My Disabled Body is Not a Burden, You’re Just a Dick

About two weeks ago, a disabled friend of mine sent me a text, asking if I’d ever navigated the precarious tightrope of feeling like a burden on my family. To be completely honest, the short and painful answer is: every day, without any real explanation. Interestingly, as I write this now, I’m fighting the overwhelming urge to reassure the reader that not everything about my existence is a hassle. Like, I made a list on my phone of all the things that I can do independently, as if that somehow equates to my worth. I mean, why do these details matter so much? I don’t know, but it’s probably some internalised ableism bullshit. As I work through it all, I wanted to allow myself a bit of public vulnerability, in case someone else can relate and is searching for solidarity. So, let’s buckle up.

For context, I am naturally inclined to believe that life is infinitely more fun for everyone else when I’m not invited to participate. The simple yet brutal fact is that existing in a body like this makes everything more complicated, not only for disabled people themselves, but also for those most closely associated with us. In fact, drafts of this post were almost entirely negative, as I became consumed with the idea that I’m not worth the extra effort. I was even ready to give you examples of the ways in which my presence doesn’t sparkle in social situations, validating your decision to not include me. Often, I’m not sure that I deserve it. How sad is that, really? But here’s the thing: disabled people are worthy of a seat at every table. Yes, we might occasionally have to make some noise about it, but so what? We shouldn’t have to limit ourselves just because other people can’t be bothered to make accommodations.

Over the years, I have spent time planning dream weddings with my friend, Kesia. Even during the times when we have both been Very Single. I will always lightheartedly say “I’ll be deeply upset if you choose an inaccessible venue” and she responds every single time with variations of “Danielle, I would simply refuse to get married without you”. What I’m learning, even right now as the words begin to form, is that it’s not difficult at all. I have spent a lifetime surrounded by this idea because so many people don’t care enough to figure it out. Still, that’s their loss.

With this in mind, it feels like a good time to talk about my parents. They have never been given the luxury of deciding whether or not to accommodate their plans, you know? It has been a very direct part of their reality for the past twenty-four years. It’s impossible not to wonder what paths they might have taken differently, if my body had been less reliant on them growing up. For my siblings, also, it has been an undeniably wild ride. As I have gotten older, I have spent a lot of time crying over the idea that they would always feel somewhat responsible for and limited by me, which I would prefer to avoid at all costs. There are parts of these sacrifices that can sometimes be both physically and emotionally exhausting.

A picture of Danielle standing awkwardly from her wheelchair and smiling. She is wearing a burgundy jumper, has short brown hair and wears glasses. In the background, you can see that her bed is messy. There’s also a plant and some weights on the chest of drawers behind her.
Enjoy this picture of me attempting to stand (badly) because it’s empowering to not care what I look like.

There is another side to this that nobody seems to talk about or prepare you for, though. See, having a life of my own finally feels like a genuinely tangible possibility for the future. That’s what falling in love does to people, I suppose. I was always convinced that it would never happen for me. I could only ever envisage getting older in my family home and staying there forever, without reaching any of the usual milestones. I really, truly believed that I was destined to watch from the sidelines. I couldn’t see another alternative, so it eventually became something that everyone else grew comfortable with, too. So, how can my family be expected to process these emotions when my options change so radically beyond anyone’s wildest dreams? What happens to their identities, which have always been centred around whatever I needed? I don’t have the answer to this question, but it’s clear that the transition can be a painful one.

To summarise: if you’re disabled and feel like a burden, please know that this really is a societal problem. You have been conditioned to feel that way by a world refusing to build itself around your needs. Even when you’re surrounded by wonderful people, there will still be moments where this feeling persists. Fight it. You’re worth so much more, I promise. You add value to the lives of others that is beyond your comprehension and they would be lost without you.

Owen, thank-you for always reminding me that coexistence is beautiful, no matter what it looks like. I promise to make space for you in every room. I love you so much. xxx

13 thoughts on “My Disabled Body is Not a Burden, You’re Just a Dick

  1. You’re not destined to watch on the side lines! I don’t know you at all but by reading your blogs you are a beautiful, smart woman. Who’s not afraid to tell someone to eat shit. You have some sass on you and I like it. Your title alone gave me life. Keep doing things your way.

