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.
Nice way to start off the first full week of the new year – the NHS published its long term plan today.
Depending on what you read or watch, it’s either unworkable or it could save half a million lives.
As for what it offers people with learning disabilities and/or autism – areas which the NHS proudly announced a while ago would be clinical priorities – it’s all a bit meh.
Today’s big reveal puts the long into long term.
The plan repeats longstanding aims to get autistic and learning disabled people out of long term hospital care and into proper communities – it promises a new target of 50% reduction in inpatient care by 2023/24. That’ll be 13 years since the Winterbourne View scandal where inpatients with learning disabilities were abused by care staff.
In the meantime, 2,350 people are currently languishing in hospital-style assessment and treatment units like Winterbourne View. This is just another long-term target to add to those that have already been and gone..
There’s another long term target too – for every million adults, only up to 30 people with a learning disability or autism will be in inpatient units (the equivalent number for children and young people is 12-15).
But why these numbers? Is 30 per million what equality looks like?
Then there’s a very clunky bit that’s made my head hurt:
“Since 2015, the number of people in inpatient care has reduced by almost a fifth and around 635 people who had been in hospital for over five years were supported to move to the community. However the welcome focus on doing so has also led to greater identification of individuals receiving inpatient care with a learning disability and/or autism diagnosis, so increasing the baseline against which reductions are tracked.”
This seems to be blaming the slow progress on moving people out of hospitals on the fact the NHS has realised that there are more people living in these places in the first place.
Just over a year ago I launched the crowdfunding campaign for Made Possible – and now I’m delighted to say that I’ve just delivered the manuscript to the publisher, Unbound.
And I know I’ve mentioned this before, but I can’t stress it enough – I’m hugely grateful to everyone who has backed Made Possible, or who has shared news about its progress to ensure it gets made.
It still amazes me to think that this project – a collection of essays on success by people with learning disabilities – was fully funded within just six weeks. The speed with which the book hit its funding target proves how much this stereotype-shattering title is needed.
There are 1.5m people with learning disabilities in the UK today but people with learning disabilities aren’t asked to talk about their talent, or share the secret of their success – that’s why I wanted to create this book.
Society barely gives them lip service; they are pitied or patronsised, and rarely heard from in their own words.
Now that the manuscript’s done, I’ll be working with Unbound’s editorial team over the coming months and I’m looking forward to seeing the title take shape. People with learning disabilities face huge inequalities in everything from healthcare to education and employment (not to mention barbaric treatment, locked away in ‘care’ institutions, as reflected in recent media coverage). This book of powerful and entertaining essays by learning disabled high achievers will show an alternative approach to treating and supporting people, and the benefits of that approach.
You can find out more about the book in this Guardian piece.
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
Isn’t it about time that learning disabled people enjoyed the same access to cultural lives and work as everyone else?
This is one question that Venture Arts (VA) and our speakers will be asking the heritage and cultural sectors at our symposium, Making the Case, at the Grand Hall, Whitworth Art gallery on the 25th May. VA is an organisation that specialises in visual arts in the North West.
“People with autism can do things like other people that don’t have autism in society. Society should be more accepting of people and not assume people can’t do things.” This is what Amber Opka Stother says – Amber (pictured above) chairs the VA steering group, has worked at Manchester Museum and arts centre HOME Manchester and is an ambassador for learning disabled people in the heritage and culture sector.
Our symposium will showcase the experiences of learning disabled people who have formed VA’s Cultural Enrichment Programme, funded through the Heritage Lottery Fund. The programme has seen over 20 people undertake 16 week work placements in some of Manchester’s best known cultural and heritage venues.
On the day we will also be seeing and hearing about other projects from across the country and highlighting areas of best practice.
“Unfortunately, our experience shows that people often don’t feel that big cultural institutions are for them or know how best to welcome people into their buildings. In my view we need to see more learning disabled people working within culture to be able to start to overcome this and make real change happen”, says Amanda Sutton, VA director.
This kind of inclusion makes sense, adds Amanda: “You are going to feel much more comfortable about going into a building, that can otherwise feel quite austere and foreboding, if you can relate to and identify with the people welcoming you and working within the venue.”
In 2015, researchers Lemos and Crane looked at learning disabled people’s access to museums and galleries (pdf). It stated: “Despite longstanding commitments to access, participation, learning, equality and diversity, museums, galleries and arts venues are not currently required by funders or policy makers specifically to promote access for people with intellectual disabilities as they are in relation to other groups…Mainstream arts organisations did not seem always to have a clear framework of good practice for improving access for people with a learning disability. This was perhaps the consequence of widespread uncertainty and anxiety among those with little personal or professional experience of people with learning disabilities.”
