disability
The Arizona School Setting Kids With Autism Up for Success
Like many students across the country, 16-year-old Ayden von West has high hopes for his education and career once he graduates from high school. “I want to get into engineering,” he says. “I’m probably going to go to college for aerodynamics or aerospace engineering because I want to get more into the engineering and flight design of drones.”
Statistically, however, von West faces a more difficult path than most do when it comes to achieving his dream. That’s because von West is autistic.
Students with autism spectrum disorder (ASD) face tough odds after high school: According to a study published in the medical journal Pediatrics in 2012, only 35 percent of 18-year-olds with ASD go to college, and of those who graduate, only 15 percent are employed. More recent studies have similar findings: Only 36 percent of young adults on the spectrum attempt postsecondary education, including two- and four-year colleges or vocational schooling. Of those who do, only 38.8 percent will complete their degree. This means that only about 14 percent of students with autism go on to graduate from college.
High school math teacher Supreet Kaur, AZACS’ STEAM and Innovation Director, leads students in coding and robotics using Go Pi Go. Courtesy of AZACS
In many cases, what stands in the way is not the youths’ intellectual faculties or physical capabilities but instead the lack of specialized education and transitional support services.
In Phoenix, Arizona, one woman — and one school — is seeking to change that.
Diana Diaz-Harrison is the founder of Arizona Autism Charter School (AZACS), the first and only autism-focused charter network in the Southwest.
A former teacher, Diaz-Harrison was working in broadcasting and Spanish-language media when her son, Sammy, was diagnosed with autism at age two. Finding it difficult to access quality public education or affordable private schooling as he got older, she immersed herself in his care and the educational best practices for the disorder.
Courtesy of AZACS
“People who don’t have expertise in the neurodiverse, or autism, might look at Sammy and think, ‘Just keep him busy; make sure he doesn’t get in trouble.’ But he can do better than that.” –Diana Diaz-Harrison, AZACS founder
“I did pay for private school for a couple of years, but that was not sustainable,” she recalls. “I learned that there were autism charters in other states, and I thought, ‘You know, somebody here in Arizona should start a tuition-free autism charter school in the state.’ After a lot of knocking on doors, I realized that that person had to be me.”
In 2014, Diaz-Harrison established the first AZACS campus for kindergarten through fifth grade. In its first year, the school served 90 students. Today, AZACS has expanded to almost 900 students across four campuses in greater Phoenix, including a high school and a fully accredited online component. And, in fall 2023, it opened a campus for grades six through twelve in Tucson.
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With an average student-to-faculty ratio of three to one, AZACS is set up to help students master the foundations in reading, math and science and help them develop behavior and social skills that will benefit them long after they leave the classroom. Learning modules based on Woz ED, an individualized STEM curriculum designed by Apple co-founder Steve Wozniak, teach both academic and social skills. Students can also participate in sports, fine arts, dance, gardening — they can even take care of the school’s two desert tortoises.
Caring for the school’s desert tortoises is among the activities open to students. Courtesy of AZACS
Nisha Sharma has been teaching middle school math at AZACS for three years. “AZACS takes a much more rounded approach to the education of our students,” she says. “I’ve worked in schools where they were very much targeting just ELA (English language arts) and math. We use a lot of hands-on tools, and we have smaller class sizes, which allows more one-on-one contact with our students and allows us to better prepare them for all those different fields.”
An elective culinary program offers high school students the opportunity to work in a professional commercial kitchen. Upon completion of the course, the students can receive their food handler’s certification, which helps to qualify them for jobs in the restaurant industry. The school also operates a student-run coffee shop, Puzzle Press, that provides drinks to the teachers and other staff members.
“Kids make the coffee. They learn measurements, payment, money skills,” Diaz-Harrison explains as she sips from a to-go coffee cup, the label of which showcases a puzzle piece logo. “Autism is a spectrum. There are some kids who are very intellectually impacted like my son. Yet he can be productive. He helped make this coffee. He made the label. People who don’t have expertise in the neurodiverse, or autism, might look at Sammy and think, ‘Just keep him busy; make sure he doesn’t get in trouble.’ But he can do better than that. Every human needs a certain level of feeling productive, having a reason to get up in the morning.”
Courtesy of AZACS
“Maybe they want to go into web design or the more technological aspects of the career paths, and here they get that option before venturing out into the real world where even we, as neurotypical people, struggle with the day to day.” –Tyler Sherrill, AZACS middle school science teacher
School initiatives like Puzzle Press are aimed at improving employment prospects for individuals with ASD — prospects that are statistically as dismal as those for higher education. A 2015 Drexel University report found that “only 58 percent of young adults on the spectrum worked for pay outside the home between high school and their early 20s.” Those who do work often hold low-skill, low-paying jobs.
To date, AZACS has produced two small graduating classes: four students and six students, respectively. “We just had our first kiddo who went on to a four-year college, to Grand Canyon University. He’s in a special program there, but he’s doing well,” Diaz-Harrison notes with pride. Other graduates have gone on to attend Scottsdale Community College or join the workforce. One entered his family’s auto mechanic business.
“We’ve come a long way in providing education, but there’s a lot of work to be done regarding what happens post-school,” Diaz-Harrison explains. “It’s amazing that some of our kids can go to college or other career paths and have that intellectual ability. They just need help with executive functioning and social skills, but they can be trained on that and be wonderful. That’s why we’re taking matters into our own hands and building something that’s a good bridge between when they age out and we technically can’t serve them as a school.”
Supreet Kaur shows a high school student how to correctly use code to control the dancing robot as part of AZACS’ Woz ED curriculum. Courtesy of AZACS
In Arizona, charter and public schools can only serve students in grades K through 12. However, students with special needs can remain in school until they turn 22. AZACS’ culinary program and coffee shop are part of the school’s Post-Secondary Innovation and Entrepreneurial Career Education (PIECE) Academy, which provides career and vocational training for students ages 18 to 22. It includes a specialty STEAM lab where students such as von West learn how to do things like design, 3-D print and fly drones — and at the end of the module are eligible for an FAA drone license. A vocational lab and internships with local businesses also are part of the academy and help make students work-ready.
And recently, AZACS was awarded a new state contract that allows it to offer supported employment for young adults past age 22.
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“That’s a very vulnerable time for [young people], because for those who are not necessarily eligible to go to college or need supported employment, there’s not much for them to do after 22,” Diaz-Harrison says. “Our students who age out or graduate can flow into this if it’s a good fit for them.”
