Chronic Illness or Disability – Reading Women 2019

This post is part of a series on reading women 2019 hosted by Lonely Cryptid Media’s Narrative Designer, Dan Michael Fielding.

Responses to chronic illness and disability in U.S. society tend to take two forms. Either disability is 1) rendered invisible or 2) blamed on the individual. Both these responses erase the real lived experiences of disabled people.

I’m a sociologist by trade, and when I teach I try to impart onto my students the idea that disability is a social construction. This doesn’t mean it’s not “real,” of course. There are very real differences in brain chemistry and body composition that can’t be ignored. But disability isn’t inherent to the individual. Rather, it has to do with how we structure our society.

One example of this is how we structure our society to accommodate wheel chair users. You’ve probably seen a curb cut, the small ramp built into a sidewalk that makes it easier for a wheelchair user to get onto and off of the road. Curb cuts also help a number of non-wheelchair users: parents pushing strollers, elderly people with limited range of motion who find high steps difficult, children with short legs, skateboarders, bicyclists, etc. But most importantly they help wheelchair users interact with something that most non-wheelchair users take for granted: sidewalks.

This example shows that there is nothing inherent about using a wheelchair that necessarily means a person should have trouble interacting with society. If we build our society to avoid stairs and privilege ramps then we would be building our society to help wheelchair users interact more fully with the world.

It’s quite possible for us to structure our society to accommodate, rather than exclude, people with disabilities.

When we focus on individuals we ignore that, together, our cultural and societal decisions can have huge impacts on whether or not someone is considered disabled. If 75% of adults use vision correction like glasses and contacts, but we don’t consider people who wear glasses to be “disabled” then that tells us that disability isn’t something intrinsic. It’s a definition we agree upon as a society.

Another quick example and then I’ll get to discussing books: consider a student diagnosed with ADHD. It may be that this student has struggle their whole life to pay attention in class, and it’s only upon getting their diagnoses and receiving medical treatment that they can finally excel in school. This is wonderful for the individual student, but it also means that we are treating the individual rather than the system that caused them to struggle in the first place. We might instead ask why education is centered around sitting and listening, why we ask students to pay attention to things that are uninteresting, or why we demand students avoid pursuing their own interests during structured activities.

The question of social construction is: does disability reside in an individual? Or does it reside in a society that excludes people with certain normal human variations in their bodies and brains?

These questions help show a bit of how disability is socially constructed. I was interested in reading a book on disability for this challenge in part because of the individualizing problem detailed above, but also because of the invisiblizing problem.

We often erase disabled people from our society and our cultural media. Just as we make it difficult for people with disabilities to participate fully in society by demanding they climb stairs or sit in uncomfortable seats to gain knowledge, we also make it difficult to imagine disabled people as the heroes of our stories.

Can you think of a book you’ve read where a disabled protagonist gets to be the hero? What stood out to you about that book?

Disabled authors have been writing about disability and chronic illness for decades, and its high time they got the attention they deserve. After perusing a number of lists online, as well as the Crip Lit Intersectional Syllabus, I finally decided to read On the Edge of Gone by Corinne Duyvis.

On the Edge of Gone tells the story of Denise, an autistic girl facing an oncoming comet impact and certain death for humanity. As I’ve mentioned before I enjoy apocalypse narratives (when done correctly!), and so I’m excited to read Duyvis’s book.

Shoshana Kessock has a wonderful post about disability erasure in the apocalypse narrative, and I do recommend you check it out. Kessock talks about why apocalypse narratives are no longer escapist fantasy for her as a disabled person.

What will you be reading for the prompt this week? Let us know below!

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