It’s not all about Boris Johnson – the UK’s first doctor specialising in profound and multiple learning disabilities will start work in a groundbreaking pilot later this year, as I report in today’s Guardian.
I spoke to Erica’s family, who told me her life was saved after a chance intervention from a specialist “intellectual disability” doctor who had trained abroad.
Erica’s experience has led to a pioneering project in her hometown of Hull in which a new specialist will be recruited by the local clinical commissioning group later this year. And campaigners say Erica’s story proves the need for a national network of similar specialists to help reduce the health inequalities experienced by learning disabled people.
An expert group, convened by former health minister and Liberal Democrat MP Norman Lamb, is researching this idea right now.
The group’s work is timely because of a growing focus on the entrenched health inequalities faced by learning disabled people. Autism and learning disability are priorities in the NHS long-term plan, and a recent NHS-commissioned review of mortality rates shows learning disabled people die earlier and are more likely to die in hospital than the general population. Recent inquests into the deaths of people including Richard Handley, Joe Ulleri and Oliver McGowan reflect the inequality.
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.
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.
If it is rare to see learning disabled people interviewed or mentioned in the mainstream media (unless they’re involved in a care scandal), then it is completely unheard of to see someone with a learning disability conducting an interview.
Which is why I’m posting these images of Shanna Lau and Jermaine Williams who visited Channel 4 last month (to coincide with the local and European elections) to interview Jon Snow. The news anchor talked about accessibility in the news and voting and their interview is published today in the bi-monthly Easy News, the first accessible news magazine for people with learning disabilities which is supported by United Response.
Shanna and Jermaine are part of the team that produces the magazine; launched last year, it uses simple words and images to create easy to explain big news stories and help people engage with current affairs and politics.Stories include the death of Nelson Mandela, the Winter Olympics and Paralympics and the 2014 Budget. By the sixth edition, 3,272 people had downloaded it – 250 per cent over target. According to United Response, 90 per cent of readers say it is easier to understand than other news sources while 78 per cent feel politics is now relevant to their lives, compared to 31 per cent a year previously.
Jon Snow told Easy News: “I think sometimes [news is] happening in places in the world that [people] have never heard of…And it’s very difficult to explain to people in a short space of time – because you only have a very short time in the news – it’s very difficult to give them all the facts. And sometimes you need a lot of facts to understand what a story is all about.
“I certainly think that [news can help people to vote]. If you are able to simplify it, which we very often do not, we assume a level of understanding which often isn’t out there. But I think if you can simplify it, it will make it very much easier for people to vote.”
An easy read version of the full interview, which was set up by United Response with help from disability campaigner, Kaliya Franklin, is in the ninth edition of Easy News published today. To download the latest edition of Easy News and to sign up for future editions, go to the United Response website.
Good to see a nod to the blog on the Guardian Select pages this morning, especially when the page featured is from the Bound exhibition about disability issues. A reminder of the point of this site: “It champions the good stuff going on in terms of support, much of it small unsung hero-type projects, which is important at a time that so many charities and support schemes are losing funding.” Read more here.
Hello all, briefly highlighting my words posted in the comments thread under my Guardian interview last week with the Muslim mayor of Tower Hamlets council, Lutfur Rahman.
I’m re-posting my comment here for clarity given there were around 140 responses last time I looked.
“Thanks if you’ve read and commented on this piece. As many of you know, it’s written for the SocietyGuardian interview slot, which has a particular format and tone and if it was an investigation or piece of long-form journalism, it would have been tagged as such. The aim, mentioned early on, is to push aside the mutual mudslinging, hype and hate, and look specifically at whether or not aspects of the latest budget stack up long term – essentially, can the council balance its books? The piece doesn’t set out to repeat or re–explore the well–documented allegations and criticisms which are available to read in other places:
‘Is it time that Tower Hamlets, a political morass and England’s third most deprived authority where half the 250,000 residents are from black and minority ethnic (BME) backgrounds, mostly Bangladeshi, be looked at afresh?’
While it’s not possible to include or analyse every element of spending or cuts in 1200 words, the piece ultimately disputes Rahman’s claim of fireproofing the frontline and his divisive nature, outlined at the start, is reflected by many of the responses here.”
Here’s a comment from my editor in the same thread:
“As the editor of the Society section I commissioned Saba to interview Lutfur Rahman, about the plans he had in place to try to protect public services in Tower Hamlets from huge spending cuts. He seemed to be taking a very different approach to councils such as Newcastle, whose leader we profiled a couple of weeks earlier. The interview was intended to explore Rahman’s approach by giving him a chance to put his case and to assess whether or not his plans were viable.
I appreciated that he is a divisive figure for various reasons outlined in the interview – such as alleged links to Islamic fundamentalist groups which he has has repeatedly and categorically denied – but the purpose of the interview was not to focus on this aspect of his leadership which has been the subject of TV documentaries and countless column inches, but to focus on his policy initiatives. I feel that it achieved this, as some of you have acknowledged in your comments.”
If you’re interested in reading more, try this, on the Telegraph website, which leads on from the comments thread and outlines issues not included in the Guardian piece. These issues weren’t included for the reasons stated in the piece itself and in the two responses above.
More background, history, facts, detail as well as conjecture from all parties involved – journalists, commentators, residents, Rahman’s supporters, his opponents and politicians of all hues – is easily found via a quick Google search.
