Pandemic survey leads to ‘outpouring of fear’ and reports of isolation and crisis

Disabled people have experienced social isolation, cuts to support, and problems accessing food, medicine and information during the pandemic crisis, according to a new survey of hundreds of disabled people.

Comments made by disabled people who took part in the survey – carried out by 14 disabled people’s organisations – were described as an “outpouring of fear, isolation and people in crisis”.

One said they felt “cut off and in a state of despair”, another that “without any support, I’m afraid I will be yet another disabled person statistic who neglected themselves”.

Greater Manchester Disabled People’s Panel conducted the survey to show the impact of the pandemic on disabled people across Greater Manchester.

The results show that, as the panel’s members had predicted, disabled people have been disproportionately affected by the coronavirus crisis.

They have faced “multiple areas of disadvantage, exclusion and unnecessary risk”, while unequal access to food, medical supplies, support and information “created crisis situations for many disabled people, which compounded the issues of the pandemic itself”.

But this impact came on top of “existing structural and societal exclusion, discrimination and inequality”, the panel said.

“The pandemic has not been the great leveller, it has been a stark spotlight on the drastic social, economic and equalities divide in this country,” it added.

The panel concluded in its report: “The disproportionate impact of Covid-19 on disabled people has been significant – not only with regards to accessing food, provisions, information and support, but the drastic impact of the added stress, anxiety and level of self-advocacy needed to try to survive.

“It is unsurprising therefore that 90 per cent of respondents said that the pandemic has had a negative impact on their mental health.”

But it also concluded that this impact was not inevitable or unavoidable, and that through “real, tangible changes we can prevent it from happening again”.

Hundreds of disabled people across Greater Manchester took part in the Greater Manchester Big Disability Survey.

Three-quarters of those who took part were unhappy with the support provided by the government, with one-third saying they believed the government was neglecting disabled people.

One of the respondents said: “I usually do my shopping online [but] due to covid I haven’t been able to get any slots so have had to go to the supermarket and being blind I had to take my dad with me.

“We are both high risk but had no choice but to go out as we could not get a delivery.”

A disabled woman who responded to the survey said she was “housebound” but did not qualify for the government’s shielding list and had not been able to have any food delivered and would soon have to ask for help on a local Facebook group.

She said she was “terrified” of doing this “because it’s incredibly dangerous for a disabled woman living alone to publicly point out to complete strangers that I’m desperate and vulnerable”.

In all, more than 900 respondents across Greater Manchester’s 10 local authority areas took part, including more than 250 who completed an easy read version of the survey.

One of the groups impacted most seriously by the pandemic response, says the report, has been those disabled people who have had to shield from the virus but were not included on the government’s initial list of those said to be “clinically extremely vulnerable” to the virus.

Of those who had support needs but did not receive a letter from the government placing them on the list, one in 10 said they were having none of their needs met, while only one in five said they were having all their needs met, including access to food and medicine.

Nearly a third (31 per cent) of respondents to the standard survey were unaware of the existence of community hubs, set up in boroughs across the country to co-ordinate food parcels, medicine and other support.

Of more than 500 respondents who commented on their need for personal protective equipment, nearly three-fifths (57 per cent) had experienced problems sourcing it.

Among its recommendations, the panel calls for disabled people’s organisations to be involved in all levels of decision-making, and for the government to recognise disabled people’s right to independent living.

It also wants to see all public bodies that provide services to disabled people in Greater Manchester to carry out – with disabled people’s involvement – assessments of the impact on equality of their responses to the pandemic.

And it calls for action to reach those disabled people with no internet access or IT skills due to issues with accessibility or poverty, and to ensure information is provided in an accessible format to all disabled people.

The panel also calls for action to develop a BAME [black, Asian and minority ethnic] disabled people’s organisation (DPO) in Greater Manchester, following an under-representation (eight per cent) of BAME disabled people in the survey responses.

It also calls for a DPO to be set up and funded in each of the four Greater Manchester council areas – Bolton, Bury, Oldham and Trafford – which currently do not have one.

The panel is convened by Greater Manchester Coalition of Disabled People (GMCDP), and its members are all disabled people’s organisations.

Nicola McDonagh, GMCDP’s manager, said the survey results showed a “predictable, unsurprising but most importantly preventable” impact on disabled people.

She said the results had reflected the panel’s “existing experience, knowledge and understanding of how the pandemic and its subsequent lockdown were disproportionately affecting disabled people, leaving many struggling to access food, medicine, personal protective equipment and support”

McDonagh added: “The panel’s message to the government is this: from the onset of this global pandemic, disabled people have faced multiple areas of disadvantage, exclusion and unnecessary risk.

“In order to prevent the same disproportionate and unequal impacts on disabled people during future peaks or crises, the government must prioritise the inclusion of disabled people and disabled people’s organisations in their emergency planning.

