Season’s greetings to everyone – this is me with my sister Raana, thanking everyone who’s collaborated on stories, projects and posts this past year – here’s to more of the same in 2019.
Big thanks also to all of you who’ve supported or helped publicise the crowdfunded book I’m editing, Made Possible, about the talents of people with learning disabilities. It’s
partly inspired by my sister, who has the learning disability fragile X syndrome, and aims to shatter the lazy stereotypes we have about learning disability.
Here’s hoping 2019 will bring more action, instead of just more rhetoric, as I’ve written before, and the people who have to spend the festive break in inpatient care are reunited with their families soon.
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
As the Twitter screenshot above says, I’m on a break from blogging and tweeting so I can progress the book, Made Possible, a collection of essays on success by high achieving people with learning disabilities (yes, you read that right – this book’s all about shattering stereotypes!).
You can find out more about this crowdfunded collection of essays here which is being published thanks to some incredible support from its patrons (a list of supporters so far is available on this page if you scroll down to ‘supporters’).
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.
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.
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).
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.
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.
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