disability
Avoidable Deaths of People with Learning Disabilities: The Statistics that Shame Our Civilised Society
Newsletter offer
Subscribe to our newsletter for exclusive editorial emails from the Byline Times Team.
My 34-year-old sister is currently more likely to die an avoidable death than at any other stage in her life, according to a shocking new report.
In the latest NHS-funded annual review of deaths among people with learning disabilities, a bleak line graph shows an “odds ratio of avoidable death for age group”, which peaks between the ages of 25 and 49.
Right now, I hasten to add, Raana – who has the learning disability fragile X syndrome – is in good health and is well cared for by her supported living staff in Hampshire.
But the report lays bare how part of our population is less likely to receive good quality health and social care. This makes people like Raana less likely to survive health problems that, for most of us, are preventable and treatable.
Researchers at King’s College London, the University of Central Lancashire and Kingston University London reviewed the deaths of 3,648 people with a learning disability. Overall, almost half died an avoidable death – compared to two in 10 in the general population. The median age of death in was 63 years – around 20 years less than usual.
These terrible facts shame our modern, civilised society, one that on Human Rights Day this Sunday will mark the 75th anniversary of the Universal Declaration of Human Rights Day. The day partly reflects equality 'for all'.
In contrast, the new report highlights a deep inequality. It reflects how learning disabled people from ethnic minority backgrounds are likely to die earlier, as well as those in deprived areas. It also warns of “excess deaths” caused by heatwaves related to climate change.
‘Nearly All Leading Voices in Learning Disability Advocacy Are White – This Must Change’
When the narrative is dominated by people who look different and don’t share ethnic minority experiences, the system will continue to fail, writes Ramandeep Kaur
Ramandeep Kaur
The findings are shocking enough, but equally unsettling is the fact that evidence of such premature deaths – and the actions needed to prevent them – are well-established, and have been so for years.
This is the sixth annual report of its kind (the deaths review programme began in 2017), and it is also a quarter of a century since Sheila Hollins, now a crossbench peer, led a report into the increased risk of early death among people with learning disabilities.
In the 25 years since, those original findings have been amplified by a multitude of similarly focused reports and inquiries exposing the significant health inequalities faced by this group of people.
This includes 2013’s Department of Health-funded Confidential Inquiry into the deaths of people with learning disabilities, two reports by Mencap in 2004 and 2007, a Disability Rights Commission study in 2006, and a Department of Health inquiry in 2009.
Just a month ago, an investigation by the watchdog Health Services Safety Investigations Body showed that hospitals put patients with learning disabilities at risk because their need are not met. It found the health and care system “is not always designed to effectively care for people with a learning disability”.
Of course, the investigations and research have laudable aims – to raise awareness, learn from and prevent avoidable deaths, improve care and reduce health inequality. But data alone does not dent entrenched structural inequalities – we need more effort, not just more evidence.
Successive governments – particularly the current one – instead seem content with facilitating and encouraging yet more data alone, while generally turning a blind eye to the recommendations suggested alongside it.
The actions raised by researchers involved in this latest report and previous ones include issues like prioritising people with a learning disability for vaccinations and boosters, a special focus on the health of people from ethnic minority backgrounds, and steps to make medical communication and appointments more accessible.
Yes, there are welcome developments from some with the power to act, mostly in response to campaigners. There is a greater push within some NHS regions for learning disabled people to take up annual health checks or the launch of accessible vaccination clinics, with reasonable adjustments as standard. And there is the roll-out of e-learning for health and care staff through the Oliver McGowan Mandatory Training in learning disability and autism.
But none of this is widespread or proportionate to need.
The hearings in the COVID Inquiry are another reminder that the Government had no plan for disabled people – especially disabled people from black, Asian or ethnic minority backgrounds – despite their higher risk of death in the pandemic.
Alongside the lack of specific action on the health of learning disabled people, the Government is also failing to tackle the wider determinants of wellbeing.
ENJOYING THIS ARTICLE? HELP US TO PRODUCE MORE
Receive the monthly Byline Times newspaper and help to support fearless, independent journalism that breaks stories, shapes the agenda and holds power to account.
We’re not funded by a billionaire oligarch or an offshore hedge-fund. We rely on our readers to fund our journalism. If you like what we do, please subscribe.
