Blackpool, he joins the Polish Air Force. The war against the Nazis is just beginning and the aftermath of war has a huge impact on the lives of both brothers in more ways than one…
Rachel Clare lives in Lancaster, has a BA (Hons) in English and French, a MA in Modern Languages Research and a Postgraduate Diploma in Newspaper Journalism. She teaches French in a Primary School and has always enjoyed writing. Roses of Marrakech (2018) was her debut novel, inspired by her travels and family history.
Rachel says, “I have been on many holidays to Poland and have wanted to write a novel set there for many years. My mother, who grew up in Blackpool, told me of the strong links between the Polish Air Force in World War II and the town. From my research of that period, I found a lot of interesting facts and places in Blackpool with connections to the airmen and have therefore used them as a basis for this novel.”
It seems this is a big story that should be shared and covered widely. This is the second such story we’ve covered in less than four weeks. We note that Oscar Knight is awaiting the outcome of the first case, George Bates.
A wheelchair basketball player deemed ineligible to play after a rule change says he is considering having his legs amputated.
GB Academy player Oscar Knight, 17, from Plymouth, suffers from complex regional pain syndrome (CRPS).
He said new participation measures did not recognise his “poorly understood” condition and have made him “not the right kind of disabled” to compete.
The International Paralympics Committee (IPC) has been approached for comment.
In January, the committee told wheelchair basketball’s governing body, the IWBF, it needed to change its classification regulations in order to comply with the new code.
Under the IPC’s criteria, pain or hypermobility of joints are not eligible impairments for athletes, but amputated lower limbs are.
Oscar, who has played in three international games for the GB Academy in the last two years, said the “heartbreaking” change meant he was ineligible to play the sport at a senior level.
‘Want to chop my legs off’
He said wheelchair basketball had helped him to come to terms with his condition, which causes persistent severe pain, since he was diagnosed at the age of nine.
“It has brought such great things to my life, and a potential career, but now that’s been taken away,” Oscar said.
Mr Knight said he was “not surprised” by the decision because his condition was so poorly understood.
“I shouldn’t have to amputate my legs to continue in a sport just so I’m the right kind of disabled”, he said.
“It just makes no sense.
“My mental health has been pretty terrible and has made me want to chop them off”.
The teenager said his decision would depend on the outcome of GB player George Bates, who has initiated an appeal against the IPC and is also considering amputation.
“This sport has brought me such happiness and mental stability”, Oscar said.
“Being able to go to a high level in wheelchair basketball was such a driver for me, and to potentially have that taken away is heartbreaking”.
A big thanks from everyone at Same Difference to Lego for launching Braille bricks. This will allow children who need them to feel wanted and included by the rest of the world while they are being used, and other children to learn from an early age that there is nothing wrong with needing to read Braille.
Lego is launching a new version of its plastic bricks featuring braille in seven countries.
The new bricks are the same shape as the regular ones, but the studs on top have been rearranged.
“The bricks are moulded so that the studs on top reflect individual letters and numbers in the braille alphabet while remaining fully compatible with the Lego system,” a statement from the Danish toymaker said.
The bricks also feature a printed version of the symbol or letter.
Lego said it wanted to encourage blind and visually impaired children to explore new ways of learning to read and write.
“With thousands of audio books and computer programmes on the market today, fewer young people are learning braille. Yet individuals with blindness or impaired vision all over the world rely on braille to work, study and enjoy their daily lives to the fullest,” the company said.
The new bricks will be sold first in Brazil, Britain, Denmark, France, Germany, Norway and the US, before being extended to another 13 countries in early 2021.
In 2019, Lego allocated 25% of its earnings to the Lego Foundation, which helps disadvantaged children.
I’m not alone. Over 460 million people worldwide have disabling hearing loss according to the World Health Organization. So how are people who are d/Deaf (lower case refers to the physical condition of deafness, capital D refers to the Deaf community) or hard of hearing surviving mask mandates?
It also makes me wonder, is my mask less safe because of my disability?
The most common mask on the market right now is the ear band, with loops to slip over ears. But not everyone has two ears and some people who are hard of hearing also have difficulty wearing these masks. “They get tangled up in the tubes of my hearing aid,” said Jannie Marshall in Ohio, retired from providing services to developmentally disabled adults. “It’s hell to put masks on, wear them, take them off with hearing aids,” said Meg Day, a poet and assistant professor at Franklin Marshall College in Pennsylvania. “Your hearing aids go flying if you’re not careful … The [mask] elastic has to sit perfectly to not interfere with the hearing aid’s microphone.”
You can attach masks with paperclips or even plastic toys in the back of the head. But ear band masks are not designed to be worn this way, and the fit is very tight, creating tension and headaches. When I tried them, the paperclips got caught in my hair.
The best solution I found are “ear-savers,” strips with toggles to attach mask loops, originally designed for essential workers. It’s not a perfect solution, or a fast one. I have to look in a mirror to ensure the best fit. I have to delegate all door-answering – anything that requires a mask quickly – to my partner, who is hearing. Most of us already panic at unannounced visits during the pandemic, but for people who are hard of hearing, the extra stress is a considerable burden.
