by Wendy Caster
My friends keep telling me I should go on disability. Granted, I’ve been sick and largely unable to work for over a year, but am I disabled?
When I look at that sentence, I feel like laughing at myself. After all, isn’t “sick and largely unable to work” the definition of disabled? But it’s not that simple.
Backstory: I was diagnosed with a mean uterine cancer in April of 2016. The usual next steps followed—surgery, chemo, radiation—but they were particularly aggressive versions of each step. Just as you fight fire with fire, you fight mean with mean. As of this writing, I am cancer-free, but the treatment beat the shit out of me. I have lymphedema of my left leg, so it is swollen and heavy and uncomfortable. I am wearing a series of Velcro wraps, hip to toes, which make the leg heavier and uncomfortable-er. I have anemia, which may be getting better, but I’m still tired. I have insomnia, so it’s difficult to tell if my lethargy is caused by the anemia or lack of good sleep. I may or may not be bleeding internally. (A capsule endoscopy should clarify that, but I’m experiencing some health insurance challenges, so I’m not sure when that will happen.) The area of my left hip and then down my leg often hurts. When it does hurt, it’s bad enough to make walking difficult or even impossible. It doesn’t seem to be related to the lymphedema. Sometimes it feels like it might be sciatica, but then sometimes its quality and location change.
Most importantly, I have lost the ability to maintain focus. Last year I had to return a freelance project undone, which was humiliating, even though the client was lovely about it.
I have good days, but I haven’t had enough in a row to commit to a job or even a short-term project. I’ve missed many social events, given up theater tickets, and so on. My world has gotten smaller.
So, am I disabled?
As I’ve gone through this process over the past months, I’ve come to see that it’s a two-level question. (1) Am I unable to make a living? (2) Am I willing to accept the label of being a disabled person?
The answer to the first question is pretty clear. I cannot make a living. The answer to the second question is trickier, but it’s important. And it reminds me of my coming-out process.
When I came out as gay in 1977, embracing a label was more than a personal decision. It was deeply political. It would affect how people viewed me. It would eventually lose me a job. It would occasionally put me in danger. But--and this is an important but--choosing to accept that label helped me change the world. Over the next decades, many people would improve their view of homosexuality and homosexuals merely because they knew me. My openness was a cure for bigotry and misperceptions. Multiply me by the millions of other openly gay people, and you have same-sex marriage, gays in the military, and other significant political advances. I was and am only one drop in the ocean that advanced gay rights, but I’m proud to be that drop.
During my coming-out process, I had to let go of my own misperceptions to learn what it really meant to be gay. Right now, I’m working on my disability-related misperceptions.
These misperceptions are more emotional than factual. I wonder, am I disabled enough? (Would my embracing the label be disrespectful to people in wheelchairs?) I wonder, will I be a different person if I’m disabled?
Years ago I worked on Mainstream: The Magazine for the Able Disabled. The managing editor often spoke of people’s reluctance to accept the word disabled. He would talk about people he knew who used hearing aids, who walked with a cane, who missed work due to various illnesses, but who would never use that word about themselves. Why did it matter to him? Because the disability community had (and has) insufficient political rights, resources, and protections, because it was (and is) misunderstood, because it needed (and needs) an ocean of support to make necessary progress.
Hey, that sounds like the whole gay thing, no?
The more I think about this, and I think about this a lot, I realize that there’s a whole ‘nother factor in operation here: my father. (See, it’s not always about the mother.) When I was a kid, I was only sick when my father said I was sick. I could feel terrible, but if he didn’t believe me or if he thought I wasn’t sick enough or if he was just in a bad mood, off to school I was sent. I internalized this to a ridiculous extent (I mean, that was decades ago), and I’m still not quite able to judge my own level of illness. Or disability.
My friends are right. I can’t work, I cancel appointments, I frequently feel pretty rotten. In a real, official sense, I am disabled. So here I am, 40 years later, coming out again.
After I wrote all those words above, I sent an email to my oncologist that ended with, “In order for me to apply for disability, I would need a letter saying that I'm too sick to work and/or I have a diagnosis with a less-than-positive prognosis. Would you be able to write such a letter for me?” She wrote back, “I absolutely support your need to go on disability.” And I went into an immediate depression.
My main tool for dealing with the past 15 months has been denial. When I’m not actively feeling bad or doing something health-related, I don’t focus on my situation (or, at least I didn’t until the disability thing came up). Even though I am a researching sort of a person, I didn’t do much research. It just upset me. And even though I completely believe in support groups, I didn’t go to one. I didn’t want to spend that time totally focused on my health, or lack thereof. But my doctor’s note fucked with my denial. “Oh shit,” I thought, “I’m disabled!” And I felt incredibly bad and sad. That’s the power of words. I was no sicker than I was before I read the email. I was in no more pain. I was no more disabled. But the words hit me hard. Luckily, the sadness didn’t last too long.
I guess this is a process. The coming out continues.
Wendy Caster is an award-winning writer. She lives in New York City.