No, chronically ill people aren't faking it

As I was flicking through Instagram the other day, I paused over an article a friend had shared from The Telegraph. The headline read ‘How having a disability became cool’.

My first thought (before recognising the publication it came from, a notoriously right-wing British newspaper), was that it would be celebrating the growing pride that disabled people have been able to find in themselves, and in their community. Or how disability is starting to be represented more in mainstream art and culture.

The article, sadly, was nothing like that. It was an ableist rant, accusing disabled people - specifically chronically ill or neurodivergent women (just to squeeze a bit of sexism in there too) - of faking it. It mocked people who have conditions that are poorly understood and underfunded, including ME/CFS, POTS, EDS, and FND. It called mobility aids “accessories of their disease” and joked about how these people appear to be healthy from the outside. The author also mentioned the prevalence of mobility aids at “transgender rights marches”, just so she could add transphobia to the article’s list of prejudices.

I could say a lot of things about the sneering cruelty of the article. How it puts a target on the back of people with invisible disabilities, who are already struggling every day to get the care and treatment we need, dealing with doctors who don’t understand us. Who, sometimes, need to wear ‘accessories’ (like a sunflower lanyard) to make it clear to other people that we may need their support or understanding because we have disabilities they cannot see. How little funding is available to us. How many of us have become disabled as a result of COVID-19, and how people are so quick to want to forget that COVID is still here, and disabling more people daily.

But I suspect my breath would be wasted; the author seems to come from a place of judgment and distrust towards disabled people.

Instead, I want to unpack why I think this article has been published, the attitudes that are driving it, and how we as disabled people might challenge those attitudes.

People with invisible disabilities are becoming more visible

The article references “sickfluencers”, social media influencers who share the realities of life as chronically ill people, and sometimes share advice or guidance for people who are new to their diagnoses. Personally, these influencers’ content - from people like Chronically Jenni, Valerie’s Voice, and Miranda Allen, for example - has been hugely beneficial to me. Not only have I learnt from their experiences and been able to use their advice, but I’ve felt more comfortable using accessibility tools that I felt too ashamed to use before. So why is this a problem for someone like this Telegraph journalist?

Previously, chronically ill people were largely invisible in society. Particularly those who are housebound or bedbound. It’s only really the past few years that the community has become loud enough to be noticed by non-disabled people. Let’s be real, a lot of non-disabled people are scared of disability. Seeing sick and disabled people reminds them they can become sick or disabled too. It’s easier for them when we are out of sight, out of mind, because then they don’t have to think about how they might cope with the challenges of being a disabled person living in an ableist society.

That’s not the only reason why visibility of disabled community might be resulting in a backlash in the media. As a marginalised community grows stronger and more visible, there is almost always a negative reaction from certain parts of society. Much like the growing culture war against trans people, which followed a brief period of increased acceptance and visibility in the 2010s, there is starting to be a backlash against chronically ill people, and disabled people more broadly. Anyone whose existence challenges social norms is considered a threat, and now disabled people - who the author says are of little economic value (yuck) - are posing a threat.

This isn’t a reason for us to shy away from being visible though - it’s all the more reason for us to band together as a community and keep making ourselves known.

Fear of acknowledging the real impact of COVID-19

Anyone who is still taking COVID precautions knows that it is pretty unpopular to remind people that COVID still exists. A lot of people are in denial about how much the COVID pandemic has changed the world; how many people died, and how many of us are now disabled too. Rather than recognise the reality that we’ve just been through a mass-disabling event, we’re now getting these articles expressing confusion about what they believe is an entirely random increase in disabled people. In reality, most of the conditions referenced in the Telegraph article are also linked to long COVID. There’s no mystery here about why more of us are chronically ill. Part of it is that more of us are speaking about it, but undoubtedly it’s also the result of the massive pandemic we’ve been through.

Again, it might be tempting to shy away from talking about COVID and its relationship to disability, because of the backlash we’re experiencing. But the backlash just shows that what we’re talking about is breaking through - all the more reason to keep protecting ourselves and our communities against COVID, and encouraging our loved ones to do the same.

