Who Wins in a War of Attrition? Not the Warrior.

It’s time to re-evaluate calling disabled & chronically ill folk “warriors”.

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Liminality in Disability

I have fibromyalgia, which means I experience daily widespread body pain and fatigue of varying intensity. These primary symptoms are accompanied by difficulties with concentration, memory, reasoning, and decision making — the faculties that comprise what neuropsychologists call “executive function”. I experience itching, tingling, numbness, shocking pains, stiffness and weakness in my limbs, difficulty swallowing, and problems with balance. I also experience difficulties with digestion and disturbed sleep. Like other chronically ill people, I also have a laundry list of other conditions to go with it, but fibro imposes the most on my life. It’s debilitating and I am disabled by it.

Warrior mindset — or not?

Warrior rhetoric is poisonous because it reinforces the primacy of able-bodied functioning and creates social pressure for the disabled and chronically ill to perform good health, the unfortunate consequence of which is that it implicitly calls into question the notion of disability at all. It’s a Catch 22. If you can overcome this, are you really disabled? Do you really deserve the accommodations you demand?

Sanity or sanitization?

Six months ago, my condition reached an intractable peak. What medications seemed to help initially I quickly became resistant to. I was going to the hospital every three weeks for biologic therapy and I was slowly showing signs of developing resistance to even that last resort drug. I couldn’t sit, I couldn’t stand, exercise, wear clothes, carry a grocery basket, put any kind of pressure on my body without it swelling to the point of agony. My face, mouth, and tongue would swell up with disfiguring wheals that made me fear that I would suffocate in the night.

Acceptance and compassion

Fundamentally, the problem is that for able-bodied people to engage meaningfully with disability, it will require emotional labor on both sides of the equation. I shouldn’t be required to show abled people the ugliest, most intensely vulnerable parts of myself in order to be respected or to have my needs considered. I don’t want to record my worst bed-ridden moments for the world to dispassionately dissect in the hopes that someone might see the human under the rictus of pain. And yet I am confronted by the reality that it may be one of the only ways forward.

I’m a biological anthropologist and educator living in Seattle, WA. Sometimes, I write.