Having Ambitions and Managing Expectations as a Disabled Person

My life is not defined by any of the boundaries that society places upon me. My existence is too full and beautifully loud to be squished into any boxes. At least, that’s what I have been trying to tell myself every day. I am slowly learning, however, that the reality is not always so idyllic.

My lovely friend, Elaine, recently sent me a screenshot from a YouGov survey and brought my attention to one question in particular. It asked whether or not the general population thought that disabled people were “too reliant” on the welfare system to support them. When I last wrote about this in detail, I didn’t articulate myself very well, so let me be clear. In these circumstances, any money that people receive is truly the very bare minimum, yet even this is being reduced further in October. I have been trying not to think about it too much, if I’m being completely honest. It’s stressful and makes me feel kind of gross about myself. I mean, this is happening despite warnings from various charities that it’s likely to push millions of vulnerable people into debt. If that doesn’t tell you everything you need to know about how little our lives — and the things that bring us joy — matter, then I don’t know what will. Furthermore, in response to criticism, Boris Johnson has said that people should see their incomes rise by making an effort independently. In case it wasn’t obvious, here’s why this is so ableist: many disabled people can’t work, for a myriad of different health reasons. At best, it’s not always possible for them to manage working full-time. Secondly, many jobs and workplace environments are physically inaccessible. For example: I have been trying really hard to find a job, truly. My body doesn’t allow me to do much that is deemed worthy of being paid for, but I saw an opening at a local library. Working from home would be ideal, but I was willing to give this a try, until I saw that you were required to be capable of manual labour. I was so disheartened — and this is only one example. Not only that, but many positions require some level of experience, which has never been available to me. Lastly, disabled people are consistently paid less than their non-disabled counterparts. It is so unbelievably draining to constantly take an unflinching look at your body and feel like nothing will ever be good enough.

The other day, I went on a walk with my family to the park, as a small celebration of my brother’s engagement. When we were there, someone stared at me, which is fairly standard. These moments affirm that the (dis)proportions of my body are jarring to those around me. That my obvious happiness is shocking, confusing and worthy of a second glance. Interestingly, it also reminded me of a conversation that I had with my physiotherapist during our last session. We were in the middle of doing even more work than before, when I mentioned very casually that I hate doing squats because “I feel like I look silly”. She told me that many of her patients have expressed similar insecurities, particularly around going to the gym. She said “I have massive respect for anyone that knows other people are going to have an opinion about the way that they are able to look after themselves and choose to do it anyway, even when it’s difficult”. The urge to shrink myself and hide away is overwhelming sometimes. There is both comfort and sadness in knowing that I’m not alone in this.

A black and white photo of Danielle using a hoist to stand in physiotherapy. She is wearing a mask but her eyes look happy because she is smiling at the camera. She is holding on for dear life.
I thought about using a hoist for transfers when I was in secondary school, but my brother and his friend walked in unexpectedly when I was trying them out. I was literally dangling in the air. I remember leaving the room in tears because I didn’t want them — or anyone — to see me at my most disabled. The shame was indescribable. Now, I’m willingly posting this picture on the internet. That’s a win for personal growth.

As I was writing this, trying to think about how to wrap things up and make sense of how I’m supposed to move forward from here, my sister came into the room to help me have a shower. I couldn’t figure out how to log out of the web browser, so just quit the page instead. “You’re going to lose all of your work”, she said. Her choice of words hit me with a clarity that had been lost before. Work. This, here, is work. It might not make me any money, but it’s my something. The value that disabled people have cannot be measured by their contribution to traditional definitions of employment. This doesn’t mean that we deserve to live a life that is smaller and less open to adventure.

Éowyn, you make it feel like moving mountains to include me will never be too much hassle. I don’t have enough words in my vocabulary to express how deeply important you are. I love you so much. xxx

4 thoughts on “Having Ambitions and Managing Expectations as a Disabled Person

  1. Oh god, this idea of being “too reliant.” Are you too reliant on the air you breathe? Why don’t polls ever ask us disabled people what we think of non-disabled people? They whine. They throw around terms like PTSD and OCD like they know what they mean and they are appropriate to use, when really, they are deliberately uneducated and just flat out jerks. Spend a few months in our bodies and then come back and talk PTSD.

    My ex, who is so very not smart, has a son who has cystic fibrosis and a list of other conditions. Recently he told me he was “getting better” because he was getting into cooking. I asked him what he meant by “getting better.” He said, you know, not such a mama’s boy. This is where I had to pause and line everything up that needed to be said, and make sure I used small words. So: first of all, a kid born with these diseases isn’t going to “get better” with cooking. You can’t just wish it away. Second, don’t ever say mama’s boy. He’s disabled, he needs assistance performing certain functions, but that in no way makes him some weird crybaby, as was being implied by using that term. (My ex is from Brooklyn and is the personification of toxic masculinity.) My ex said it bothered him that his kid sat down to go to the bathroom. I asked him if his son had sensory issues, and he said yes. So I told him that he probably felt very unsteady and that was his way of making sure that everything went were it needed to. I think it clicked. But Jesus H.

    This whole idea of forcing disabled people to do, or try, work, because we must not be trying hard enough, is just ludicrous. And the whole idea of once we get into the workforce that we should be paid less because we are disabled is infuriating. You have a degree. I have a degree. Should we be punished and paid 70p an hour because we can’t lift 20 kg, or is the whole not being able to work 40 hours a week every week that makes us pond scum?

    My friend from Worcester used to tell me that it was a shame that the U.S. system treated me so badly – and that was when I was still working a corporate job. He would tell me that I needed to find a husband and move over there and be taken care of by your system, which would obviously be much better. But now he is deep in the conservative party, he has started chanting that they are “taking back the country from the liberals” and “only the ones who have worked deserve benefits.”

    Sorry, next time I’ll try to stick with rainbows and puppy dogs.

    Liked by 1 person

    1. As always, thank-you so much for sharing these stories here. I have kind of been going through it with my mental health over the past couple of days, for reasons that I might(???) write about here sometime & I really needed the validation that our conversations always bring.

      Thank-you for never shying away from educating, advocating and all of those things, even when it might be emotionally taxing. I wish that more people were like you, truly. Please remember that you fill the world with so much light 💛

      Liked by 1 person

      1. I am so sorry. Sometimes my dumps of emotional stories happen at the worst times. I hope that you are practicing a lot of self care and keeping a soft cocoon with a bouncy outer shell to get you through, and your Owen is a bright and shining star, of course. You can share whenever you are ready, IF you are ready, and in whatever capacity you are ready. Maybe it’s only a fingernail of the whole picture, and that’s it. That’s okay. Sometimes the internet DOESN’T make us less vulnerable. I still don’t reveal a lot. You are not obligated to please everyone.

        And on that note, I’m sending you some hugs, and some glitter. Or confetti, because maybe it’s less universally hated than glitter.

        Like

      2. First of all, your stories have never been anything other than wonderful reminders that I am not alone, please don’t feel the need to worry about that. I appreciate you a lot, really. It makes me happy to know that we can provide a support system for one another, too.

        I’m already feeling brighter today. Just allowing myself to embrace the fact that some days in this disabled body will be more frustrating than others, you know? I think that oversharing helps me to get outside of my own brain with it all, lmao. Owen has been so loving throughout it all and I feel very blessed by their presence in my life. I feel very safe, even when it seems like everything else is falling apart.

        I am gratefully accepting the hugs, glitter, confetti and anything else sent my way. I am smiling as I write this. I hope that you’re taking care of your health, too!

        Like

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