The Best Intentions

Almost a year ago, I promoted a short story of mine, “Patient Zero”, on Twitter. Unfortunately, the description I included with it drew the ire of another user, who took offense to the fact that the imaginary disease used in the story, Fibrodysplasia Ossificans Aggresiva, was modeled after but did not completely align with the real condition Fibrodysplasia Ossificans Progressiva. The person, who claimed to have Fibrodysplasia Ossificans Progressiva, called the story ableist. It is not clear whether they actually read the story beyond the warning I included at the beginning about depictions of hate crimes for the purpose of critiquing racism in the United States (which they used to say that the story was also racist). I naturally tried to defend my story while keeping an open mind, but in the end, they blocked me—and the encounter has slipped in and out of mind ever since.

I don’t know if I handled the situation well. From my side, I was horrified by the thought that something I wrote was ableist. After all, even though it was a horror story, I wrote it in such a way that I tried to depict the disabled person’s humanity and plight. The discrepancies between Fibrodysplasia Ossificans Aggresiva and Fibrodysplasia Ossificans Progressiva were due to them being two different diseases, the former being one that the world in the story still did not know much about. I did not see this as spreading misinformation about Fibrodysplasia Ossificans Progressiva because they were related but different diseases. The monster of the story did not have Fibrodysplasia Ossificans Aggresiva, so I didn’t see any problem there, either. So, I tried to explain to the other Twitter user that it was a different disease and that I had used it to show the difficulties the character was going through as the disease progressed. They called this defense “doubling down”.

I know that not all of what I said was right. I shouldn’t have mentioned my own disabilities—scoliosis and migraine—as though that would excuse ablism towards anyone else. I also realized that maybe readers would mix Fibrodysplasia Ossificans Aggresiva with Fibrodysplasia Ossificans Progressiva, so I placed another disclaimer at the beginning of the story to let them know that the fictional condition has nothing to do with the real one and provide a link to information on the real condition. However, I still find myself wrestling with the idea of whether this story is ableist. I’ve talked with others who have told me that it isn’t, but none of them have Fibrodysplasia Ossificans Progressiva. The idea gnaws at me, and yet, I can’t get myself to take it down.

Why?

Why can’t I take down something that might be ableist?

As selfish as this sounds, the primary reason is that I’m particularly proud of that story. It’s the first story of mine to have made it into an anthology—Darkness Wired, published by Notch Publishing House—and I happen to think it’s a good story. I think it makes some good observations about society. I want to share it with the world.

Another reason is that, as painful as it is for me, it might be a good thing for people to discuss whether it’s ableist or not. Is it ableist to put a condition like this into a horror story? Is it ableist to create a condition that is like an existing condition but with notable differences, especially since that could lead to the reader mistakenly thinking that the real condition works differently than it does? Is it ableist to write about such conditions at all if you don’t have personal experience with them? The criticism might hurt me personally, but these are important questions to ask. If my story can facilitate them, even if it’s as a horrible warning, then it should stay up.

For more of my stories, check out my Vocal profile.