“In order to make changes and improvements on wider issues as we ease into the ‘recovery’ period, they must also include disabled people and disabled people’s organisations at all levels of decision-making, and at the beginning rather than at the end.

“Prioritisation must also be given to urgently resourcing and supporting digital inclusion for disabled people, as well as access to mental health services.”

Greater Manchester Disabled People’s Panel  is funded by Greater Manchester mayor Andy Burnham and it aims to shape, challenge and influence policy affecting disabled people across Greater Manchester by advising and consulting with the Greater Manchester Combined Authority (GMCA) he chairs.

Cllr Brenda Warrington, GMCA lead for the age-friendly and equalities portfolio, said: “It’s clear that the coronavirus pandemic has exposed some very stark health and economic inequalities in our country.

“What this report shows is just how damaging that effect can be for disabled people in our communities who might already be feeling marginalised or excluded.

“The report highlights some vitally important concerns, including a need for greater clarity and accessibility of public health information and guidance at a national level.

“At the same time, we recognise there’s also a challenge here for local authorities in Greater Manchester to ensure that our residents are aware of what their councils are doing, and making sure those services are properly accessible to everyone who needs them.

“The panel’s findings have been shared with all of our local authorities here in Greater Manchester, and we will be working with them to very seriously consider the recommendations and address all of the issues raised.”

9 July 2020


Coronavirus: Academics call for urgent inquiry into deaths

A group of academics have called on the government to launch an immediate inquiry into why so many disabled people have died during the COVID-19 pandemic.

The call came in a new report by Oxford University’s Disability Law and Policy Project and its Bonavero Institute of Human Rights, which includes analysis by several disabled academics.

The report – An Affront to Dignity, Inclusion and Equality – concludes that the government’s policy-making has breached its duties to disabled people under both the Equality Act and the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

And it says the inequalities experienced by disabled people have widened during the pandemic.

The report makes 22 recommendations, including a call for an “immediate” review of legislation introduced by the government during the crisis, as well as an inquiry to “understand the scale of COVID-19 related deaths and to examine why this group has carried such a heavy burden” through the pandemic.

It also calls for the government to set up a Response and Recover Group, made up of disabled people and representatives of disabled people’s organisations, to ensure disabled people are “central to decision-making” on the country’s economic and social recovery.

The report points to “conservative” estimates from the Office for National Statistics (ONS) – first reported last month by Disability News Service – which show that disabled women are 2.4 times more likely to die from COVID-19 than disabled women and disabled men 1.9 times more likely to die than non-disabled men, with this rising to 11.3 times for disabled females aged nine to 64 and 6.5 times for disabled males aged nine to 64.

The report also highlights the “social and human rights” failings of the government’s pandemic response, which left many disabled people with high support needs unable to access food without leaving their homes, despite being at significant risk from the virus.

Among the disabled academics who contributed to the report was Professor Anna Lawson, director of The Centre for Disability Studies at the University of Leeds, who said the pandemic had led to two “very significant” cases taken under the Equality Act.

Hundreds of Deaf and disabled people have joined cases against the government – for failing to provide a British Sign Language interpreter at its regular COVID-19 briefings – and the major supermarkets, for their separate failures to make reasonable adjustments under the act.

Professor Jonathan Herring, professor of law at Oxford University, who has himself been shielding during the pandemic, criticised the government’s shielding guidance.

He said: “Partners may not sleep together and should minimise time spent together. Parents should not cuddle their children or hold their hands.

“Comfort must be offered at a two-metre distance. Mealtimes should be solitary.

“The lifestyle promoted is starkly monastic. Disability campaigners have long argued that disabled people are portrayed as isolated, unproductive and sexless. They are now.”

He added: “Requiring people to isolate themselves in this way for months is out of proportion to the risk of associating with members of one’s household.

“Prohibiting physical interaction strikes at our souls.”

Dan Holloway, from the university’s Futures Thinking Network, criticised the government’s “simplistic” messaging around exercise and leaving the home.

He said: “Even when the written guidance had to be clarified to reflect the needs of autistic people under the Equality Act 2010, the messaging remained at odds with it.

“As a result, in real life and across social media, autistic people were shamed. That fear of shame led many not to go out at all.”

Holloway added: “Most damaging to trust between disabled people and institutions has been the speed with which adjustments have been enacted for everyone, such as remote working, that we spent decades being told were not possible.

“What conclusion are we to reach other than we were never valued and what was denied us was a lack of choice?”

Another contributor to the report was Kamran Mallick, chief executive of Disability Rights UK (DR UK), who said that reports from disabled people across the country during the pandemic had highlighted a series of concerns, including receiving unsolicited “do not attempt resuscitation” letters, lack of access to adequate protective equipment and infection control guidance, and problems with access to food.