For example, it dropped long-awaited plans to reform the Mental Health Act, excluding it from the recent King’s Speech. These reforms would have meant fewer people with learning disabilities being detained in secure units (a group that is detained, despite not having mental health issues).
And it gave lip-service to Baroness Hollins’ long-awaited report calling for an end to the long-term segregation of learning disabled people in secure units. More than 2,000 people are still locked away in these inappropriate, restrictive and traumatising places.
More generally, the public sector cuts, lack of funding for social care, and the Government's move to block family members of overseas care workers from coming to the UK, threaten the already fragile support that exists. This further undermines the safety net that keeps people from a healthcare crisis.
No wonder then at the anger, sadness, disappointment and fear expressed by the Kingston University-based Staying Alive and Well Group, an advisory group of 10 people with a learning disability which informed the Learning from Lives and Deaths report.
In a statement and accessible video released as part of the report, the group renamed the study “Spot the Difference” because “we are saying the same things year after year after year… we sometimes feel like we are banging our heads against a brick wall, like nothing has changed”.
It is devastating that the words of this expert group of people with learning disabilities are as accurate and relevant today as they would have been when research in this area began – 25 years ago: “Everyone should be treated equally. Everyone has the right to live and be cared for. People with a learning disability can live well with the right support, but our lives are not valued enough.”
Saba Salman is the editor of 'Made Possible: Stories of Success by People with Learning Disabilities – In their Own Words’. She is the chair of the charity Sibs, which supports the siblings of disabled children and adults
‘Nearly All Leading Voices in Learning Disability Advocacy Are White – This Must Change’
Newsletter offer
Subscribe to our newsletter for exclusive editorial emails from the Byline Times Team.
"World-leading" and "ground-breaking" were the words Conservative MP Liam Fox used to persuade members of both the House of Commons and the Lords to enact into legislation a Private Members Bill for a Down Syndrome Act. With much fanfare and celebration of cross-party support, the Act was finally passed into law last April.
A consultation has since come and gone, and there is still no sign of the much-hailed guidance, which was the core element of the Act. This, it was claimed, would describe what specialist help was required by people with ‘Down Syndrome’ (Fox and his supporters insisted on the American usage) and how to implement it.
The Act’s many supporters argued that it would help people secure the right support in education, health, social care and housing. Even the youth justice system, it was said, would be improved.
That was 18 long months ago.
At the time, Stephen Unwin and I criticised in these pages the deeply divisive and ineffective nature of the legislation. But, throughout the campaign, there was one crucial omission: nobody listened to people from ethnic minority groups.
The so-called National Down Syndrome Policy Group (NDSPG) – all white, all middle-class – produced an ‘evidence-based’ paper to support its arguments, but there was not one mention of race, ethnicity or culture in its hefty 80 pages.
A new report by a national commission has found that ‘systemic racism embedded in the Government’s responses to the pandemic may have worsened outcomes’
Saba Salman
People like my son Harry, who has Down’s syndrome and is of mixed Indian and Northern Irish heritage, were completely ignored. When challenged, the NDSPG told me to find the evidence and report back. Here was a British Indian woman campaigning for the rights and dignities of her son, pointing out a problem not created by me, being told to go away and find the solution to something they had not even considered. Simply put, I was made to feel that I wasn’t wanted.
These problems occur across the public sector.
The COVID Inquiry recently heard from former Downing Street director of communications, Lee Cain, about how civil servants – especially policy-makers – are disastrously lacking in diversity (seen as a dirty word by some who argue that too much money is being spent on such things).
He explained that "if you lack that diversity within a team, you create problems in decision-making and policy development and culture". This inevitably resulted in the needs of people from ethnic minorities being almost completely ignored when plans were being developed around how to tackle the Coronavirus.
The impact, as we now know, was hugely negative – with by far the highest death rates being in the Bangladeshi and Pakistani communities. People with learning disabilities were up to six times more likely to die from COVID during the first wave of the pandemic. Harry, who still lives at home, was fine, but statistically his chances were very limited.
