Do You Consider Sickle Cell a Disability?
Last updated: January 2023
So apparently December 3rd was International Day of Persons With Disabilities. There really is a day for everything but I had never heard of this day until recently. A lot of people do not think sickle cell is a disability. I mean, I didn’t use to think of myself as disabled. Though I do prefer thinking of it as differently abled. I think a lot of these identifiers become negative as they become medicalized.
Lies we tell ourselves
People are afraid to think of disability as a state of being that could happen to anyone, at any point in time – kind of like a sickle cell crisis. So they prefer to think of it as a condition that just happens to some people but can’t or won’t happen to them. Ha, the lies we tell ourselves in hopes of finding some comfort.
Anyways. I used to think like that too, I guess. That was before I took my first disability studies class. It was a writing class too about the language and works of disability. That class changed my life. It empowered me to reclaim my story by writing about it and it taught me how to write about it in a way that was respectful to me and others living with sickle cell.
Oh yeah, it also helped me understand the negative connotation, or the negative way a word can make you feel, and the history behind disability narratives. And somewhere in all of that, I realized, or rather claimed for myself, that sickle cell is a disability.
Sickle cell can be debilitating
I mean there are so many ways I think sickle cell counts as a disability. Avascular necrosis from everything I have heard about it is most definitely a disability, and that’s just one possible consequence of sickle cell. But just having a pain crisis can be debilitating. When my arm hurts bad enough, I can’t use it. Or if my back/legs hurt too much, I can’t walk.
Yet, sickle cell isn’t readily identified or categorized as a disability. I guess it is kind of like how people don’t classify cancer as a disability even though we all know it is debilitating. It’s all about how we associate the meaning of words – a fun concept for another day.
Reclaiming my disease
I strongly feel that sickle cell should be classified as a disability, and you already know I don’t think it’s a rare disease. It should automatically make anyone who has it eligible for disability benefits because we need them. We deserve them.
I’m glad I was able to reclaim my disease in this way and that I was brave enough to apply for disability services. A lot of them aren’t very applicable to sickle cell, as you can imagine most of the resources are for more visible disabilities and sickle cell is notoriously invisible. But sometimes the resources can be customizable and I think everyone could use some financial/social support when they’re sick.
What do you think, is sickle cell a disability to you? Are you differently abled?
Are you interested in connecting with other sickle cell warriors?