What makes an “ordinary life” for the UK’s 1.5 million learning disabled people? Having relationships, choosing where to live or when to go out? Things that most of us take for granted are often denied to people like my sister Raana, who has Fragile X syndrome, the most common inherited cause of learning disability.
With the right support and an enlightened attitude that’s mindful of people’s human rights, people with learning disabilities and autism can enjoy the things most of us take for granted. I wrote an opinion piece about this for the Guardian.
My sister Raana made this film on the theme of community – helped by her brilliant support worker Indra – for sharing at this week’s (Un)Ordinary Conference in London.
The event, held by the campaigning learning disability charity Stay Up Late, was billed as “a learning disabilities conference with a difference” because professionals from the social care sector made up much of the audience and those on the platform had a learning disability and/or autism.
The event explored learning disabled people’s views on community, relationships and employment.
I’ll write about my own thoughts later, but right now I don’t want to put my own filter on what Raana wanted to share – not least because if I did, that filter would spontaneously combust into a zillion radiant pieces of joy.
I am so incredibly proud of my creative, determined sister, a fact that will be obvious to those who’ve supported and been following the progress of the book Raana’s inspired, Made Possible.
What I will add though, for context, is that Raana has fragile x syndrome and in the past she’s found it tricky to do some of the things she does now. And while she’s done public speaking in familiar places with friends and her trusted support staff, it was a huge deal for her to travel up to London for the day and be in a place she’d never been to before with a whole new bunch of people she’d never met.
Raana didn’t fancy making a speech or taking questions, hence the film with captions.
Paul Williams has a learning disability and was once an athlete. Years in institutional care meant he didn’t mention his talent. With the Time to Connect project, which I wrote about in the Guardian today, he dug out his medals, has done a local talk and is now writing his life story.
Williams, his care organisation and volunteer are part of the Time to Connect community inclusion project. This encourages stronger links between people using care services and their neighbourhoods, and ensures they become more active citizens. Time To Connect is a partnership between social inclusion charity NDTi(National Development Team for Inclusion) and Timebanking UK, the national charity that helps people to share time and skills.
So far, Time to Connect has involved 265 people: 92 care staff, 102 older people, 39 learning disabled people, 10 people with mental health support needs and 22 time bank members. An interim reportdescribes positive outcomes for all participants: “The evaluation found numerous examples of increased confidence and motivation among care staff as well as changes to attitudes and behaviour. This is in turn leading to increased opportunities for people to connect with their communities.”
Time to Connect adds value to care work because support staff get a greater glimpse into people’s lives and characters, rather than focusing simply on their physical needs. Clive Brown, Paul’s support worker, says: “It makes the job more rewarding and it improves my relationship with the people I’m working with. It just makes me smile a little more.”
Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.
Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.
Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.
My friend Jude Bissett can tell you – she first got the news in 2003 and has just launched a new blog about life with a brain tumour, Bomb in my brain. The site is pretty new, but it’s easy to see how Jude’s powerful and honest testimony of a life changing experience will be an important resource for others undergoing the same thing. And even if the issue isn’t something you’ve experience of, it’s an engaging and insightful read.
Jude explains: “I evaded writing about what happened for 15 years. Why? I don’t really know. It was in my head for all that time, usually safely in the background, largely ignored but with occasional flashbacks and incidents that forced it forward. And this time it’s back in a way I can’t ignore and the time feels right to document it, in part therapy, in part to have an accurate record and in part to help anyone else who may face a similar situation and be seeking clues as to what they might expect. Though it will only be clues, we are all different, we all experience life differently.”
Here’s a recent extract from September:
By the end of my “break” I am feeling basically back to normal. The summer holidays have been particularly long with glorious weather, it felt like they would go on for ever. Then before I know it, Posy has her birthday and I am due back at hospital for round two. No tears for me this time, not now I know the drill. I fair skip into the Colney Centre, ready for my spot in a comfy chair and a nice cup of tea from a McMillan volunteer. During the week I had a blood test done at my local surgery. As ever they found it difficult to squeeze much out of me but there was enough apparently for them to check my platelets which were excellent, thank you smoothies! They need to check the white count but they have a machine on site to do this.