Another disabled academic, Dr Marie Tidball, co-ordinator of the Disability Law and Policy Project, who edited the report, said: “We need government to produce a disability inclusive response to COVID-19, which draws on the experiences of disabled people and disabled people’s organisations, to mitigate the immediate impacts of the coronavirus crisis, along with its long-term economic and social consequences.”

Last month, she was one of the first to highlight the ONS figures, saying they were “a tragic indictment of the government’s approach to shielding, its failure to prevent the spread in care homes and other institutional settings and the utter misjudgement of their inertia to prepare for the crisis earlier in the year”.

Other recommendations from the report include calls for all public health information to be accessible to disabled people; to ensure pandemic response and recovery measures “better accommodate those shielding to promote their wellbeing”, including setting aside times of the day when only those shielding are permitted outside; and to involve disabled people “at every stage of the development of communications” on the pandemic response and recovery.

It also calls on the government to produce “urgent guidance” on how to support access to food for disabled people during the current crisis and future pandemics, which meets its duties under the Equality Act 2010 and its commitment to UNCRPD.

9 July 2020


Coffey shows ‘active contempt’ for rights over Disability Confident snub

Work and pensions secretary Dr Therese Coffey has shown “active contempt for disability rights” by refusing to sign up to her own flagship disability employment scheme, information released by the government has confirmed.

Disability News Service (DNS) has been trying since March to confirm that Coffey is continuing to snub the Disability Confident scheme, despite encouraging employers across the country to sign up to it.

Now a freedom of information (FoI) response from the Department for Work and Pensions (DWP) has confirmed that Coffey is refusing to join Disability Confident.

DNS asked the department in the FoI request whether Coffey and 11 other current and former ministers were members of the scheme.

In its FoI response on Friday (3 July), DWP said it did not need to provide the information because it was easily available online.

It pointed to its own website, and a list of Disability Confident members, which had been updated the same day.

That list showed that all four of the MPs who serve as ministers alongside Coffey – Justin Tomlinson, Mims Davies, Will Quince and Guy Opperman – have signed up, although Quince had only done so since DNS first raised concerns in March about current and former ministers turning their back on the scheme.

But Coffey, who has been work and pensions secretary since last September and has been an MP since 2010, is not on the list, even though – like all MPs – she employs staff to assist with her parliamentary duties.

A DWP spokesperson this week refused to comment when asked why Dr Coffey had not signed up to Disability Confident, and whether it showed that she did not value the scheme, and that she did not view the employment of disabled people as important.

Coffey had not commented by noon today (Thursday), although a member of her staff confirmed earlier this year that he and his colleagues were employed by her.

David Gillon, a prominent disabled critic of Disability Confident since its launch in July 2013, said her continued refusal to sign up was “remarkable”.

He said: “Disability Confident is DWP’s flagship policy when it comes to closing the disability employment gap, but that itself is a policy which has been conspicuously sliding in importance for DWP ministers over the past several years as they have failed to make any realistic progress.

“Coffey may have told PoliticsHome that Disability Confident encourages employers to ‘take action’, but it has apparently failed to encourage her.

“And let’s remember, the actions Disability Confident encourages employers to take are in many ways less than the provisions they are legally obliged to make under the Equality Act.

“If Coffey herself can’t be bothered to take that action, even knowing of press interest, then what does that say about the priority given to disability rights within her office? And within DWP as a whole?

“It’s difficult not to construe it as an active contempt for disability rights flowing down from the top.”

Sir Iain Duncan Smith, who launched the scheme when he was work and pensions secretary in 2013, is also among those refusing to join Disability Confident.

He had failed to comment by noon today (Thursday).

Gillon said: “It’s IDS, we know he never considered us anything more than a convenient prop to hang the ‘scrounger’ tag on in the Tory press to justify slashing disability benefits – even the disability benefits that actually made money for the government [like Access to Work].

“Meeting his moral obligations was never a priority.”

Former minister for disabled people Esther McVey, who claims to have created the scheme herself, has finally joined the scheme, months after DNS revealed that she had also neglected to sign up.

Last November, Coffey wrote in PoliticsHome of how the scheme “encourages employers to think differently about disability and to take action to improve how they attract, recruit, retain and develop disabled employees”.

Disability Confident has been heavily-criticised since its introduction in 2013.

Figures secured last year by DNS through a freedom of information request showed that the 13,600 employers that had signed up to the scheme by 13 September 2019 had pledged to provide just 8,763 paid jobs for disabled people between them, an average of just 0.64 jobs per employer.

Members of the scheme include many large employers such as local authorities, government departments, manufacturers, national charities, banks and retailers, including the big four supermarkets, more than 100 NHS trusts, and high street banks.