Professor Chris Hatton, of Manchester Metropolitan University, recently conducted research with the Race and Health Observatory into public policies affecting people with learning disabilities and found that the vast majority failed to consider ethnic minority groups at all. It also showed that, without significant improvements, the life expectancy of people with severe learning disabilities from ethnic minority groups will remain at the heartbreakingly young age of 34 years. It is devastating to realise that this is somehow seen as acceptable.
The truth is campaigners, lobbying groups, support groups and charity boards are all lacking in diversity. With the notable exception of journalist Saba Salman, nearly all the leading voices in learning disability advocacy are white. Much as I welcome their input, unless policy-makers start listening to other voices, we will never succeed in bringing about much needed change to the life chances of all people with learning disabilities.
ENJOYING THIS ARTICLE? HELP US TO PRODUCE MORE
Receive the monthly Byline Times newspaper and help to support fearless, independent journalism that breaks stories, shapes the agenda and holds power to account.
We’re not funded by a billionaire oligarch or an offshore hedge-fund. We rely on our readers to fund our journalism. If you like what we do, please subscribe.
And research shows that, when grassroots organisations from ethnic minority groups apply for funding, they are regularly frozen out. Even when they succeed, the amount is derisory and for very short-term projects. It feels almost impossible for us to secure support from anywhere.
The fact is that people like my Harry face enormous challenges regardless.
Punjabi families take great pride in announcing the birth of a boy, but with Harry, the celebrations were muted. He and I were shunned by people I had known most of my life. The stigma, shame and rejection are devastating. Sixteen years on, these attitudes are gradually changing and I campaign within the community for better attitudes and better practice. But there’s so much to be done.
But when the narrative is dominated by people who look different, who don’t share our experiences, or who need entirely different interventions and support mechanisms, the system will continue to fail. As the great Palestinian-American academic and literary critic Edward Said reminds us, the stories of people from the East have been dominated by people from the West. Surely, just occasionally, our voices should also be listened to?
People from ethnic minorities need to be empowered to emerge from the shadows in the formulating of public policy. Politicians, civil servants and commentators must move beyond describing us as ‘hard to reach’ – when the simple truth is that we are ‘easy to ignore’. Without the voices of people like us, families will continue to feel isolated, neglected and forgotten. We deserve better.
Until we accept that my gorgeous, Bollywood-obsessed 16-year-old son has the same value as any other learning-disabled person – as all other people – the endless sleepless nights worrying about a life being neglected, ignored and cut short will continue to leave me close to despair.
Philosophy Professor vs. University on Accommodations
A philosophy professor at Queen’s University in Canada has been booted from the logic course she was teaching owing to a dispute between her and the university’s Exams Office over accommodating students who require the use of a computer for taking exams.
It does not seem that associate professor of philosophy Adele Mercier refused to grant the accommodation. Rather, it seems like she might have been, from the point of view of the Exams Office, overly accommodating, though the details are somewhat unclear.
The following is from the Queen’s University Journal:
It all started when Mercier decided to modernize her exam to accommodate two students enrolled in PHIL 260 [Introduction to Logic] requiring a computer to write examinations. Mercier and [her TA Tianze] Chen worked all semester to computerize the students’ exam, using a “cheat proof” software. Students have been using the software throughout the semester to complete homework exercises…
On Oct. 26, Mercier contacted the Exams Office to inform them of the new format for the midterm exam. Problems arose when Mercier learned policies restricted the Exams Office from allowing students with accommodations to use their personal computers to complete exams. To adhere to the policy, the Exams Office required all [non-accommodated] students enrolled in the course to revert to a paper-based exam…
In response, Mercier filed an official complaint, objecting to the imposition of “para-academics” to modify the exam format, citing infringement on academic autonomy and the adverse impact on students who were prepared to write a computerized midterm.
Mercier told the Exams Office despite their advisory, she was going to offer students the option of a paper-based or computerized exam. She maintained students who required the use of their laptops for exams would be allowed to do so in her classroom.
The Exam Office told Mercier this wasn’t an option. They reiterated all non-accommodated students had to write a paper-based exam. As for accommodated students, they gave her two options: let the Exam Office step in, or privately administer the computerized exam meeting all the students’ accommodations. Mercier chose the latter.
