Saba Salman calls on the mainstream media to more accurately reflect the lives of those with learning disabilities and explains how her new book of essays, written by the learning disabled, aims to change the narrative.
Say the words “learning disability” to most people and they will probably think of headlines about care scandals or welfare cuts. That’s if they think of anything at all.
The latest figures from NHS England show that 451 people who have died from the Coronavirus since 24 March were recorded as having a learning disability or autism. According to the Care Quality Commission, there has been a 175% increase in unexpected deaths among this group of people compared to last year.
Mainstream media coverage of the Coronavirus reflects a nonchalance. Give or take the odd exception, the reporting has failed to acknowledge the impact of the pandemic on the UK’s 1.5 million learning disabled people like my youngest sister Raana.
Outside of COVID-19, if learning disability issues hit the headlines, they usually reinforce stereotypes about “vulnerable people” unable to fend for themselves. And when a story makes the media, it rarely includes direct words from someone with a learning disability.
There is no awareness – either in society or in the mainstream media – that someone like Raana could be productive. My sister was never asked, when she was younger, “what do you want to be when you grow up?” Aspiration and success fail to apply to people like her, who are pitied as vulnerable victims or patronised for triumphing over adversity.
This is the reason for the book Made Possible: Stories of Success by People with Learning Disabilities. The anthology, which I edited, challenges stereotypes through the stories of people whose achievements are awe-inspiring – regardless of their disability. They describe, in their own words, what needs to happen for learning disabled people to reach their potential. The powerful first-person experiences are from a human rights campaigner, a critically acclaimed actor, a civil rights activist, a singer-songwriter, an elite swimmer, a fine artist, an award-wining filmmaker and an elected mayor.
Alongside these grand achievements, the book also focuses on the kinds of ‘ordinary success’ enjoyed by my sister. This includes Raana doing her own shopping, choosing how she spends her time or using public transport (the latter which she was doing before the lockdown with support from her care staff).
Raana, who lives in supported living in Hampshire, has the moderate learning disability fragile X syndrome and needs lifelong support. While this is an accurate and factual description of my sister, there are other truths. Raana loves music, she bakes delicious brownies, likes Chinese food, adores listening to music (loud), has a cheeky sense of humour and favourite catchphrases. For her family, Raana’s ability and personality comes before her disability and support needs.
Acknowledging and narrowing the gap between Raana’s reality and how she is perceived is crucial. This is difficult when the language used about learning disability is mostly negative. I wince when I read that people “suffer from” a learning disability, for example.
Language influences attitudes. Research by Glasgow University shows that the public believes that up to 70% of disability benefit claims were fraudulent and that people came to this conclusion based on articles about “scroungers”. The real figure of fraudulent benefit claims? Just 1%.
We must change the narrative about learning disability and shift who controls it. We should write or speak with people, not just about them. People without learning disabilities should amplify the voices of people with learning disabilities, instead of speaking on their behalf (even if this is well-intended).
I spent more than a year collaborating with the contributors to Made Possible, supporting each as much or as little as they wanted. We got the stories down by meeting, video calling, emailing, messaging and through long telephone calls. Many also had help from family, friends, colleagues or support staff with logistics (such as arranging our editorial sessions). Every single contributor was clear about the tone of their essay and the impression they wanted to leave readers with. This was not a quick process, but it was a rewarding and important one because it meant the stories are authentic.
Improving perceptions means hearing about the ordinary lives of learning disabled people on television and on the news, as extras in dramas, for example, or in vox pops.
We also need to close the shocking employment gap that exists, which would help people with learning disabilities to be more visible. Research shows that only 6% of people with learning disabilities work, but around 65% want to. And years of austerity have eroded the support people rely on to live, so our fragile social care system – further embattled after the Coronavirus – needs urgent funding.
There is a caveat. As a former news reporter, I know deadlines limit the amount of interviews a news journalist can do. General news reporters on breaking stories do not always have the specific contacts or the luxury of time to reflect multiple perspectives in a story, unlike specialists or feature writers. While we need more positive media representations of learning disability, it is equally vital to highlight the challenges and inequality faced by people like my sister.
But, if the media serves society, then it must be more accurate about how it includes and portrays a huge section of that society, that happens to have a learning disability.
‘Made Possible: Stories of Success by People with Learning Disabilities’, edited by Saba Salman, is published on 28 May by Unbound
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