A Beyoncé concert and confronting changing abilities
Discover more from The View From Down Here
A Beyoncé concert and confronting changing abilities
Hello,
I’ve noticed something about myself recently that I have been struggling to understand. My hope is that one of you wise people might have some insight.
Here is the thing: while I have seemingly endless patience and compassion for my body when it comes to anything cerebral palsy related (it has been decades since I was annoyed that my legs wouldn’t carry me up some stairs), I become irrationally frustrated when my body plays up in any other way.
A recent example. Bare with me because it needs a bit of backstory. About four years ago I was made extremely ill by a weird nasty inner ear virus called labrynthitis, which makes you feel a horrendous combination of dizziness, sea-sickness and vertigo. It was horrid, but I had two bouts of it and then for all intents and purposes, I got better. Except, as we’ve all learned in the past few years, viruses have dodgy lingering effects. For me, these effects look like: a propensity to feel dizzy if I’m tired, further propensity to fatigue (as if I needed that), and earache when I go swimming. And, more bizarrely, an oversensitivity to flashing lights, particularly strobe lights, that makes me feel so dizzy and disorientated that panic constricts me like a corset pulled too tight. It is not pleasant, but not exactly a massive problem either. Often I can solve the problem by a) closing my eyes, or b) lying down.
Except when I can’t. Which brings us to last week, and Beyonce’s concert in London. She was, of course, incredible, but it’s fair to say I spent a lot of the show feeling nauseous and heartstoppingly anxious, because there were strobe lights everywhere. They were so strong and bright that closing my eyes did little to help; I could see the flashing through my scrunched up eyelids. Luckily, some of my favourite songs were strobe-free, but by then I was on edge - waiting for the next bout of vertigo and panic.
After the concert, I felt deflated and frustrated. I was annoyed with myself for not having seen it coming (the last time I saw Beyoncé, many eras ago, she had been lit by a single spotlight), but I was also annoyed that I had been panicked by something as objectively harmless as a light (I don’t have epilepsy). And I was frustrated that there was now another thing to add to the list of things my body and brain can’t do or cope with.
This doesn’t make a lot of sense. Here are some other things I couldn’t do at the concert: hold my drink, get up and dance, stand in the crowd, put my coat on when I got cold. And, obviously, none of these things bothered me. I didn’t even register them until I tried to list them for this piece. I wasn’t even that concerned by the fact that after the show we were stranded in the depths of North London for a while because we couldn’t get a cab and my chair battery was too low to brave the Overground. I was, of course, annoyed that the organisers hadn’t thought to arrange an accessible taxi drop off. But I wasn’t annoyed with my body and its reliance on a wheelchair. Of course not. Yet I was still quietly seething about all the dizziness.
I can’t explain this difference - at least, not well. I like to joke that I’ve used up my allotted share of patience for my CP and don’t have any left for anything else, but that’s not strictly true, because I actually don’t have to summon patience for not being able to dance on my feet as I truly, wholeheartedly do not care. Sometimes I think I have just had more time to adjust to the CP situation and one day I’ll feel exactly the same about whatever is going on in my inner ear, but that doesn’t feel true either, especially as CP is always moving the goalposts anyway. I’ve been wondering, instead, if there’s something in the fact that the ways I am disabled by society because of my CP have become part of my identity and how I see myself while the sensitivity to lights has not. After all, I routinely describe myself as a wheelchair user; I have never labelled myself a dizzy person.
All of which is to say: disability is complicated. I consider myself a very proud disabled person, and I am. The social model is not only at the heart of my work but at the heart of my conception of myself. But that doesn’t mean there aren’t negative or confusing feelings, or that new developments don’t temporarily unbalance finely tuned models of self-acceptance. The good news, I guess, is that I have the skills to figure this stuff out. The less-good news, for most of us, is that we are likely to have to figure it out several times over.
In the meantime, if anyone has any words of wisdom or, indeed, tips for how to stop strobe lights making you feel detached from reality, drop them in the comments.
See you soon,
Lucy
Pre-order my book!
That’s right! My debut book is out on 7 September and it’s now available to pre-order!
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.
I put my heart and soul into this book and I’d love it to reach as many people as possible. Pre-orders will help it do so, as they encourage media coverage and stock buying by booksellers.
If you enjoy this newsletter, I reckon you’ll love it.
A Beyoncé concert and confronting changing abilities
I DO THIS TOO! I suspect it's internalized ableism a lot of the time. Like, I have done so much around accepting my bendy-spoonie chronic-pain hEDS experience and I've got systems for managing it and have learned how to accept it when something dislocated or a muscle seizes up. It's *familiar*. But then, when something new goes weird (I had a bout of pancreatitis recently, for totally unknown reasons since I don't drink nor eat any of the foods that commonly lead to pancreatitis) with my body, I have zero patience or tolerance for it. And yet, when I look back at these experiences, it's little wonder I was a mess. I unfortunately apply that my familiarity with one thing should make me better, somehow, at coping with something entirely different. "I live with chronic pain, why did this *entirely different experience of pain in an area I usually never feel it* undo me?"
Well, there's my answer in my own frustration. I think: I am not someone with pancreas issues therefore, I do not deserve to be so undone by this pain. I am someone who *knows* pain, therefore I should be able to cope. But tension headaches and dislocation and muscular pain is very different to gut pain and an acute thing is very different to a chronic pain. I know what to expect when it comes to hEDS so I can roll with it. Familiarity makes things significantly easier to handle and either respond to or simply accept.
We accept our bodies because they are us and we are them - we need to accept ourselves to have any chance at good mental health or happiness. Most of us are less willing to accept periodic illness and accident as part of ourselves, and so we treat them as enemies - it's human nature. I reckon.