“We’d been booking Gordon Hall 400 for those who had accommodations for private rooms or dim lights or things like that, and they could bring their own laptop to Gordon Hall. We arranged our own proctors so that everyone gets to write the exam on the computer,” Chen said.
As students prepared for their exam the following morning, they received an email from Haley Everson, faculty associate director (academic consideration, appeals and advising) cancelling the exam.
Two days later, students received an update, apologizing for the disruption and claiming the faculty was “working with Professor Mercier and the Exams Office to set up exams that meet Queen’s accessibility requirements.” They claimed the decision was made due to a scheduling conflict between the exam time for students with academic accommodations and their other classes.
In her own email to students explaining the cancellation, Mercier told students the “para-academics [are running] the show now, not your professors,” and she was “gravely disturbed by ever increasing infantilization of students, and victimhood-fostering attitudes towards persons with disabilities.”
The administration then replaced Mercier and Chen with another faculty member, Mark Smith, and said that it “will allow students to drop the course after receiving their final grade with a full tuition refund.”
It’s unclear why matters escalated as they did.
The Journal reports that “a student in the class told Mercier they withdrew their accommodations because they ‘felt the alternatives [she] gave were just fine and very fair.'” Another student suggested that “the situation is potentially an infringement on [Mercier’s] academic freedom.”
There’s some more information here.
A few years ago, the Ontario Human Rights Tribunal ordered Queen’s University to pay Mercier $20,000 in general damages and $5,000 in punitive damages owing to how it treated her after she raised issues of gender discrimination in her department.
The post Philosophy Professor vs. University on Accommodations first appeared on Daily Nous.
Seven recommended reads for UK Disability History Month 2023
To mark UK Disability History Month 2023 (16 November to 16 December), members of LSE’s Disability and Wellbeing Staff Network (DAWN) and the wider LSE community recommend seven books about disability and by disabled authors. This selection – covering fiction, memoir, academic writing and poetry – will inform, entertain and inspire readers.
Some of Us Just Fall. Polly Atkin. Sceptre. 2023.
A raw, moving and poetic memoir of living with chronic illness by Polly Atkin, who was diagnosed with Ehlers-Danlos Syndrome and haemochromatosis in her thirties after years of misdiagnoses, gaslighting and misogyny by the medical profession. Based around the Lake District, Atkin turns to the natural world in search of inspiration for a life lived well with disability, finding both solace and an understanding that nature itself cannot ‘cure all ills’.
Recommended by Helen Flood, Marketing and Project Manager in Consulting at LSE Research and Innovation
Crippled: Austerity and the Demonisation of Disabled People. Frances Ryan. Verso. 2019.
From brutal cuts to disability benefits to the indignity and indecency of the means testing system, this book by journalist Frances Ryan offers a devastating indictment of the disproportionate impact of austerity policies on disabled people. It is also, however, a call for action, offering a vision for a society in which disabled people are valued, respected, and supported.
Recommended by Joss Harrison, DAWN Communications Manager and Centre Assistant at LSE’s Phelan US Centre
I Feel Fine. Olivia Muenz. Switchback Books. 2023.
Olivia Muenz’s first book of poetry is a brilliant exploration of language and embodiment, written through her experience of neurodivergence and chronic cognitive fatigue. As they consider ideas of how a brain attempts to make meaning, the poems disarm the reader with disorientating shifts in tone and an interruptive use of punctuation. I would also recommend reading an excerpt from Muenz’s essay “Couch Potato” published in The New England Review (Vol. 44, No. 2 2023) which uses the the titular phrase to explore and challenge representations of the chronically ill body.
Recommended by Anna D’Alton, Managing Editor of the LSE Review of Books Blog
Poor Little Sick Girls. Ione Gamble. Dialogue Publishing. 2022.
Diagnosed with an incurable illness at nineteen, Ione Gamble found herself confined to her bed for up to twenty hours at a time. She began to pick apart our obsession with self-care as perpetuated by social media and celebrity culture, and how it intersects with disability. Gamble’s debut essay collection examines what it means to present as an ‘unacceptable’ woman in the age of Instagram conformity and is the perfect antidote for those who view the wellness industry and girlboss feminism with a healthy dose of scepticism.
Recommended by Helen Flood, Marketing and Project Manager, in Consulting at LSE Research and Innovation
Parable of the Talents. Octavia Butler. Seven Stories Press. 1998.
