Category Archives: Autism

Scrounger or superhero, and little in between: learning disability in the media

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’ve just spoken about the role of media in shaping attitudes to disability, and how and why is this changing at an event – Leaving No One Behind at Birmingham City University. The day was organised by the charity Include Me Too and community platform World Health Innovation Summit.

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:

With my sister Raana, (left) pic: Maya Gould

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:

Quote from writer and activist Paul Hunt

“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.

Research from Glasgow University on disability in the media

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.

Typical results from a Google image search on “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:

Portrait of Martin Bell, used in my recent Guardian article


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.

The book I’m editing, Made Possible, featured recently in the Guardian

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.

Challenges like the impact of austerity, for example, or the health inequalities, or the fact that over 3,000 people are still locked away in inappropriate institutional care.

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 nailed it: DJs with disabilities take to the air

Martin Bell, DJ and part-time assistant radio station manager

I met DJ Martin Bell (“not the man in the white suit!)” at the station where he works, Direction Radio in Epsom, Surrey, for a Guardian story published today.

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).

L-R station manager Chris Fenn and DJ Martin Bell
L-R Chris Fenn and presenter Nick Walewski
L-R Martin Bell, Nick Walewski

Made Possible: groundbreaking book hits 100% crowdfunding

Six weeks ago I launched a crowdfunding campaign for Made Possible, a groundbreaking collection of essays on success by high-achieving people with learning disabilities.

The book is inspired by my sister, who has the learning disability fragile x syndrome, as well as by some of the remarkable, succesful people I’ve met and interviewed over the last few years – all of whom happen to have a learning disability.

I’m delighted to say the book is now 100% funded, such has been the fast pace and mounting enthusiasm for the project. More than 200 diverse people and organisations have got behind the book since its launch on 6 September.

Made Possible presents the authentic experiences of a range of professionals who have a learning disability in different areas like theatre, music, art and campaigning. And, for the first time, these high achievers tell their own personal stories of success, in their own words.

It is a book to change the current narratives about learning disabled people, narratives that mean they are talked about as somehow less than human.

Thank you to everyone who’s got involved and backed this book. I can’t wait to start working on it. To find out more, follow the book’s progress and to pre-order a copy, see Made Possible on the Unbound website.

Made Possible is a month old

It’s taken less than four weeks for the book I’m editing, Made Possible, to become more than 50% crowdfunded – and this is all down to the project’s incredible and growing band of supporters.

The anthology includes the experiences of people with learning disabilities in their own words – it challenges the current narratives on learning disability which dictate that people are pitied, patronised, and not heard from directly. It presents the authentic experiences of a range of professionals who have a learning disability; these high achievers tell their own personal stories of success.

As a social affairs journalist, most of my work over the last 20 years has been influenced by the fact that I have a learning disabled sister. I know that her learning disability doesn’t define her, but society inflexibly labels her in terms of her condition, instead of recognising her personality, skills and abilities.

Attitudes must change – and that’s why we need this book, which is already halfway to being published (click here to make a pledge to help publish the book and join its community of supporters).

To hit such a milestone so soon reflects a determination of so many people to shift negative attitudes towards learning disabled people.

Made Possible also considers the wider context that undermines people’s talents and aspirations. For example, we’re in party conference season and the Conservatives are gathering in Manchester as I write. Yet most politicians (with a few rare exceptions) overlook learning disabled people – despite the fact that more than a million people with learning disabilites are entitled to vote. This is not only an equality issue – why does the political world seem to bypass people who have both a right and a desire to go to the polls? – but vote-needy politicians could do with wooing this signifcant chunk of the electorate.

Many of this book’s supporters (scroll down on this page to “Supporters”) including campaigners, activists, self-advocates and support providers – are among a strong and growing lobby working hard (all year round – not just during conference season) to change this. I’m looking forward to reflecting the vital growth in this kind of activism and awareness-raising in Made Possible.

* This post is based on an update originally published on the Unbound website

Fresh perspectives on social care: a new exhibition

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 jmeyer@certitude.org.uk

Made Possible: challenging attitudes to learning disability

So pleased to launch this today with crowdfunding publishers Unbound – a book challenging perceptions of learning disability .

Have you ever heard a person with a learning disability talk about their talent, or share the secret of their success?

No. That’s why Made Possible needs to be published. It’s a collection of essays on success by people with a learning disability.