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    1. 😭😭😭 this means more to me than you know. I find it very easy to forget sometimes, so it really does mean a lot. This weird little blog is basically just a space for me to take these thoughts out of my brain instead of sitting with them. I’m so glad and grateful that it resonates with you in some way. Thank-you for adding a little extra light into my life. I have no doubt that many others appreciate it, too 💛

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  2. Oh, Miss Spence, you speak the truth. When I was growing up, my grandma would tell me that she wasn’t sure I could ever live on my own. I was kind of puzzled by that, because I didn’t see what the big deal was. Well, shit. Here we are. I mean, I have to live on my own because of all of my crazy allergies that get more pronounced and greater in number as I get older, but seriously, there was no way of knowing that when I was 11 and sleeping on her couch for another sick day. But I do struggle with the idea of burden. I had to stop driving in 2015. It still bothers me to tell people that I have something at my flat for them, but they have to come and get it. It feels like less of a gift then. And this weekend is a game night, and I know I’m going to have to have someone pick me up and drop me off. Why can’t I just drive my own ass, and carry my own stuff, and have limitless money to spend on flavored liquor and gourmet treats? I’m going to have to be happy with whatever I bring. And you DO deserve happiness, and love, and your own adult space, and to share a bathroom with someone who doesn’t resemble your parents in the slightest. ❤

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    1. Hello, dear friend. I look forward to your comments every time that I post something, truly. Thank-you for always sharing your stories because I really see myself in them and could listen forever without getting bored.

      I feel your pain about being a burden. I’m not sure that I’ll ever 100% heal from that. But here’s what I can say: even just from the words that you write here, you improve my life by at least 10x. I love your sense of humour and I think your energy is fantastic. Like, I wish that I could come up with a better word. But if we knew each other outside of the internet, I’d do whatever I could to make sure we could spend time together. Without question. Because you’re important and these social events are not the same without you. You’re more than enough as you are. I’m proud of you for living on your own, even if it’s not necessarily by choice, it feels like a “fuck you” to the haters every day ❤️

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  3. We absolutely would party down as only people with a list of “I can’t do that, but I can do this” people would. I feel like one of us would end up doing a handstand off of a walker at some point. And no pictures, because those would be used as evidence against us by the government to pull what few pennies we get. So we would just have to be smug together.

    I appreciate your kind words and the fuck yous. For the most part, I think I do prefer to live on my own, even though some very few times I have wished for a significant other. Most of the time I’ve wished for a significant other who lives 2 blocks away, so I can send him home. He would be close enough to show up quickly, but also close enough to send home quickly so I don’t have to deal with his shit or clean up after him.

    It would be great if we could spend time together like real people too. I always worry that I will never make new friends (silly, I know) because I’m just not as social as I used to be. I used to organize pub crawls for 80 people! But I have to remind myself that it’s about quality over quantity, right? You, my dear, are quality. Always.

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    1. The thought of this first part unfolding makes me laugh out loud and I can absolutely guarantee that it would be the best thing to ever happen to me. I have always been quite sheltered and don’t have much life experience, so I would love to hang out with you, in whatever way our bodies will allow.

      Your goals for a significant other are giving me LIFE, let me tell you. But also, you’re a full and complete person as you are. Really. Knowing that human beings like you exist make the world feel a little bit safer. Any man would be LUCKY to have you. You are FIERCE.

      That’s not silly at all, I feel the same way a lot. Being an adult isn’t easy sometimes (okay, all of the time) but I’m only ever a message away. Please know that your words never fail to make my heart grow 10x bigger. I don’t know if I’ve said that before, but it’s true 💚

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      1. Now, let me tell you, men are expensive. I’ve raised so many. Usually by the time they have a clue, I’m tired of their faces and I send them off to finally have successful relationships. The latest is my most recent ex, who is from a Puerto Rican guy from Brooklyn and about 9 cm shorter than me. They always come back (with the exception of 3, and that is a story for another time), and he tried to get back into my good graces too. But he was a cheater and a liar and kissed like he had a dead worm in his face. Like, if he just stuck his tongue out and wiggled it a bit, I would get excited. NO. No, not at all. Stop that! He also borrowed money from me, but for the first time in my life in lending money, he actually paid me back. I still had to tell him there was no chance in hell, but good on him for paying me back.

        I’m getting closer to game night here with friends that I have known for 15 years, but haven’t seen since the pandemic started. Everyone has been kind of weird. I do have to find my own transportation after all. It’s fine. I’m fine. It just means I can leave when I want to/need to.

        So, what are your upcoming adventures? What are your challenges and limitations? Maybe we should have a Zoom about that!

