Recently, I read something by a chronically ill woman, explaining how her health issues (and the associated caregiving) had taken away the passion in her marriage. Instead, she was watching her husband clearly view her body differently, consumed by the fear that she was powerless to stop it. For me, the most heartbreaking part of this story was that she seemed to understand the shift in his behaviour, as if nothing about her could be desirable anymore. My first instinct was just to say “get a new husband”, but it’s never that simple, unfortunately. See, I have spent a lifetime alongside these struggles and I’m not sure that they can ever be entirely overcome. With that said, there is nothing more empowering than feeling good about yourself when the rest of the world refuses to be inclusive about their beauty standards. Like, sometimes we need to live in order to spite the people that feel uncomfortable about such levels of confidence.
I started being kinder to myself when I came to the realisation that disabled people are conditioned to feel shit about themselves, in every aspect of their lives, but most especially relating to their intimate relationships. For example: we are surrounded by a very loud discourse that either considers us to be completely asexual or questions whether or not we’re simply being exploited whenever anyone shows even the slightest amount of interest. Of course, these are both important discussions to have, but the suggestion that they are applicable to disabled people as one homogeneous group is very deeply damaging.
When I was at university, one of my greatest joys came from writing an essay about how disabled people should have access to inclusive sex education. I had been really anxious about this at the time, since it didn’t entirely follow the guidelines we’d been given, but I was passionate enough to put any academic concerns aside. After reading it, my lecturer remarked that I had taught him something and gave me the highest grade in class, which is something that I’ll forever be proud of. I mean, the statutory curriculum makes no mention of how to support pupils with physical disabilities. When updating these guidelines, the PSHE Association acknowledged that this group has voiced feeling invisible throughout any relevant classes, without offering any solutions as to how this might be accommodated for. The sources for this information can be found here and here, though it’s clear that not much has changed, at least within the public domain. Looking back, I firmly believe that this lack of representation triggered something in my brain saying “this information does not — and will never — apply to you”. More than that, though, it also sent a subtle message to my non-disabled peers that they were never likely to date anyone with varying levels of ability. So, the cycle continues. This creates an almost morbid fascination around how we have sex — or even if we can at all. Let me say this: the answer looks different for everyone and every experience is valid, even the ones that don’t fit into your ableist and/or homophobic opinions about what really counts.
The point, I suppose, is that we don’t owe you an explanation. You are not entitled to that information. We allowed to have autonomy over our own bodies, thanks. Also, we deserve to explore our sexuality without being made to feel like it’s a scandalous event. The rest is, frankly, none of your business.
If having sex when you’re disabled is still a complex conversation, then it’s relatively easy to understand how these same points can be connected to pregnancy. As an example: a few years ago, Tanni Grey-Thompson was heavily pregnant when someone came up to her in the street and declared that the idea of her having sex was disgusting. With this, here are a few reminders: disabled people have every right to experience parenthood as others do, if that’s something they want. Disabled people’s bodies are remarkable — and you don’t get a voice in what’s appropriate to do with them. Disabled people can be (and are) wonderful parents. Go and read a book or watch a documentary, you’ll find plenty of examples.
Okay, I’m almost done ranting now, but I do have a request. In the UK, disabled people often risk losing their benefits and financial stability if they move in with a partner, which is unfair beyond all words. We deserve to experience love (every aspect of it) fully and completely, you know? The fight towards equality is far from over yet, but it would mean so much to me if you signed the petition for change here. xxx
Rachael, you are going to be the most incredible mother. I will forever fight in your corner.