Today I’m coming out as a cripple. I’m not talking about acknowledgement of physical impairment but about claiming identity as a crip.
In some ways this decision follows the same pattern as calling myself dyke (at age 19, many years after I understood I liked girls, several years after I started having sex) and naming myself a writer (years after I started selling fiction). There is a world of difference between being physically impaired and claiming crip. When I say I’m claiming crip it means it’s time for me to talk about disability as a political and relational issue. (Disabled is a relative term; its meaning is not fixed. Cultural ideals of normalcy vary from place to place, time to time, and culture to culture.) For me disability is not a medical problem. My impairment is not the problem. Cultural attitudes and built environments are the problem.
In 1993 I was diagnosed with MS; I’ve never hidden its physical effects.1 I’ve been publicly using a cane, then double crutches, for nearly 20 years; last time I was Guest of Honour at a convention I used a power chair; the bio on my latest novel is clear about the fact that I have MS. I have also regarded my MS and its consequences as a tedious, time-consuming thing Over There, separate from my real life. My illness, I reasoned, was a personal difficulty that took a lot of bandwidth to mitigate; why give it any more attention than necessary?
I came to think of this stance as the Small Dog Theory of illness: keep the irritating, yappy little hairball fed and watered and it won’t annoy you as much.
The Small Dog Theory is a load of rubbish.
As I become less physically able—as I start using a wheelchair sometimes, as I prepare to buy a car with the express purpose of converting it to hand controls—I find that my cripness is assuming greater heft. Being a cripple is taking up more and more space. It does not and cannot exist separately from my life. Every time I want to go out for coffee, or a beer, or dinner, every time I’m asked to speak somewhere I’m faced with attitudinal and environmental obstacles. I have to spend an inordinate amount of time and energy asking questions and explaining.
I begin, of course, with whether or not the venue provides step-free access. Oh, yes, I’m generally assured. So then I have to make sure that the hosts or organisers understand what that means. Most know enough to work out that if there’s a flight of steps up to the entrance, the venue is not accessible. (Though you’d be surprised at how many think two or three steps is the same as zero steps.) Many people don’t think beyond that. I’ve lost count, for example, of the number of bookshops that have no bathroom on the main floor—and no elevator. Yet the managers still call their store accessible. You want me to speak at your conference from a stage or raised platform? Great. How do I get up there? And when I get there will there be an adjustable-height microphone and a chair (because I can’t stand for an hour)? Will there also be a small table (because if I’m not standing I can’t use the podium)? How far away is parking? How far is it from the entrance to the table/stage/counter? Importantly, are there automatic doors?
Frankly, doors are the bane of my life. In most restaurants, bars, and hotels, for example, public bathrooms have massive, spring-loaded slabs for outer doors. (Why? To keep muscular germs away from the unsuspecting public?) These doors are physically impossible to open while using double crutches or a wheelchair. They are also hard for small children and those accompanied by small children; they’re difficult for the elderly, for those with painful joints, anyone in a cast… (The list is almost endless.)
Take a moment. Imagine how it feels to be an adult and have to ask help to get in and out of the fucking bathroom.
Inaccessible bathrooms are not a problem I should have to solve; they are a problem of the built environment, of urban planning, of economics, and of political awareness and will.2 I’m tired of that. So today I’m making a conscious choice to begin to talk about political issues relating to disability.
Would I rather not be a cripple? Yes. I’d love to run again. I’d love to go for a walk. I’d love to even be able to carry my own pint from the bar to the table or plate from the buffet. I’d love to just show up at a bookshop in the carefree knowledge that I can access everything I need. I’d love to be able to get in and out of any cab, car, train, plane, or boat without constantly checking on its specs or whether the driver knows to drop me/pick me up right outside the entrance. None of that will happen; there is no cure for MS. But there is a cure for ableism.
The world has to change. We all need to start helping the world to change—to learn to think about access issues and attitudes. Because it’s unjust for those with the least access to political power to always be the ones to think about it. And, as studies have shown, it’s allies who make diversity happen, not those who are discriminated against.
I’ll give you one example of what needs to change: the Washington State Democratic Caucus. This is my first presidential election as a US citizen. I wanted to find out how to make my voice heard despite the fact that I couldn’t attend in person. It was not easy. I had to email the local party three times before I got a response on how to do it. Most voters probably wouldn’t bother.
Caucuses attract those who are:
- Able-bodied (mobility, sight, hearing—how many ASL interpreters do you suppose they had standing/sitting by just in case?)
- Time-rich (those with the leisure to spend several hours of a precious Saturday afternoon in non life-maintenance tasks, like rich people, or students—how many minimum wage earners, how many single mothers, how many carers of the sick and elderly can get there?)
- Socially at ease (how many agoraphobics, or those on the autism spectrum, or with social anxieties?)
- Politically educated (I’ve talked to a few people who didn’t even know what a caucus was, or how to find out where to go)
- Etc. (This list, too, is almost endless…)
Is this the epitome of democracy? No. There are too many barriers to entry. Voting should be easy, as close to friction-free as humanly possible. For that reason caucuses, in my opinion, should be discontinued in favour of primaries using postal ballots.
As I say, that’s just one example of the kind of thing that’s now on my radar. I’ll be exploring further what it means to be disabled in this culture. I may explore in person, on this blog, in essays, or in my fiction. I’m not sure yet.
To mark the occasion of claiming crip, on Friday May 13th I’m doing an event with artist Riva Lehrer3 at the Pacific & Western Disability Studies Symposium, at the University of Washington, Seattle. This year’s Symposium is subtitled Making Disability Public: Art, Scholarship, and Activism. It seems apt.
I’ll talk more about that event in a week or two. For now, save the date.
1 I’ve talked on this blog about the etiology of MS; I have a page on this website dedicated to what I need if you want me to come to your convention/bookshop/school. I’ve found that no matter how superficially appealing hiding the truth can seem, it ends up a waste of everyone’s time and energy. And it’s damaging. I learnt that by the time I could decide anything for myself. Perhaps one day I’ll write another post—it will be long—about all the different coming outs of my life so far. But today is not that day.
2 Don’t even get me started on gendered bathrooms. Idiotic, discriminatory, and occasionally quite literally deadly.
3 Riva created MIRROR SHARDS: NICOLA/SNOW LEOPARD, a portrait of me. Here’s a post about the process—though that’s not the whole story. I’ll be talking about it at the symposium.