Whilst the Coronavirus pandemic has shattered the lives of many during the last few months, the 1.5 million learning disabled people in the UK country have been silently suffering. According to the Care Quality Commission, there has been a 175% increase in unexpected deaths among autistic people or those with a learning disability, compared with last year.
The release of a new book Made Possible has the potential to help create change by challenging narratives and shattering lazy stereotypes surrounding people with a learning disability.
In Made Possible, eight individuals present their authentic experiences – in their own words – and show everyone what society misses out on by overlooking them, pitying them, patronising them, and labelling them in terms of their conditions. Contributors include actor Sarah Gordy MBE and Paralympic athlete Dan Pepper. Crucially, the book reveals how people can make invaluable contributions to society when their potential is acknowledged and supported by those around them.
Guardian writer and social affairs journalist Saba Salman is editor of Made Possible and her sister, Raana, has a learning disability. Saba is also a trustee of the charity Sibs, which supports siblings who grow up with or have grown up with a disabled brother or sister. Here, Saba tells My Family, Our Needs why the creation of Made Possible is so important and why its timely release can wage a war on the continued discrimination against people with a learning disability.
Q1. How did you come to be involved with Made Possible?
The idea for Made Possible came from growing up with Raana, who has the learning disability Fragile X syndrome. When she was a child, I noticed that no one really asked Raana what she wanted to be or do when she was older, but adults usually ask children this question all the time. It was as if she had no potential because of her learning disability; no one expected her to aspire to anything and the concept of success just didn’t apply to her.
Made Possible is my attempt at challenging that by sharing my sister’s story of how she started to live a more independent life and by introducing readers to successful people who also happen to have a learning disability. I wanted to create an honest but ultimately uplifting and empowering book that I’d have loved to have read when Raana was younger – and one that would resonate with a wide audience because of its engaging and entertaining stories. So that’s what I pitched to my publisher, Unbound.
Q2. The eight contributors are all equally amazing; how did you choose them to be part of the book?
I was familiar with a few of the contributors having worked with them on articles in the past. I didn’t know their full stories, but I was convinced their experiences and insights would be powerful just based on what little I knew. I’d heard of a few of the others so I used my contacts as a journalist to approach them.
Q3. The book is a first of its kind – how do you think it could change perceptions and shatter stereotypes of people with a learning disability?
If Made Possible makes people think twice about learning disability that’s half the job done because unless you have experience of learning disability in your family, school, community or workplace it’s not something you’d consider. Made Possible also shatters stereotypes because it opens people’s eyes to the fact that its contributors are remarkably successful in their chosen fields regardless of any disability. The people in the book aren’t passive recipients of support but determined, creative and opinionated individuals – and they don’t pull any punches in telling their stories. The book should also encourage people to realise what we all have in common – hopes and dreams, and the desire to live a good, successful life and to define that success for ourselves. If we ignore the fact that success extends to learning disabled people too, we effectively fail to see them as fully human. That’s the perception that Made Possible transforms.
Q4. What was your experience of growing up with a sibling with a learning disability? How do you think attitudes have changed over the years, or has much remained the same?
Raana was a lot younger than me – I was 17 when she was born – so I’d imagined that I’d be the one to take her to her first gig or festival and do all these ‘big sister’ things with her. So, if I’m honest, I initially felt a lot of sadness when I realised that we wouldn’t be able to share these sort of landmark events in the same way (crowds and noise can make Raana very anxious). But this realisation also made me change my pace and be led by Raana, which of course is how it should be anyway (we have quite different musical tastes anyway so it’s probably for the best that we didn’t go to any gigs together…).
I’ve learned a lot from Raana about resilience, determination, compassion and the joy in taking time out to do something creative, whether that’s pottery or drawing. There have been difficult moments, of course, like finding the right support or navigating the benefits system. But the overwhelming feeling I have now is one of pride, especially when I visit Raana in her supported living in Hampshire and she shows me around her hometown.
As for how attitudes have changed over the years, they’re undoubtedly better than they were a few decades ago when learning disabled and autistic people were hidden away in institutions. But there’s still massive inequality in terms of housing, healthcare and employment opportunities. I don’t think most people are antagonistic towards people with learning disabilities; it’s just that they don’t usually give them much thought. And despite the fact that Raana’s care staff are incredible and I know so many support workers that are really led by they people they support, there are still some incredibly patronising attitudes among people working in health, education and social care.
Q5. Siblings of disabled children will have faced some tough challenges during lockdown – how do you think they can be supported by organisations like Sibs?
Siblings of disabled children are so often overlooked in terms of their needs and the lockdown has made this worse. They’ll have spent much more time at home and away from their friends and regular routines. Although many might have loved the extra time with their disabled brother or sister, for others it might have also meant taking on more of a caring role – or a dual caring role if they’re already fulfilling that role with a parent. Sibs has some fantastic resources for young siblings (and their parents, teachers and other support professionals) from lockdown advice to managing your feelings. Most of all, Sibs helps you realise that you’re definitely not alone.
Q6. I think Made Possible should be in every library of every school in the country. How important do you think it is to instil that belief in people with a learning disability that they can succeed early on in life? Imagine if a copy was handed out by a careers advisor…
Everyone has potential and something to offer, and for that to be recognised by both teachers and their pupils early in life is absolutely vital. The lives of learning disabled people are rarely talked about in terms of careers and that, as Made Possible proves, is so wrong. I would love for this book to be in the hands of careers advisers – and for them to read it and act on it before they pass it onto students.
Q7. Do you have any other projects in the pipeline after the success of Made Possible?
I’m currently looking at a few really powerful social justice stories for the autumn and I’m also interested in developing the collaborative storytelling approach I used in Made Possible (I worked closely with each contributor and their families to produce their chapters). I also want to raise more awareness about the issues the book champions through events (mostly virtual for the moment). And there’s still more work to be done in spreading its positive messages and stories and ensuring these reach as many different people as possible. I know I’m biased but I defy anyone to read Made Possible and not be moved to think and act differently – and also just to enjoy a really great, positive, inspiring read.
Made Possible is edited by Saba Salman and published by Unbound. Buy your copy of the book here
With thanks to Maya Gould for use of featured image of Made Possible author Saba and her sister Raana.