To that end, in 2023, AZACS purchased the building that houses its administrative offices. On the ground floor of the structure, which is adjacent to the school’s main campus in midtown Phoenix, it will open four businesses that will serve the public: a shipping and receiving depot, similar to a UPS store; a community-facing branch of Puzzle Press; a retail shop that will produce and sell branded items, such as shirts and jackets; and a coding and gaming design studio called Game Changer Studio. Students and graduates will operate the businesses.
A rendering of the future public-facing Puzzle Press branch. Courtesy of AZACS
“A lot of times as teachers, we hear the questions, ‘Why does this matter? Why do I need to know this?’” says middle school science teacher Tyler Sherrill, who has been with AZACS for four years. “These businesses will let us say, ‘Here are four opportunities where you can use these skills.’ They will allow the kids to branch out and see where they want to go — do they want to be in the back of a company, such as with our T-shirt-making business, or do they want to be up front dealing with customers at our Puzzle Press coffee shop? Maybe they want to go into web design or the more technological aspects of the career paths, and here they get that option before venturing out into the real world where even we, as neurotypical people, struggle with the day to day.”
According to Diaz-Harrison, the businesses, complete with a ribbon-cutting ceremony, will open on June 15 — Sammy’s 22nd birthday.
“Part of my goal is changing the narrative and showing the world what students with autism can do and flipping that narrative,” Diaz-Harrison says. “Yes, the challenges are real, but these guys with the right support can overcome them and do amazing things.”
The post The Arizona School Setting Kids With Autism Up for Success appeared first on Reasons to be Cheerful.
Private Equity in Public Services: The Case of Special Educational Needs Schools
Earlier this month, a meeting of Nuneaton Borough Council attracted controversyl after a video showed members referring to children with Special Educational Needs and Disabilities (SEND) as “just badly behaved” and flippantly asking whether the growing numbers of SEND pupils in state schools was “something in the water”.
Nuneaton currently has 15,000 SEND children in state schools, which reflects growth in SEND pupils across the country, but the funding for such children has failed to rise in response leaving parents at the end of their tether.
Byline Times investigated to find out why.
Problems in the State Sector
Kate Atrill-Hewitt is 37 years old and lives in Ivybridge, Devon with her husband and 9-year-old son “J” who is Autistic. Earlier this month, she spoke to Byline Times expressing her frustration at the Local Authority’s inability to provide adequate help for J, whose Education Health & Care Plan (EHCP) has not been updated since he was in Reception class. “I’m having a nightmare and very likely going to de-register my son because of it, [because] his needs are not being met,” she told us. “The constant fight is getting to me and I just don’t know where to go to get this heard and sorted”.
No longer coping in his mainstream primary school, J has become a target for bullies and Kate believes he needs to be in a special school, but the Local Authority has told her that he does not meet the threshold. J’s SENDCO (teacher in charge of the in-school SEND team) agrees with Kate and has also presented his needs to the Local Authority, who Kate says “aren’t listening”.
At the end of her patience, Kate told us that she is now looking into finding an Educational Psychologist to assess J and hopefully get him the help he needs, but a House of Commons debate on SEND Provision and Funding last month suggests that this may not be any easier.
Held on January 14th, the debate heard from a number of MPs on the Government’s failure to support SEND departments across the country. The presence of Educational Psychologists was raised by John McDonnell, Labour MP for Hayes and Harlington, who pointed out that “88% of local authorities are reporting difficulty in recruitment; 48% are citing pay as a reason”; adding that “this year, for the first time in its history, the Association of Educational Psychologists took industrial action because it was desperate on the issue of pay.”
Pay and funding was a central focus of the debate, with MPs from various wards pointing out that local councils sat on the verge of bankruptcy. The reasons for this are numerous but appear to be partly caused by a growth in the number of privately-run special schools siphoning funding from the public pocket.
The Rise of the Private Sector
Private schools operate outside the Local Authority and are funded independently but, according to a report by the British Educational Research Journal last year, demand for special school placements has so outstripped the number of places available in state special schools, that Local Authorities have had no choice but to place children in private provision. These placements are, according to the National Audit Office, one of the main reasons that Local Authority ‘high-needs’ budgets are so painfully stretched.
Private schools are permitted to run as for-profit enterprises, meaning that there are no laws limiting the amount they can charge in fees. Whilst many private special schools are run by charities, a growing number are not leading them to operate on the same for-profit basis as other private establishments.
Places at state-owned special schools currently cost local authorities between ten and thirty thousand pounds per pupil, per year. Their privately-owned counterparts are charging councils up to three times more than this, sucking money from an already decimated public sector. The government has declined to raise state school SEND funding for the last ten years for reasons unknown, but a deep dive into the owners of the private schools led to some interesting revelations.
For the last few years, private equity companies have been buying up large swathes of the public sector, including care homes, schools and GP surgeries. Special schools appear to be the latest hot property and our investigation has revealed the owners of some companies to be major Tory donors, giving the Conservative party more than a quarter of a million pounds between them.
Sovereign Capital Partners and Octopus Investments are the heaviest hitters, with Sovereign’s CEOs donating £211,844 to the Conservative party between 2008 and 2012.
In 2018 Sir John Nash, founder of Sovereign, was also revealed by openDemocracy to be the sponsor of a number of “free schools” and had previously been made schools minister by Michael Gove. Whilst this sponsorship did not give him ownership of the schools, it did allow total control over their governance. According to Companies House, Sovereign made £2.4 million profit in the last financial year. They did not reply to Byline Times requests to comment.
Octopus Investments have also forged close bonds with the Conservative Party. In 2018, their CEO, Christopher Hulatt, spoke at a Conservative conference arranged by the opaquely-funded Adam Smith Institute. Giving more than £26k to the Tories between 2018 and 2019, they are the main investors in the Aurora Group, which runs 15 special schools across the UK.
A spokesperson for Aurora told Byline Times that the company plays a key role in providing high-quality education, care and support services for people with special educational needs, and that since 2015 they have provided more than 1,000 much-needed places for children, young people and adults.
The spokesperson also confirmed that their CEO Chris Hulatt "made a personal donation of £2,500 to the local association of his constituency MP, Bim Afolami MP, who represents the Conservative Party" but went on to say that Hulatt "is not a member of any political party and attends both Labour and Conservative party conferences. In his role as a co-founder of Octopus Group, Chris engages with politicians from all parties.”
Sovereign Capital had not responded to our request for comment by the time of publication.
