‘A person with a learning disability is a person first’

'Made possible: Stories of success by people with learning disabilities – in their own words', edited by Saba Salman and published by Unbound, is out now. Deputy Editor Annie Brookman-Byrne asked Saba about the book.

23 November 2020

Can you tell us about how your sister Raana inspired you to put this book together?
Made Possible simply wouldn’t exist without Raana, who has the learning disability fragile X syndrome. When my sister was younger, she wasn’t asked that question that all children get asked: ‘What do you want to be when you grow up?’ Society simply doesn’t regard someone like Raana as capable of success and that’s what inspired the book. I wanted to challenge the concept that having a learning disability means aspiration doesn’t apply to you. I’ve seen my sister grow up and achieve amazing things, whether that’s winning a commendation from her headteacher for being a role model for other pupils or moving to supported living and becoming more independent. I wanted to share her success and prove that with the right support everyone can shine. Success is such a crucial part of being human and if we don’t extend it to learning disabled people we fail to see them as human. Made Possible is, thanks to Raana, a book about equality and inclusion, with a clear, simple argument at its core – a person with a learning disability is a person first.

Do we need to alter our definition of success?
We absolutely need to change how we define success – and who we allow to define it. Success is a universal concept; there needs to be far greater acknowledgement that it applies to everyone, and that it can take many different forms. Raana hasn’t won any national honours or performed on a national stage and screen like some of the Made Possible contributors, but that doesn’t mean what she’s achieved is any less valuable. What success looks like depends on the individual. Made Possible features the stories of groundbreaking and successful people in the arts, campaigning, politics and sport. Yet my sister’s version of success is that she lives in a place she loves, surrounded by people she wants to be with and chooses to do things she enjoys – she’s also supported to keep up strong links with her family. Society would never regard Raana as successful because if you mention the words ‘learning disability’ to most people, they’ll think of personal deficit, not personality. We need to value what people can contribute to society and I think we’d be richer for it if we did.

What’s your favourite story of success in the book?
I honestly can’t pick a single one because they’re all so powerful and engaging and each has a unique tone and voice. A lot of readers have commented on how they love the direct and raw energy in human rights campaigner Shaun Webster’s story and how he’s proved his critics and bullies wrong. I’ve also had some amazing feedback on singer Lizzie Emeh’s chapter where she describes her talent and others fell in love with actor Sarah Gordy’s words on the art of acting and what drives her. I genuinely love all the essays and throughout lockdown I’ve been dipping into them to stay motivated and positive.

Is the way that society sees people with learning disabilities changing? And how does it need to change going forward?
Had my sister been born 50 years ago, my parents would have been encouraged to put her away in an institution and forget about her. Thankfully this doesn’t happen today, so clearly attitudes have changed for the better. Equality and inclusion laws have been introduced (thanks to decades of campaigning by activists and families) and people live far better lives. But more than 2000 people are still locked away in assessment and treatment units, less than 6 per cent of learning disabled people are in paid work and health inequalities mean they die sooner than they should. And coronavirus has exacerbated these challenges not least with the huge problems over testing and personal protective equipment. People have effectively become less visible during lockdown and the death rate among learning disabled people more than doubled during Covid-19. It’s utterly shameful.

Made Possible proves there’s another way and that people are capable of reaching their potential if supported and enabled in a way that works for them. We need attitudinal change and for learning disabled people to be more active and involved in our neighbourhoods and communities – something that is entirely achievable. There’s a great quote in Made Possible from self-advocate Paul Scarrott, who works with user-led charity My Life My Choice: ‘People should come in and see our charity and see what we do – it would change people’s minds’. Paul’s absolutely right. There are people doing amazing things every day, yet most people are completely unaware.

What can psychologists do better to support those with learning disabilities?
We know that people with learning disabilities get far worse healthcare outcomes than those without learning disabilities and are overlooked for treatment. Too often, diagnostic overshadowing means issues with a learning disabled person’s physical or mental health are put down to their ‘condition’, and assumptions are made that have disastrous outcomes. I know so many people who have spent time in institutional care and while they might have eventually recovered physically from the experience, the emotional and mental toll is harder to overcome. As ever one size doesn’t fit all – talking-based therapies don’t suit my sister for example, who finds verbalising her feelings difficult – but a more creative approach might suit her better. I’d hope the best practitioners would adopt a tailor-made approach led by their clients with ‘reasonable adjustments’, for example, for people who find communication difficult. Capturing a view of the whole person might also involve drawing on the knowledge of someone’s support staff or family, which isn’t always par for the course. Essentially, learning disabled people have every right to live as full a life as anyone else and not to be treated as second class citizens and psychologists can play a crucial part in changing this status quo.

- Picture: Raana Salman (left) and Saba Salman (right). Credit: Maya Gould