My Portacath is used to get the blood and I am delighted it can be used both to get blood out as well as do the infusion, what a clever device, how smug I feel for getting it put in!After a few minutes the nurse returns. She is very sorry but they can’t proceed with my treatment. This news comes as an absolute shock to me, this is not something I thought would happen. It seems my white count is too low. It has to be over 1 and mine is languishing at 0.24. But I feel fine! What has gone wrong? What have I been doing wrong? I’ve had all the smoothies with spinach and seeds and other shite, why hasn’t that been good enough? “it’s just the treatment” the nurse keeps repeating. I don’t understand and I feel unaccountably upset. The nurse tells me they’ll defer me a week and my count will come back up. I should be pleased at the reprieve but I am fretful as I’ve plans to attend a good friend’s 50th at the end of the summer and I’m worried this will throw out my timing. But I calculate the next week will still be ok and I defer for the week and return home.
You can read more of this extract at Bomb in my brain by Jude Bissett and please share widely.
A new heritage project aims to dispel misconceptions about learning disability and the lives of people who lived in long-stay institutions. The charity CASBA (Citizen Advocacy South Birmingham Area) spent a year collating stories and archive material relating to Birmingham’s Monyhull Hospital. Myth and rumour about the hospital was rife; it was referred to as the local madhouse and the term ‘Mony’ was used as a playground insult at local schools. In what is Birmingham’s first learning disability heritage project, the free event From Institution to Community, runs on Saturday October 6th.
Guest post by Joe Peacock, heritage project coordinator, CASBA
Roland Clewley was 16 when he was first admitted to Monyhull Hospital, a long-stay institution for people with learning disabilities. It was 1966 and before Monyhull, Roland been in a pupil referral unit in North Wales for 18 months and had grown up in a care home in South Birmingham. He quickly grew to hate being locked up.
Roland spent almost 15 years in institutional care.
Roland says: “It was okay at first, but I wanted to get out, you see. I wanted my own place – a flat or something. I said that to them, but they said; ‘They’re all the same, just like you’ so I started running away.”
This was not the easiest thing to do, but he remembers: “I got through the window and then went down the pipes and ran off along the canal. It was dark down there and you couldn’t see what you were doing. We didn’t get very far, then we got picked up by the police. They put us in a van and put us in a cell for a few hours until Monyhull picked us up.”
Such attempts weren’t looked upon kindly by the hospital. Contrary to local myths, there was no alarm that went off when someone ran away, but they were punished on their return. “They put me in a side room. It was like a cell. It was a bare room with just sheets and blankets on the floor to sleep on. The first time, I did a week in there, then the next time two and then three weeks at a time.” He was let out to go to the toilet and to eat, but it was a severe punishment for someone who just wanted his freedom.
He was then sent to a stricter institution called Moss Side: “Terrible, that place was” he recalls; “You were locked in all the time. You could go out in the grounds, but there were walls all the way around – it was like a prison. I was there for nearly eleven years.” In fact, Moss Side was a high security psychiatric hospital and later merged with another similar institution to form Ashworth Hospital. Roland is reluctant to disclose much of his experiences there and it is hard to imagine how tough it would have been for him. Roland was then sent back Monyhull, and it must have been quite a relief in comparison.
“It was a bit better second time – it changed a lot. When we used to be on the ward it was a male ward and you’d have male staff, but the next time I was there it was all mixed – you’d got male and female staff working there.”
He also felt more optimistic that he would be allowed out with the increased emphasis on care in the community and deinstitutionalisation in the 1980s: “What else changed is that they were taking the patients out of there. Before, you don’t know how long you’re there for, or anything like that. I thought I was going to be there until I was about 80.”
He began to be given more responsibilities, helping the physiotherapist to get patients to appointments and was even paid for working with the porters; collecting laundry from the wards. Some of the porters befriended him and they would socialise as well as work together.
He was quite a decent sportsman, too, who won a snooker tournament and has a photograph on his wall of him being presented with the trophy to remember it by. There was a table in his ward and he’d play with anyone who was up for it or just practice on his own. He also played table tennis, football and was keen to try any other activities on offer.