Troubling Conservative Attitudes
Attitudes of Conservative MPs towards SEND children are another part of the problem. Selaine Saxby, MP for North Devon, spoke out in the January debate, describing Devon as being “in the middle of a special educational needs pandemic” and said that “we seem to have far too many children being given a label, rather than the help they need to fulfil their potential.”
The idea that the problem lies in growing diagnoses and parents’ desire to “label” their children, was echoed by Councillor Clare Golby at the now-infamous Nuneaton Council meeting and appears to be the basis for many Tory rebuttals to their decade of SEND failures.
Golby’s statement, that parents were “swapping tips” on how to get a diagnosis, does not reflect reality, which is that children in wealthy families were significantly more likely to receive accurate, timely EHCP diagnoses than their poorer peers because parents in wealthier areas tend to be better educated and more aware of what to say on forms to ensure they get the help their child needs.
Byline Times contacted Devon County Council for comment but has, as yet, received no reply. We also reached out to the Department for Education and their spokesperson said:
“Every child deserves to have access to education that meets their needs. Our recent Improvement Plan will reform the support system for children with Special Educational Needs and Disabilities, prioritising earlier intervention and creating consistent high standards across the country.
“We are also putting significant investment into the high needs budget, which will have risen by over 60% to £10.5 billion next year since 2019/20.”
Theatre director and parent of a disabled adult child, Stephen Unwin, has written extensively on this subject, comparing the Conservative presentation of disabled people as a burden on the state to the Nazi eugenics programme.
In a recent piece for Byline Times, Unwin noted that part of the problem with council budgets is that parents of disabled children often take them to tribunal to get their children’s cases reviewed. These tribunals are, more often than not, won by the parents and have so far cost Local Authorities more than £92 million in legal fees. Likewise, Unwin has noted that “£66 million of state and private investments held in child trust funds set up for disabled children cannot be accessed by their beneficiaries because they lack ‘capacity’, which also adds to the burden on Local Authority budgets."
London Council Breaches Human Rights Law After Subjecting Asylum Seeker to Degrading Treatment
A local authority has been found in breach of the European Convention on Human Rights (ECHR) after it subjected an asylum seeker to degrading treatment for a period of at least seven months.
A High Court judge ruled at the end of last month that Croydon Council breached Article 3 and 8 of the ECHR, under the Care Act 2014, in what is believed to be the first ruling in such a case where these duties overlap.
This is because the ECHR breaches were in response to how Croydon performed its Care Act 2014 duties in failing to assess the asylum seeker’s "accommodation-related" needs and failing to provide suitable accommodation for him and his family.
Garden Court Chambers (GCC) represented the claimant, named only as TMX, and were instructed by Monica Kreel of TV Edwards Solicitors.
In a release GCC said: “The lengthy and detailed judgment provides helpful guidance on the complex interplay between the obligations of a local authority under the Care Act [2014], and the obligations of the Secretary of State for the Home Department under Section 95 of the Immigration and Asylum Act 1999.”
“It is also a rare example of a local authority being found in breach of Article 3 ECHR for its failure to comply with its duties to provide care and support, including accommodation.
“As far as we are aware, it is the first time that a local authority has been found in a reported judgment to be in breach of Article 3 ECHR by reason of a failure to perform its duties under the Care Act [2014].”
Articles 3 and 8 of the ECHR are aimed at ensuring “no one shall be subjected to torture or to inhuman or degrading treatment or punishment”, and that “everyone has the right to respect for his private and family life, his home and his correspondence”.
So the question before Mr Alan Bates, sitting as Deputy High Court Judge, was this: “Where an asylum seeker’s physical or mental condition is such that they have accommodation-related care needs, who is responsible for providing the accommodation for that person? Is it the local authority responsible under the Care Act 2014, or does responsibility lie with the Secretary of State under Section 95 of the Immigration and Asylum Act 1999?”
The Claimant’s Case
TMX is a 50-year-old asylum seeker whose claim remains outstanding. He has progressive multiple sclerosis (MS) and functional neurological disorder. He also suffers from severe and varied nerve pain – called paraesthesia – and also has strong muscle spasms. He has described the pain he experiences as “agonising” and is a wheelchair user who cannot mobilise independently.
From June 2022, he had been accommodated by the Home Office under Section 95 of the Immigration and Asylum Act 1999 in one ensuite bedroom in an asylum hotel facility in the Croydon area. That single bedroom was shared with his wife and their two children.
GCC described this as “manifestly unsuitable” due to it being on the fourth floor as the lift could only just fit his wheelchair in and could not take him all the way back down to street level.
At the same time, the building had steps at the front and the platform lift was “out of order the majority of the time”, meaning TMX was in effect confined to the building, and at significant risk in event of fire.
GCC explained: “The bedroom was too small for him to store and use his disability-related equipment. The bathroom was inaccessible and did not have adapted toilet/shower facilities. The lack of space for him to mobilise using equipment meant he was bedbound.”
“The room was badly ventilated, and TMX would become unbearably hot in the summer months, exacerbating his MS symptoms. The room afforded TMX no privacy from his children for his personal care. His children had to look away, or wait in the communal hallway when his wife provided his personal care as he lay in bed.”
TMX’s case comes after the Byline Times as previously reported how 75% of councils have logged complaints about the conditions of asylum seeker accommodation, at a time when the Government had tabled plans to remove their ability to investigate those complaints.
In April last year, it was revealed that the Government planned to “legalise” ‘hazardous’ accommodation for asylum seekers by exempting refugee housing from licensing rules for homes of multiple occupations (HMOs).
HMO licences are one of the primary ways authorities ensure homes filled with large numbers of people they were not initially designed to fit aren’t a fire risk, dangerously overcrowded, damp, mouldy, or otherwise unsafe.
However, the Home Office has in the last week cancelled plans to remove housing protections for asylum seekers after a judicial review was brought by a number of claimants. It said: “It is longstanding government policy that we do not routinely comment on individual cases.
“If an individual does not have the right to be in the UK, we will make every effort to return to their country of origin or a safe third country.”
The Home Office did not respond to a request for a comment on TMX’s case.
The High Court Ruling
During the hearing, there was no dispute that TMX had eligible needs for care and support under the Care Act 2014, and a care package was in place at all relevant times. Indeed, Croydon’s own assessments acknowledged the unsuitability of the accommodation.
Where there was clarity needed was in the fact that while it was Croydon which was in fact accommodating TMX, the unsuitable property was provided by the Home Office. But on this point the court found in TMX’s favour, which was that the responsibility lies with the local authority.
