Reflecting on my Disabled Childhood

Today marks nine years since I had surgery on my left hip, pinning it into place. At the same time, I also had at least one other minor procedure, to loosen the tightness in my hamstrings. In truth, my memory of this time is a little hazy, though I can piece together flashes. Mostly about the pain and throwing up when I was given morphine. I have tried really hard to redirect my brain’s focus over the years, to think about something else whenever June approaches, although this has so far been impossible. The two (incredibly neat) scars on my legs are a daily reminder of how different everything would have been if I was born into another body, you know? Often, this is also visually represented to me through the lives of my non-disabled siblings, too. In a first draft of this post, the next lines were: I find myself craving an adult experience that isn’t dictated by my dependence on those around me, even now. I can imagine that it must be so wildly liberating, despite the fact that everyone else gets to make these choices without a second thought. However, whilst I might never be completely comfortable with the permanence of my situation, it’s important to recognise that different is not always synonymous with better. Things have been intense since this fateful day in 2012, sure, but I’m not going to be defined by my experiences. For the first time in probably forever, I am genuinely and consistently happy. I am slowly learning to be proud of my disability. The heaviness that used to sit on my chest has largely disappeared. I feel lighter. I have come so very far, which is why it’s necessary to look back on occasions like this one.

I wasn’t a nice person when I was fifteen — or really any time before that. Not really. It would be so easy to blame the system for its lack of support, but I do have to hold myself accountable. For a long time, even from a fairly young age, I was more mentally unwell than I’d like to admit. If the help had been offered to me, I doubt very much that I would have accepted it. It’s so hard to explain what it’s like to give up on yourself, without really trying in the first place. I couldn’t be bothered with any of it, I guess. I was convinced that my life would amount to nothing, no matter what I did. I was angry all of the time and I put my family through a lot, which I plan to write about in more detail next month. Some of the memories still make me feel physically sick, though.

I hated my time in hospital. More than that, I have some heavy trauma associated with my recovery, which isn’t something that I’ll ever go into detail about here. When this unfolded, I decided that I had to protect the softness of my heart and be unapologetically good, despite how cruel life can sometimes be. I am so proud of my adult self, truly. I’m always trying to make other people’s lives brighter, which is something that I am relatively successful at. I think. You tell me.

Still, with that said, I hate my legs and it would be a lie to pretend otherwise. I have a new physiotherapist these days and when we first met, she asked if she could take my shoes and socks off. I said, “you can if you want, but my feet are really ugly”. She replied, “I don’t think that anybody has pretty feet, Danielle”. I could have cried on the spot. Last week, she asked me to wear shorts, for practical reasons. I cried about this when I put them on. Like, I cried in the most ugly way that my mum later came home with a pair of jogging bottoms to stop me from feeling gross about leaving the house. It’s a process and we can only do our best with these things.

A screenshot of a Tweet by maya circe, which reads “i think we need to move away from the idea within body positivity/neutrality circles that bodies are worthy of love and respect bc they “work.” disabled bodies dont always “work.” disabled bodies are still worthy of love and respect, no matter if they “work” or not”
I’m leaving this reminder here for myself and anyone else who’s in need of it.

So, to recap: I survived! I am happier than I have ever been. I wish that I could tell my younger self. Not every day is perfect, but I am better able to handle the waves without drowning. That’s something worth celebrating.

Owen, you used to live inside of my dreams before we met, I’m sure. I’m not scared of the future anymore, because you’re here. I love you more with each day that passes, which is both clichéd yet true, so I don’t care. xxx

The Shame of Being a Disabled Person

Since childhood, I have carried around a sense of shame about being disabled. Alongside that, I have also been disappointed in myself for having those feelings. It’s impossible to watch the Paralympics (with all of these disabled athletes living their best lives) and not feel like I should be doing more. It’s impossible not to feel like I should be happier and more comfortable with my apparent adversity. All of this was true, until I had a recent realisation:

The pressure to feel better is directly related to allowing others to be more comfortable — to create a space where they don’t perceive me to be living a life that is wasted. Of course, this type of attitude is one that I wish could be removed from society completely, but there is some truth to it. Sometimes, pretending otherwise can be tiring, especially when it only serves to allow people not to feel so awkward when staring at me in the street. Like, it’s apparent from my previous posts here that there are some aspects of my life that have been halted or made more difficult by disability, but happiness is not made nonexistent by such a reality. It is possible to find a weird sense of harmony between the two, which I wish could be more widely understood.

For example: in about February of this year, before the pandemic hit in earnest, I went to Starbucks with my cousin and family. We were happily gossiping about the trails and tribulations of our dating lives at the time, when a stranger approached us and handed me a leaflet. He said that he couldn’t imagine how unbearable my circumstances must be, but that he was willing to help me find “a life without wheels”, through the power of prayer. I’m a loser and hate confrontation, so I politely thanked him and headed into the nearest bathroom to cry. At the time, I had been really struggling with my body image and generally didn’t feel great about myself, so the whole thing was very bad timing. For me, perhaps the saddest part of this interaction was that I’d been having a genuinely nice day, until that moment. I had been laughing in the seconds before he spoke to me, yet he was entirely focused on highlighting the glaringly obvious negativities.

When drafting this post, I had initially wrote: to be honest, I wish that he had been right. I mean, imagine if fixing everything really was that simple. But let’s unpack that idea, in hopes of demonstrating how damaging these well-meaning gestures can be. Firstly, there is no cure for Cerebral Palsy, so taking away my wheelchair would truly be no life at all, even when I do struggle to accept my dependence on it. Secondly, isn’t it heartbreaking that one conversation can leave me feeling so broken? Especially when it probably wasn’t at all significant to the other party.

Moving forward, I will strive to live without shame. Your misplaced guilt and pity is not my problem, so I can promise that I’ll be fine without your prayers. This body is mine, for better or worse. Sometimes, that can be a beautiful thing. Please allow me to try and outweigh the bad with the good throughout 2021. Already, this blog has received more overwhelming love and support than I ever could have hoped for. It has brought a certain strength to my friendships, both old and new. Maybe — just maybe — I’ll never hide in a bathroom again. Let that be my New Year’s Resolution, okay? One blog post at a time. xxx

PS: as promised, here’s a shoutout to my brother, Jack. He wants me to remind everyone that he is, in fact, Carer of the Year. Not really, but still.

If you have a question that you have always felt weird about asking directly, hit me up on CuriousCat! Yay for anonymity. I’m all about that education and will do a post on it in January, if there’s anything. https://curiouscat.qa/Disabled_Danielle97