Perhaps, one of the most surprising things he did, due to his close work with the physiotherapist was to go skiing in Italy. “Went for a week. I kept on standing up when I fell over all the time. You want to do it – it’s a laugh.”
Another way in which he’d try to beat the boredom of institutional life was to sneak off to the local pub, the Cartland Arms. More often, though, he remembers that they would smuggle cans of cider in from a nearby shop and sit in bed drinking those after lights out.
In 1980, he was moved out of the hospital into a hostel and then into a flat where he still lives. Ironically, for a man desperate to escape the hospital, his flat overlooks the site of the former institution he was in. Surprisingly, he continued going back to Monyhull to work with the porters them even after he’d moved out and right up until the time it was closed down and demolished. He retained his income, was fed and had a social life.
Now, in his late 60s, Roland seems happy enough with his life, although when I asked when he’d last been on holiday, he replied that it was 25 years ago. With limited mobility, he must be in danger of becoming more and more isolated.
The biggest shame of his life for me, though, is all those wasted years when he was locked away. With the right support and encouragement, he was capable of doing so much more.
• Joe Peacock is heritage project coordinator at learning disability advocacy charity CASBA
• CASBA’s From Institution to Commununity is at Monyhull Church from 1.30pm on Saturday October 6th and you can watch a trailer about the project here
So I’ve spent the last few months working with some incredible essayists for my crowdfunded book Made Possible. The book is a collection of essays on success by (note: ‘by” and not “about”) high achieving people with learning disabilities. Some pieces are still being written while others are almost complete. I’m delighted – but not surprised – to say that the ideas and stories across the essay collection are quite astounding.
The pieces of writing cover very different successes in a range of contrasting areas like the arts, campaigning and sports. But what unites these varied essays is the fact that the writers’ voices are so honest, powerful and at times just plain funny (intentionally so). This is how Made Possible will give a two-fingered salute to the outdated perceptions that exist about learning disability. The book will not only document the hugely impressive achievements of talented people with learning disabilities, but will do so in an engaging, authentic way.
On the issue of talent, my sister Raana’s always been a creative type, from her childhood fancy dress days to her current love for woodwork and baking. When she was younger though, art was her thing, and I’m delighted that a creation she made a few years ago featured in the recent national disability conference at Lancaster University.
The ninth biennial Lancaster Disability Conference run by the Centre for Disability Research (CeDR) incorporates Raana’s intricate Mosaic in its event information and publicity. If you follow #cedr18 and @CeDRLancs on Twitter you might get a glimpse of my sister’s handiwork which usually hangs in my hallway (so as many people as possible get to see it). Raana’s family and friends are so proud to see Mosaic shared more widely – a big thank you to Lancaster University and its Made Possible supporters for the opportunity to show more people what our sister – daughter – aunt – cousin – niece – friend – housemate – colleague- neighbour (because Raana is many things) can do.
The fact that learning disabled people’s talents are overlooked is an issue that cropped up in a recent interview I did for the Guardian. In conversation with Sam Clark, the new chief executive of campaigning organisation Learning Disability England, Sam’s words reflect what lies at the heart of my book: “We all bring gifts and talents, and I think it would be brilliant if we could understand that’s the case for everyone.”
I think it would be brilliant too. When I launched the crowdfunding campaign for Made Possible, I explained that shattering the tired stereotypes of “superhero” and “scrounger” is what drives this book. It also influences my articles on disability issues, some of which were recently shortlisted for a British Journalism Award for Specialist Media. Specialist writers cover issues that can be otherwise overlooked in mainstream media – my focus is the 1.5m people in the UK with a learning disability, the inequality they face and their untapped potential.
Thanks, as ever, to everyone who’s helping to get Made Possible published; by backing this book you’re helping create something that challenges the current narratives.
If you’ve not done so already, do link up with me on Twitter, LinkedIn, Facebook or Instagram or using the hashtag #MadePossible
Rewind to 2011, and Winterbourne View seemed like a watershed moment. The promise that lessons would be learned was reflected in the government’s official report [pdf], and in its commitment to transfer the 3,500 people in similar institutions across England to community-based care by June 2014. Yet the deadline was missed, and the programme described by the then care minister Norman Lamb, as an “abject failure”.