In handing down his detailed judgment, Mr Bates explained: “The council should, when assessing the claimant’s needs for care and support including accommodation-related needs, have ignored any current or potential provision of accommodation for him under Section 95 [of the Immigration and Asylum Act 1999].”
Having found that the council was responsible for accommodating TMX and his family, the judge went on to consider whether, by failing to provide suitable accommodation to him, had breached Article 3 and 8 of the ECHR.
He added: “I am satisfied that the claimant’s remaining in unsuitable accommodation interfered with his physical and psychological integrity to a high degree comparable to the level crossing the severity threshold for breaching Article 3.
“I have so found essentially because his remaining in that accommodation has been a ‘but for’ cause of various impacts on him which are intimately connected with the concept of ‘private life’ for the purposes of Article 8.
“Those impacts have, in my judgment, substantially prevented him from: (a) pursuing any meaningful personal development, and (b) developing relationships with other human beings and the outside world save for his immediate family with whom he lives.”
Monica Kreel, TMX’s solicitor from TV Edwards, said: "This is a fantastic judgment for our client and for other disabled asylum seekers. The High Court has recognised that Croydon Council, in ignoring our client’s dire accommodation and refusing to resolve the situation when it had a duty to do so, breached his Article 3 and 8 rights. He has now, finally, been moved to a small flat where he is receiving his care with dignity. "
For its part, Croydon said it has accepted the High Court ruling and apoligised to TMX. A spokesperson added: “Our resident was being housed by the Home Office in line with 2018 Home Office guidance for asylum seekers with care needs.
“Despite our attempts to provide the best possible social care, it is now clear that the unsuitable accommodation was a barrier to this. We are sorry that our resident had to go through the courts to get this outcome and we will of course be taking on board lessons from this case in our work with other residents.”
‘Fighting the Five Giants: It’s Time to Renew Our Social Contract’
The concept of a social contract for welfare support and national health, the 1942 Beveridge Report and what this Liberal politician termed the ‘five giants’ – want, disease, ignorance, squalor and idleness – still strikes me as ground-breaking.
Even the old posters used to campaign for its implementation remain as powerful today as they surely were then. In one, the ‘giants’ are portrayed as people. I’m most struck by idleness depicted as a forlorn unemployed man slouching against a lamp post, a factory behind him with a large ‘closed’ sign hanging over it.
In terms of disabled people today, we’d likely have a ‘scrounger’ or ‘fraudster’ sign, perhaps combined with some representation of disease. But maybe ‘hopelessness’ would be a better term than idleness?
The idea of the five giants took hold at a time when there was less division in society. When, good or bad, the delineation between classes was more comfortably understood. When Winston Churchill made the much-shared statement: “Rank me and my colleagues as strong partisans of national compulsory insurance for all classes for all purposes from the cradle to the grave.”
But we now take for granted those measures that led to the founding of our NHS, when political parties cooperated on matters of importance to society as a whole.
The odds were different then. This was in the midst of the Second World War, when a healthy, fighting fit proletariat was required, and there was nothing to take for granted. Those five giants loomed everywhere outside of the gentry and their financial security. My mother remembers the lottery of dentistry during her 1930s childhood – sharing gruesome stories of who could have a filling first in a family of many siblings.
There was pragmatism in the debates back then; an awareness of sickness that was horrifically close to most people’s lives. Now, we have an established narrative, urged on by recent governments – and the overwhelming dross in the mainstream media – which wants to deny the modern equivalents of those five giants as relevant.
We are promised so much in our technological age, on the back of a strain of Conservatism that enjoys promoting the idea that we can somehow sidestep poverty, illness and impairment.
I’m fearful that it’s too late. That we’ve taken for granted for so long the notion of state support that we believed would always be there: a reliable NHS hovering in the background, somehow still operating, even as eager politicians score points for its failings or successes and it shatters under the weight of so much pressure.
I’ve lived through my own sociology experiment in social care and NHS support. I’m my own test subject, pushed through various medical departments and services both as an inpatient and outpatient. My experience suggests that the NHS is not only broken but gorged upon by the private sector with a sly side-glancing secrecy, as it sucks up every chance to make profits.
But I refer to myself as an NHS baby. And to think of this in the broadest sense encourages me to puff up with a strange patriotic and perhaps socialist pride. Even a sense of ownership, from all those years lived through a system that worked to keep me well, and more recently alive, brings me hope.
I remember my GP regularly visiting my home from a young age to examine my joints. I remember the touching trust I felt in most of my doctors and health professionals. They were there for me. They knew me over the course of many years.
Recently, faceless managers and administrators make me feel as though I’m making a fuss, that I don’t understand cost implications, and that I want too much – as if my needs are an outrage.
I can’t even begin to talk about the attacks on benefits, social care, and the 2005 closure of the much-loved means of choice and control gained by disabled people via the Independent Living Fund.
It’s very difficult to argue that the original principles underpinning the NHS remain. If you have no money you can no longer expect a decent, functioning level of support from systems that are supposedly there to manage your health and ability to thrive. These failures begin, as in my case, within the home. With doctors who don’t visit. Services that aren’t available. Dots on a chart; numbers on a spreadsheet. None of which equates to the delivery of everyday workable healthcare and support.
The problem is every one of us will experience illness, damage, sickness, impairment, disability and, inevitably, old age. And so, if we believe in a fair society that operates with compassion and equity, we need to reformulate our own five giants that are relevant today.
A healthy, cared for, society that has few wants at a basic level will surely thrive and, at a personal level, the construction of artificial barriers via attitudes and environment can and should be removed. Very few of today’s politicians have the interest or the humanity to do so.
The pandemic undoubtedly stands as a sombre wake-up call for such disregard. Millions dead and many more living with the ongoing consequences of the Coronavirus. So much for the Brave New World of the unbreakable, never-damaged, uber human! Through my own lived experience, and that of others, I know this is the ultimate lie.
Churchill, as a Conservative, spoke of the ‘cradle to the grave’. William Beveridge was a Liberal politician. And it was a Labour Government that enacted his report to create our welfare state and the NHS. It was an achievement of cross-party cooperation – not perfect, but of a like that we simply no longer see.
With all its flaws, let’s remember all the years so many of us have reaped its benefits. Not simply because we pay in for ourselves, and feel happy to pay in for those who can’t, but because it is the right thing to do.