Fear of disabled communities, and how we can challenge social norms

We’ve already touched on this topic, but the fact is that anyone who poses a threat to the norms of society - especially capitalism - is quickly targeted by hateful articles in right-wing publications like The Telegraph. Disabled and chronically ill people are not likely to be as productive or useful to the economy as non-disabled people. That’s not a moral failing. But if you’re someone who believes strongly in the importance of a capitalist society, of course you are not going to like the idea of losing so many workers. So rather than accept the truth that not everyone can and should work a 9-5, this Telegraph journalist is pushing an ableist narrative that chronically ill people are lying, that we’re actually just fine, apart from a bit of anxiety. No reason not to get to work!

The reference to transgender rights marches at the beginning of the article is no mistake either - it’s true that there’s a lot of overlap between queer and disabled communities. No doubt there are people who are scared of that - who are scared that we are finding solidarity together, and becoming stronger as communities. Instead they’d rather pit us against each other - trans people who are seen (by transphobes) as violent and deviant, versus disabled people who are infantilised (by ableists) as innocent and child-like. The idea of us finding commonality with each other is baffling, to such people. But in recognising the shared experiences we have across communities, we can create stronger bonds, and collectively push for positive social change.

Just classic ableism

Of course part of the motivation for writing such a cruel and disgusting article about disabled people will surely be pure, classic ableism. I suspect the author would claim that she respects ‘real’ disabled people, but the existence of this article gives the impression of someone who has little understanding or respect for our community at all. Why else would you care if someone is pretending to need a mobility aid (which, of course, no one is)? Unless you think it is a bad thing to need one? Luckily, as a community we’re used to challenging ableist attitudes. As long as we can stick together, and have solidarity with each other regardless of our disabilities, we can push back against this kind of ableist rhetoric.

So what can we do about all this?

There’s heaps we can do. You don’t have to be a high-profile journalist to have an impact, or have your voice heard.

1. Stay connected with your disabled friends and whānau. Check in on each other, and offer support when you can.

2. Be part of disability communities - come to D*List events like Crip Café, and sign up for newsletters so you’re aware of disability-related events in your area. DPA and Arts Access Aotearoa do awesome newsletters.

3. Continue wearing masks and taking COVID precautions. Aotearoa COVID Action has a useful guide on how to wear a mask most effectively. Encourage the people around you to do the same - it’s never too late to restart precautions against COVID.

4. Understand the beliefs and values that are important to you, and stand strong in them. Find community with people who care about the same causes as you. If you’re in Tāmaki Makaurau, Kaiāwhina could be a good place to start.

5. Follow disabled creators online - one of the few upsides to the Meta and Google algorithms is that once you follow a few, you’ll probably start to see a lot more. This helps to boost the visibility and platform of these creators.

6. Continue to work in solidarity with each other; across disabled community, with queer and trans people, Māori, refugees, and all other marginalised communities. We have more in common with each other than our oppressors want us to believe.

7. Keep speaking up when you hear ableist nonsense, even when you feel like you’re being annoying. Encourage your non-disabled friends to do so too.

If you are a chronically ill person and you had the misfortune of reading that Telegraph article, I am sorry. I encourage you not to read it, unless you’re feeling particularly resilient today. It is not worth your time. If you are a disabled person who is not chronically ill, I just ask you to remain in solidarity with your chronically ill friends in the community. Don’t let stories like this turn disabled people against each other. There is no competition to be won; if we try to appear respectable to non-disabled people at the cost of other disabled people, we only weaken our own community. We have nothing to gain by doubting or policing each other, but we have everything to gain by strengthening and growing as one big community.

Further reading:

For a deep-dive into the sexism baked into these ableist attitudes, check out this Polyester zine article, “Why Are Disabled Women Constantly Being Nitpicked?”

For an even more detailed deep-dive into the falsehoods being peddled by this Telegraph article, and another similar one recently published by The Times, check out “Young Women, Walking Sticks, and the Cost of Disbelief”.