There are 1.5m people with learning disabilities in the UK today – my sister among them. But our society – media, politicians and the public – barely gives them lip service. If ever learning disabled people do get a mention, they are usually talked about as scroungers who are a burden on the state, or superhumans who have triumphed over adversity.

People with learning disabilities are pitied or patronised, but rarely heard from in their own words.

This new book challenges the current narratives.

This book needs your support to get published – find out how to help here, and please share widely.

Thank you!

Prejudice and inadequate support: the situation for minority ethnic children with learning disabilities

Callum and Parmi Dheensa (photo: Parmi Dheensa)

When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.

It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.

My Guardian article focuses on Parmi’s charity, Include Me Too, which works with 1,500 families a year. It has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities.

The charity has now launched a campaign asking the government to review BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.

Read the article on the Guardian website.

Growth of inclusive project to break barriers to ballet

The UK’s Flamingo Chicks also delivers inclusive dance workshops overseas, this is a session at the Multikids Academy school in Accra, Ghana (photograph: Flamingo Chicks)

 

“It is the one place she can be herself” is how one parent described the inclusive dance school I wrote about for the Guardian last year.

I’ve been following the progress of the Bristol-based Flamingo Chicks, which has just published its latest impact report and is now preparing for its spring show tomorrow, Saturday (you can read more about the background to the organisation in this original piece).

An inclusive dance session run by Flamingo Chicks (photograph: Flamingo Chicks)
The three-year-old community interest company, which has English National Ballet artistic director Tamara Rojo as a patron, brings disabled and non-disabled children together to do ballet.

Over 2000 children and young people aged 2 to 25 attended the classes and workshops in 2016-17 through workshops across the UK and regular classes in Bradford, York, Bristol, Cardiff, Leeds and London. The campaigning slogan is “ballet not barriers” and while the majority of young participants have a range of physical disabilities, learning disabilities and autism, 22% are not disabled.

The need for more more inclusive arts groups is reflected in a recent survey by charity Scope and parenting website Mumsnet. It showed that four in 10 parents of disabled children say their child rarely or never has the opportunity to play with non-disabled children.

Josie and her helper Joe at an inclusive dance session (photograph: Flamingo Chicks)

Josie Wilkins, who has a learning disability, attended mainstream dance classes with the help of her older sister, but as she got older the “gap” between her and the other pupils became wider and she had to leave. The family found Flamingo Chicks, where Josie, 10, who is also visually impaired, is a regular. She recently had major surgery but returned to class as soon as she was out of hospital, wearing, Ingrid adds “a pink tutu, and dancing in her wheelchair using just one arm!”

Recognising that preconceptions about ballet may put off boys, Flamingo Chicks launched boys only groups and introduced more male teachers and volunteers (in the last year, 38% of participants were boys). The company’s recent Dad & Me campaign also focused on the challenges fathers face when caring for a disabled child. Of 250 fathers who participated in a survey as part of the campaign, only 10% had told their boss they had a disabled child, mostly due to fear that it affect their career.

Alfie Pearson, who attends the inclusive dance sessions, with his dad and sister (photograph: Flamingo Kids)

The organisation has also delivered training and workshops overseas (I’ve blogged about this before), so its model can be emulated elsewhere. The overseas work includes collaborations with the special school in Ghana (pictured at the top of this post), a country once described as “the worst place in the world to be disabled”.

Find out more about Flamingo Chicks and its #balletnotbarriers campaign on the website, Facebook or Twitter

The disability and employment gap: interview


Around 49% of disabled people in the UK aged 16–64 are in work, compared with 81% of non-disabled people, according to government figures.

The government has said it wants to narrow this gap (the figure has remained the same for decades) but at the same time its various policies and cuts relating to disabled people undermine this aim. A recent government green paper on work, health and employment, proposes to help at least 1 million disabled people into work, but has met with a lukewarm response from campaigners.

This was the context to a recent interview with Gareth Parry, the chief executive of employment organisation Remploy, which has £50m of contracts from central and local government to help disabled people get jobs or support them back into work.

Parry, who worked his way up Remploy after starting as a trainee almost 30 years ago, has depression, something that he says gives him a more personal insight into his job running employment support organisation (“It reinforced the importance of organisations like Remploy; work gave me routine, structure, focus, when everything else in my life was in chaos”).

He is a forthright speaker about how his personal experience influences his role at the helm of an organisation aiming to support people with mental health issues; he wants more senior executives to be open about mental ill-health, for example.

