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

Let’s Get Political: Inaccessible Workplaces and Why the Welfare System Needs to Do Better

The Government has recently put forward a Green Paper, which highlights the efforts that are now going to be made, aimed at helping disabled people to fully integrate within all areas of society. They are so proud of this, calling it “the most ambitious plan in a generation”, particularly focusing on bridging the employment gap, ensuring that the disabled community are theoretically able to find and keep work more easily. Not only that, but they also placed emphasis on tightening the laws around building accessible housing, too. So, here’s the thing: all of this sounds exciting, right? Some might even argue that it’s progressive. With that said, reaching this point has been so painfully difficult, both locally and globally. For example: just a few days ago, it was announced that the US Paralympic team will be paid the same amount as their Olympic counterparts for the first time ever. Yet, we are expected to be grateful for the bare minimum — the smallest signs of progress —, after consistently being told throughout the pandemic that our voices should remain unheard? Not today, thanks.

When I was in the early years of secondary school, we were once learning to sew as part of a textiles class. I find stuff like this embarrassingly difficult because my fine motor skills leave a lot to be desired, so I had been heavily relying upon help from my Support Worker. I mean, you would think that’s literally what they’re there for, huh? Still, the teacher waited for everyone to leave as the day ended before launching into a speech about how I would never amount to anything if I insisted upon moving forward with a bad attitude and expected other people to do everything for me. She then went on to imply that I was simply too lazy to try, as if she was suddenly the expert in all things Cerebral Palsy, which was an interesting take. I left the room without saying much and she called my mum to apologise before I even arrived home, but the damage had already been done. It’s funny, how quickly you can begin to doubt yourself once this message has been sent your way. Maybe I really wasn’t doing enough. Maybe everyone would get bored of me. Maybe my presence just makes people roll their eyes.

I have many examples like this one, but there’s a lot that this leads into, so I’ll just give one more: when I was later in a wood technology class, I was determined that I could do this independently. I wanted to be seen actively participating, almost as if to prove that I deserved to be there. I remember this distinctly because I was initially allowed to do it independently, after I had been given some gentle direction. I was so genuinely proud of myself, until it was decided that I was being too slow, so the teacher just wordlessly came to finish it for me. Worst of all, he made it took easy. Again, the message was clear: even my best efforts would always hold other people back.

With this, I have always found it hard to settle on a career — or even the idea of one. Do I have enough to offer? Is it actually possible to earn a decent wage on the amount of hours that I’d physically be able to put myself through? How flexible are employers likely to be, really? What would I even be good at, anyway? So many questions. Of course, it’s easy for people to assume that the welfare system is a dreamy alternative, although it’s the opposite. The money that you receive is alarmingly minimal and it’s almost impossible to build up any meaningful savings. I was once told by an assessor that they expect me to only be able to afford a holiday if my parents paid for me, as an example. Of course, that’s without even talking about how deeply invasive and distressing the process is in itself. I was asked to talk at length about all the things my disability prevents me from doing — the very things that I’m constantly pushing to the furthest edges of my mind —, to the point where it made my mum cry. There is no dignity in this.

A screenshot of a Tweet by Kitty Strand, which reads: “it just seems wild to have a minister for disabled people who isn't disabled”.

In summary: we live in a society that equates working with having value, yet are already beginning to scale back on the most accessible remote job opportunities, in light of restrictions being eased. Then, we use this to dehumanise disabled people altogether. Disabled people deserve to live the fullest of lives, no matter what, but employers also need to recognise that we are worth more. It’s really not that hard, okay? It would be nice to be given a chance.

Éowyn, you will forever be my favourite person in the whole world. I still don’t know what I did to deserve you, for the record. xxx