“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.
While imbibing a cup of coffee at the computer, my Twitter feed led me to an article in the Daily Mail with the strapline, ‘Babies with Down’s syndrome who are given green-tea supplements are less likely to develop facial disorders.’
Well, you could have knocked me over with a tea leaf. This was something. We always knew there was more that we could and should have done for our daughter 26 years ago when she was born with Down’s syndrome.
We had clearly missed a trick. The answer to stigmatisation, exclusion and discrimination lay in a tea bag. If only we had supplemented her diet with green tea, it all could have been so very different. Apparently, new research in Spain suggested: ‘Six out of seven Down’s syndrome sufferers … developed facial dimensions would have matched her healthy peers.’
Where to begin?
Sarah does not suffer from Down’s syndrome. She has the genetic condition, which affects her life in many ways, but if anyone has met Sarah and other children and adults with Down’s syndrome, ‘suffering’ would not be the word that comes to mind. Sarah’s oft repeated phrase, ‘I love my life’ would easily dispel that myth.
I’m also intrigued by the comparison with ‘healthy peers’. Does that make her unhealthy because of a genetic condition? Sarah does not have a disease. The article continued, ‘Researchers hope that normalising the facial features of Down’s syndrome may help to reduce the stigma patients experience.’
‘Patients’? ‘Stigma’? People with Down’s syndrome are not ill and the only stigma that they might experience is the publication of such articles, which perpetuates the stereotypical view of my daughter and others. Increasing the awareness and understanding of Down’s syndrome and the opportunities for people with the condition will do much more to reduce any stigma.
Sarah has facial features and physical characteristics that are more common in people with Down’s syndrome, but she looks more like us, her parents, than others with the condition. Her physiognomy remains unmistakably that of a young woman with Down’s syndrome and that’s who she is. Her Down’s syndrome is a part of her very being so we do not wish to take that away from her. We would only be changing the way she looks to make her features more acceptable to other people. In any case, her unique character is so prominent that her features become irrelevant.
Of course, supplementing diets is not a new idea; over 20 years ago parents were experimenting with TNI (Targeted Nutritional Intervention) whereby supplements of vitamins, minerals, amino acids and digestive enzymes were given to children with Down’s syndrome. The programme was supposed to help cognitive development, clarity of speech and it was even claimed that there was an improvement of facial features. Even then, the term ‘improvement’ made me me somewhat nervous, as the term can only be subjective and dictated by society’s desire to make everyone appear ‘normal’.
Are we now still are trying to eradicate the physical characteristics as a way of denying the diagnosis? Everybody has his or her own individual personality and physical make-up. People with Down’s syndrome are all unique individuals with their own personalities, family backgrounds and aspirations that make them who they are. Every individual person should be valued for who they are, not what they look like.
Anyway, I had pondered too long over this preposterous article and so by now my coffee had gone cold. Maybe for my next beverage, I should forget the caffeine and imbibe some green tea. I had, after all, always wanted to look like George Clooney. Apparently, a nightly cup of Earl Grey can create a noble look, a steaming demitasse of Darjeeling before bed might turn me into a Kit Harrington doppelgänger and who knows the effect of a pint of Lapsang Souchong a day might achieve?
No…on second thoughts I think I’ll stick to the java and remain just who I am.
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.
Being able to do her own washing and having responsibility for her personal possessions symbolised the freedom Michelle Stevens* wanted but was denied in institutional care. Stevens features in my latest Guardian article (screenshot above). Her severe mental health problems meant she was in and out of residential care and mental health wards for a decade. She recalls staff shouting at her and living circumstances that were “very closed up and not nice at all”.
Today, however, Stevens says she is “much happier and freer”. She has a bedroom in a large double-fronted Victorian house – and she loves the garden at her supported living home in West Norwood, south London, which is run by social care provider Certitude. “[It] is cleaner than other places I have been, and has nicer facilities,” says Stevens.
She enjoys socialising – with the 11 other residents and locally – and for the first time in three years, she does her own washing and is trusted with her belongings.
The women-only housing is designed for those with enduring and complex mental health issues who may be stuck in restrictive environments. Certitude provides support while First Priority, a housing association, manages the tenancy agreements. The home opened in September 2016 and residents, who are mostly in their 30s and 40s, benefit from individualised support that is rarely offered in residential or inpatient care.
I’m really grateful to all the women who shared their experiences for the story and talked about the “good road ahead”, as Michelle put it, which now seems to be ahead of them. Read the rest of the 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.
If you need social care support, why can’t services respond better to your individual aspirations – instead of fitting you into what’s already on offer?