Three years ago, DWP declared itself a gold-standard employer of disabled people under the scheme – securing the status of “Disability Confident Leader” – just days before being found guilty of “grave and systematic violations” of the UN disability convention.

In March, a BBC Panorama investigation revealed that DWP lost more disability discrimination cases at employment tribunal than any other employer in Britain in the three years after 2016.

9 July 2020


Housing association ordered to apologise after hate crime ordeal failings

One of southern England’s largest housing associations has been ordered to apologise to a disabled man after it failed to investigate complaints that he had been subjected to a campaign of disability hate crime and harassment by other tenants.

Wheelchair-user John Vincent has been repeatedly targeted by a family on the estate in Grays, Essex, which is run by Southern Housing Group (SHG).

SHG was told how he had been bombarded with disablist abuse, and false accusations of being a paedophile – historically, a common factor in disability hate crimes – by the family and their friends, including two other residents on the estate, in a three-year ordeal.

Vincent is now terrified that he and his terminally-ill wife, Lorraine, will die in an arson attack, after he was threatened with a fire in his letter-box. He now stays up all night to keep watch.

They have also had stones thrown at their two-bedroomed house, and rubbish thrown into their garden.

He had been trying unsuccessfully to persuade SHG to investigate his allegations for two years, but it was only when he reported his concerns last August to the police and his local Tory MP, Jackie Doyle-Price, that Southern Housing finally took some action.

Vincent told Disability News Service (DNS) that the hostility he has experienced, the lies being spread about him and the fear that he and his wife will be attacked and “burned alive in our beds” has caused him to have epileptic seizures for the first time and a suspected stroke.

He said: “I’m being targeted because they don’t like the fact that I can’t work and I claim benefits.

“I’m being called a paedophile and I get verbally and physically attacked when I leave my home.

“I’m a prisoner in my own home, and I live in fear of someone setting fire to the house at night.

“They are calling me ‘spastic’ because I’m in a wheelchair, they throw stones at my house and threaten me with violence.

“We are both disabled and in need of desperate help as we are in fear for our lives as they have told people that I’m a paedophile.

“I’ve had threats from total strangers and I can’t leave my property without someone calling me names and abusing me.”

But when he tried to persuade SHG to take action and to look into further concerns about the lack of access to a parking space and the behaviour of its staff, it failed to carry out a proper investigation and dismissed his concerns.

Now, in a highly-critical report, the Housing Ombudsman Service has concluded that Southern Housing is guilty of four counts of “service failure”, including in the way it responded to Vincent’s complaints of anti-social behaviour and parking problems, and the way it handled his complaints and concerns about staff behaviour.

The ombudsman has ordered the housing association to apologise to Vincent, pay him £400 in compensation, ensure he has access to a parking space, and devise an action plan to deal with the anti-social behaviour.

The report concludes that it was “evident” that Southern Housing was aware of anti-social behaviour before last August and had breached its anti-social behaviour policy by failing to log a case and follow its policy.

The report describes how police told SHG that Vincent said one of the family had been shouting at him every time she saw him, “calling him a ‘paedophile’, ‘nonce’ and ‘spastic’. Suspect also shouts at the victim ‘look here comes polio’.

“Suspect has also been throwing rubbish over the victim’s garden. Victim believes he is being targeted because he is disabled in a wheelchair due to a spinal injury and he has no use of one of his arms.”

The local council’s safeguarding team told the ombudsman that it had been present on at least one occasion when Vincent had contacted Southern Housing about the abuse, and had encouraged him to contact the police when the housing association failed to act.

The ombudsman concludes in its report that Southern Housing had produced “limited evidence” that it had investigated Vincent’s allegations, while there was no evidence it had followed up on information that there was a witness to the anti-social behaviour.

Chris Harris, executive director for customer services at Southern Housing Group, said in a statement: “We are in touch with Mr Vincent and have apologised to him about the way that his complaints were handled and to discuss with him the next steps.

“While we cannot discuss the personal circumstances of individual residents, we always welcome the scrutiny of the Housing Ombudsman and, as a responsible housing association, we think it is right that we should be held to account.

“We are reviewing the detail of the ombudsman’s findings, which raise a number of important points, and where appropriate, will be undertaking the necessary actions in consultation with residents.”

An Essex police spokesperson said: “We received four reports of disability-related hate crime from a victim in Grays between June and September 2019.

“The incidents were allegedly taking place in close proximity to his home and involved a person known to him.

“Officers from our Community Policing Team carried out thorough investigations into these incidents, including the voluntary interview of a local woman.

“No case is ever closed and officers can review further evidence if it becomes available.”

She added: “If you are the victim of hate crime, you can report it to Essex Police online or by calling 101. Always call 999 in an emergency.

“Alternatively, you can report anonymously to Crimestoppers, or speak to Stop Hate UK on their 24-hour helpline by calling 0800 138 1625.”