Yet despite welcome intentions, government figures [pdf] for the end of April 2018 reveal that 2,370 learning disabled or autistic people are still in such hospitals. While 130 people were discharged in April, 105 people were admitted.
This month, an NHS investigation reflected how poor care contributes to the deaths of learning disabled people. It found that 28% die before they reach 50, compared to 5% of the general population.
Unusually, this “world first” report commissioned by NHS England and carried out by Bristol University came without a launch, advance briefing or official comment. It was released on local election results day ahead of a bank holiday. Just before shadow social care minister Barbara Keeley asked in the Commons for a government statement about the report, health secretary Jeremy Hunt left the chamber.
The most recent report was partly a response to the preventable death of 18-year-old Connor Sparrowhawk at a Southern Health NHS Foundation Trust ATU. The Justice for LB (“Laughing Boy” was a nickname) campaign fought relentlessly for accountability, sparking an inquiry into how Southern Health failed to properly investigate the deaths of more than 1,000 patients with learning disabilities or mental health problems. The trust was eventually fined a record £2m following the deaths of Sparrowhawk and another patient, Teresa Colvin.
Recently, other families whose learning disabled relatives have died in state-funded care have launched campaigns, the families of Richard Handley, Danny Tozer and Oliver McGowan to name just three. Andy McCulloch, whose autistic daughter Colette McCulloch died in an NHS-funded private care home in 2016, has said of the Justice for Col campaign: “This is not just for Colette… we’ve come across so many other cases, so many people who’ve lost children, lost relatives”. Typically, the McCullochs are simultaneously fighting and grieving, and forced to crowdfund for legal representation (families do not get legal aid for inquests).
To understand the rinse and repeat cycle means looking further back than 2011’s Winterbourne View. Next year will be 50 years since the 1969 Ely Hospital scandal. In 1981, the documentary Silent Minority exposed the inhumane treatment of people at long-stay hospitals, prompting the then government to, “move many of the residents into group homes”. Sound familiar? These are just two historic examples.
If there is a tipping point, it is thanks to learning disabled campaigners, families, and a handful of supportive human rights lawyers, MPs and social care providers. Grassroots campaigns such as I Am Challenging Behaviour and Rightful Lives are among those shining a light on injustice. Care provider-led campaigns include Certitude’s Treat Me Right, Dimensions’ My GP and Me, Mencap’s Treat Me Well.
Pause for a moment to acknowledge our modern world’s ageing population and rising life expectancy. Now consider the parallel universe of learning disabled people. Here, people get poorer care. Consequently, some die earlier than they should. And their preventable deaths aren’t properly investigated.
You can read the full article here.
Barriers for physically disabled people range from blocked wheelchair ramps to buildings without lifts. The cluttered metropolitan environment, meanwhile, can be a sensory minefield for learning disabled or autistic people.
My Guardian report today looks at some of the most innovative city-based developments in the UK, Europe, Asia, America and Australia. These include skyscrapers built using universal design principles to the retrofitting of rails, ramps and lifts in transport services or digital trailblazers that help disabled people navigate their city.
For example, mapping apps make navigating cities a doddle for most people – but their lack of detail on ramps and dropped kerbs mean they don’t always work well for people with a physical disability. The University of Washington’s Taskar Center for Accessible Technology has a solution: map-based app AccessMap, allowing pedestrians with limited mobility to plan accessible routes.
Wheelchair user John Morris, who runs advice site Wheelchair Travel, says: “Seattle’s geography, with changes in elevation, sidewalk and street grade on a block-by-block basis, often make it difficult to navigate in a wheelchair. AccessMap combines grade measurements with information on construction-related street closures and the condition of sidewalks to plot the most accessible course, pursuant to the user’s needs. I would like to see AccessMap included as part of a holistic accessible route planner that includes the city’s public transportation services in building the most effective journey. Pairing AccessMap with the city’s route planner tool or with transit directions from Google Maps would make getting around Seattle easier for people with disabilities.”
