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.
As I write in a new piece for Byline Times, the latest figures from NHS England show that more than 450 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.
My sister Raana made this film on the theme of community – helped by her brilliant support worker Indra – for sharing at this week’s (Un)Ordinary Conference in London.
The event, held by the campaigning learning disability charity Stay Up Late, was billed as “a learning disabilities conference with a difference” because professionals from the social care sector made up much of the audience and those on the platform had a learning disability and/or autism.
The event explored learning disabled people’s views on community, relationships and employment.
I’ll write about my own thoughts later, but right now I don’t want to put my own filter on what Raana wanted to share – not least because if I did, that filter would spontaneously combust into a zillion radiant pieces of joy.
I am so incredibly proud of my creative, determined sister, a fact that will be obvious to those who’ve supported and been following the progress of the book Raana’s inspired, Made Possible.
What I will add though, for context, is that Raana has fragile x syndrome and in the past she’s found it tricky to do some of the things she does now. And while she’s done public speaking in familiar places with friends and her trusted support staff, it was a huge deal for her to travel up to London for the day and be in a place she’d never been to before with a whole new bunch of people she’d never met.
Raana didn’t fancy making a speech or taking questions, hence the film with captions.
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.