Pre-emptive warning: This one is aggressive. I could probably use softer words… “emotional”, “passionate”, “expressive”, “reactive”. But I will not.
Having a disability is hard.
I cannot speak for every single person with every single disability. I cannot speak for every single person with epilepsy. Everyone has their own experiences.
Back to point: Having a disability is hard.
For me, it’s hard because I have epilepsy. I have seizures. I have medications. I have to consider these things when I go for a run. I have to consider these things if I take a vacation. I have to consider these things if I get a cold, if I have a drink, if I sleep in, when I take a shower, if I am on public transit, when I go climbing. I’m epileptic when I walk along the beach. I’m epileptic when I go hiking. I’m epileptic when I sit at the kitchen table, drink coffee and write blog posts.
At the same time that I am experiencing all of the things that are associated with epilepsy, I also see a hundred thousand different articles and memes about “how and why attitude affects our health” or “choose positivity”. Sometimes I am the person sharing those articles and memes.
A lot of times, (culturally) worth and value are tied to productivity. I am capable of working and being productive. Whether it’s manual labour or something that requires either of my two post-secondary degrees, I’m capable. In my “disability narrative”, however, I have experienced professional discrimination by being turned down for jobs, being let go from jobs, and by having my ability to do my job called into question without medical substantiation. At the same, I am considered “high-functioning” so am not eligible for financial or medical support. So I’m not disabled enough.
I’m disabled, but not disabled enough. Schrodinger’s Epileptic.
My medications cost me over a thousand dollars a month, but because they are prescribed as anti-convulsants and not other purposes, they don’t count for coverage.
I don’t have a driver’s license, and despite where my medical appointments are, it is assumed I can pay for a taxi or that public transit goes there.
Unless I savagely injure my face, people feel free to joke that I just wanted an extra day off, because unless witnessed, you can’t “prove” a seizure. Following times that I have violently injured myself during a seizure, I was told that I was prettier before it happened, when I had all my natural teeth and fewer scars. So unless I injure myself somewhere visible, it’s not believed. When I do injure myself visibly, I’m informed that I am now less attractive.
I take care of myself. I try to take care of my mental health, I try to take care of my physical health, I try to take care of my spiritual health. I try to build new relationships while growing pre-existing friendships. I try to learn new skills and maintain old ones. All of these things have costs though, whether time, money, energy. That is money on top of medication costs. That is time on top of public transit time. That is energy on top of facing microaggressions and/or overt hostility.
We deserve better. I don’t usually like the word “deserve”. It kind of falls into the category of “expectation” and “entitlement” to me, but maybe it’s just the context I am used to hearing it in. “Deserve”.
The reality is that there are things people deserve. To be treated like people. Basic human respect. The bar shouldn’t be set so low that we think that a person being a decent human being to another human being deserves a gold star.
As a person with my disability and the personal history I have, it is very easy for me to believe that I deserve less. It is very easy for me to think that a situation that isn’t even meeting the lowest bar is the best I can hope for. I had a previous career in where I loved the job and the work, but I faced discrimination and bullying. I thought it was the best I could anticipate. My productivity there did not make me valuable or safe.
Having moved, having relocated significantly, it’s a completely different circumstance. Co-workers are aware of my condition, and have asked what to do in the case of emergency. I’ve shown up to work with the brand new scar I have over my eye, and I’ve been asked if I am okay, not informed that “I was prettier before”. I’ve still been invited out for events, I’ve still been invited for social opportunities. I have some running goals for the next couple years and when I spoke with my coworkers about them, they listened and had enthusiastic, supportive comments.
Having a disability is hard and it is something that each person has to come to terms with. Sometimes though, seeing, realizing, witnessing, experiencing other people and their support can go a long way to help.