For years, I laughed at the inept people at the beginning of late-night informercials — people who always seemed comically incapable of performing simple everyday functions like making food, or carrying groceries, or reaching items on high shelves. Compilations of informercial ineptitude like this one are all over the internet:
But then I read an essay which pointed out an obvious truth that I never bothered to see: the products in most of these infomercials are intended to make life easier for disabled people. But because popular culture traditionally averts its eyes from disabled people, production companies hire able-bodied actors to demonstrate why these products are necessary. They look ridiculous because they're pantomiming everyday life for millions of disabled Americans, but they're not disabled. It's an act of erasure that stops being funny when you realize the truth behind the scenes.
Last night, the Reading Through It Book Club gathered at Third Place Books Seward Park to discuss Seattle author Leah Lakshmi Piepzna-Samarasinha's book Care Work: Dreaming Disability Justice. It's a collection of essays by and for disabled people, with the ambitious goal of promoting a society operating under an agenda of "radical love" that is more inclusive and caring.
The conversation was lively and surprising. I admitted that no other book in our book club's two-and-a-half years has ever moved me to tears so often. The vulnerability and frustration in these pages is visceral, perhaps most so in a letter anarchist/performer Loree Erickson posted online before visiting Washington DC. Keep in mind, this letter is intended for strangers:
I use a wheelchair and I am looking to recruit folks to help with my personal care needs (fancy words for getting into/out of bed and going to the bathroom). No experience needed (I am really good at talking folks through it plus what I need help with is pretty straight forward) and ya only have to be sorta buff. I [weigh] around 130lbs, but it is not as bad as it seems. If you're worried about lifting I might be able to buddy you up or maybe you can buddy yourself up with a friend. Two people makes it way easier and yay for safety! :-) It doesn't take that long (around 1 hour — usually less to pee and a bit more to get into/outta bed). I usually pee at 12ish, 5ish and then when I get into bed and wake up. If you don't have a lot of time, even one shift would be so extremely helpful.
If you are interested let me know or if you know anyone else who might be interested, please send this their way (I appreciate people of all genders helping me). I need to know as soon as possible so that I know how stressed out to be. Plus we are coming soo soon! :) Also if you can send me your availability that would be amazing
The warmth and openness and optimism of that open letter broke me wide open.
The idea of disability encompasses so many different experiences — blindness, Deafness, paralysis, chronic pain. Each of these experiences brings its own demands and limitations and truths — there's no single "disability agenda" that can be encapsulated in a single manifesto.
Many members of our book club felt overwhelmed by Care Work. That's understandable — the book is a collection of essays intended for a few different audiences — in one piece, Piepzna-Samarasinha is talking directly to other disabled activists, in another she's aimed at a more general audience. Someone at the book club said that Care Work was the equivalent of taking a 301-level course without taking the 101-level first.
But just about everyone agreed that exposure to these ideas was important. More than half of the group had direct and personal experience with disabled people in their lives, and those experiences helped them to see the world differently. That visibility matters.
I'm still thinking about something a member of the group said last night that I found to be particularly enlightening. She said that architects no longer design buildings with special features for disabled users. Instead, they aim for what they call "universal design." The accessibility of those features — ramps, easy-to-open doors and convenient storage and so on — actually benefit everyone. This isn't a debate that anyone has to lose. Accessible and caring design is additive — it's good for all. The same additive law applies to Piepzna-Samarasinha's radical caring agenda: when you orient your civilization to care for people in need of help, everyone benefits.