9 July 2020


Disabled activists call for a refreshed social model to ‘bring it back to life’

Disabled activists have called for a re-examination of the social model of disability to produce a “reinvigorated” version that will bring together disabled, Deaf and autistic people to challenge the oppression they face.

The call came at an online meeting hosted this week by Disabled People Against Cuts (DPAC).

The meeting follows ideas discussed in a new book by DPAC activist Ellen Clifford, The War On Disabled People, in which she argues that a “reinvigorated” social model could “bring it back to life” and “play a fundamental role in taking forward dis­abled people’s resistance”.

Clifford told the meeting that the social model was “never intended to be a perfect theory of disability”.

She said: “The whole point of it is as a tool for building a collective identity in order to unite people who face similar barriers as a result of the socio-economic structures we live under.”

For that reason, she said, refreshing the social model “must be carried out as a collective endeavour” by disabled people with a range of experiences, but who all experience disablism and aim to fight social injustice.

She also stressed the importance of a new social model of impairment, which would address the existence of illness, pain and distress, and how people deal with them.

And she said there needed to be a way to include those who face disabling oppression but do not accept the term “impairment”, such as many people with mental distress and those who are neurodivergent or Deaf.

She reminded the meeting that charities had “heavily watered down” the social model, had “paid lip service to it” and did not believe in a “radical transformation of society”, and for that reason would likely not agree with a reinvigorated social model.

But identifying such people, she said, “will enable us to more easily identify who our allies are”.

A series of contributors to the meeting explained the importance of the social model and its continuing relevance, with many backing the need for it to be “refreshed”.

Many pointed to the new reality facing disabled people, compared with the 1980s, when Mike Oliver named and developed the social model of disability, following work by other disabled people through the 1970s, including Vic Finkelstein and the Union of the Physically Impaired Against Segregation (UPIAS).

Denise McKenna, co-founder of the Mental Health Resistance Network, said the social model was “a powerful campaigning tool”.

But she agreed that it needed “reconsideration to take account of how the disabled people’s movement has expanded to include a wider range of impairments”.

She also argued for a social model of impairment, which would explain that the causes of mental distress originate with society.

McKenna said the medical model of disability was “very much alive” for those with mental distress and was even “enshrined in law” through the Mental Health Act.

She said: “I would like to see a reinvigorated social model that is more inclusive of mental distress and a social model of impairment that will give us a language to speak of the disabling effects of what we understand as impairment itself.”

Catherine Hale, founder of the Chronic Illness Inclusion Project, said the social model was nothing “if it is not a tool for uniting disabled people to take collective action”.

She said that people with energy-limiting chronic illness see the main form of their oppression as being “invalidation and disbelief” of their experiences of their impairment.

She said this community was a large one but was in many ways disconnected from the disabled people’s movement, with many of its members not identifying as disabled people, often because they experience “hostility and violence” if they try to do so.

Hale said that, for many people with severe energy impairments, no amount of action to address societal barriers would “allow us to leave our homes or even our beds”.

She added: “That reality has often felt like it is too difficult for the disabled people’s movement to acknowledge.”

And she said many people had a problem with the language associated with the social model, rather than its underlying principles, with the idea of being “disabled by society and not by my body” being “particularly jarring for people with chronic illness”.

She said: “If we are going to unite to fight the war on disabled people, we need the movement to include our experiences of both impairment and disability.

“I really hope today leads to further dialogue.”

Kerena Marchant, a Deaf film-maker and activist who fought the Basingstoke seat for Labour at December’s general election, said the government and capitalism, which were eroding Deaf and disabled people’s rights, were “afraid” of the social model because “they know that through that we can reclaim our rights”.

She said she did not consider herself to have an impairment “because the fact that I cannot hear doesn’t matter to me because I have my own language”.

Marchant said she faced a barrier in accessing the disabled people’s movement because much of its activism took place in spoken English.

She said: “If that barrier was removed… it would make it so much easier for Deaf people to join that movement and move forward, supporting the aims.”

She said that had to happen because Deaf people were discriminated against because they were Deaf, and so they needed the social model.

Autistic activist Chris Pike said the social model provided a “sense of solidarity” and “community” to disabled people, and he backed the call for a “reinvigorated social model”.

He said: “Fundamentally the social model is about coming together as a community, recognising that we are not the problem, and that we need to fight for our liberation.”

Another contributor was Bob Williams-Findlay, whose book about his own experiences of discrimination, his political awakening and the wider political emancipation of disabled people, More Than A Left Foot, was published last month.

He said it was important to note that disability had “different meanings in different points in history”.

He said the social model was “about what kind of society we live in” and “how it imposes restrictions” on disabled people, but it was also a way of thinking about “how we deal with those restrictions that obstruct us and [how we] transform them”.