The likelihood of me not understanding a masked stranger is high. Callie Adair, a graduate student in social work, told me that “masks make everyone sound more muffled, so even my good hearing days become bad hearing days if I have to go out”.
Evan Adair, an MBA student and Callie’s spouse, says that masks “turned my life around 180 degrees”. Both Callie and Evan use smartphone notepad features to help communicate with strangers, but not everyone has this technology – or the patience to use it.
“People get frustrated because they’re unprepared to communicate via text or paper and pen, so they remove their mask. It’s scary,” Day said. “Every encounter is charged.”
A common occurrence in my experience is that people don’t assume a young-looking person could be hard of hearing. And when I don’t respond, they respond in anger.
“Maintaining social distancing in stores is hard when we can’t hear you coming up behind us,” Callie Adair said. Hearing strangers can mistake a d/Deaf or hard of hearing person’s silence for permission to enter their space.
To get a head start on those situations, I purchased buttons on Etsy with messages such as: Your mask prevents me from reading your lips. Please be patient. But I do worry about issues of safety and vulnerability in announcing my disability to strangers, including the potential for mistreatment, even abuse. d/Deaf and hard of hearing people are more likely than hearing people to be sexually assaulted or experience other violence.
Along with buttons, there is now a market on Etsy for “hearing aid masks” that wrap or tie around the head. One seller, when I reached out to her, told me: “You are the exact reason I have been custom-making masks.”
There are also several kinds and brands of masks with see-through centers, designed to assist in lipreading and American Sign Language (ASL utilizes more than just the hands but the entire body, including facial expressions).
These masks are not without issues. “They fogged up immediately and stuck to your lips and looked, well, kind of scary,” Day said about a vinyl mask. Day prefers ClearMask, a deaf-cofounded company, whose masks are entirely clear, have straps, and a foam seal.
And although some workers are taking the initiative on their own to wear masks with clear centers to assist people, they’re in the minority. I’ve never seen a mask like that in real life – not on retail workers in my neighborhood, not on medical personnel.
“It’s kind of pointless that I have an entire box of these [clear masks] when I’m not the one who needs to be wearing them,” Day said. “My dentist needs a box and my colleagues need a box. Other folks need to play a part in providing access.”
“One thing I really wish the hearing society would know and understand is that communication difficulty increased during the pandemic, and there is nothing we can do to fix it,” Evan Adair said.
As a hard of hearing person, I have never felt more lonely than during mask-mandates. At the same time, I believe hearing people are realizing how much we all rely on facial, physical and other cues to get by. “My heart goes out to everyone who is restricted now and is suffering in isolation. I’m accustomed to it,” Marshall said.
A good reminder for hearing people at all times, not only during a pandemic, is don’t just use your voice to announce your presence – wave, make eye contact. Be open to communicating in different ways with strangers. Realize that not everyone may be exactly like you. And maybe ask your doctors, teachers or co-workers to utilize clear masks or similar products.
When the pandemic is controlled, and the masks come off, I hope hearing people remember how much of the world revolves around community and communicating. I hope they still consider us, who deserve to be heard.
A woman who is exempt from wearing a mask said the abuse she has received while shopping without one has left her afraid to leave the house.
Louise Sharp said she needs to stay uncovered so she can communicate with her daughter who is autistic and would otherwise get distressed.
However, after negative comments from another shopper sparked a panic attack two weeks ago, she can no longer shop.
She said people should be more understanding of those with exemptions.
Ms Sharp told BBC Newcastle she was accosted at her local supermarket in Whitley Bay and when she tried to explain that she was exempt due to both her panic and anxiety disorder as well her daughter’s autism, the person still said she was “selfish”.
She ended up suffering from a panic attack and had to leave.
‘Understand exemptions’
“I haven’t been to any shop since, not once, I don’t have the confidence”, she said.
“It’s not right, I now feel under lockdown more than before.
“People feel they’ve got the authority to question anyone, and I feel more should be done to address the issue of exemption and to give people respect.
“Please understand there are exemptions and respect those exemptions.”
The 10-year-old son of a celebrity photographer allegedly killed by his mother died from restriction of his airways, a court has heard.
Dylan Freeman’s body was discovered in Cumberland Park, Acton, west London, on Sunday.
His mother, 40-year-old Russian national Olga Freeman, has been charged with murder and appeared at the Old Bailey earlier.
At the hearing, Dylan’s cause of death was revealed by prosecutor Joel Smith.
Judge Mark Lucraft QC remanded Mrs Freeman in custody to appear at the Old Bailey again on 4 November.
Dylan’s father Dean Freeman, who was in Spain when his ex-wife allegedly killed their son, paid tribute to him earlier this week.
Mr Freeman, whose work includes campaigns with Bollywood star Deepika Padukone and Hollywood actor Bradley Cooper, said in a statement on Monday: “Dylan was a beautiful, bright, inquisitive and artistic child who loved to travel, visit art galleries and swim.
“We travelled extensively over the years together, spending such memorable time in places including Brazil, France and Spain.
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Same Difference 