When I was 14, I was diagnosed with an invisible genetic disorder called Ehlers-Danlos Syndrome Hypermobility Type—which causes my joints to dislocate frequently. Because of this I was unable to complete high school, and so I instead opted for a GED.
Then, during my freshman year of college, I was hit by a car and every joint in my hip dislocated. I heard them pop out of place, like falling dominoes, one after the other. Today, I still feel the effects of that accident on my hip, and on my scoliosis-ridden spine.
Living in chronic pain is something I’m used to. It’s so normal that I usually forget to mention it; it’s like having brown hair or being a size-7 shoe.
Learning to talk about my condition has been hard. It can be emotionally distressing, telling people what I’m enduring when I never know how they’ll respond. In high school my friends treated me differently—like I wasn’t a person but a fragile object. So I stopped talking about it for a while.
I have a lot of friends who are also able-passing. They have ADD, ADHD, depression, PTSD, rheumatism, dyslexia, arthritis, deafness in one ear—their disabilities are invisible, as is mine. But disability is still a big part of my life. Getting acupuncture regularly is the only thing that keeps me walking; I wear Spanx to hold myself together, or sometimes I’ll wear assistive braces for my hip and back; on planes, I wear a neck brace.
My friend who has ADD once brought up how often people have told her that she’s faking her disability and that it isn’t real. Sadly, I related—I was told that a lot growing up. Even after I withdrew from high school, my family had a hard time accepting that I was disabled. They didn’t know why I couldn’t attend school or do chores. My teachers at school asked how I could be a dancer but not be able to attend class. It’s a hard question to answer when you’re sixteen, so I would just say nothing. The honest answer is that it’s a choice—one or the other. My body can only handle one, and at age sixteen I chose to do what made me happy.
People still question me and try to invalidate my choices. I’ve been asked, “Why do you spend money on nicer clothes when you can’t keep a job due to your condition?” And I always want to respond, “Because looking nice makes me feel nice, and it’s hard to feel nice when you have to stay inside three days a week.” I’ve been asked, “Why do you sleep so much during the day and only attend night classes? It’s lazy.” And I want to scream, “My body can’t handle being up in the morning and last time I tried going to work in the morning I got picked up by an ambulance.”
Living as an able-passing person is kind of like being a spy. I look healthy, but I’m constantly enduring pain and exhaustion and emotional distress. I’m a superhero for getting out of bed and facing the world every day because the world is not built for people like me. We exist everywhere—you just don’t see us.
Living with a disability isn’t easy. I’ve had to take time off of school, and I can only attend classes part-time. I can’t work a full-time job, and that influences my income and finances. It’s hard to plan for the future because my path is non-traditional, and no one I know has any advice for me because they don’t know what it’s like living inside my body.
When we talk about diversity, or even what it means to be an American, we have to remember that citizenship, health, and human rights are unearned. You didn’t earn your citizenship—it was given to you. You didn’t earn being an American or being born or having an able body—that was done for you. No one is less worthy of a livelihood in the land of the free just because they can’t earn it. People with disabilities are often the target of vitriol and assault just because people seem to think we are less worthy. But we aren’t. We fight tooth and nail to survive in a world that hates us, and what’s more deserving than that?