As a dyslexic, Black woman writing in a genre dominated by white men, Octavia Butler was a pioneering writer of science fiction. Her Parable of the Talents, published in 1998, figures alongside The Handmaid’s Tale as a remarkably prescient warning into the dangers of populism and conservative extremism.
Recommended by Joss Harrison, DAWN Communications Manager and Centre Assistant at LSE’s Phelan US Centre
Strong Female Character by Fern Brady. Brazen. 2023.
Comedian Fern Brady writes with wit, candour and brutal honesty about growing up with undiagnosed autism (a condition frequently under-diagnosed in women) as she flounders through her early years existing on the edge of understanding. Post-diagnosis, she shares how autism has shaped every area of her life, from friendships and relationships to education and career choices, as well as the danger that comes with trying to match others’ baffling social cues. An enlightening and original voice for anyone seeking to understand autism from the female perspective.
Recommended by Helen Flood, Marketing and Project Manager, in Consulting at LSE Research and Innovation
Activist Affordances: How Disabled People Improvise More Habitable Worlds. Arseli Dokumacı. Duke University Press. 2023.Activist Affordances argues that we can all create a more habitable planet if we learn from the adaptive ways in which disabled people improvise everyday tasks. Connecting ideas from the fields of ethnography, psychology, disability studies and performance studies, this is an original book that challenges normative, ableist conceptions of activism and environmental protection. You can read a review of it by Kostadin Karavasilev on LSE Review of Books.
Recommended by Anna D’Alton, Managing Editor of the LSE Review of Books Blog
LSE Review of Books thanks all the members of the LSE community who contributed to this reading list with their book recommendations.
Note: This reading list gives the views of the contributors, and not the position of the LSE Review of Books blog, or of the London School of Economics.
Parks Are Becoming More Accessible, With Help From All-Terrain Chairs
Three great stories we found on the internet this week.
Track changes
Across the US, efforts are growing to make the outdoors more accessible to people with disabilities. In Minnesota, 13 state parks now offer track chairs, which can be borrowed for free. In place of wheels, these chairs have continuous bands of treads like you’d see on a tank or a caterpillar.
At one park, Split Rock, the chairs were tested, with officials tracking which routes fit the their ability and battery range. Out of the first 35 days that a chair was available at Split Rock, it was reserved 22 times. Other states, including Georgia and Michigan, also have track chairs in multiple locations.
Of course, these high-tech chairs are just one way of accessing a landscape (and not appropriate for certain kinds of protected areas). As Mike Passo, executive director of American Trails, explained, one of the most important ways to improve access is simply to communicate well: “Every person with a disability has different needs and if I understand what I’d be getting into, then I can choose the experience that’s going to be accessible to me.”
Vending support
Naloxone — the medication used to reverse opioid overdose, also known by the brand-name Narcan — is becoming more widely available. But some places, especially rural communities, are still seeking ways to effectively distribute it.
After the Johnson Health Center in northern Vermont began making the medication available throughout the building, Caroline Butler, the center’s founder, noticed that the naloxone boxes supplied in the restroom were disappearing the fastest. Why? The anonymity, she surmised. So, in an effort to make the medication discreetly available, the health center installed a naloxone vending machine. Enter a code, and out pops a box.
In its first month, the machine was used almost every day, and 107 boxes were distributed. “This community has been pretty hard hit,” Butler said. “And the naloxone machine actually has been a really good place for conversations to start.”
Pumped up
A heat pump revolution is underway in an unlikely place: Whidbey Island, in Puget Sound north of Seattle. The small island known for its natural beauty is on the path to decarbonization thanks to Kicking Gas, a coalition using a novel funding approach to make heat pumps affordable for the community.
Crushed by negative news?
Sign up for the Reasons to be Cheerful newsletter.
[contact-form-7]
For eligible households, Kicking Gas covers 20 to 50 percent of the installation costs and offers low-interest microloans for the rest. The project is backed by a $1 million grant from Washington State University, and the coalition has installed 117 heat pumps since October 2022.
“It’s revolutionary to be able to offer folks something that’s high quality and low cost and impacts human health in the ways in which it does,” said Ian Jackson, a Whidbey island resident who purchased a heat pump through Kicking Gas.