There is now a grotesque disconnection between governments and public services, resulting in more than poor communication. We are a nation let down, in poor health, disappointed and baffled. Yet the individuals I meet, who care for me so well in hospital, keep my humanity alive and remind me that, in the end, there is good in people and the world.
Let’s remember the humanity those five giants brought out in our society and politics. And prepare to renew our fight with their latest incarnations again today.
Event: ‘Never Again Must Never Again Be Used to Justify Genocide’
Register for this webinar here. An organiser wrote:
The slogan Never Again symbolised the determination of anti-fascists and the labour movement that after the Holocaust, genocide must never happen again – that no one should be annihilated because of an accident of birth and who they are.
Six million Jews, a million Gypsy Roma, half a million mentally and physically disabled, to say nothing of the millions of prisoners of war, Poles, Russians and other people who were exterminated by the nazis between 1939 and 1945.
Zionism however drew different conclusions from the Holocaust. As Professor Yehuda Elkana, a child survivor of Auschwitz and the Rector of the Central European University wrote in Ha’aretz, in ‘The Need to Forget’ in 1988:
a profound existential “Angst” fed by a particular interpretation of the lessons of the holocaust … that we are the eternal victim (arose). In this ancient belief… I see the tragic and paradoxical victory of Hitler. Two nations, metaphorically speaking, emerged from the ashes of Auschwitz: a minority who assert, “this must never happen again,” and a frightened and haunted majority who assert, “this must never happen to us again.”
The Holocaust played an important part in the establishment of the State of Israel yet it was because of the Nakba, the expulsion of three-quarters of a million Palestinians from their homeland, that a Jewish State was formed. A series of massacres accompanied the Nakba which were aimed at ‘encouraging’ the flight of the Palestinian refugees.
In our Public Meeting we not only have Professor Ilan Pappe, the foremost historian of the Nakba, who has written The Ethnic Cleansing of Palestine but Ghada Kharmi, a British Palestinian doctor who was expelled by the Zionist militias in 1948 from her home in Jerusalem.
Also speaking are Stephen Kapos and Suzanna Weiss, two child survivors of the Holocaust who were hidden from the fascists in Budapest and France, along with Tony Greenstein who has written Zionism During the Holocaust .
Holocaust Memorial Day Meeting
Saturday 27 January 7 pm
Never Again Must Never Again Be Used to Justify Genocide
Register in advance for this webinar here. Event details are here.
The Awesome Rise of AI… You Must be Choking
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This article’s headline is not an error. Welcome to my world of the use of artificial intelligence in voice dictation! Shoking? Cokeing? Joking.
It’s the fault of Dragon Dictate, a conversational AI software, with which I’ve had a love-hate relationship with for many years.
Without it, I wouldn’t be writing this column at all. Since September, I now use the app Dragon Anywhere on my mobile, which has, in many senses, revolutionised my working life – particularly since I experienced brain haemorrhages last August. Combined with arthritis, holding a pen or accessing a keyboard for any length of time is not workable, which means that when Dragon works, my words fly.
But when it doesn’t, the AI joke isn’t funny anymore – no matter how many laughs Alexa is programmed to blast at you. For those of us it might truly help, when AI is wrong, we fall further into inaccessibility.
Apart from Dragon, I have two Alexas, one at each end of my flat. I cannot overestimate how helpful and essential this type of AI has been during my post-stroke recovery, giving me access through my voice commands to everything from the local weather, music streaming platforms, and beloved Aunty Beeb podcasts. When you have negligible mobility, there is a comfort in these actions, and Alexa definitely connects me to a sense of independence I feared had further slipped away from me.
But every other instruction ends in a screaming match of as many obscenities as you can imagine (with some of my own that I invent to insult the stupid bot). And here’s the crunch: AI, as merely a computer programme, does not understand our human subtleties. And I say this with feeling as a writer: it might learn words and see when they are used together, but it does not know what they mean, and bases responses on those patterns that it recognises.
When Lost Humanity Breaks Down Healthcare
Penny Pepper reflects on the concerning and uplifting behaviours she witnessed during her four-week stay in hospital this summer
Penny Pepper
I knew this in my gut from the first moment I wrestled with Dragon Dictate in its earliest form many years ago – when it called a close friend ‘Tank’ instead of ‘Steph’ no matter what I did with the correction facility.
Lately, despite improvements, other platforms show errors. My weary favourite so far is when they turn ‘Penny’s’ into ‘penis’.
Compare two descriptions of the same photo of me and my visually impaired friend, T, at a Charing Cross crêpe café, a lively colourful scene that invites proper description.
The Facebook automated AI description reads: “Maybe an image of six people”. When asked again: “No description available. Specsavers.”
The Be My Eyes AI description reads: “The picture shows two women sitting at a table inside a café with a large glass window through which you can see the street outside and a Specsavers store. One of the women is sitting in a wheelchair. She has short hair with bangs, dyed pinkish-purple, and is wearing glasses. Smiling, she is dressed in a red-and-white polka dot jacket. The other woman has shoulder-length blonde hair, wearing a black dress with small white floral patterns.”
Many in my networks have expressed concern over AI’s cost and the not-exaggerated fear that disabled people will be, yet again, used as pawns in the grasping capitalist system. “I feel very afraid of it,” one friend said. “Replacing people with AI to cut the cost of social care.”
The Japanese have led the way with practical AI robotics, although not all has gone smoothly. There was Robear, a 2015 prototype lifting robot, and scarily, others soon followed.
“Some are meant for physical care,” according to James Wright in the MIT Technology Review. “Including machines that can help lift older people… assist with mobility… detect falls… feed them, and help them take a bath or use the toilet.”
Japan also had Hug, a lifting robot; and even Pepper(!), a more humanoid robot. EllieQ is a recent AI robot for the lonely elderly, presenting as a comforting pet (studies show that 95% of owners of this bot felt it reduced their loneliness).
I haven’t found a piece of AI software I would trust to wipe my arse, let alone style my precious hair. Yet frustrating barriers can be removed by this technology.
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“My phone is a little mini-computer with many apps that make my life easier… things like smart light bulbs can be very useful,” says K. While H muses that Alexa regularly makes a “heinous amount of mistakes and misunderstandings – AI is a bit like a child”.
T’s example shows AI in a positive light, and I know many disabled people, including myself, find great value in how such technology handles reminders with personal messages that can be honed to individual needs.
Since my brain traumas, and subsequent memory loss, I now have multiple alarms telling me what medication to take and when to take it without needing to touch or physically handle an object (even if the initial set-up and programming can be infuriating).