So Venture Arts aims to rectify this through working with cultural institutions to introduce learning disabled people to every aspect of their working operations. We reckon that if we can get people in “through the back door”, they will gradually change attitudes and integrate into institutions. Through our work so far, this has indeed happened. People have been back stage, in the conservation rooms, behind the scenes, delivering tours, in museum shops, in the staff room and are now well known by all the staff and visitors alike.
Here’s what Amber thinks about her experiences with VA so far:
At Manchester Museum, I volunteered and worked in the shop and in the postroom and in the vivarium as well. I ended up doing a tour for my friends and family which they really, really enjoyed, it boosted my confidence about speaking to people. It was really nice meeting lots of new people I did things that most people don’t . It’s nice to see the different parts of the museum.
People were, very welcoming and I think I am helping them to learn more about working with people with autism too, maybe like how people communicate or something.
Now I’ve started a new placement at HOME, an arts centre, which I’m really enjoying. We get to go behind the scenes and see how the cinema works which is really interesting and we have worked at the front of house and we get to see some free shows as well and that’s really, really good.
I think it’s important to have people with autism working in these places to see what great skills people have and how it makes a difference to volunteering. They will be more interested in employing people with autism, it will make a big difference.
On a personal level, it has helped me to be more confident and it’s helped me to become more confident in doing other jobs and things. I also work in a school and this experience has influenced how I am with the children, I feel more confident because I had to speak to people and that has lifted my confidence.
Last year I also delivered a workshop about making galleries accessible at a conference called Creative Minds and I loved every minute of it. I probably wouldn’t have been able to do this if I hadn’t worked at the Manchester Museum beforehand. There were a lot of people there too so I was really happy with myself.
I’m really looking forward to the symposium at the Whitworth as well and to interviewing people from museums and galleries. I’m going to interview them about the job and what we do. It will be really important to come to the symposium because you will get to hear about the great work that museums do with people with disabilities.
Even though I’ve got autism I try and do things that people without autism think that people can’t do like drive, I’ve passed my driving test that was a big achievement for me because I’ve always loved cars. People with autism can do things like other people that don’t have autism in society. We need to celebrate difference and make sure that people recognise what great things people with disabilities can do. I get upset sometimes if people don’t understand me, like my driving instructor who didn’t think I could pass my test. It’s important to listen so people can know what message people are trying to get across.
My advice for other museums? People have really great skills and they should give people the chance. People with disabilities can be really good at doing lots of great things and have skills that other people without a disability might not have, which can be valuable in a workplace. For example, people can be more understanding of other people.
It would make me happy to see people with disabilities working in museums because it’s good to see people with great skills doing a good job. If people give them a chance it would be a great place to start when people don’t feel comfortable about going into a museum.
Barriers for learning disabled people in going into a museum can be the staff of a museum because they might be a bit rude towards them or can’t understand if someone has no speech or something. It might not have a ramp or the lift might not be working or someone might be deaf as well so that could be a barrier. Museums should be more accessible to people with disabilities and people should make sure they don’t put jargon and put language that people understand on their walls.
I’m looking forward to the 25th to hear about what people are going to say. I’m looking forward to meeting everyone and to what people have to say about their experiences at the museums and it should be a great day.
“I hope I can get them to think a bit differently, and then to help make things happen a bit differently.”
These are the words of Dayo Koleosho, an actor with the groundbreaking theatre company Access All Areas, describing what he hopes the public will gain from his new show, Madhouse re:exit.
I’ve just written about the project for the Guardian. It’s a show that has been developed and performed by autistic and learning disabled artists and it highlights themes of institutionalisation and isolation, and explores the past, present and future of social care.
The show, which I caught during its London run, opens at the Lowry in Salford on 17 May as part of the Week 53 festival and follows more than two years of research and development.
“As services are cut, people are becoming stuck at home and the isolating walls of institutions are being replaced by people’s bedroom walls,” says Nick Llewellyn, artistic director of Access All Areas. “The walls are still there but [they are] more hidden or societal rather than physical.”
All the images here are shot by photographer Helen Murray, and you can read the entire piece about this superb show over on the Guardian website.
For Mario Christodoulou, buses are essential. “I use buses every day to get to work and to the shops – it is my only way of travelling,” he says.
Christodoulou, from south-west London, is a peer advocate at learning disability charity Kingston Involve. As part of his work championing the rights of learning disabled people, he is involved in the Transport for London (TfL) Big Day Network, which holds learning disability awareness days in bus garages, bringing together learning disabled Londoners, their support staff, bus drivers and managers.
The network has 50 members from self-advocacy groups in London – 37 people with learning disabilities and 13 supporters – and has run events at 15 of the city’s 80 garages over the last three years in partnership with George Marcar, a TfL driver communications manager, surface transport. Discussions are held in a stationary bus, which helps people to visualise the issues raised.
Areas of debate include confusing signage or drivers being unaware of so-called “invisible disabilities” – to find out more, read the rest of my article in the Guardian.
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.