The post Parks Are Becoming More Accessible, With Help From All-Terrain Chairs appeared first on Reasons to be Cheerful.
Valuing Women With Disabilities
Valuing Women With Disabilities: Infantilised, Medicalised, Pauperised? Disability is too often framed as separate and foreign to what matters for women (Frances Ryan). The relative absence of disability in the politics of the feminist movement, as Rosemarie Garland Thomson suggests, means ‘that feminist assumptions can fail to take into account disabled women’s situations’ because ‘some of the differences that disability provokes can complicate feminism’s understanding of female bodies and the oppression of them’. This leads Susan Wendell to posit that: 'we need a feminist theory of disability. Both because 16 per cent of women are disabled, and because this oppression of disabled people is so closely linked to the cultural oppression of the body'. The seminar asks has the feminist movement and its scholarship too often forgotten disabled women? How do we ensure scholarship, across the humanities and social sciences, takes an intersectional approach to understanding multiple identities and experiences of women with disabilities from Black and Minority Ethnic communities?
In this seminar Dr Helen Brookman celebrates the work of Anna Gurney, a pioneering nineteenth-century scholar of Anglo-Saxon, who became a wheelchair user following an illness in childhood. Dr Brookman examines the impact Gurney's disability had on her scholarly praxis and considers the implications for writing the feminist history of scholarship.
Julie Jaye Charles FRSA SARSM is Chief Executive and founder of Equalities National Council of Disabled People and Carers from Black and Minority Ethnic communities. For 30 years, Julie has been deeply involved in developing Black (BME) community driven strategies directly on improving the well-being, representation and social inclusion of those communities. She will discuss her vision of working with government to recognise and abolish the multiple inequalities and social exclusion which form the many barriers that undermine the value of BME disabled people and carers, across the spectrum of Health, Social Well-being and Care, Housing, Employment, Volunteering, Education, and Crime.
Autonomy, Community, Destiny: Re-Imagining Disability
The second seminar in the Disability and Curriculum Diversity series at TORCH The second seminar in the Disability and Curriculum Diversity series at TORCH with Elizabeth Frood (Associate Professor of Egyptology, Oxford), Dom Hyams (Producer and Editor-in-Chief, Power100) and Marie Tidball (Research Associate in Law, Oxford) .
Professor Elizabeth Frood speaks on the way her own acquired disability has had an impact on re-framing how she does fieldwork and how this has led her to adapt the methodologies she uses as an Egyptologist. Entrepreneur, Television Presenter and Editor of Power 100, Dom Hyams speaks on the potential role of the AssistMi app and other assistive technology you work with, could have on revolutionising research, which not only makes fieldwork more accessible for disabled people but enables them as researchers to access important data which benefits academia more generally.
This event was chaired by Dr Marie Tidball.
Work, Time and Stress: Historical and Contemporary Perspectives
Stress & overwork in both education and professional life in the Victorian era and the 'dynamic' nature of disability and the impact of the stresses of modern life has. Professor Sally Shuttleworth (Faculty of English Language and Literature) will look at discussions of stress and overwork in both education and professional life in the Victorian era, based on her research. Although we are clearly living in a radically altered world, there are nonetheless startling similarities in the ways the problems of overwork have been framed and debated, then and now.
Dr Marie Tidball (Faculty of Law, Centre for Criminology and TORCH Knowledge Exchange Fellow) will talk about the 'dynamic' nature of disability and the impact that stresses of modern life have on its trajectories, employment and what people sometimes refer to as 'disability time'. That is, the changed experience of time due to pain, anxiety and stress caused by an impairment or the impact an impairment has on the length of time it takes to do 'activities of daily living' which in turn affects the availability of time as a resource which has value, such as getting dressed takes longer for prosthetic limb wearer, the increased extent of email, and related issues for people's energy levels and productivity. This has an interesting impact on the number of hours disabled people may have available or may be able to work and thus a factor affecting the disability pay gap.
Complexity in our multiple identities: the 2017 Disability Lecture
University of Oxford Annual Disability Lecture
Disability Narratives and Histories
Launch event for the TORCH Disability and Curriculum Diversity series.