I’ve yet to investigate generative AI, the potential enemy of all writers. As a member of the Society of Authors, I will add my fears to its campaign detailing how we are likely to be at risk of exploitation with unauthorised, and unpaid, use of our work.
But one story from a friend about a Tesla car summed up so much about the AI debate: there’s a fart feature you can turn on through an app to, among other things, locate your car.
There you have the height of civilisation. A car that farts.
Penny Pepper is an award-winning author, poet and disabled activist whose work focuses on identity, difference and what makes us human
More than a Glitch: Confronting Race, Gender, and Ability Bias in Tech – review
In More than a Glitch: Confronting Race, Gender, and Ability Bias in Tech, Meredith Broussard scrutinises bias encoded into a range of technologies and argues that their eradication should be prioritised as governments develop AI regulation policy. Broussard’s rigorous analysis spotlights the far-reaching impacts of invisible biases on citizens globally and offers practical policy measures to tackle the problem, writes Fabian Lütz.
More than a Glitch: Confronting Race, Gender, and Ability Bias in Tech. Meredith Broussard. MIT Press. 2023.
Find this book: 
As the world witnesses advancements in the use of Artificial Intelligence (AI) and new technologies, governments around the world such as the UK and US the EU and international organisations are slowly starting to propose concrete measures, regulation and AI bodies to mitigate any potential negative effects of AI on humans. Against this background, More than a Glitch offers a timely and relevant contribution to the current AI regulatory debate. It provides a balanced look at biases and discriminatory outcomes of technologies, focusing on race, gender and ability bias, topics that tend to receive less attention in public policy discussions. The author’s academic and computer sciences background as well as her previous book Artificial Unintelligence – How Computers Misunderstand the World make her an ideal author to delve into this important societal topic. The book addresses algorithmic biases and algorithmic discrimination which not only receives increasing attention in academic circles but is of practical relevance due to its potential impacts on citizens and considering the choice of regulation in the coming months and years.
[More than a Glitch] provides a balanced look at biases and discriminatory outcomes of technologies, focusing on race, gender and ability bias, topics that tend to receive less attention in public policy discussions
The book’s cornerstone is that technology is not neutral, and therefore racism, sexism and ableism are not mere glitches, but are coded into AI systems.
Broussard argues that “social fairness and mathematical fairness are different. Computers can only calculate mathematical fairness” (2). This paves the way to understand that biases and discriminatory potential are encoded in algorithmic systems, notably by those who have the power to define the models, write the underlying code and decide which datasets to use. She argues that rather than just making technology companies more inclusive, the exclusion of some demographics in the conceptualisation and design of frameworks needs to stop. The main themes of the book, which spans eleven short chapters, are machine bias, facial recognition, fairness and justice systems, student grading by algorithms, ability bias, gender, racism, medical algorithms, the creation of public interest technology and options to “reboot” the system and society.
Biases and discriminatory potential are encoded in algorithmic systems, notably by those who have the power to define the models, write the underlying code and decide which datasets to use.
Two chapters stand out in Broussard’s attempt to make sense of the problems at hand: Chapter Two, “Understanding Machine Bias” and more specifically Chapter Seven “Gender Rights and Databases”. Both illustrate the author’s compelling storytelling skills and her ability to explain complex problems and decipher the key issues surrounding biases and discrimination.
Chapter Two describes one of the major applications of AI: machine learning which Broussard defines as to take
“..a bunch of historical data and instruct a computer to make a model. The model is a mathematical construct that allows us to predict patterns in the data based on what already exists. Because the model describes the mathematical patterns in the data, patterns that humans can’t easily see, you can use that model to predict or recommend something similar” (12).
The author distinguishes between different forms of training a model and discusses the so called “black box problem” – the fact that AI systems are very often opaque – and explainability of machine decisions. Starting from discriminatory treatment of bank loan applications, for example credit score assessment on the basis of length of employment, income or debt, the author explains with illustrative graphs how algorithms find correlations in datasets which could lead to certain discriminatory outcomes. She explains that contrary to humans, machines have the capacity to analyse huge amounts of datasets with data points which enable for example banks to make predictions on the probability of loan repayment. The mathematics underlying such predictions are based on what similar groups of people with similar variables have done in the past. The complex process often hides underlying biases and potential for discriminations. As Broussard points out,
“Black applicants are turned away more frequently than white applicants [and] are offered mortgages at higher rates than white counterparts with the same data […]” (25).
The book also demonstrates convincingly that the owners or designers of the model wield a powerful tool to shape decisions for society. Broussard sums up the chapter and provides crucial advice for AI developers when she states, advice for AI developers when she states,
“If training data is produced out of a system of inequality, don’t use it to build models that make important social decisions unless you ensure the model doesn’t perpetuate inequality” (28).
Chapter Seven looks at how databases impact gender rights, starting with the example of gender transition which is registered in Official Registers. This example illustrates the limitations of algorithmic systems as compared to humans, not only in light of the traditional binary system for assigning gender as male and female, but more generally the binary system that lies at the heart of computing. Both in the gender binary and computer binary framework, choices need to be made between one or the other leaving no flexibility. Broussard describes the binary system as follows:
“Computers are powered by electricity, and the way they work is that there is a transistor, a kind of gate, through which electricity flows. If the gate is closed, electricity flows through, and that is represented by a 1. If the gate is open, there is no electricity, and that is represented by a 0” (107).
When programmers design an algorithm, they “superimpose human social values onto a mathematical system.” Broussard urges us to ask ourselves, “Whose values are encoded in the system?” (109).
The resulting choices that need to be made within AI systems or forms used in administration often do not adequately represent reality. For people who do not feel represented by the options of male and female, such as gender non-conforming people, they are asked to make the choice in which category they fall even though this would not reflect their gender identity. Here again, Broussard reminds us of the importance of design choices and assumptions of coders which impact people’s everyday life. When programmers design an algorithm, they “superimpose human social values onto a mathematical system.” Broussard urges us to ask ourselves, “Whose values are encoded in the system?” (109). The chapter concludes with the challenge of making “technological systems more inclusive” (116) and argues that computers constitute not only mathematical but sociotechnical systems that need to be updated regularly in order to reflect societal change.
Computers constitute not only mathematical but sociotechnical systems that need to be updated regularly in order to reflect societal change.