Steve Lewis, a 69-year-old manual wheelchair-user who has helped co-design the Seattle technology, adds: “I spend a lot of time in downtown Seattle and am well aware of what a barrier the hills are to wheelchair travel. I have learned from experience how to navigate the downtown corridor. The best routes for someone in a wheelchair will take advantage of elevators in buildings entering on one street and exiting several stories higher on the adjacent street. AccessMap is an effort to automate and make accessible the knowledge I have acquired through experience. It currently shows graphically the steepness of the terrain. The Taskar Centre is involved in a major effort to automatically display the best routes for wheelchair users with knowledge of elevators and mass transit including the hours they are available.”
Through its related OpenSidewalks project, the Taskar Centre is developing a system to crowdsource extra information like pavement width, or the location of handrails. Nick Bolten, AccessMap and OpenSidewalks project technical lead, says: “AccessMap tackles a neglected problem: how can you get around our pedestrian spaces, especially if you’re in a wheelchair? AccessMap lets users answer this question for themselves, and OpenSidewalks will help add the information they need.”
In another US-based project, this time in Sonoma, California, a $6.8m supported-housing project, Sweetwater Spectrum, is a pioneering example of autism-friendly design. Autistic people can be hypersensitive to sound, light and movement, and become overwhelmed by noisy, cluttered or crowded spaces. However, the scheme is designed according to autism-specific principles recommended by Arizona State University. The complex, which opened in 2013, includes four 4-bed homes for 16 young adults, a community centre, therapy pools and an urban farm – all designed by Leddy Maytum Stacy Architects.
Noise is minimum thanks to quiet heating and ventilation systems and thoughtful design – like locating the laundry room away from the bedrooms. Fittings and décor reduce sensory stimulation and clutter, with muted colours, neutral tones and recessed or natural light used rather than bright lighting. Marsha Maytum, a founding principal at Leddy Maytum Stacy, says the design “integrates autism-specific design, universal design and sustainable design strategies to create an environment of calm and clarity that connects to nature and welcomes people of all abilities”.
And there’s another great project from Leddy Maytum Stacy in nearby Berkeley, the Ed Roberts Campus, “a national and international model dedicated to disability rights and universal access”. The fully accessible building, named after the pioneering disability rights activist Ed Roberts, is home to seven disability charities, a conference, exhibition and fitness spaces, plus a creche and cafe. Features include a central ramp winding up to the second floor, wide corridors and hands–free sensors and timers to control lighting.
No city is wholly accessible and inclusive, but there are groundbreaking examples leading the way – and we just need more of them.
People with learning disabilities are pitied or patronised, but rarely heard from in their own words.
Made Possible is an attempt to challenge this and change attitudes – it’s the crowdfunded book I’m editing, featuring essays on success by high achieving people with learning disabilities.
It was very cool to see Made Possible sweep into 2018 with a feature in the January issue of disability lifestyle magazine Enable. In the print edition, Enable used this shot of my baseball-cap loving sister (who has partly inspired the book) looking thoughtful and determined:
The article describes the book’s aim of putting learning disabled people’s personalities and potential before their disability. The editorial also reflects Made Possible’s diverse range of essay contributors, and explains its goal of challenging stereotypes: “Many traditional texts focusing on disability, be it physical, sensory or learning, are factual in a medical or academic context. Made Possible is set to change this narrative by appealing to a wider audience in a bid to open the world of creativity, talent, varied skills and experiences to the general public.”
The book’s contributors have also been busy developing and working on the essays, and we’ve been unpicking the concept of success in the process. As the Enable article says of Made Possible’s theme, “success is different for everyone”, and although we’re at the inital stages, it’s already fascinating (and often surprising) to discover the essayists’ views on achievement – and who defines this.
At a time when disabled people bear the brunt of society’s inequalities, from healthcare to housing and employment, redressing the imbalance and describing how people can fulfil their ambitions is more vital than ever (you can read more about the timely aspects of this book in this recent Guardian piece by scrolling down to “Why do we need this book?”).
It’s also been superb to see new supporters pre-ordering copies of the book – thank you! If you’ve recently joined us, do connect if you’d like to on Twitter, LinkedIn, Facebook or Instagram using the hashtag #MadePossible.
Also much gratitude to those of you already in touch and mentioning the book on social media, it’s a tip top way to keep #MadePossible on the radar. Do continue to share the Made Possible page with others you think might be interested in what we’re trying to do.