I hate that term, “high-functioning.” It sets up a dichotomy between people like me and those defaulted “low-functioning” disabled people that paints a very negative picture of disability as a whole. I’m a “good cripple,” because I work, I take care of my basic needs. They’re “bad cripples” because they can’t get out of bed or need people to care for them. But hey, I was like that for a while. There was a solid chunk of my life where the biggest accomplishment of my day was moving the 20 feet between my bed and my couch so I could marathon Battlestar Galactica and cry in agony and dejection. I was no less of a person then, no less deserving of respect, than I am now.
I work really fucking hard now, and I make no secret of it. I’m a special education teacher, a job that I took on in August 2015. It’s been a wild first year, and I’ve learned a lot about myself as I’ve navigated my first full-time job since becoming severely disabled. A lot of what I’ve learned hasn’t been about the job itself, but rather about myself and my ability to navigate it. So here are some of my dirty little secrets about being a full-time worker, full-time crip:
1. It’s not a choice. And if I had the choice, I’d make a different one. Working this job is taxing for the healthiest among us; for me, it sucks up virtually all of my spoons. I don’t work because I just woke up and decided a job would be a nice way to pass the time, I work because I have bills that need paid, a child that needs supported, and a home I’d really like to stay living in. Could I have chosen an easier job? Yeah, and that’s where choice comes in. But I figured if I was going to exhaust myself, I wanted to do it making a difference in the world. I may only have the spoons to be an “armchair activist,” but goddammit if I don’t enter my school building five days a week and advocate for the education of the dozens of students with disabilities who I teach.
Still, would I rather spend my days gently dolling out my energies on household tasks and family obligations? Of course! I can only dream of having the energy to take my kid to the park on a regular basis, keeping nightly dinners cooked, and maybe running the vacuum now and then. Instead I sacrifice all the things I’d like to have to afford all those things we need to have. Rent > pot roast.
2. I’m not always proud of myself. Sometimes I feel like Wonder Woman, not gonna lie. But more than occasionally, working makes me feel like a failure. It’s my failure to prioritize other aspects of my life, my failure to properly take care of myself, my failure to admit my own limitations. It’s also hard to feel like a success when I’m constantly questioning my own ability to get up and do it all over again in the morning. I’d be lying if I said I never took a day off just because I woke up crying, in too much pain and too overwhelmed to face the day. These are the days when I question my entire existence. These are the days when I feel worthless.
3. I’m not really that tough. I put on faces at work. Now don’t get me wrong, I’m not what I’d consider a “fake” person–I’m a legitimately bubbly, happy person (somehow). But the face of confidence? The face of competence? And dear god, the face of not being in constant, agonizing pain? Total and complete bullshit. I’ve had coworkers comment on me to each other, saying things like, “She must not really need that cane, she moves so quickly.” This is because of that tough face I put on, the one that just keeps on smiling after something subluxates, that laughs when I get syncope. I’m pretty sure I’ve got my whole school convinced I’m just this side of “normal.” And it’s so far from the truth, I can’t even begin to have the patience to educate them all.
4. My household suffers. The dishes have been piled in my sink for a week. I haven’t folded laundry in two months. I haven’t cooked anything but Tuna Helper in weeks. I can barely see my bedroom floor. My computer desk looks like a landfill. There are tumbleweeds of pet hair blowing around my living room. I could go on, but you probably get the point. All the things I’d like to keep up on, I simply don’t have the energy for. Once all those spoons are gone, there’s no getting them back. I’d love to pretend I live in a sparkling abode that constantly smells of fresh-baked cookies and apple pie, but I’m happy if I can keep everyone who lives here alive and able to shower and sleep in relative cleanliness. It’s an accomplishment.
5. My personal life suffers. I wish I lived a life of Friday Happy Hours and Sunday brunches, but even if that was in my budget, it’s just not doable for me. The most I can really manage is having people to my place for game night, and even that is really a matter of making my housemates issue invites. I do not have the energy to pursue friends for anything, because my anxiety demands social events that are planned and set, and that takes a level of preparation and pursuit that I simply can’t manage. Luckily, I happen to live with those people I love most in the world, so I still manage to feel relatively fulfilled. But still, when I do decide to go out, and the energy expenditure knocks me on my ass, I am starkly reminded of my limitations.
6. My off-time is one giant nap. I wish this was an exaggeration, but it really isn’t. When I get home from work, I nap for 1-2 hours. I go to bed at 9:30, and on the weekends sleep until 10. Saturdays and Sundays I’ll squeeze in a 2-4 hour nap. When at my most desperate, I have pushed desks together and napped during my planning period at work. It is all I can do to stay awake from 7:15am to 2:45pm every day, and I make up for it hardcore the second my butt hits that couch.
7. It still hurts. All the time. This will always bear repeating, because goddammit people need to remember it. Circulating the classroom doesn’t mean my knees aren’t grinding. Walking quickly between classes doesn’t mean my hips aren’t subluxating. Managing effective conversations doesn’t mean I’m not silently getting syncope at my desk. Getting my paperwork filed doesn’t mean I’m having a good day. And dear god, absolutely none of my “high-functioning” behaviors mean I’m not a goddamn cripple.
We need to dismantle and reject the idea of the “good cripple,” the one who meets social standards by living in spite of their disability rather than in tandem with it. I do not live a successful life in spite of my disability, and my life is not successful because of those “normal” activities I manage to accomplish. My success exists in waking up every day in the broken body I’ve been given and still loving. Maybe not loving every minute detail of life, maybe not loving my pain, maybe not loving my situation, but loving delicious foods, and sincere hugs, and the warm glow of sunshine. My success doesn’t come from a paycheck; it comes from doing the best with what life has given me, regardless of my functionality.
If I wake up tomorrow and can’t ever go to work again, I am still a good person. No one’s level of ability dictates their worth.