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      2. You know, I have lived a pretty sheltered life up to this point (for many different reasons) and your stories always give me LIFE. I could listen to them endlessly and not get bored. You deserve so much better than the men that have come into and out of your life so far. It sounds to me like they have simply been intimidated by the fact that they are very clearly not good enough for you. May you forever stay sassy because I have decided that you’re my new role model, lmao.

        It must be so lovely to have friends that have stuck around for so long. I’ll be honest and say that I haven’t gotten there yet. I seem to have grown more distant from most of my oldest friends lately, BUT it does feel like I have finally found my people within the last year, which has been incredibly liberating. You’re included in that sentiment, by the way.

        I’m glad that you were able to sort out your own transport. Big yes for independence! I also hope that you win all of the games.

        I don’t have many upcoming adventures! Everything is kind of boring and stagnant. But I am hoping to see my partner at some point in the (relatively) near future, providing that travel restrictions are kind, so that’s keeping me sane in amongst it all. I would truly love to Zoom about everything! Perhaps you can inspire me to actually get out more, hey?

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  4. I’m so sorry, my alerts aren’t coming through like I would like them to, which is to say they should be immediate! Good grief, technology, WTF?? Always a letdown.

    You are very kind about me deserving more/better, etc., but I assure you, I am a pain in the ass too. I’m sure a few of my looks have been mental castration for some. But anyway…

    It’s okay that you have been sheltered, or whatever. That just means you are preparing for some big days. And joy. And my stories are okay, but you are going to be making your own, right? The biggest thing to remember is that you are never in competition with anyone else. Also, give yourself something to look forward to, always. While being shut in for this last year and a half, there were a few things I wanted to learn but never had the time to, even with being a cripple and just going to doctor appointments. So I finally learned how to make wax melts (pretty easy) and I finally started putting together lip balms (also pretty easy). Still, those require a budget. Mine changed drastically just in the past few months so I have to put them on hold. The final frontier? Cooking and baking. I mean, we have to eat, right? So now I’m making gluten free stuff on a budget. I also sing, every day. Harmonize. That’s free. I’m pretty sure my neighbors wish I would give it a rest, but at least I don’t smoke crack. So what would YOU like to do? What have you always wanted to do? What would be doable? And let’s work out a Zoom meeting, and well enough in advance so I don’t miss it because my notifications aren’t working. Grrr.

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    1. Hiya! First of all, please don’t worry about the delayed response. I was planning on publishing a new post today and ended up having to delete it because of technological issues. Ugh. But it has been oddly cathartic to begin writing again, so I don’t mind too much and am hopeful that it won’t take an awful lot of time to make my thoughts sound coherent again.

      Lmao. I think that’s allowed because everyone can be a pain sometimes. I am fond of the term “mental castration”, it’s one that I haven’t heard before and I can confirm that it’s a cool reputation to have. Congratulations!

      Thank-you so much for saying all of that. I honestly don’t know what would be doable. I hate the idea of starting something and then not being able to do it properly, so generally opt to not really bother with hobbies. My mum has tried to get me into gardening recently, something to stop my brain from thinking too many thoughts, though that didn’t really work out. I’m more of an observer instead, I guess.

      I’m around most of the time to Zoom. As long as we can work out the different hours, I’ll be here!

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      1. So, mom hobbies: not always our cup of tea, right? My mom and sister sew. I don’t. They always threaten to get me drunk so I will sew. Nope. Zero appeal. But I am okay with making things just because I want to make them. I still have a painting I painted for a house I owned for a brief period of time (two years). Also, I bought an electric blue recorder because I thought I could probably play a Simon & Garfunkel song on it – and I could! I think it’s time for you to experiment. Found art vs. made art. Paper vs. plastic. Maybe you can collect a certain theme and start there? All doll heads? All doll hands? I was looking recently at friendship bracelets, which were really popular when I was growing up, and people are doing phenomenal things with knotting embroidery floss for wrists. One woman made a city skyline.

        The thing about making these things or learning these skills is that they often lead you to both people and more ideas. Another thing to consider is that nothing has to be perfect. Every artist will tell you that they evolved, and that they were not a master at their first go.

        But then, of course, writing could be your thing! But writing can be very solitary, even as you hit the share/publish button. There is no hurry. But you just need to figure out what feeds your soul.

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      2. Thank-you so much (again). You’re right, as ever. I have a tendency to get so caught up in the idea of perfection that I don’t actually do much at all, lmao. But the whole point of having a hobby is that it’s not supposed to be perfect, right? I’ll have a think and report back to you soon. Maybe this can be my first adventure in itself!

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