“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.
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.
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.
I’ve written a piece for the Guardian on what people who have experienced mental health issues, campaigners and mental health sector professionals want from new legislation.
The promise to overhaul the Mental Health Act 1983 is one of the few Conservative party manifesto pledges to survive the election. The decision to reform the act, which appeared in the Queen’s speech in June, means the government is committed to taking steps to overhaul the legislation in the next 12 months.
The 1983 act, which outlines how people can be involuntarily detained and treated in hospital for mental health issues, was amended in 2007. This included introducing the right to an independent advocate while in hospital; and the controversial community treatment orders that were criticised for failing to safeguard patients’ rights.
However, 30 years on, the legislation is regarded as outdated and in need of reform, and as one commentator says in today’s article: “The best way to prevent someone being detained is to prevent them from falling into a crisis in the first place.”
Anxiety and mobility issues mean that 76-year-old Anna Bolton* is usually housebound. But regular calls to a free, confidential helpline for older people have helped her “feel normal”.
Bolton’s mental health deteriorated after she was widowed two years ago. Although she has had some support from local mental health counsellors in her native north-east England, help from Blackpool-based The Silver Line was “invaluable” and more immediate than waiting months for a counselling referral.
The Silver Line, created in 2013 by Esther Rantzen (who also created Childline), is a free, 24-hour, 365-day-a-year helpline offering information and friendship, and signposts people to local organisations for support or social activities.
“There’s still stigma about mental health,” says Bolton. “It’s often easier to speak to a stranger, and nice to know you can call day or night.”
Bolton, who has no family nearby, contacted the helpline after it was mentioned by a receptionist at her GP surgery. She is among the 10,000 people who call the helpline – often referred to as the Childline for older people – every week.
What does someone who is supported by social care look like?
Transforming stereotypical perceptions of social care is the aim of a new photography exhibition showing in London this month – some of the featured images are shown below.
SELF Season 2 is a collaboration between photographer Dean Belcher and social care provider Certitude.
Everyone featured in the exhibition is either connected with Certitude or with activities offered by Age UK Hounslow, west London. The project’s ambition is to use imagery “to depict the commonalities between people within social care rather than reinforcing the often-imposed barriers and roles that people are given”.
The new show follows the success of an exhibition (SELF: Portraits in Social Care) held in Brixton earlier this year.
* SELF: Portraits in Social Care is running until Thursday 28th September at Montague Hall, 30 Montague Rd, Hounslow TW3 1LD, Monday to Friday 3pm – 5pm. For further details, contact email@example.com
My write up in the Guardian today looks at the condition, which is regarded as relatively rare. Public awareness of MS is low, but recent innovations in treating and assessing MS are creating a fresh focus on the disease.
Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?
This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients?
You can read the views of MS specialists, health experts, campaigners and people with MS on these issues in the full piece here.
The pioneering project’s last class before the summer break is on Saturday, and founder Rashmi Becker stresses there are no restrictions on ability, in terms of who can join in.
Step Change, which is based at the Abbey Centre and launched earlier this, is open to all. As Rashmi, a disability advocate as well as a dance specialist, explains: “We have people with learning disabilities, autism, wheelchair users with different physical and neurological conditions such as MS and cerebral palsy, people with visual impairments, young and older people…There are simple things I do to enable people to join in – for example I meet people with visual impairments at the station and support them to the dance space”.
Adrienne Armorer, for example, gave up her beloved salsa 10 years ago after developing the physically debilitating condition multiple sclerosis (MS). But she has taken up dancing again through Step Change, after hearing about the project through her local MS society.
Here’s how Adrienne, who details her experience in full on this blog, described her first Step Change class: “Wow – a 50:50 mix of wheelchair dancers and those without. Cool! A little warm-up and then we were off. I’m not a regular wheelchair user and get fatigued quite easily, so I was worried I wouldn’t be able to keep up. It was fine. Nuno and Rashmi [the instructors] are on hand to help and answer any questions. I also needed to ask one of the other wheelchair dancers how he was managing to turn his chair using just one hand. The hour flew by. What a great afternoon. We left on a high.”