When I was an infant, my mother accidentally dropped me into a dam. A near drowning scarred my brain, and I’ve dealt with intractable epilepsy ever since. There have been years of challenges and weeks of self-pity, but I have always readjusted my weight to compensate so that I wouldn’t fall over.
For the last decade, I’ve dealt with an array of medication side effects that were almost fatal. In April 2015, I started recovering from a year of being bedridden. It was utter hell. These days, when my illness is well controlled, I still don’t get to go a week without seeing a doctor of some description. Being poked, prodded, and assessed for terrifying surgeries is not my idea of a good time.
When I use the words ‘chronic illness’, it’s because I know what that means. I know what it means because I live it every single day.
I’ve written at length about ableism because I live that, too. It’s often been harder to cope with than the illness itself: cognitive problems are hardly the kind of thing people tend to be tolerant of. They’re okay with my having seizures, but the cognitive consequences? I don’t get a lot of understanding on that score.
Ableism is maligning someone for not being as able as you are. It’s not overt discrimination that screams at you and tells you exactly what it is. It doesn’t always come from a community, or even a group—it takes only a few individuals to isolate you if they work at it for long enough.
Ableism does not shut a door that prevents someone from entering an environment. It rips out a person’s figurative eyes so that they lose the ability to see themselves realistically—it makes it impossible for them to walk through that, or any other, door until they’ve fixed what was broken.
The world has largely been kind to me. Strangers have been compassionate when I’ve had seizures in the streets. They have picked me up, taken me for treatment, driven me home, and compensated for me during partial seizures when they didn’t know what was happening. The only cruelty I’ve experienced around my epilepsy has come from those who knew me—people who felt comfortable enough to mock and shame me because they were on the outskirts of my friendship circle. They have felt they had special rights to pick apart my personality on the basis of a scar on my brain.
I’ve always readjusted my weight to compensate for my illness, but the self-doubt that comes with ableism, the ‘I can’t exist properly in this community because there is something wrong with me’ makes me fall all the time.
“Be kind, for everyone you meet is fighting a battle you know nothing about.’” –Wendy Mass