He said: “Therefore, we can’t reinvigorate the social model. What we can do is create a new one, looking at a new set of circumstances but still using the methods we have within the social model.”

He said this was because the nature of the relationship between disabled people, the state and society had changed since the 1980s.

Kate Caryer, a founder member of The Unspoken Project, said she believed the social model was “the most powerful tool that we disabled people have in our arsenal” and that this power “had never been more needed”.

She said: “It makes us realise that we are not the problem because we have impairments, but also for us to change the world.

“Social model thinking unites us in ways that having the same impairments does not.”

She added: “I believe that people with severe communication impairments are not usually engaged in disability politics so they don’t have access to radical ideas like the social model.

“This is because non-disabled professionals, speech therapists and special school teachers have a stranglehold over the provision of communication aids and instructing in how to use them, and they set up organisations to defend their own professional interests that treat disabled AAC-users [users of augmentative and alternative communication] in the paternalistic way that we all recognise in the disability charities.

“With the social model we can change this patronising world.

“Too many young people are sucked into the old paradigm of believing disability is something to be ashamed of.

“I have met many non-speaking kids who are ashamed of having a communication aid because they say it makes them look disabled.

“We need the social model to save them.”

Rick Burgess, a disabled activist with Recovery in the Bin, Manchester DPAC and Greater Manchester Coalition of Disabled People, also called for a reinvigoration of the social model.

He said the social model “probably does need a bit of dusting off”, while there was a need to listen to those who have previously not felt included in the social model and change it so they do “feel represented and included”.

Burgess said there had been a “wholesale assault on our rights and our very lives” over the last decade.

He said there were many institutions with “good incentives to ignore us” and to “put their model in our place”.

He said: “Our model is the one that we thought of, that we figured out, based on our lives.

“The first lesson of it… is ‘nothing about us without us’. It is our model, we run our organisations, and we say what we need to say about how we want the model to reflect how our lives and our experiences are.

“We need to get out and get this idea to more people because it is a very, very powerful liberation tool.”

Andrew Lee, director of People First (Self Advocacy), said he hated “with a passion” that when big issues were raised, the media “automatically turn to the big charities”.

He said a key barrier faced by people with learning difficulties was access to information, as “information is power”, and that society was “frightened of us having the same amount of information for us to make decisions for ourselves”.

He said: “The challenge for the 21st century is everybody that is marginalised, everybody who is cut off, if we come together as one unit we can take on society.”

Deaf campaigner Paul Ntulila was another who said the social model was needed to influence the government and other institutions but that it needed “refreshing” as “society has moved on”, including through government cuts which have created “more and more barriers”.

He said it almost felt as though Deaf and disabled people were currently in “two camps”, and he called for them to “come together more collectively”.

He added: “I appreciate the sentiment of trying to define ‘impairment’, but I still find the word itself very difficult.

“For example, ‘hearing impairment’: that implies damage. I would prefer to find an alternative word around this concept.

“The next steps would include ways that we can make sure the social model can be employed and talked about in relevant, real world-applicable ways, particularly if working outside DDPOs [Deaf and disabled people’s organisations].”

Dorothy Gould, from the new user-led, rights-based organisation Liberation, said a social model was “very important because it challenges the whole idea that the only way to understand mental distress and mental trauma is via an individual illness model”, something which does not fit with the personal experiences of many survivors of mental health services.

But she said many of those in the survivor movement also had concerns about the social model, partly because of a lack of focus by the disabled people’s movement on people being detained in mental health institutions and forcibly treated under mental health law.

She said many survivors also had a problem with the idea that mental distress or trauma were impairments, as they saw that distress being caused by society.

She said: “We want a social model that is wide enough to embrace our identity as well.”

She said there was a need for an “in-depth and imaginative” examination of the meaning of the social model, otherwise “joint action just won’t be effective in the way it needs to be… when we are more oppressed than ever and need to work more than ever to work together”.

Naomi Care, who has a chronic illness, said she had “never felt at home with the social model of disability”, because through years of being housebound due to fatigue and pain and being unable to access work, education or a social life, she felt she was disabled by both society and her impairment.

She said: “There were times that no amount of barrier removal would have been adequate to include me.”

She added: “In the future I would really like it if chronic illnesses were considered and really understood in terms of their day-to-day suffering and how they can completely disable a person one day and the next day that person might be able to come out… and do all the things they normally can do.”

Summing up the discussion, Clifford said it had showed that disabled people were “better as a collective”.

She said: “This is just the beginning of a discussion.

“There is a consensus…about the need to do some work on this, to look at the barriers that have stopped specific groups from being involved. There is an umbrella under which we can all sit.”