This aim – shifting traditional social work practice to “community led” methods – is at the heart of a new programme I’ve just reported on.
Leeds is one of nine local authorities changing adult social care by developing community-led social work (in a nutshell – more local solutions). The councils are being supported in this drive by social inclusion charity National Development Team for Inclusion’s community-led support (CLS) programme. NDTi has just published an evaluation from the first year of delivery in the participating areas
Gail*, for example, has a learning difficulty, mobility problems and is prone to angry outbursts. Leeds council adult social care staff have supported her intermittently over a few years, helping with self-care and chaotic living conditions.
Recently, it considered commissioning weekly visits from a support worker to help Gail manage her home. But instead, under a new approach launched in Leeds last year, Gail met social work staff at community “talking points” – venues such as libraries and churches instead of at home or at the council. The neutral environment sparked different conversations about support. Gail said she wanted to volunteer and staff felt able to be more creative with her care.
A social worker supported Gail to explore opportunities at her community centre, where she began volunteering. Her self-esteem has grown, her personal appearance has improved and she has begun anger management classes.
Feedback from people like Gail involved in the new support method includes comments about staff such as “they listened to me” and “we did talk about the important things”.
The concept of community social work is not new, but demand for social care, pressure on staff and funding cuts mean less time and freedom to develop innovative solutions. The 2014 Care Act encourages community-focused support, but this has been hard to achieve. A difficulty in developing “strengths-based” solutions is well documented, for example, in recent guidance from Think Local Act Personal.
At Leeds, adult social services director Cath Roff says the council had two choices: “Either we go down the road of ever-tightening interpretation of eligibility criteria to manage resources, or try a new approach. Social work services are increasingly becoming the ‘border patrol’, policing in order to manage reducing budgets. None of us came into social care to do that.”
Scrounger or superhero – and little in between. This is how people like my sister, who happens to have a learning disability, are generally seen in society and the media.
The missing part of the equation is what led me to develop the book Made Possible, a crowdfunded collection of essays on success by high-achieving people with learning disabilities. I’m currently working on the anthology with the publisher Unbound and it’s available for pre-order here.
I wanted to support the event because of its aim to bring together a diverse range of people, including campaigners, families, self-advocates and professionals (check out #LeavingNoOneBehind #WHIS to get a feel for the debate).
This post is based on the discussions at the event, and on my views as the sibling of someone with a learning disability and as a social affairs journalist. I’ve focused on print and online media influences perceptions; broadcast media clearly has a major role – but it’s not where my experience over the past 20 years lies.
Firstly, here’s Raana:
Raana’s 28. She loves Chinese food. She adores listening to music (current favourite activity: exploring Queen’s back catalogue – loud). She’s a talented baker and has just started a woodwork course. She has a wicked, dry sense of humour (proof here).
She also also has the moderate learning disability fragile x syndrome. She lives in supported housing and will need lifelong care and support.
The way I describe Raana – with her character, abilities first, diagnosis, label and support needs second, is how I see her. It’s how her family, friends and support staff see her.
But it’s not how she would be portrayed in the mainstream press.
Instead, this comment from the writer and activist Paul Hunt, reflects how she and other learning disabled people are seen:
“We are tired of being statistics, cases, wonderfully courageous examples to the world, pitiable objects to stimulate funding”. Paul Hunt wrote these words in 1966 – his comment is 51 years old, but it’s still relevant (charity fundraising has changed since then, but the rest of the words are spot on – sadly).
Say the words “learning disability” to most people and they will think of headlines about care scandals or welfare cuts.
These reinforce stereotypes of learning disabled as individuals to be pitied or patronised. The middle ground is absent; the gap between Raana’s reality and how she’s represented is huge.
How often, for example, do you read an article about learning disability in the mainstream media which includes a direct quote from someone with a learning disability?
Stories are about people, not with people.
Caveat: as a former national newspaper reporter, I know only too well that the fast-pace of the newsroom and the pressure of deadlines mean it’s not always possible to get all the interviews you’d like. This is harder for general news reporters reacting to breaking stories than it is for specialists or feature writers who have just the right contacts and/or the time to reflect every angle of the story. But there’s still more than can be done – and much of it is very simple.
Take the language used in news and features.
There’s a huge amount of research shows how media influences public attitudes. One focus group project by Glasgow University a few years ago showed people thought up to 70% of disability benefit claims were fraudulent. People said they came to this conclusion based on articles about ‘scroungers’.
The real figure of fraudulent benefit claims? Just 1 per cent.
The language used in mainstream media is often problematic. I wince when I read about people “suffering from autism” – “coping with a learning disability” – or being “vulnerable”.
Images used in stories often don’t help.
