Hello,
How are you doing? Thanks for bearing with me while I had a bit of a break. I’m definitely feeling less pessimistic than last time I wrote to you, which is a relief, although I confess I can’t shake this feeling of emotional overwhelm that’s been following me around for a few months now.
So, at least for a little while, I am not going to be writing about myself. Instead, let’s look outwards and address some of the wider issues my community is facing at the moment.
To that end, I want to talk today about “self-diagnosis” and the furore caused this week when Philippa Perry, usually a writer I admire, said ADHD had become “fashionable,” and criticised people’s need to turn things they experience into an identity.
And here’s the thing. I know what she means, or I know what she think she means. But the comments are nevertheless deeply unhelpful - both based on myths and perpetuating them further.
Let’s start with the myths Perry’s comments were based on:
Despite what some elements of the media would have you believe, there is no new fashion for neurodivergence - just look at the discrimination neurodivergent people face to see how ludicrous that idea is. What there might be is a new societal acceptance of the idea that different people have different ways of thinking, and I can’t see how that could be anything but a good thing
There is also not an epidemic of people diagnosing themselves with things for the sake of it; more often than not, “self-diagnosed” people have been trying and failing to get help for years, thwarted by medical and educational systems that cannot or will not help. (Also, it should be painfully obvious that the only way to get diagnosed with ADHD or autism as an adult is to ask to be assessed for them, which rather necessitates believing you might have them, doesn’t it? Otherwise you… wouldn’t ask.)
Moreover, Perry’s comments make it sound like you can just declare yourself disabled in some way and then get all the help you need. If wishing made it so, eh? In reality, even those of us with lifelong medical diagnoses struggle to access basic support. And anyway, you shouldn’t need to be “officially disabled” to be entitled to do things in the ways that work best for you
What really got me exercised, though, were the myths that Perry’s comments perpetuated. Namely, that it is wrong to identify as disabled, because, obviously, being disabled is bad.
This is such a pervasive idea - and one that can do so much harm to disabled people. Identifying as disabled brings with it a wealth of positive things: self-acceptance, self-understanding, the ability to advocate for yourself, friendships, solidarity and, most importantly, community - a place in the world. Yet because the world insists both that disability is not an identity, and that to be disabled is a negative thing, legions of disabled people feel it is better to deny they are disabled (to themselves as well as to others) and so to miss out on all those positives. And, in an ableist world that demands collective action, refusing to see disability as a social identity keeps disabled people siloed, stuck in individual battles against discrimination rather than joining together as a movement.
In other words, discouraging people from identifying as disabled is rooted in ableism and prevents us challenging that ableism.
Which may explain why I only ever see nondisabled people making a fuss about self-diagnosis…
It’s time for nondisabled people to stop gatekeeping an identity and a community that aren’t even theirs.
So, for the avoidance of doubt: if you think you have a mental, emotional, sensory or physical condition that influences how you live, how you experience the world or how you are treated, you are disabled. That’s it. Welcome to the club.
See you next week,
Lucy
That’s right! My debut book is NOW.
It’s a memoir about life as a disabled woman, how ableism and sexism interact in complicated and multifaceted ways, and how we often have to fight to be seen as women at all. Find out more here.
I put my heart and soul into this book and I’d love it to reach as many people as possible. Please do grab a copy or share the link with anyone who’d be interested.
*claps heartily* Well said!
"Also, it should be painfully obvious that the only way to get diagnosed with ADHD or autism as an adult is to ask to be assessed for them, which rather necessitates believing you might have them, doesn’t it? Otherwise you… wouldn’t ask." Also this. Every self-diagnosed person I have met (or peer-reviewed diagnosed, if you will) has basically made looking into the criteria for various neurodivergence a special interest for months, if not years. It's not like folks just watch a single video and go "Hmmm, that seems familiar, I must also be XYZ."
Nevermind the ableist gatekeeping that is a diagnosis process, where folks often have to pay hundreds, if not thousands, to see a specialist. If you don't have the funds, which is most people, then heck yes, you will rely on self-diagnosis.
It frustrates me immensely. I would rather one or two people looking for attention (because yeah, sure, they exist) "abused" the system so every self-diagnosed person could get the support they need, than the system we have where hundreds or thousands of people are dismissed and ignored because maybe some people will adopt an identity to feel "special."