Reminder: Being Disabled is Sexy

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.

A screenshot of a Tweet by nix et alia, which reads “so i went to a sexual health clinic today in my powerchair & i swear to god. 

the woman was already trying to direct me out of the door before i opened my mouth to say i had an appointment. then she stops & goes ‘YOU have an appt HERE?’ 

yes my good binch: crips have sex too *face blowing a kiss emoji*”
I’ll just leave this here. Enjoy.

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

Owen, my love, you understand me in the most beautiful way and I will never stop being grateful. Rachael, you are going to be the most incredible mother. I will forever fight in your corner.

I’m Tired of This Bullshit

Can you believe that it has been almost a month since I last wrote anything here? To be honest, there have been various moments within that time where I have considered giving up the blog completely, purely because it feels like I have run out of insightful things to say. Although 2021 has only just started, I find myself exhausted by all that it has brought, you know? My brain has found everything slightly difficult to handle (which is probably an understatement), making it somewhat impossible to organise my thoughts in any kind of meaningful way. Still, if at least one person can relate to the weird sense of being suffocated by current events, then maybe allowing myself some vulnerability here is worthwhile.

So far, a recurring theme is my lifelong attempt to avoid feeling disabled, in any way that I can. From the optimism that surrounded my previous post, it’s clear that I was beginning to find different (and healthy) strategies for distraction. Oddly enough, I was slowly becoming more comfortable within the uncertainty, desperate to believe that better days would soon be on the horizon. Then, we entered into yet another period of lockdown restrictions. Each time this happens, I’m reminded that my version of normality will never be the same as everyone else’s — there’s always going to be something in the way, something that the vast majority of people will never be able to grasp. Almost overnight, the precarious balancing act that had been whirring inside my mind simply began to crumble. To be totally transparent, I don’t leave my bed unless absolutely necessary anymore. By extension, I also don’t wear anything but pyjamas, unless there’s a very specific reason for me to look like I have my life together. Otherwise, what’s the point?

Right now, the negativity seems to be seeping in from all angles. Slowly, I’m learning that sometimes it’s important to hold hands with the darkness until I feel ready to dig myself out again. I need to grant myself the space to process these emotional hurdles in a healthy way, without the pressures of forcing myself to follow any one particular timeframe. Thankfully, though, I have a Netflix subscription and am currently taking each hour as it comes. (Hit me with any recommendations you might have. We can work our way through the weirdness together. I finished watching Marcella in one day, if that helps.)

With all of that said, I am here with one very specific purpose: to draw attention to disability issues in times of crisis. If you have read this far, hopefully you care enough to stick around for this next part, too. Because every day, there is at least some focus on the news about how the current pandemic is affecting the elderly in care homes. Of course, this is a heartbreaking issue that deserves a significant amount of coverage, but let’s not forget that the same problems are also being faced by disabled people of all ages. Not only does this contribute to the narrative that our lives are not important enough to be included within mainstream conversations, but it also makes it harder to access the relevant support.

This felt like an especially timely point to make after the news that Katie Price’s son, Harvey, will soon be moving into residential college. Just like the elderly in care homes, disabled people in assisted living arrangements have also been disproportionately isolated by the pandemic. They are also not currently allowed visits from family and friends, with some of them not always able to understand why this is necessary. Yet, this is rarely recognised within any media coverage. These people’s lives are not a burden and I refuse to let them be forgotten.

Stay home, wear a mask and don’t be a dick. If you want to read more about the realities behind this story, you can do so here.

PS: although this type of living arrangement is not an immediate reality for me, it likely will be at some point in my future, however distantly. It is nothing to be ashamed of and does not make me any less of a whole human being. Also, to the reader that wanted to know my Starbucks coffee order: I’m more of a hot chocolate gal. xxx

My Body Can’t Take Care of Itself

In all likelihood, nobody that knows me has ever thought about how the inner workings of my daily routine come together. That’s probably because I have the ability to hold (relatively) intelligent conversations, which gives people the impression that I can look after myself. I’m still trying to decide whether or not this is something to be grateful for, in all honesty. On one hand, it allows me to be treated somewhat normally (whatever that means) by those around me, but it also leads to my circumstances being forever misunderstood. I have decided, though, not to spend the rest of my life being defined by other people’s misconceptions and prejudices. So, I’m writing this post to offer some clarity. It might not be possible to hangout in-person right now, but I’m hopeful that by being transparent here, people might be a little more thankful for my presence than before.

So, let’s start at the beginning. I can get myself out of bed, although this is something that I needed assistance with until the age of twenty-one. From there, it’s not possible for me to safely prepare my own breakfast (or any meal). My hands don’t often do what I want them to, especially when I’m trying to focus on something important. When it comes to showering and personal hygiene, my mum has to help me. Yes, this is awkward and uncomfortable for everyone involved, particularly since I have been getting older. She also helps me to get dressed, too. Most of the time, this includes choosing what clothes that I’ll be wearing, given that I’m generally too anxious to make those decisions on my own. Once all of that has been navigated, let’s not forget that I’m not able to reach my desired destination without her taking me there. (Before you say it: yes, I’m aware of the fantastic things that they can do with cars nowadays, but none of it feels practical or safe for me. I have also tried to independently use public transport a handful of times before, which only ever ended up being a nightmare.)

If we have ever eaten lunch or dinner together at a restaurant, please know that I would have spent hours looking at the menu online beforehand, so that I could ensure that there was at least one option available that wouldn’t require me to cut anything up. If you have ever seen me choose to drink something directly from a bottle, it’s because I can’t pour it into a glass myself without spilling it everywhere. Very classy, I know.

It’s such a weird thing to explain. In many ways, it feels like my brain doesn’t function any differently to other people’s. Once the basic self-care has been done, my life isn’t particularly extraordinary: I have the same wants, needs and goals as everybody else. I like to have a social life, in the same way that most other people do. Still, the process of getting there does take a little more consideration. It’s hard not to feel like my job prospects are limited, when there is so much that isn’t immediately obvious from the outside. (Thanks in advance, but I really don’t need any well-meaning suggestions about this.)

To be honest, most days, I just can’t be bothered to put in the extra effort. I find myself growing tired of it. If it wasn’t for the gentle encouragement from my mum, I would probably just never shower again. I’d survive on crisps and takeaways that are easy to manage. Even before the pandemic, I would only leave the house if my friends were very enthusiastic about it. It’s a lot to sign up for, you know? To the people that are willing to try, you are true blessings. It’s more important than you will ever know. One blog post at a time. xxx