Disability Pride Month: How redefining independence helped me take pride in my disability
In modern society, having a disability is still inextricably connected to shame, tragedy and sadness. If you think about it, how many people can say “Yes, I am okay with my child being born disabled?”
When a child is born and there is a complication that leads to disability, we often hear what a tragedy it is for the family to endure such a fate. But what happens when you are THE child? Because in my case, that’s what happened, I was IT.
I was born with a condition called tetraplegic spastic cerebral palsy, a condition that is defined by Kirsten Vitrikas as one that has multiple causes which result in brain injury that affects movement, posture, and balance.1
Like many others, after being diagnosed, I got pushed into a labyrinth of various endless therapy sessions such as physical therapy, hydro therapy, equestrian therapy, speech therapy, occupational therapy and other kinds of medical interventions, all designed to address a part of my disability. While I do not minimize the positive effects, all of these had on my development, there is also a slightly more toxic side to them.
One clear message, which I still hear in my head, after all the years spent in these therapies, is – you must be more self-sufficient. The therapists and the doctors, while I’m sure with good intentions, all hammered into me that needing support is inherently negative.
What that led to, was a toxic race between myself and my fellow disabled peers, in which one of us needed less support, saying that those that needed it the least were more worthy, better disabled people than others. In comparison to my able-bodied peers, I always felt inferior, even though I was academically as successful or even more accomplished than them. This message didn’t haunt me only in therapy or school but also in my family circle, which was struggling to find ways to adjust to my condition. Already as a child and all through my upbringing, I often felt the darkness my family carried around because I was different from them. I felt like I was only as worthy as was my ability to beat my disability to the punch, its main goal being to hide the symptoms of my condition.
As a child and a sensitive person, I didn’t know the language nor had the ability to address the issue with my family, so I just repressed all that anger, which I was absorbing from my surroundings. I was ashamed of my disability and talking about it would cause me to have a panic attack so severe that I would need several days to recuperate from it. In my teenage years, I also started suffering from debilitating depression and anxiety, which originated from me wanting to be “normal”. I desperately wanted to finally catch up with my perceived image of a perfect person, which I somehow, despite my success, always fell short of.
In that time, being a perfect person meant having an easier time with friends, being liked by boys and getting positive attention from them (not the negative one I was given). The sentence that I despised most was “You’re pretty, but…” or “You’re smart, but…”. Other versions of the same also included “You’re too pretty to be disabled” or “You’re too skinny to be disabled”. Because I was taught from an early age that I was an incomplete person because of my disability, I thought that sentences such as those were, in fact, completely acceptable.
But now, when I look back, was that pain really mine or was it just a reflection of unrealistic expectations from my environment?
Moreover, the therapists and my family wanted me to have an easier time with my disability and invested so much time into teaching me how to beat it because that was the only way they knew to deal with it. Yet, they didn’t teach me how to love it while still learning to be a fully grown person who just happens to have a disability and must approach life differently. So, I just continued going through life feeling like my disability was an anchor that’s pulling me down instead of an important part of me which deserves to be loved and appreciated.
Years later, when I was going to university and lived on my own in a student dorm with the support of assistants, I still felt envious of all my friends that were more self-sufficient in the traditional sense of the word. Shame continued to be my companion every time I needed help with simple tasks like cooking or even basic bodily functions, because, in my mind, that made me less of an adult.
That was the default situation until I came across a video2 that changed my perspective on independence as a concept, forever. In the video, an activist, Molly Burke, was talking about disabled joy which is defined as a profound happiness and celebration experienced within the disabled community, showcasing resilience and the ability to find joy amidst challenges. It emphasizes inclusivity, equality and the diverse range of triumphs in disabled lives, highlighting the remarkable capacity for fulfillment and beauty.3 Finding beauty in something that has brought me so much pain and had been painted as something inherently terrible that needed to be fixed, was completely unnatural to me. Molly was talking about how she too has always been taught to be independent at all costs and only doing things completely by herself is going to get her praise by society. It was the only way to enter true adulthood. She shared how, with time, she realised that being disabled is a full-time job by itself. This is due to the ableist4 social structure that makes existing as a disabled person that much harder. This revelation forced her to conclude that, in order to live a fulfilled life, she needed to redefine what independence was for her. From that point on, she would independently only do the things that gave her a sense of joy and happiness. She eventually let go of the idea that not being able to accomplish every task by herself makes her a bad, lazy, disabled person.
Learning about her revelation helped me to realise one thing: it is not the disability itself that is sad, it’s the treatment of disability. It’s not the disability that caused me grief and sorrow but the treatment I endured as a person of disability by non-accepting environment that had unattainable expectations of me and my body. All I needed to do, to be content with my reality, was to redefine the world as it was taught to me. Sounds easy, doesn’t it? To me, being self-sufficient means living in an apartment, going to a job that I love and living with the support of multiple assistants that make it possible for me to focus on things that fulfill me and give me a sense of accomplishment.
Today I strive to accept my disability the same way I accept my hair or the colour of my eyes, or the fact that I am also a queer person. In the past, my disability used to cause me frustration and sadness. However, today, I am proud of the fact that I have the courage to be different and do things differently. I aim to turn my frustration of living with a disability into a force that drives me to change society’s perception of disability instead of wanting to change the disability itself. My disability is an invaluable part of my identity, it affects every single aspect of my reality and there is nothing wrong with that. I try to take pride in all the things I can’t do as well as the things I can do. That’s because not being able to do a certain task by myself doesn’t make me less valuable as a friend, partner, lover, a queer person or a member of society taking on other roles as life moves along.
My only regret comes from wishing that my surroundings taught me how to love the disability. I can only imagine how much freer I would have been to explore my identity if only I wasn’t obsessing so much with the fact that people perceive me as different. Sometimes, I still feel anger towards my loved ones for not being more knowing, gentle and accepting, forcing me to come to these realizations on my own instead of being joined on the path of self-discovery by those closest to me. My dream today is to inform and induce change in the ableist society and not in my disability. Disabled people deserve the space to express themselves without the worry of being met with fear or anger when their disability is evident. I am grateful for realising that nothing needs to be fixed because nothing is wrong with me.
Yes, I’m doing just fine as I am.5
Happy (disability) pride month everyone!
Some of us get two of those 😃😃
Neja
1 Cerebral Palsy: An Overview, Kirsten Vitrikas, et. al., American Family Physician, 2020, str. 213-220
2 https://www.youtube.com/watch?v=39QOoiWpwns&ab_channel=MollyBurke
3 Embracing Disabled Joy: Amplifying the Power of Voices, https://www.b-arts.org.uk/embracing-disabled joy-amplifying-the-power-of-voices
4 Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior.
5 This process is much more difficult than it may seem in this essay. It took me years to work through internal and external ableism and I’m still working on it. All I want to say is that it is possible, just take it day by day.