Finally, there are a couple of links here and here (specifically the section marked footnote on the second link) by other writers who have felt compelled to clarify their reporting of and interviews with Rahman.
As a journalist writing on social affairs I often wonder if my articles make any difference or whether this kind of journalism is essentially exploitative. The dilemma isn’t original. Journalists and photographers struggle with it all the time. Mostly I ignore it. But it niggles.
So, I’m commissioned by a children’s charity to interview a single mum it’s been working with. She’s got five kids; black mould spreads thickly across her kitchen ceiling and down the back wall. One of her daughters, a little girl with asthma, sleeps in a pink bedroom so icily cold I feel my skin shrink when we look in. A single photograph of a baby lost to cot death is unobtrusively placed among the many pictures of her other children displayed in the front room.
There’s a housing association building site at the end of the terraced row, but this woman can’t get hold of the £400 she needs to secure one of the warm, dry family houses that will soon be available.
I write my piece feeling angry and hopeless. My fee is more than the money she needs for that deposit. I wrestle with the thought that I should give it to her. I don’t.
A year on, I still wonder if I should have done. This is hardly war reporting, but these are people living on a front line. They’re who I write about. And then I disappear off, my notebook full, my deadline pressing. I rarely see them again.
Does this kind of journalism change anything? I don’t know. It’s what I do, what I can do, what I have time to do. I know it’s not enough.
Though what’s playing out in the Leveson enquiry means that rotten practices are being dragged through the mire, the level of underlying suspicion about journalism saddens me, because it’s based on a misunderstanding of what any kind of serious journalism is about.
I don’t do this job because I want to stiff as many people as possible in the name of selling papers. I do it because stuff goes badly wrong in certain bits of public life, and in the small way that writing articles allows, I want to ask why – then persuade, cajole, flatter or embarrass people into giving me the answer.
The judgements I make in writing a piece may be taken fast, but they aren’t taken lightly. For instance…
I’m constantly examining the ethics of how I go about writing a piece. Particularly if an interviewee is vulnerable or not media savvy, I know that I can’t get across their tone of voice, or give every bit of background about their situation, so which quote I pick really matters.
I’ve written a fair bit about young single mothers. Asked why they got pregnant, why they chose to keep the baby, how they manage. And sometimes you’ll get a teenager replying along the lines of: ‘Some girls do get pregnant to get a council house, yeah, absolutely.’
What do I do with that? I know those words will make a strong headline. But if I use them rather than the less instantly “good value” comments, I don’t do this young mother’s entire situation justice. So I will think very, very hard about how to treat that kind of quote, and whether to include it at all.
Occasionally, I do stuff I know an editor wouldn’t like. National news organisations do not give interviewees the chance to see or approve copy before publication. There are practical reasons for this – deadlines, for example – but mostly, it’s about retaining editorial independence. Otherwise people ring up and say, “actually, I’d prefer it if you didn’t write about such-and-such a thing I told you about, it’ll make life really awkward.”
That, I’m afraid, is tough. If you don’t want me to write something, then don’t tell me, or alternatively, negotiate when you want to go off the record carefully and in advance.
But when a charity puts me in touch with someone struggling to rebuild their life, and they talk frankly about the hell they’ve been through, I’m aware a clumsily phrased comment about their situation could knock their confidence at best and make life even more difficult for them at worst. So sometimes I will read back quotes to an interviewee to make sure I have accurately reflected their views and they’re happy to go public with them.
On one occasion, I spent an afternoon with a young recovering drug addict who had spent four years on the game to fund her and her former boyfriend’s habit. She’d had her eldest daughter taken from her by social services: now pregnant again and with a new partner, she was on track to being allowed to keep her baby.
Given what she told me about the horrors of her previous lifestyle and job, I don’t know how she’d found the strength to kick her habit, but I was damned sure that nothing I wrote was going to set her back. The finished piece was written entirely in the first person; the risk of misrepresenting someone when you do this is real, no matter how good your intentions.
So I sent her the finished piece to look at. In this specific situation, editorial independence wasn’t going to trump her right to have her life described accurately and in a way that wasn’t going to put her recovery at risk.
Unlike many ‘important’ people who cavil at tiny bits of phrasing, this woman didn’t ask for a single change. And when my editor told me to go back and ask her a question – how much did she charge for each particular “service”? – (something I regard as the low point of my journalistic career) she didn’t get offended or slam the phone down. She told me. And, as I was finishing the call, she said thank you.
I loved doing that piece of work. The access and insight journalists get is central to why I am still entranced by this job.
But returning to my original question, does this kind of journalism change anything?
Well, that piece was published in The Times. A lot of people would have read it. The charity that supported her would have got some publicity.
What they really needed though was money to support more girls as they tried to get off the game. Maybe the piece helped them twist a few funders’ arms. Whatever it did, it’s nothing in comparison to the work done by dedicated experts at the coalface of disadvantage, poverty, suffering and violence.
When I try to answer the ‘does it make a difference’ question, I feel a bit like when you donate to charity online. Do you pick £2, £10, £25 or a bigger sum that means you won’t be able to buy that dress you had your eye on? Whatever you put is something, but it’s probably not as much as you could have given, and it’s certainly never enough.
So, it was only a matter of time before The Social Issue went into social media stereo with its very own (and very new) Facebook page , another place to comment, suggest blogpost ideas or make contact. Or just give us a little thumbs up, for example…