This is the second version of this essay. It's hard to express a complex lifetime of thoughts on this without veering off topic thanks to sociology-brain + ADHD (which isn't even the subject of this particular piece), constantly crossing wires between personal experience and broader concepts. I hope I make it clear with my choice of words that I am speaking from personal experience that is both abundant (from a timespan of 35+ years) and limited (from the scope of my individual condition), and that every individual story of experiences being disabled teaches its own lesson. Seek out stories other than mine and listen.
I choose to say I’m disabled. People probably don’t believe me when I say that, unless they know me well. A lot of them probably simply don’t care, though I consider that a type of disbelief — like an agnostic who is dismissive of the importance of faith being effectively an atheist. I choose to believe it's not out of resentful malice in most cases; we're just simply kept too busy to follow the details of the people our lives don't largely overlap with, or whose state of being we can overlook in the tasks at hand. Ableism is intended more by the power structures than the individuals holding (passively or actively) ableist beliefs. These power structures are reinforced by people dismissing the reality of disability, with excuses or reasons handed straight to them by the institution of ableism that seeks to downplay the value of diversity and maintain an imbalance in the interest of industry. Nobody should want to be considered disabled, and so when I say that I am, even good intentions rush to tell me that's not the case. There are recycled reasons rehashed to me when discussions come up in everyday life, and I've heard them regularly since entering adulthood.
Reason 1: I have a job. A full time job, even, as much as that wears me out for both regular capitalist reasons and the effort of adapting with my compound of conditions behind my disabilities. People see that, but they don't see all the jobs I've been barred from due to disability, whether due to tasks that are part of the job itself, the structure of society that makes some workplaces geographically inaccessible to umdesirable people, or restrictions based on a fear of liability for something going wrong because society doesn't care about its people enough to provide alternatives. It may indeed be a good idea for me to avoid those jobs, but it is still caked into our economy that I am Less Useful and thus if I lost job security or I complain about being underpaid, it must be my fault and I should "do something" about it.
Reason 2: Since I live in carefully considered conditions, I have merely made different "lifestyle choices" instead of adapting for the sake of survival, and I should accept how that limits me and be satisfied with everything as it is. Physical inaccessibility and constant threats to my life in unsafe conditions are merely consequences of my own decisions, and misfortunes are how the cards are divinely dealt, instead of caked-in marginalizations against disabled people that were placed there by powerful people at some point in the past. Related: I must be doing fine if I'm making life work, right? I'm not destitute (see above).
Reason 3: I'm physically capable! Look at how much I walk. I can hear and see enough to get through the day and not get hit by a car 99% of the time (though in my experience that has more to do with what the driver hears and sees than the pedestrian). I can move my limbs and don't appear to be in constant pain. There's no reason anybody should be concerned about getting in my way.
Three is the magical number where it seems justified to turn something into a list, so let's move on from there before I dive too deep, and talk about disabled experiences, instead of abled excuses.
My disability (that thus far I've declined to divulge) is invisible, until, of course, it's not. On a day to day basis I appear fine (physically speaking), but when I don't appear fine through a public gaze people generally freak out. On some such occasions I even end up in the hospital against my will, out of mistrust of my judgment as an invalid, even when I eventually regain the verbacity beyond swears and apologies to say quite simply, "I'm fine." Neither the people nor paramedics see that in private I just push on through it, sometimes with a laugh or a song or cursing as the backup generator of verbal capacity provides, or a fist fight with furniture (if my furniture had fists) that's rigged by gravity and interrupted equilibrium.
Seizures can happen to anyone at any point, but despite that being a constant possibility, most people go on about their day ignoring it with the subconscious assumption that the odds are on their side. Epilepsy, though, as a diagnosis — that's when the state stops trusting you and tells you what you can and can't do. I was diagnosed with epilepsy at an early enough age that almost everybody in my elementary school knew. Some had seen me have some kind of seizure, or they saw me go to the nurse's office every afternoon to ensure my mid-day dose of drugs was taken exactly halfway through the day; I was not allowed to wait until I could take my medicine at home, and thus it became a piece of public knowledge instead of a private matter of health. This mistrust of my own self-care made it clear to me very early on, as an undiagnosed autistic (another rant, another day) who was uniquely observant, that many essential parts of a proper future would likely be out of my reach. Particularly, the rite of passage of a driver's license, which was necessary to prove that could ever be independent, mature, and redeemed in popularity despite my unpopular size (another another rant, another day), would be closed off to me.
