Embracing my disability

Content note: cancer, discussion of ableism

It took me a long time to be willing to call myself disabled. Longer than it should have, really. I kept finding reasons why it wasn’t true – I don’t use mobility aids (until I did); I’m not “officially” disabled (as though that matters – my chronic pain certainly doesn’t care that I don’t count as disabled under the Equality Act); I don’t want to presume to call myself disabled when other people are much more disabled than me (and yet, I’d furiously disagree with someone who told me I wasn’t queer enough). But that was all a veneer papering over the fact that I just didn’t want to be disabled.

I wanted to be like everyone else (but only in this one way). I didn’t want pity, or special treatment. I told myself lies about how I wasn’t different, that the things that were becoming difficult were things I didn’t want to do. But really, underneath, it was pure internalised ableism. Subconsciously, I thought of people with disabilities as being different from everyone else – and I wanted to be part of the everyone else. Ironic, really, since I’ve never wanted that in any other aspects of my life.

And then I got cancer. Which made all my other symptoms worse. And during the course of cancer treatment and the aftermath of that treatment, I was finally willing to accept that I am disabled.

I’m sure I would have reached that conclusion eventually: my conditions were only ever going to get worse, after all. But cancer definitely helped to speed up that realisation.

The root of my resistance to labelling myself disabled was that I didn’t think of it as a positive identity – unlike being queer, or non-binary, or mixed race, I didn’t see any positives in it; it seemed to be an identity consisting solely of losses. But of course, that’s the ableism talking.

I came across the social model of disability a while ago, which helped to clarify my thoughts about disability: it made so much sense! But I still didn’t feel comfortable using words like disabled to describe myself. I felt like I didn’t have the right to those words at the same time as not wanting to admit to myself that I was disabled. I felt like embracing the label of disabled would be giving up on the possibility of becoming “healthy” again – even though I knew full well that there was no chance of a cure. My dodgy joints will remain so, my chronic pain will never disappear. The best I can hope for is to minimise the effects of both.

I’m still not part of any disabled community, nor taking part in any activism, but maybe that will come in time. For right now, I am just accepting that part of myself, acknowledging its existence, and recognising that it’s okay, that I am still me, that this aspect of my identity is just another part of myself that I need to come to terms with.

© bardofupton 2018

Some thoughts on identity

I went to see a play today (April 11, 2018) called Scene about an interracial queer couple, and it got me thinking about identity.

About how long it took to start identifying as black/mixed race: because I grew up in a country where black and brown people were in the majority and were in positions of power, I had precisely the white Western experience that “people like me” are normal. Not that I didn’t know any white people – I did. I had white friends and family, but I was not aware of their race (or my own) as a thing. I just thought of them as people with different hair/skin to me, but not fundamentally different in any way. I certainly didn’t feel less than them, or that they thought of me as lesser. I had to move to the UK to have that particular experience. I’ve had to train myself to be aware of race, in a way that black people born in the UK probably don’t.

I identified as bisexual (these days I call myself queer) way before I started thinking of myself as black – and in fact I never did think of myself as black. I identify as mixed race, and I’m aware that other people think of me as black.  For me, black is something imposed on me from outside – much like I thought of my gender, back when I (sorta, kinda, well-if-you-push-me-then-I-guess-I’m-female?) identified as female. It was never how I felt, more how I knew other people saw me. Which is weird in its own way – I knew it wasn’t me, exactly, but I tried so hard to fit into the boxes that other people put me in.

Now I don’t care – or rather, I do care, I just know that being myself is more important than trying to conform. One of the few positives I can say about having had cancer is that it really makes you think about what matters to you. And what matters to me is being myself, and not trying to fit into other people’s boxes. My therapist called me brave, for (finally) realising my gender identity and acting on that, and I told her that it’s not bravery, it’s survival. I can’t pretend any longer. I can’t spend the rest of my life trying to meet other people’s expectations, because I have become suddenly strongly aware that the rest of my life might not be all that long.

And identifying as non-binary has been an amazingly freeing experience. I mean, there are a bunch of downsides, like legally my gender does not exist in the UK. But for the first time in my life, I have stopped worrying about whether I’m enough – do I meet the expectations for my gender. Because there really aren’t any. I get to decide what I look like, rather than having to try and look how someone else thinks I should. I don’t have to worry about being feminine enough – because that’s not me. It has been so relaxing.

© bardofupton 2018