Why disability in Britain remains a hidden story

It’s exhausting being disabled at the best of times, never mind when you’re constantly lobbying and protesting just to be heard

The tweet came from Rachel Charlton-Dailey, who is the founder of The Unwritten, a platform for disabled people to share their stories without worrying about being turned into inspo or trauma porn. I appreciated the tagline, having myself heard “inspirational” used in my hearing and lost some enamel from one of my teeth.

It said this: “Census data reveals today that 9.8 million people in England were disabled in 2021. That's 17.7 per cent of the population.”

Something snapped when I saw it.

We've always known that the numbers were substantial. Estimates vary but they typically fall somewhere between, what, 12 per cent at the lower and 20 at the upper end? Sound about right? As a part of the UK census, this figure qualifies as an official statistic.

As a proportion of the population, it is actually a slight reduction when compared to the previous exercise in 2011 (19.3 per cent) but there was an increase in absolute numbers (9.8 million vs 9.4 million).

In Wales the equivalent figures were 21.1 per cent and 670,000 for the 2021 census, 23.4 per cent and 696,000 in 2011. In Scotland,19.6 per cent of the population is disabled or has a long-term health condition, rising to 24.3 per cent in Northern Ireland.

The data is, of course, based on (ahem) self ID. It’s not clear why the proportions and numbers have changed in the way they have. It would be interesting to know. The results might be disturbing.

However, for the government to officially recognise someone as disabled for the purposes of providing support, the process is very different to just ticking a box. It requires one to embark on the equivalent of one of those ironman triathlons.

For most people, a marathon is quite the challenge. “Ironman” competitors do one of those after first completing a 2.4-mile swim and a 112-mile bike ride. You have to be slightly crazy to do that. You have to be slightly crazy to prove your disability too.

There’s the paper leg, which includes gathering together a huge chunk of evidence before filling out a complicated and stressful form. There’s the assessment leg: putting it all in front of the DwP before attending an interview. These can be exhausting (and again, very stressful). Then there’s the appeal leg, a legalistic process that involves appearing before a tribunal that, while those involved do their best to make it as pain free as possible, can still often leave appellants feeling like they’re criminals. This is the legacy of a certain Iain Duncan-Smith.

Credit is due to the Work & Pensions Committee for raising these issues under Stephen Timms. And of course, there are the disabled people’s organisations and outlets nationally and locally. These include Disability Rights UK, the Disability News Service, York Disability Week, Buckinghamshire Disability Service, along with the bigger-name charities.

However, in terms of the wider context, disability only rarely gets a look in when it comes to the wider conversation. Every now and again there’s a story that bursts through, usually when someone is treated with particular cruelty. These sometimes get a bit of traction if they involve, say, a Paralympian, or one of the couple of high-profile disabled journalists the BBC has on staff.

But this is still uncommon. It doesn’t help that there are so few disabled people working in the media. Commentators, personalities, guests on talk shows who are disabled and thus know what they are talking about? They are vanishingly rare, I’m afraid.

Did you see Doctor Who has cast a disabled actor (Ruth Madeley)? Writing in the Radio Times, Melissa Parker – who has also penned pieces for The Unwritten – described this as a “game-changing piece of disability representation”.

I respect her opinion, but I’m not so sure. The BBC has a habit of making a big fuss about things like this and then thinking great, got that box ticked. Now we can move along. Did someone make sure the claret was ordered in for the boardroom lunch?

When I saw that news I was put in mind of a line from Common’s searing Black America Again: “You put a n**** in Star Wars, maybe you need two, and then, maybe then we'll believe you.”

If disabled Britain is making progress in the face of the widespread discrimination and abuse it experiences, it is doing it at the pace of a snail on a hot enough day for the Met Office to cough up a warning.

Part of the problem is caused by simple exhaustion. It’s exhausting being disabled at the best of times, because disabilities and health conditions are exhausting to deal with. Many of us struggle to sleep. I do because my body hurts just about all the time. Writing columns like this one helps keep my mind off it. But to lobby and protest and lobby some more and protest? Yep, I’ll need coffee in the drip feed today thanks.

Another song – this time an even older one – by REM lodged itself in my brain when I saw Charlton-Dailey’s tweet: “REM’s ‘Ignoreland’, a sudden blast of raw anger aimed at America’s Republican Party that bursts out of an otherwise contemplative album just over halfway through.”

Except that you need to add a D to where Britain’s disabled community lives to make it accurate. Welcome to “Ignoredland”. This is something of a global problem, it’s true. I’m not going to pretend it’s easy to find some sort of crip-nirvana out there. But damn if I’m not going to scream the next time I hear a Tory minister piously declare Britain to be “a world leader in disability rights”.

I know, I know. Disabled people aren’t alone living in Ignoredland. Britain is not, for example, a post-racial society (despite what some people would have you believe). Racism is still commonly ignored. I haven’t heard much said or read much about, say, the experience of young black men who dare to go out in possession of a hoody. Women’s concerns are frequently and repeatedly ignored. Those who speak up are often abused.

We need to talk about these things too. We need to act on them. We need the people with the power to change the narrative to be held to account when they sit on their hands. Ignoredland is a big country. Let’s make it smaller.