Drop The Ableist Catnip
I'm Dawn Marie Gibson and I'm an ableist, and you probably are too. My activism and disability pride don't provide reliable protection against harboring culturally installed ableist perspectives. Most North Americans are raised to idealize conquering individualist heroes. These American gods don't need help or naps, they're too busy overcoming life's obstacles through the power of hard work and unrelenting positive thinking. Do you detect the ableism?
Ableism is a pervasive bias that values "normal" bodies and the people inside them over the comparatively less capable or more complicated. Normal bodies are meant to function independently, almost without needs. They exert effort, and receive a just reward for their virtuous performance. The flip-side is that complicated folks don't measure up. Their undisguised needs are messy burdens that they should keep trying to overcome through grit and determination.
Why does ableism matter?
Ableism feels normal or intuitive because we grow up with it. The simplistic explanations draw us in like catnip. It's based on value judgements about human beings and the social power to carry them out. This means that disabled people trying to live their lives are stigmatized, interrogated, or excluded. In extreme cases, ableism can get people killed. Here are some examples.
Ableism conflates diagnosis, ability, or perceived actions with character flaws or slurs.
"That's so bipolar!"
"Are you blind?"
"She already had HIV, does this really matter?"
Ableism implies that adaptive equipment or other accommodations are open for scrutiny, debate, or commentary.
"You don't really need to use that, do you?"
"You're so lucky that we have ramps."
"I could never live like that."
Ableism expects the disabled to absorb toxic or hostile behavior, telling them to take what they can get.
"I just had to check. everybody wants to be special these days."
"We can't let everybody preboard. Somebody has to wait in line."
Karen and my dinner from hell
Painsomnia and a virtually continuous flare put me in rough shape throughout 2012, the first year after my mother died. One day, my aunt talked me into going to our favorite diner where I ordered a reuben (no bread), fries, and soda. The Karen folk villain moniker wasn't yet circulating, but our server fit the description.
She was hostile when I requested a straw and extra napkins to protect my hands from the cold drinking glass. She got loud and confrontational when my aunt cut my rueben for me, demanding to know what we were doing. My aunt explained that I have arthritis and needed help. Nothing satisfied Karen. She kept staring at me like something she scraped off her shoe. Her humiliation was devastating.
Defeating ableism is a good cause, but it's not your job unless you choose it. I've chosen to fight back by representing us in society. My work is basic, like Periodic Table of Elements basic. I believe that sharing our experiences with disability and caregiving changes things. This leads to normalization and acceptance, reducing shame, stigma, alienation, and other consequences of ableism.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?