The book successfully describes the invisible dangers and impacts of these rapidly advancing technologies in terms of race, gender and ability bias, making these ideas accessible through concrete examples. Ability bias is discussed in Chapter Seven, “Ability and Technology”, where she gives several examples, how technology companies try to provide technology to serve the disabled community in their daily jobs or lives. She gives the example of Apple shops where either sign language interpreters are available or where Apple equips employees with an iPad to communicate with customers. For consumers, she also highlights Voiceover screen reader software, auto-captioning and transcripts of audio or read-aloud functions of newspaper sites. Broussard points both to the advantages and the limitations of those technological solutions.
She also introduces the idea of tackling biases and discrimination with the help of audit systems
Readers are invited to reflect on concrete policy proposals and suggestions, on the basis of some ideas sketched out in last chapter, “Potential Reboot” where she shows her enthusiasm for the EU’s proposed AI Act and the US Algorithmic Accountability Act. She also introduces the idea of tackling biases and discrimination with the help of audit systems and presents a project for one such system based on the regulatory sandbox idea, which is a “safe space for testing algorithms or policies before unleashing them on the world” (175). The reader might wish that Broussard‘s knowledge of technology and awareness of discrimination issues could have informed the ongoing policy debate even further.
In sum, the book will be of interest and use to a wide range of readers, from students, specialised academics, policy makers and AI experts to those new to the field who want to learn more about the impacts of AI on society.
This post gives the views of the author, and not the position of the LSE Review of Books blog, or of the London School of Economics and Political Science. The LSE RB blog may receive a small commission if you choose to make a purchase through the above Amazon affiliate link. This is entirely independent of the coverage of the book on LSE Review of Books.
Image Credit: Vintage Tone on Shutterstock.
The Politics of Disability: A Forgotten Minister for Forgotten People
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The news last week that the Prime Minister had decided to do without a dedicated Minister for Disabled People came as a punch in the guts to many, with the journalist and campaigner Frances Ryan describing it as the "perfect final middle finger" from a dying Government which has spent the past 13 years "impoverishing and humiliating" them.
The announcement a few hours later – possibly in response to the uproar – of the appointment of Mims Davies as the Parliamentary Under-Secretary of State for Disabled People, Health and Work (alongside her responsibilities in the Department for Work and Pensions for, apparently, social mobility, youth and progression) did little to assuage the hurt.
The awkward truth, however, is that whoever takes on this role, none of this will make much of a difference, largely because the Government’s record in this area is so lamentable.
Some context might be useful.
It was the disability pioneer Alf Morris who was Britain’s first Under-Secretary of State for Disablement in Harold Wilson’s 1974 Government. Margaret Thatcher’s administration tried to take disabilities seriously, and John Major’s even passed the Disability Discrimination Act in 1995. From 1997, there were some fairly effective ministers under Tony Blair and then Gordon Brown, as well as welcome initiatives such as 'Valuing People’, the white paper on learning disabilities, in 2001.
Since 2010, the role has changed status and responsibility five times with 10 different ministers and secretaries of state being appointed. Taking on responsibility for the lives of disabled people seems to be simply an early stepping stone in a ministerial career.
David Cameron’s experience as the father of a profoundly disabled young man may have shaped his personal priorities but, in 2016, the United Nations Committee on the Rights of People with Disabilities concluded that his Government’s breaches of the treaty were "grave" and "systematic". A further review in 2018 discovered that, while modest progress had been made, successive administrations were still failing in their core duties (as further evidenced by their refusal to even attend a key UN session this year to discuss their ongoing failures).
A new report reviewed the deaths of 3,648 people with a learning disability – almost half died an avoidable death
Saba Salman
The Government produced its 2021 National Disability Strategy (2021) in response, full of warm words, eager commitments and noble aspirations. What is striking is the emptiness at the heart of its recent Disability Action Plan for 2023-24. This boasts of the now discredited Down Syndrome Act (the flaws of which Ramandeep Kaur and I outlined in these pages), as well as the British Sign Language Act, the basic stipulations of which, a recent survey found, were ignored by more than half of government departments.
The challenges faced by disabled children and their families are getting worse.
Most of the commitments made in the 2014 Children’s and Families Act have not been delivered and the key reform – the replacement of the Statements of Special Needs by the Education and Health Care Plans (EHCP) – has been implemented in such a haphazard way that disabled children are consistently let down.
Thousands of families have found themselves involved in expensive tribunals (which they nearly always win) pitted against local authorities which plead poverty while spending (in 2022-23) an astonishing £92 million on legal fees.
The Government’s SEND (Special Educational Needs and Disabilities) review of 2021 – described as "a response to the widespread recognition that the system is failing to deliver" – was greeted by the Alliance for Inclusive Education as an "all-round failure", while Disability Rights UK insisted that the plans weren’t radical enough and that investment in the future was "wholly insufficient".
The revelation that the Department for Education had allegedly been instructed to cut the numbers requiring an EHCP by an arbitrary 20% stoked the suspicion that a disabled person is regarded by this Government as an expensive burden, not as a fellow citizen who may need some help.
Every month, we hear new stories of abuse, neglect and cruelty towards disabled people, especially in institutions supposedly set up to care for them. In addition to the many residential and supported living places deemed ‘inadequate’ by the Care Quality Commission, many learning disabled and autistic people are still confined in deeply unsuitable assessment and treatment units.
When the decision was taken to close them down in 2018, they held 2600 people; five years later, that number has only reduced by 20. Of these, 215 have been detained for at least five years, and a 135 for more than 10. These people have committed no crime and a government that genuinely cared about disabled people could have solved the problem.
The already perilous state of disabled people’s lives has been exacerbated by the triple whammy of Brexit, COVID and the cost of living crisis. The recruitment crisis in the NHS and the care sector has had a particularly negative impact on disabled people and, as the Office for National Statistics explains, disabled people were at significantly greater risk of death from COVID-19.
Indeed, according to Public Health England, mortality rates for learning-disabled young people with no significant comorbidities were six times higher than the average. Thus, when Boris Johnson declared in one of his breaks from partying at Downing Street that they should "let the bodies pile high", it was the disabled as well as the elderly that he was consigning to death.
The cost of living crisis has had devastating consequences for disabled people, who often need special equipment, personal assistance and reasonable adjustments to be able to live decent lives.
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But the fact that the new Under-Secretary also has responsibilities for "health and work" has caused concern – it suggests that the planned replacement of the Department for Work and Pensions’ clunky work capability assessments with a new system which will find more people suitable for work, is being actively pursued.
