How working in disability advocacy helped me feel disability pride
Issy Orosz now wears the word disabled as a badge of honour. But it wasn’t always that way. For Inform, Issy writes about how working in disability advocacy helped them feel disability pride.
I have always been a hypocrite. Decided that self-love was so important, yet constantly debilitated by my own self-hate. Whilst I am glad I didn’t let my own struggles alter my perception of others, it was incredibly hard to have such juxtaposed values for myself and everyone else. This disparity was especially noticeable for me relating to disability.
I am a disabled person with a number of developmental, psychosocial and chronic pain related disabilities. Being disabled is a big part of who I am and my identity. But it took a long time before that was something I was able to not just accept but realise was deserving of love.
A recent connection
My connection to and engagement with the disability community has only been recent. I timidly joined some disability focused Facebook groups and followed more activists on social media early last year. In late 2019, during a rare surge of confidence, I applied for a job at a disability advocacy service, fully expecting to get a polite rejection and move on with my day. But that’s not what happened.
I didn’t have any qualifications working or studying disability, beyond my own lived experience as a disabled person. So getting the job felt incredibly strange. And at first like a trick. I told myself it was an error and awaited an apology email explaining the mistake, to which I would reply to with understanding. I told myself that not only was I not capable enough of a person to be doing the job they hired me for, but I was also not disabled enough to use my lived experience in the role. But as I signed the contracts, had a first date set and met my boss and colleagues, it started to feel more real.
It took a while to even feel comfortable with myself in the job, with imposter syndrome making itself at home. The hardest part came, when a program we had been revamping was done and ready to be delivered to disabled young people, by me. I didn’t feel qualified as a workshop facilitator. But more so as someone with enough expertise about disability to communicate with the participants about it.
Why disability pride matters
The final topic we wrote into these workshops was about disability pride. It was something I had helped craft the content for, yet I felt incredibly disconnected from it. It felt ironic, that someone as insecure about my disabilities as I was, would be talking about how important it was to be proud of that part of life to other disabled people. I was conveniently saved by the bell that was COVID-19, as the pandemic stopped workshop delivery entirely just days before the disability pride session was scheduled.
Since then, I have been doing a lot more things within the disability space. Each time dipping my toe into the wonderful world of advocacy and activism. Yet, each time I got a new responsibility at work, I would again question my inadequacies. I realised which tasks and opportunities were the easiest for me, the ones where I was advocating for the disability community at large or communicating struggles for disabled people in a way that felt separate from myself. It was in these actions that I began to feel more comfortable and knowledgeable about disability. Yet I felt incredibly overwhelmed if I thought that I was filling space with my own experiences.
It got to a point where I was perhaps as hypocritical as I had ever been. I felt so confident in calling out failures of systems for my fellow disabled people and calling for changes that I knew would make a difference. But that was always in conjunction with my internal voice, who was telling me that it wasn’t for me, that I didn’t deserve to be advocated for. I felt like an ally, not a member of the community.
Making disability pride personal
It took the deterioration of my conditions and supports to a point where I almost couldn’t function, to realise that not only did I need someone speaking for me and my experiences, but that if I couldn’t be that someone, then I was right that I wasn’t qualified to be doing the work I was doing. So, I slowly began to change my mindset. It was often as simple as using words like ‘us’ and ‘we’ when talking about the community. Making it personal, and allowing myself to be angry, passionate and energised for fighting for myself made me a much better advocate for the community as a whole.
What I was feeling and saying felt alive, fired up and empowered. My activism became far more authentic and as such, more powerful. For perhaps the first time, I felt as if what I was doing actually mattered, and that I mattered too.
I now wear the word disabled as a badge of honour. Something I feel so lucky to have. Something that I will continue to feel empowered by, to do good by. Whilst I still feel wobbly and self-conscious every day, this time it is because I want to do right by myself and the rest of my community. And not because of the internalised ableism that hindered me previously. Advocating for others taught me how to advocate for myself.
Issy Orosz is a 17-year-old queer, disabled person who works in the disability and youth sector with fellow disabled young people. They are currently completing year 12 with the goal of studying arts at university in the coming years. They like to write about different aspects of their life whether in formal or poetic styles, about things such as disability and their other identities.