Maybe, maybe if I went a really long time being a good and pure person to the point that nothing bad could possibly happen, I would be able to drive a car one day. But the window of desiring to jump on board the automotive lifestyle we were told to dream about was...well, honestly, never really open. I knew early on, from the same autistic observance with its overanalysis of arbitrary rules, that I wasn't really welcome to do so. The state would always be reluctant to grant me such autonomy due to my disability, as I would need endorsement of the medical establishment to get there. And it's not that I couldn't have gotten that clearance from a doctor; they see driving as a basic need too, just like most people, and I resented in agreeing to hold that as a "goal" for my health.
It's here that my disability blends into my ideology; fuck you and this society built on car ownership. It ruins the planet, manipulates the people through price gouging and fear tactics of why they need bigger and bigger cars; it ruins the financial situations of people with bad luck, and threatens the lives of anybody who needs or wants to eschew it. The culture is toxic. It eats up tax dollars. It takes up space to make alternatives inefficient by design. It skews perspectives to lead people to think it's the way some superior power intended the world to operate from the beginning of time...which is not completely untrue, except instead of a deity immeasurably far in the past, the "superior power" was the automotive lobbies of the mid-20th century who convinced post-war planning to leave us forever dependent upon their resource-hungry industry.
My opinions on this are so strong and multilayered that the inner critic monkeying the opinions of the masses (whether actual people or private interests projecting on their behalf) challenges me with this question: if you agree with the limitations to your lifestyle anyway, is it really a disability anymore?
And I say: yes it fucking is.
I just happen to be conveniently on the right side of history; however, the progress of society is drilling itself into the ground instead of moving in the direction that would reduce the impact my medical condition has.
This is where my mind loses track of my personal story and veers into broader problems. It's a good example of how "disabled" language works better. There is a whole giant discourse on this that is eloquently expressed by other people with much more expertise, but as a short summary: "person-first" language changed the "sensitive" way to describe the disabled as "persons with a disability" instead of "disabled people". Calling someone a "person with a disability" might sound like you're giving them the dignity of personhood (ooh, how lucky of them, to be granted such a privilege from you), but the hidden meaning is it poses the disability is within the individual and simply a fact about them, like they need to demonstrate they have no control over it so society will humour them with minor accommodations. Saying someone is "disabled" leads to the question of "disabled by what?", or more daringly, "disabled by whom?" A surface level answer might be "their medical condition" but it doesn't take many follow-up questions to highlight that it is the structure of the world around them, physical and societal, that disables them. I am disabled more by car-centric society than by an episodic medical condition. That keeps me out of more jobs, limits my social life, and puts me in greater danger than seizures themselves.
That the solution to my disability also happens to be the solution to many unrelated societal problems spins my tangential mind to the subject of curb cutting. The term refers to adjustments based on the needs of disabled people — such as the origins of the term, removing the height difference bewteen sidewalk and road at crossing points so wheelchair users can get by — that end up benefitting everyone. Cut curbs makes it easier for people to push strollers, carts, dollies, skateboards, bikes, or any other wheeled device across a street, and the same can be said for ramps into buildings such as my own, where many wheelchair and scooter users live. I am a hearing person and I use subtitles/closed captioning all the time. Alt text on images in social media often helps me understand the context. Widespread use of masks in public indoor spaces prevents me catching viruses. These things should exist no matter what. While no disabled people should need to use benefits to the abled to justify removing the barriers they face to living their lives, it just also so happens that, in the case of my disability, densely populated and affordable neighbourhoods with plenty of amenities that are well connected through safe pedestrian routes (whether on foot or mobility device) and efficient (and free or nearly free) public transit, accommodate for my own disability as well as improving society as a whole.
Having a medical condition that affects the respect I get means I would continue to be disabled even if this specific problem was solved. But having this strong of the broader benefits of things that would meet my needs gives me a greater perspective of how a better society is a more accessible society, and we need to amplify disabled voices to tell us what is and isn't accessible. Denial of that, whether by minimizing someone's disability or insisting that abled people can lead the way, is quite blatantly oppression. Even if it's not my voice that needs amplification — as is the case on many issues, since the disabled community is vastly diverse on the barriers faced — being disabled myself puts me in a community where I will find and get to know more of these people, who can speak out and teach me along with everyone else.
"Disabled" is not a bad word. It creates a network to become a part of, with millions of people to learn from, and to find more to fight for. I'm not going to give that up because abled people want to ignore a part of me that's shaped who I am. I'm not looking to impress anyone. I'm looking to change the world.