The organisation, however, has its critics. While Remploy was launched by the postwar government in 1945 to give disabled second world war veterans sheltered employment, the last factories closed in 2013 in line with the idea that mainstream employment was preferable to segregated jobs. Yet many felt the closures abandoned disadvantaged people.

More recently, in April 2015, Remploy was outsourced to a joint venture between US-born international outsourcing giant Maximus – which has come under fire as the provider of the Department for Work and Pensions’ controversial “fit for work” tests – and Remploy’s employees, who have a 30% stake in the business. Critics say that being owned by Maximus undermines Remploy’s status as a champion of disabled people.

Parry rejects such suggestions: “I can understand why people would see it that way, but we have a strong social conscience, the employee ownership keeps us focused on that, the profits don’t go overseas to America, they go back into the [Remploy] business.”

Longer term, Parry believes Remploy could take on international work, like advising other countries on closing sheltered factories. He adds: “Our mission around equality in the workplace has always been and is within the confines of the UK, but if we want to make a real difference in society in the UK, the opportunity we have now is to say ‘why stop there?’” Future issues in employment support, he adds, include sustaining an ageing workforce, with help for issues like dementia in the workplace and other age-related conditions.

In terms of other changes, Parry’s words on the rise of online support (as opposed to face to face advice) reflect a general trend towards more online and digital support: “I’m not suggesting online will replace face-to-face services, but the idea of giving the power of choice to the individual as to how they access services is meaningful”.

Remploy is almost unrecognisable in terms of its remit, ownership structure and operations since its inception more than 70 years ago; as the government and local government contracts on which it once relied are dwindling, it will be interesting to see where the next few years take Remploy – and, most importantly, those it helps.

The full interview is here.

Campaigner Jonathan Andrews on the talents and skills of autistic people

Jonathan Andrews was once advised to hide his autism from prospective employers. Instead, he is making his name by doing just the opposite.

The 22-year-old recently won campaigner of the year at the European Diversity Awards 2016 and talked to me about his work for a Guardian interview.

He’s involved in a plethora of awareness-raising projects, including sitting on the first parliamentary commission on autism. He also advised the government on its green paper on work, health and employment, which is out to consultation until later this month.

The graduate, who is an academic high-flyer, starts a trainee solicitor role later this year. He believes a law career will enable him to create practical change, but says combining law with campaigning is crucial. As he explains: “There is only so far legislation can go…you need to be winning hearts and minds to get change.” For his views on work and disability, see the full interview here.

He credits his family for their supportive role in his campaigning and he speaks powerfully about how his younger brother defended him against school bullies (“It was words like ‘retard’”). Jonathan stressed that it was in fact his brother who found it harder to deal with the verbal abuse: “I developed a thick skin, people used to tease me, but I always felt there would always be people like that and it was best not to focus on them. I came out in a better state than my brother, because I could shut it out and carry on – but for people who love you, it [trying to rise above verbal abuse directed at a relative] can be harder.”

An autism diagnosis at nine was, he says, useful in understanding his needs, but some of his parents’ friends reacted with sympathy. “The instant reaction was ‘I’m so sorry’. My mum would say ‘why?’ She said ‘my son hasn’t become autistic because of this diagnosis – it lets me understand it [autism] better; he’s always been my boy and is the same person he always was’.”

What struck me about Jonathan’s work – aside from the huge amount of awareness-raising at such a young age – is that he works on a range of diversity issues; along with autism, he raises awareness of mental health issues and LGBT equality. For example, he’s launching a best practice autism toolkit with the Commonwealth disability working group in April and hosting a related Commonwealth Day event in March.

He is also involved in promoting LGBT rights as co-founder of professional network the London Bisexual Network, challenging the idea that an autistic person “is not a sexual being because you are somehow ‘other’”. He adds of his campaigning on autism as well as LGBT issues: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.”

He also works to educate young people about domestic violence. He explains: “When I was child and I saw something that was wrong, I wanted to correct it and when I see something that is blatant injustice I just want to do what I can to help…[with domestic violence campaigning] I know what is is like to have a stable family, family that loves you, and I want others to be able to experience that.”

In fact, his broad range of campaigning interests reflects the change in attitudes which he is trying to achieve through his work: “People often think with autism you have to be interested in one thing and this means that you are great in one area and terrible at everything else.

The full interview is here.
You can follow Jonathan on Twitter @JonnyJAndrews