One activist dubbed this reform "a smokescreen for cuts" and it sometimes feels that disabled people might be tolerated so long as they can be employed. Otherwise, well, it’s every man for himself, frequently driving the less able into poverty, isolation and abject despair.
Even problems that could easily be resolved are left unattended. For instance, almost £66 million of state and private investments held in child trust funds set up for disabled children cannot be accessed by their beneficiaries because they lack ‘capacity’. A simple adjustment in the process could sort this out. But nothing ever happens.
And when it does, as in the change of tack over the planned closure of ticket offices at railway stations, it’s only in response to a massive outcry by some very vocal physically disabled campaigners. It’s never because the people making the original decision had thought through the impact.
This furore about the status of the politician responsible for the welfare of disabled people is possibly a distraction. After all, if (as is evidently the case but often ignored) disability is a fundamental part of the human condition, do we really need a minister with specific responsibilities? Or should all parts of government have to engage with disability as clearly mandated by the Disability Discrimination Act (1995) and the Equality Act (2010)?
The real danger is that disability is regarded as a niche issue which only affects a small group who can easily be ignored. How do we ensure that the disabilities that so many of us experience is front and centre? We certainly don’t need any more ministerial photo ops, trumped up ‘listening exercises’ or the further erosion of our inalienable human rights.
The troubling fact is that most disabled people and their families feel that their lives are increasingly restricted and threatened. As they listen to powerful voices accusing them of being scroungers who must learn how to keep up in the great race of life, they sense the louring clouds of eugenics blotting out the sun, and ushering in a darker, colder time not just for them, but for all of us.
Stephen Unwin is a theatre and opera director, writer and teacher
Why the Blind Should Lead the Blind
Visually disabled people increasingly turn to institutions and support networks that are created, designed, and implemented by other blind people....
When Lost Humanity Breaks Down Healthcare
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As you linger through the endless dull hours that make up most of life on a hospital ward, great significance is attached to the slightest things and also to those who are suddenly close.
Nurse P was always late with the drugs trolley, but her kindness and her fastidious approach opened up conversations during my stint in August. However, as my consciousness came back with the realisation of delays, so did my awareness that the ward was understaffed. If you are the nurse who administers drugs and there are too many patients on a particular day, then hold-ups are inevitable.
I found out Nurse P was from Nepal. This fact excited me, and was a reminder of how much the NHS has always relied on immigration to ensure its smooth running. But Nepal? Intriguing. I admit a hundred muddled cliches of Kathmandu – of beautiful people and Buddhist monks – consumed me. Nurse P was likewise genuinely fascinated when she found out I am a writer, including for Byline Times, which she looked up on her first break.
The usual experience for a disabled person in hospital is one where you grapple with the constant curse of pity. Every day: poor you, how long have you been like this? As I got better, my well-known teasing wit returned. What – sorry for me after wild times in a London punk band and writing a sex book, not to mention several fiancés and two husbands? I would counter. Sometimes this works. But after the brain bleeds, this approach often jumps to a peculiar rabbit-hole of more pity and one that feeds the tiresome ‘brave’ and ‘courageous’ disabled trope.
A new report reviewed the deaths of 3,648 people with a learning disability – almost half died an avoidable death
Saba Salman
Nurse P, however, was that wondrous rarity: she immediately read my column and spoke to me about it the day after, telling me she would buy my memoir First in the World Somewhere. I’m sad that the new challenges I face have crushed my energy, meaning that I’ve yet to return to the hospital and thank her with a signed copy.
Another reason the drugs trolley was often late is plainly down to the despicable, self-interested approach the Tories have to running – ruining – the NHS.
Abuse I witnessed from male nurses on night shifts is surely an echo of the culture in which they thrive. A shortage of decent staff, often poorly paid, creates a cascading effect. Older women on this ‘frailty ward’ were easy targets for a type of toxic masculinity I will always find shocking – particularly as a disabled woman – when a patient opposite me was abused. Highly vulnerable and with dementia, she was what the news likes to term a ‘bed-blocker’, and these men tormented her as a source of sickening entertainment.
I went through the night time hell in a hospital ward for just under four weeks. On those dark nights, I wrestled with thoughts of medical ghouls – Harold Shipman, Beverley Allitt and, more recently, Lucy Letby. Not forgetting the long, loathsome reign of Jimmy Savile who still at times despoils the innocent memories of my childhood.
I'm sharply aware of my own near miss now, hearing of the toxic culture of cover-up from the recent Newsnight exposure of Royal Sussex County Hospital in Brighton. That management is poor with the only concern hitting targets was one whistleblower’s take. Another report stated that “police investigations involved alleged mistakes in the treatment of more than 100 patients from 2015 and 2021, including at least 40 who died”.
Why a near miss of my own? The investigations are largely focused on Brighton’s neurology department, of which, in August, I was under its remote care. Some of my loved ones urged the ward doctors to send me for treatment at Brighton but ultimately decisions were made on brain scans and I stayed in Hastings. With hindsight, I’m very thankful.
However, a mistake was made upon my discharge. The accompanying letter stated I would hear from neurology for the follow-up and, after a three-month delay, this happened by accident when my next of kin contacted a support service which wrote to neurology on a completely different matter. I have no idea of any long-term effects of this, although, as is often the case – and it’s important to say it – my personal neurologist shows compassion and genuine interest in my recovery. He noted the error and I now have that in writing.
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Yet again, authorities are scrutinising another medical scandal. I’ve seen it all my life. But it sits alongside the compassionate salve of patience and humanity of those who’ve travelled far to work for the NHS.
As a child, I met nurses from Jamaica on the tail-end of the Windrush Generation. Young Irish women are still here and remain stalwarts for our health institution. This time there were people from South Africa, Zimbabwe and the Philippines, alongside lovely Nurse P, who had worked in the NHS for 21 years.
But I saw more of the NHS struggles by the petty failures that occurred to me after my four-week stay. No more caring staff, but fractured primary care services. It was as if the Tories had set up some vicious cost-effective ‘needs-o-meter’ where there’s a level one cannot go over. The day I left, everything began to collapse within these services that were supposedly there for my rehabilitation and recovery.
I am far from alone in this struggle and, as long as I breathe, I will fight. As despicable truths emerge from the Covid Inquiry, my resolve is never stronger. Particularly as, let us not forget, that six of every 10 Covid deaths were disabled people.
I hold Nurse P deep in my memories, to remind me of the best we have within a service that, as flawed as it is, we simply cannot lose.
Penny Pepper is an award-winning author, poet and disabled activist whose work focuses on identity, difference and what makes us human