As a quick – but very unscientific – litmus test – I typed the words “learning disability” into Google’s image search.
This is a flavor of what I found – the most common pictures that came up were the dreadful “headclutcher” stock image that often accompanies articles about learning disability.
These images say, defeat, frustration, confusion, negativity.
This is not how I see my sister, her friends or the learning disabled campaigners I know.
This is more how I see them:
This shot is from a story I did a few days ago about Martin, Martin’s 22 and works part-time as a DJ at a local radio station (you can read about him here). Martin also happens to have a moderate learning disability and cerebral palsy.
We need more of this.
An obvious – but nonetheless important – point to make here is about the disability and employment gap. A more diverse workforce in the creative sector will impact on representation. Only 6% of people with learning disabilities work, for example, but around 65% want to (I wrote about this issue in the Guardian recently)
But there is cause for optimism. There is a slow but significant shift in the representation of learning disabled people thanks to the rise in grassroots activism, family campaigning, self-advocacy and the growing empowerment agenda.
Social media is helping spread awareness and spread a different narrative.
This rise in self-advocacy is what led me to develop Made Possible. The book’s aim is to challenge stereotypes; it targets a mainstream readership and introduces readers to learning disabled people in areas like arts, politics and campaigning. Their achievements are impressive regardless of their disability.
While I’m researching the book, I’m trying to keep three words in mind – attitude, ability, aspiration:
Am I sharing experiences that help shift public attitudes?
Am I reporting people’s abilities, not just their disabilities?
Am I reflecting people’s potential – what do they aspire to achieve, and how can this happen?
And although I’m focusing on positive representation of learning disability, it’s worth stressing that there’s an equally vital need to highlight the challenges.
The two go hand – a more authentic portrayal of people’s lives (their qualities, hopes and aspirations) and reporting the inequalities they face.
Because readers are more likely to care about the inequality and support the need to solve it if they feel closer to the real people experiencing that inequality – if they stop seeing learning disabled people as “the other”, or as statistics (as Paul Hunt wrote over 50 years ago..) and as people first.
It’s often said that media should reflect, serve and strengthen society. Which means we have to be more accurate and authentic about how we include and portray a huge section of that society – including my sister – which happens to have a disability.
Martin, who has a mild learning disability and cerebral palsy, recently interviewed two engineers from the PWL production company and the experience boosted his confidence. “That was my first interview. I was nervous but I nailed it,” he says. “We recorded it first and then we edited it. I enjoyed coming up with questions.”
He also won the station’s producer of the year award for 2016-17. What would he do if was not at the station? “I wouldn’t know everyone here – they are like my family. I would be at home doing nothing or going out and spending money, but I want to save and become more independent.”
Online station Direction Radio is part of social care provider Surrey Choices’ day service programme. It helps people with physical or learning disabilities to develop skills in broadcast and production.
Some 19 DJs produce and present the shows reflecting all musical genres – from rock to pop, R&B and classical. Station manager Chris Fenn (who does not have a disability) explains that DJs have “a blank canvas” to create their slots, which last between one and three hours, and decide on everything from the jingle to the playlist. “I say to all the guys, ‘You do what you want to do with it’,” says Fenn. “It’s all their choice and that’s why it’s so diverse.”
You can read my report on Martin and his fellow DJs on the Guardian website (all photos from Surrey Choices).
A play that celebrates people with learning disabilities and that was written for an actor with Down’s syndrome is being revived this week at Bristol’s Tobacco Factory Theatres.
Myrtle Theatre Company’s show is a sequel to the company’s Up Down Boy, which was first performed in 2013 at the National Theatre and then toured the country. Nathan Bessell, an actor with Down’s syndrome, plays Matty Butler in the play inspired by real stories from families of young people with Down’s syndrome.
As part of the run from this Wednesday (Nov 8) to November 18th, Tobacco Factory Theatres will host an evening of free events for young adults, led by REACT, the theatre’s team of young producers aged 14-25. There will be a series of free pre-show events and a post-show debate on the play’s themes. There will also be a series of relaxed performances which offer a welcoming environment for theatre-goers with additional needs.
Last year, when I interviewed the theatre company’s director, Heather Williams, she described the necessary adjustments to the production process when working with a learning disabled actor. This includes going at a slightly slower place, trying to follow “rather than lead”, being flexible and – above all – listening.
All of this, she told me, allows Nathan to grow as a performer: “You just need the right conditions to flourish.” This approach – creating an environment where people can more easily meet their potential – is one I wholeheartedly support (and a belief that drives my latest project, the book Made Possible). Find out more about the play here.
Photos of the 2016 run of Up Down Man, shot by Richard Davenport