*Next week, DPAC will bring together disabled activists from across the world for an online discussion on the impact of the COVID-19 crisis on disabled people, and links between how disabled people have been treated and eugenics, including participants from Greece, Uganda, Sweden, Bulgaria, Belgium, USA, Hungary and Bolivia. The session will take place on Monday (13 July) from 6.30pm to 8.30pm.

9 July 2020


Countdown begins as line-up is announced for Saturday’s WILD day in

A professional skateboarder, a wheelchair motocross world champion, a martial arts expert, a comedian and the founder of a critically-acclaimed rock band will all take part in the first World Independent Living Day (WILD) festival on Saturday.

Organisers of the WILD Day In have this week released the line-up of disabled talent for the online festival.

The running time for the festival had to be extended after more disabled musicians, artists and speakers added their names to the original line-up.

As well as demonstrations, comedy, discussions and music, the festival will feature animations that provide information and some of the history behind the independent living movement.

The most high-profile disabled performers on Saturday are Jon McClure, founder of Reverend and the Makers, who will end the festival with a set, and comedian Rosie Jones.

The festival will begin with tutorial sessions from blind skateboarder Dan Mancina and wheelchair motocross world champion Lily Rice, and a martial arts demonstration from black belt Martin Ridley.

There will also be interviews with punk poet and author Penny Pepper, and the creators of accessible sex toy company Hot Octopus, as well as Alex Walls, who runs an online computer game streaming channel.

Others performing include rapper and spoken word artist Potent Whisper; singer-songwriter Tilly Moses; live artist, producer and instrument designer Lia Mice; and storyteller Dr Naomi Lawson Jacobs.

The free festival will begin at 3pm on Saturday on the WILD website, and will include British Sign Language interpreters and simultaneous subtitles.

The festival had originally been planned to take place in central London on 5 May but had to be reimagined as an online event because of the coronavirus pandemic.

The hope is that it will demonstrate solidarity within the disability community, while also “highlighting some of the best talent out there”.

Broadcaster and campaigner Mik Scarlet, who will compere the festival, said: “I had to get involved with WILD because an event marking World Independent Living Day with a cross-section of disabled people performing and showing off their skills couldn’t be missed.

“Being able to live as you wish, choosing who supports you and what they do and having the ability to build your own future path is something we all deserve, and the list of disabled people appearing at WILD proves what disabled people can do given the chance.”

Festival founder and disabled activist Andy Greene said: “Anything that brings us together and gets us talking to each other is positive.

“This festival will act as a springboard to having a bigger conversation about how we can build new organisations to bring our ideas to life.

“We are trying to be as inclusive and accessible as possible and our festival will connect with the independent living movement’s history and try to build on that going forwards.”

The festival also marks the launch of WILD CIC, a new organisation which will promote independent living as “a tool to transform society into something that is far more inclusive than it is today”.

9 July 2020


DWP secrecy over panel that examines its own fatal errors

Work and pensions ministers are refusing to release key details of the panel they set up last year to examine deaths linked to the actions of their own department.

The Department for Work and Pensions (DWP) was forced to admit in January that it had lied when it said last year that its new serious case panel would be “independent”.

In fact, all the panel members are linked closely to the department.

Disability News Service (DNS) has been trying since January to discover the purpose and scope of the panel, through a freedom of information request.

Now DWP has finally responded to the request, while also responding to questions put to the department by the Commons work and pensions select committee.

But instead of releasing the panel’s terms of reference, DWP has relied on an exemption under section 35 of the Freedom of Information Act, which “protects the private space within which Ministers and their policy advisers can develop policies without the risk of premature disclosure”.

DNS has appealed that decision.

The DWP response did reveal that the serious case panel first met in September 2019 and by January had examined five deaths of benefit claimants.

The work and pensions committee has also published new correspondence with work and pensions secretary Therese Coffey.

It follows last week’s report by DNS which revealed that the committee’s chair, Labour MP Stephen Timms, had failed repeatedly to promise to put questions to DWP about four new concerns that have emerged in recent months over the department’s links with the deaths of claimants.

The correspondence reveals that Timms raised questions about two of the four concerns in a letter to Coffey, but even those questions failed to probe Coffey about proof that the department had repeatedly misled public bodies and coroners over its actions.

Timms also failed to ask Coffey why DWP was refusing to release two reports written by coroners – one in 2015 and one in 2016 – that called on the department to take measures to prevent further deaths of benefit claimants.

Without seeing those two reports, it is impossible to know whether DWP took measures to prevent further deaths.

In her letter to Timms, Coffey also responds to his request for her to release the panel’s terms of reference and the recommendations it makes on each death it examines.

Coffey refused to do so, telling him: “Recommendations that are made at the Panel may relate closely to development of government policy, and as the Panel is relatively new I would like to ensure the operation of the Panel is embedded in the Department before deciding on what may be published.”

