Mobility Aids & Why I Love Them (Even When the World Disagrees)

If you use a wheelchair, or any other kind of mobility aid, people will look at you differently. I have been exposed to this from the earliest age, though it’s not until recently that I stopped to reflect upon why. Here’s what I was able to come up with: the disabled experience is often synonymous with ideas of tragedy or unfulfilled potential. Furthermore, non-disabled people are so caught up in the privilege of having a healthy body, it’s almost impossible for them to imagine being happy if that reality were to change. Spoiler alert: it will change, someday, even if only through old age. That much is inevitable. But still, the idea of not being able to rely upon yourself completely independently is suffocating. I know this because it’s a weight that I have carried for as long as I can remember. The painful understanding that some people will always be confused whenever I smile or laugh, particularly in public. I have heard “I’m kind of glad that you’re disabled because it has taught me to be a better person” more times than I can count. It’s easy to look at mobility aids and assume that they’re a sign of restriction. I believed that, too, for a long while. This year, however, my wheelchair has instead become a sign of hope.

The other day, I decided to be brave and leave the house with my family. This is an increasingly rare occurrence these days, in all honesty, but I really wanted to go to a little Christmas market. Remind myself what it’s like to enjoy being outside and having fun, even when the pandemic continues to make everything feel scary. With that said, when we got there, it quickly became obvious that the environment wasn’t very accessible. Unless, of course, we wanted to make a scene about getting a ramp. I just wasn’t in the mood for that conversation. Is it too much to ask that these accommodations are standard – just for once? As if that wasn’t enough, almost nobody was wearing a mask, anyway. Immediately, I felt uninvited. Looking after my health was twisted into an inconvenience for everyone around me. It must be nice, I thought, to move around the world without always having to wonder if you’ll be safe. For the record, I have said it before, I will say it again: health is not a guarantee. For anyone, at any time, but perhaps especially right now. In response to this situation, I awkwardly waited outside with my dad until we were ready to travel home again. Despite what it may sound like, this was a win for me. If it had happened at another point in my life, I can assure you that I definitely would have cried. I probably would have been quite dramatic about it, too. This time was different. Although the disappointment was crushing, I wasn’t overwhelmed by negative thoughts. Instead, I reached a state of peaceful acceptance. This is just the way things are.

The picture is divided in half by a black line. On the left, a sad looking white kawaii style character with green space buns, a pink jumper, and blue trousers sits in a wheelchair. They are shackled to the chair by chains. Above, in a white bubble are blue words saying “the perception”. The background is a dirty yellow with chain link fence effect. On the right side of the black line is the same character in their wheelchair. This time, there are no chains. Instead they have beautiful purple and yellow wings, and they are smiling. The writing above the character says “the reality” on this side. The background is orange with a slightly lighter overlay of columns of repeating love hearts.
This says it all so much better than I ever could. Follow the artist on Instagram here.

For the past month or so, my mental health has started to (once again) feel a little more wobbly than usual. I should have expected it with the changing of seasons, I guess. But after allowing myself to sit alongside this darkness, I realised something: just because nobody else seems to care, it doesn’t mean that I have to stop caring, too. Disabled people are allowed to expect more than the bare minimum. For whatever reason, I don’t remember much about my childhood. Something that I do remember, though, is the day that I got my first electric wheelchair. I didn’t know it at the time, but this form of mobility aid was about to become an extension of my body. With this, I have autonomy. I can move around the house freely. I don’t have to rely upon anyone else when I’m outside. I make the rules and my limitations are significantly lessened. Even in my manual chair, when it’s more difficult to have control myself, it gives me a sense of participation that would have otherwise been unavailable to me. That will always be a truly beautiful thing. In the most inaccessible spaces, I will no longer regret being visible. Disabled joy is worth fighting for.

If you’re reading this and wondering how to become okay with the presence of mobility aids in your own life: it’s a journey (maybe even a lifelong one) and you’re allowed to take a moment. But know that looking after your body will never be something to hide or feel shame for. You’re still you. Just with a little extra spice. It is radiant.

Zoe, thank-you for (once again) inspiring me to write this. I’m so proud of you. Lexi, thank-you for all of the kind texts. You are an angel. Maybe we could write something together someday. xxx

Learning to Be Okay with Medical Trauma

Friends, a new orthotics consultant referred to my feet as “a deformity” today. Several times. It almost feels like I could just finish the post with this one sentence, hey? Still, I am determined to work through the ugliness of my deepest insecurities here, in a space that continually proves itself to be safe. Let’s start at the beginning, shall we?

The pivotal point in my lack of dedication towards exercise and embracing my disability enough to manage it properly came when I was approximately thirteen. I was beginning to prepare for the possibility of having an operation on my hip, so when my surgeon asked about some background information, I mentioned that I regularly used a stander at home. “What for? Torture? It’s not going to make any difference whatsoever” was his reply, which is something that I have never forgotten. Initially, I was genuinely thrilled by his professional certainty, I’m not going to lie. I mean, it was boring and sometimes painful, so I was willing to accept any excuse not to put myself through that. Pretty quickly, I decided to stop with all of the things that disabled children are supposed to do, including physiotherapy. I couldn’t understand why I should bother taking care of myself in ways that only exaggerated my sense of otherness, if it was ultimately not going to improve my health, you know? For a long time, this approach felt like a Good Thing. If I could function without relying upon these extras, then I was somehow less disabled and therefore living life more fully than anyone had otherwise expected. Little did I know that it would instead take me a whole decade to begin addressing this as internalised ableism.

Aside from the turmoil that I’m going through as I type this: so far, I am having the best year of my life. I am really, truly starting to get my shit together. When I read back through older posts, it’s so clear from my writing, too. For that, I am endlessly proud of myself. However, I have been getting increasingly anxious that this self-improvement has arrived too late, leaving my health set to follow a downwards trajectory from here, no matter what I do. I had been trying to focus on how irrational these thoughts sounded, until today, when I heard: “some of this deformity could have been prevented if you’d had intervention sooner”. Genuine question: what am I supposed to do with that information? It’s not like I can reverse any of the choices that led me here, which means that I just feel guilty about it instead. Fun.

A picture of Danielle with her brother, Jack, from when they were small children. They are in a twin buggy, both wearing sunglasses and blue hats. Danielle is wearing a green jumper with white leggings. Jack is wearing a white top with black stripes and black trousers.
Just a disabled child and her brother wearing funky clothes in the 90s for your enjoyment.

Even before this happened, it’s an issue that I discuss with my physiotherapist often. I suppose that she has become something of a regular therapist, too. But I do get frustrated with my younger self and it’s not always easy to move forward from. When I was growing up as a visibly disabled child, the sense of exposure felt almost violent. I wasn’t represented anywhere by the people that I knew or the environments that I found myself in. I wanted nothing more than to exist quietly and fit into the groups that had always eluded me. Back then, just making it through to the end of every day was difficult enough for my brain to handle, without trying to simultaneously contemplate what my adulthood might look like. Let’s be real: I am living that now and I still don’t have many of the answers.

Since this experience still feels vulnerable on my heart, I’m not entirely sure how to conclude. There is one thing that I’m absolutely certain of, though: the disabled community is not defined by our experiences with shitty medical professionals. In particular, right now, the treatment of Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) needs to be radically overhauled without any further delays. Exercising is harmful when your body is not physically capable or prepared for it — and it turns out that symptoms don’t just magically disappear when you talk about them in therapy. Shocker. Sign the petition for change here. xxx