Imagine the anxiety of knowing you are at a greater risk of dying from the Coronavirus but are at the back of the queue for a life-saving vaccination and, if hospitalised, doctors might decide not to save your life.
This is what learning disabled people are facing in this pandemic. They are the hardest hit, yet the impact on their mental health is being overlooked.
Debates about Covid-19 recovery and economic renewal ignore disabled people. This is shameful given that even before the virus, the UK’s 7.7 million working-age disabled people already faced significant inequalities.
Arthur Pew was a lance corporal in World War One, serving in the 19th Kings Royal Rifles Corps. Trusted with responsibility for his fellow men, he commanded and organised other soldiers and was a skilled member of a specialist firearms regiment.
Yet, as remarkable new research published today shows, Pew also had a learning disability. And, before he signed up, he was regarded as incapable of contributing to society and was segregated from his fellow men in an institution.
The ‘Hidden History of the Labour Corps in the First World War: Contributions to the War Effort Made by People with Learning Disabilities’ shows how Pew joined the army from an asylum where – in language of the time recorded in the National Archives in Kew – he “was considered to be a mental deficient”.
You can read the full piece in the Byline Times here.
After a year in secure care 105 miles from home, Jack Cavanagh, 17, who has autism, a learning disability and epilepsy, desperately misses his family. They used to see him every weekend, but with Covid restrictions have been unable to visit. As a result, they say, Jack has become more anxious and isolated and recently begged staff to “be” his mum or dad.
I spoke to several families including Jack’s, about how the use of restraint and isolation has increased during Covid. This group of people have been overlooked during the pandemic despite the fact they are more at risk thanks to the virus.
I wrote a personal piece for the Guardian about how Covid-19 is impacting disabled people and families.
Coronavirus has thrust us all into a new normal. Life has come to feel the same yet different. However, for some communities Covid has undermined their very ethos.
My youngest sister Raana, who has a learning disability, has lived in a supported living community in Hampshire for 10 years. We chose the charity that runs her home for its values. It creates a sense of belonging and purpose, focuses on abilities and is governed by the belief that everyone has the right to be involved in society.
Covid-19 means that not only are the guiding principles of the charity are at risk, but my sister’s independence is being undermined.
You can read the piece on the Guardian website here.
“Not everyone with a learning disability wants to work in a supermarket, but jobs for learning-disabled people aren’t ever talked about in terms of professions. If they were, it could change how everyone sees us.”
Meanwhile, as a young man, Michael Edwards quit the council-run day centre he attended because he was frustrated with the menial and mind-numbingly dull “work” he was given to do. The final straw was when Edwards discovered the centre staff had been mixing up the plastic components he had spent an entire morning sorting into boxes, just so he would have a job to do in the afternoon.
I wrote for Learning Disability Today about why learning disabled people have the right to meaningful paid work as much as anyone else.
These issues are even more pressing issue now that COVID-19 has intensified the inequalities faced by learning disabled people in everything from health and wellbeing to employment. We already know that successive welfare-to-work schemes have not really helped people with learning disabilities or been specifically aimed at them.
Read the rest of the piece here and find out more about my book here.
Most of us are now emerging from lockdown and acclimatising to the “new normal” we find ourselves living in. From this week, we can go to a beauty salon or gym, and care homes visits are on the horizon.
But my learning disabled sister, Raana, is untouched by the easing of restrictions. Raana lives in supported living, in a shared house in Hampshire with help from care staff during the day. Thanks to a lack of any government guidance on coronavirus for supported living, she’s living in a parallel universe.
Without clear rules on what she should or should not be doing, her carers are – understandably – keeping tight restrictions on her movements. Raana is in lockdown limbo.
Cllr Gavin Harding is a trailblazer who has devoted his life to improving the rights of learning disabled people, and their care. He has achieved this through his work for NHS England, his contributions to Government plans and programmes, and as a local politician.
The MJ magazine just published an interview with Gavin Harding about his life, work and his words in my book Made Possible
Journalist Ann McGuaran writes of Gavin: “In 2011 he became the first person with a learning disability to be elected as a Labour councillor in his home town of Selby in Yorkshire. Four years later he became the UK’s first mayor with learning disabilities, and in that same year he was awarded an MBE for his work for services to people with learning disabilities.
“He helped the Government draw up a three-year plan on learning disability, Valuing People Now, in 2009. In 2014 he became co-chair of the Transforming Care programme to improve standards of care for people with learning disabilities.
“Cllr Harding is one of the people featured in a new book highlighting stories of success by people with learning disabilities – in their own words. In Made Possible, he is one of eight individuals who present their authentic experiences, and show how people can make invaluable contributions to society when their potential is acknowledged and supported by those around them. Made Possible is edited by social affairs journalist Saba Salman, who is a trustee of the charity Sibs, and has a younger sister with a learning disability.”
In a piece for the Byline Times, I call for a more accurate reflection the lives of those with learning disabilities in society and the media, and explains how my new book of essays, written by learning disabled people, aims to change the narrative.
Say the words “learning disability” to most people and they will probably think of headlines about care scandals or welfare cuts. That’s if they think of anything at all.
The latest figures from NHS England show that 451 people who have died from the Coronavirus since 24 March were recorded as having a learning disability or autism. According to the Care Quality Commission, there has been a 175% increase in unexpected deaths among this group of people compared to last year.
Mainstream media coverage of the Coronavirus reflects a nonchalance. Give or take the odd exception, the reporting has failed to acknowledge the impact of the pandemic on the UK’s 1.5 million learning disabled people like my youngest sister Raana.
Outside of COVID-19, if learning disability issues hit the headlines, they usually reinforce stereotypes about “vulnerable people” unable to fend for themselves. And when a story makes the media, it rarely includes direct words from someone with a learning disability.
This is the reason for the book Made Possible: Stories of Success by People with Learning Disabilities. The anthology, which I edited, challenges stereotypes through the stories of people whose achievements are awe-inspiring – regardless of their disability. They describe, in their own words, what needs to happen for learning disabled people to reach their potential. The powerful first-person experiences are from a human rights campaigner, a critically acclaimed actor, a civil rights activist, a singer-songwriter, an elite swimmer, a fine artist, an award-wining filmmaker and an elected mayor.
Read the rest of the article, first published in June, here