In the letter, Coffey also refuses to publish an internal review of how DWP responds to serious cases, including the secret examinations (known as internal process reviews) it carries out into suicides and other serious deaths linked to its actions, because she says this is “internal improvement work”.

But Ken Butler, welfare rights and policy adviser for Disability Rights UK, said: “The DWP, by its policies and practices, has been the cause of deaths of disabled claimants.

“It cannot be its own judge and jury and able to police itself.”

He added: “DR UK strongly condemns the DWP’s refusal not only to publish its review of the suicide of benefit claimants but the makeup and terms of refence of its serious case panel.

“Not only should full DWP documentation be published relating to benefit deaths, but disabled people should be consulted on the make-up and remit of its serious case panel.

“This should be a precursor to an independent inquiry into the social security system that discriminates against disabled people and leads some to their deaths.”

9 July 2020


Round-up: Secrecy on COVID impact, DWP assessments, shielding, Graeae… and Autistica

The government is refusing to release documents that would show the expected impact on disabled people of the legislation and policies it produced in response to the coronavirus pandemic.

In May, Disability News Service (DNS) asked the Cabinet Office to release the equality impact assessments (EIAs) it carried out on its Coronavirus Act and COVID-19 recovery strategy.

These would show how the government had expected the act and the strategy to affect disabled people and other groups protected under the Equality Act.

But in response to the freedom of information request, the Cabinet Office has now refused to release the two documents.

In its response, the Cabinet Office admitted that the assessments had been carried out.

It said there had been an “in depth and ongoing assessment” of the impact of the government’s COVID-19 policies, including on groups with protected characteristics, which it said had “informed decision making” and continued to do so.

But the Cabinet Office said it was exempt from its duty to release the information, under section 35 of the Freedom of Information Act, as to do so would “weaken Ministers’ ability to discuss controversial and sensitive topics free from premature public scrutiny”.

DNS has appealed the decision not to release the two EIAs.

The Department for Work and Pensions (DWP) has decided that face-to-face assessments for disability benefit claims will remain temporarily suspended.

A three-month suspension was introduced on 16 March, soon after the beginning of the COVID-19 pandemic, and it will be kept in place, DWP said on Monday, although this decision will be kept under review.

The suspension affects claimants of personal independence payment (PIP) and employment and support allowance (ESA) and some of those on universal credit, as well as recipients of industrial injuries disablement benefit.

But DWP said it would write to some claimants to restart reviews, renewals and reassessments for PIP and disability living allowance (DLA) that had been put on hold because of the pandemic.

These will not involve face-to-face assessments.

Most of the disabled children in England who are currently considered “clinically extremely vulnerable” to COVID-19 will now be removed from the government’s shielding list, the Department of Health and Social Care announced this week.

The announcement follows evidence from The Royal College of Paediatrics and Child Health (RCPCH) that shows the risk of serious illness from COVID-19 for children and young people was low and only those with “the most severe conditions” should now be considered “clinically extremely vulnerable”.

But no children will be removed from the list until the issue has been discussed with the child and their family by their GP or specialist doctor, who will be asked to contact them during the summer.

Dr Mike Linney, registrar at RCPCH, said: “It was right to be cautious when we knew so little about the virus, but we now have a lot of evidence to guide us.

“We can be confident that the vast majority of children and young people don’t need to shield.”

The autism research organisation Autistica has appointed what it believes is the first autistic person to head a major national UK charity.

Dr James Cusack, currently the charity’s director of science, will take over as its chief executive next month.

He said: “This pandemic has shown, once again, that autistic people don’t get the same access to rights that most people take for granted.

“To overcome the unacceptable inequalities that autistic people face, we must ensure we listen to the experiences of all autistic people and deliver transformative change based on the best evidence.”

Autistica says on its website that it is the UK’s leading autism research charity, supports “cutting edge research on autism and related conditions”, and works with autistic people “to understand their priorities for research”.

Among its current projects are developing tools for autistic people to deal with anxiety, improving diagnosis of autism in adults, and improving the treatment of anorexia in autistic women.

The disabled-led theatre company Graeae has secured a grant of more than a quarter of a million pounds for a project that will help Deaf and disabled children and young people break into the arts and develop skills and confidence.

The £260,400 grant from City Bridge Trust, which will be spread over five years, will support theatre groups for children aged between five and 11 and from 12 to 18, as well as a training programme that will help young disabled people between 17 and 30 develop careers in the creative industries.

Jodi-Alissa Bickerton, Graeae’s creative learning director, said: “This grant enables our work with young Deaf and disabled people to flourish –  improving their wellbeing and supporting their ambitions – and supports us to continue creating pathways for a new wave of young arts leaders, who bring a wealth of lived experience to inform more welcoming and inclusive platforms for more young people across London.”

City Bridge Trust is the charitable funder for the City of London Corporation.

9 July 2020

News provided by John Pring at