Please Stop Talking about the ‘Quality' of Disabled Life

Sharing some thoughts from Lucy Webster

Sighted people are usually surprised to learn there is endless discussion among blind people about whether we would want to see if given the opportunity. The point of confusion is simple. “Why wouldn’t you?” There are lots of answers, but most boil down to the fact that many (though certainly not all) of us are quite comfortable being blind. We don’t pretend to be comfortable to feel better, or to have a stiff upper lip about our lot in life. We’re truly fine with it. This is generally unfathomable to abled people.

I’m sure I’ll write about my position in this discussion at some point. But for now, I want to take the hypothetical one step further. What if the question wasn’t whether to leave blindness behind, but chronic pain. Then, surely, the answer would be an unequivocal “yes, I’d do it.” Right?

Not exactly unequivocal. Lucy Webster is a British journalist and disability activist with cerebral palsy. She also has chronic pain. Or she used to. She happily concedes that pain is “rubbish.” But in a recent post, which appears below in full, she details her complex thoughts on the pain vanishing, and how to communicate those thoughts to non-disabled people. I always find myself nodding along to Lucy’s incisive articulation of the strangeness, anguish, and joy that are disabled life in an ableist world. But I wanted to highlight this post because it explains how the assumptions underlying the question “Why wouldn’t you?” lead, quite directly, to suffering and even death for disabled people. They are assumptions we (including, often, me) need to unearth, scrutinize, and then chuck in a bonfire.

Thanks so much to Lucy for permission to repost here. She writes about disability, sexuality, and gender on Substack at The View from Down Here (which is also the title of her book). Click the subscribe button. It’s well worth your time.

Pain and the Nonsense Concept of ‘Quality of Life’

Some complicated thoughts

Hello,

Whisper it… For the last two weeks, I haven’t been in pain.

Maybe that doesn’t sound like a big deal to you. But it is to me. Because I’ve spent about a decade managing a searing pain around the top of my spine and across my right shoulder, that honestly felt like someone was holding a lighter in my muscles. For the first five or so years it would come and go, worse when I was working or out and about but better when I got out of my chair. But then it settled into a constant nag, angry and raw. In the past few years, the only relief came from a massage and only lasted 48 hours or so, if I was lucky.

To be honest I’d just priced it in. The pain was bad but what was worse was all the mental calculations that came with it. How long could I sit up for? Which activity should I prioritise? Was the fun thing I wanted to do worth the payback? How much work could I take on? It made me less creative, less willing to try something new in case it turned out not to be worth the effort.

I thought this was just how life would be. Then I started attending my new physio and Ellie turned me upside down (no, I shan’t elaborate) and gave me permission to move how I want to. The pain started to melt away. Because it turns out that the pain wasn’t just a natural consequence of ageing with CP and doing more than I was ‘supposed to’. It was a consequence of holding myself still in order to perform acceptability, of doing things the way I’d been told was normal rather than the ways that work for me. Moving in ways that are more natural for me, and asking for more help than I used to, has helped bring some fluidity back into my body, reducing the rigidity that was the source of all that pain. (I also think having my body and brain treated with a new level of kindness has had quite a lot to do with it, but that is perhaps a topic for a different day.)

I’ve been reluctant to write this post because I know how lucky I am, both to be able to afford this care and to have a body whose pain is treatable. I sort of feel like I’m bragging. And I sort of don’t want to jinx it for myself. But I thought I should write this post because I want other people with CP to know that you don’t have to just grin and bear it. You deserve care that prioritises your wellbeing over shoving you into a box that was never made for you.

And I wanted to write this post because it brings up something important that applies far beyond my body, or CP, or the reduction of pain. Because I’ve been finding it hard to tease out how I feel about this development, and my fear that my delight at being almost pain free will be misinterpreted as saying something about the lives of people who are in pain, or about the need for disabled people to ‘get better’ in the traditional sense.

Pain is, it’s fair to say, rubbish, so being in less of it does mean that my day to day life has improved. I think it’s fine to acknowledge that. But do you know what hasn’t changed? The list of things I can and can’t do (indeed, I am making a concerted effort to do less, as I attempt to put less strain on my nervous system).

In mainstream society, though, we judge disabled people’s ‘quality of life’ by how able they are compared to a nondisabled ‘norm’. The less able, the worse ‘quality of life’ we are assumed to have. I hate this so much that every time I tell someone how great my new physio and pain reduction are, I feel the need to clarify that I am not gaining ability and nor do I want to.

(Important caveat: while pain is undeniably crap, it is also perfectly possible to have a very good life while being in considerable pain. I did for years. I imagine I will again. This is not a post arguing that being in pain makes life terrible. Please do not use it for such nefarious nonsense.)

My experiences in the past few weeks have shown how profoundly wrong the assumed relationship between ability and a good life is. Yet it’s a presupposition that remains deeply ingrained and, among others, underpins so many of the ableist issues we face, from being seen as undatable (who wants to go out with someone whose life is crap?) to the dangers of assisted dying. On a more everyday level, it also underpins a lot of the failures in healthcare that disabled people frequently experience. If medical professionals are only ever interested in ‘improving’ ability, they often ignore the things that disabled people actually want help with, like pain or sleep issues or something entirely unrelated to their primary impairment.

It’s also behind the gross ways we think and talk about disabled kids. The comparisons with nondisabled milestones. The focus on doing things ‘normally’ rather than with ease. The hours spent at physio and speech and language therapy rather than just playing. The praise for fitting in rather than being yourself. Most of us who received these messages as kids spend our adult lives unpacking them, and yet parents and kids are still told that these are the ways to guarantee ‘quality of life’. They are, decidedly, not.

You’ll notice that all through this essay, I have put the phrase ‘quality of life’ in quotation marks (scare quotes?). This is because, while it is a useful shorthand and I do obviously think there are things that can improve or worsen the experience of being alive, I think the concept as we conventionally understand it is… bullshit. For a start, it’s not something we can objectively measure. It certainly isn’t something we can decide about or for anyone else. It definitely isn’t defined or determined by all the things - ability, independence, ‘normality’ - that nondisabled society has decided it should be.

Yes, I am enjoying being in less pain. Yes, it has made my life better. Yes, I am grateful. No, I do not need to be ‘less disabled,’ ‘more able,’ or ‘more normal’ for any of that to be true. My ‘quality of life’ is, as ever, not up for debate.

Speak soon,

Lucy