Tangled in the Invisibility Cloak
Presentation for the Queer Disability 2002 conference, June 2002.
Cal Montgomery – ckmont@aol.com
[Moody] muttered, “Nice cloak, Potter.”
Harry stared at him in amazement….
“Can your eye — I mean, can you –?”
“Yeah, it can see through Invisibility Cloaks,” Moody said quietly. “And it’s come in useful at times, I can tell you.”
An earlier (and probably mercifully, shorter) piece I wrote on the problem of “invisible disability” is available from Ragged Edge at http://www.ragged-edge-mag.com/0301/0301ft1.htm
One day — so the story goes — Jane went to the Post Office to buy stamps.
But when she got there, she found a flight of stairs out in front that her wheelchair couldn’t climb. Jane looked to her left, and she looked to her right, and there was no ramp, and there was no lift. So she started around the building, looking for a way inside.
On the north side of the Post Office was a door marked “Employees Only,” but there was another set of stairs blocking the way. Jane looked to her left, and she looked to her right, and there was no ramp, and there was no lift. So she kept on going.
At the back of the Post Office was a loading dock for the trucks that carry the mail. At the far end of the dock was a flight of stairs. Jane looked to her left, and she looked to her right, and there was no ramp, and there was no lift. So she kept on going.
On the south side of the Post Office was a door marked “Emergency Exit Only,” and another flight of stairs. Jane looked to her left, and she looked to her right, and there was no ramp, and there was no lift. So she kept on going.
And by the time she got all the way around to the stairs at the front of the building again, she knew what she’d find: there was no ramp, and there was no lift, and there was no way for her to get into the building.
So Jane waited at the bottom of the flight of stairs until Ian came by.
“Can you help me?” she asked. “Can you go up there and ask the postmaster to come out and talk to me?”
Ian went on up and came back with the postmaster.
“Look,” said Jane. “I’m here to buy stamps, but I can’t get into the building. There are stairs at every door. Why don’t you have a ramp so people like me can come in and buy stamps?”
“We don’t need a ramp at this Post Office,” said the postmaster. “Nobody who needs a ramp ever comes in.”
All joking aside, here is what the United States Postal Service has to say about access. I’m printing this page out for the next time I try to get into my local Post Office. http://www.usps.com/common/docs/508pol.htm
I’m sure a lot of you have heard that joke before. I’ve heard it many times from many people who are pushing for better access to the physical spaces in which so much of the business of our society is conducted.
It illustrates a central problem of invisibility: when you don’t have access, the people who can give you access tend not to notice that you don’t have access, and so they don’t see the need to provide access, and so you don’t get access.
Barriers tend to be a lot easier to recognize from one side than from the other: for every bunch of people looking up and trying to figure out how to break through a glass ceiling, there’s another bunch of people looking down and genuinely wondering how come none of them just come on up.
A couple of quick questions….
How many of you think that this conference is accessible?
Now, how many think it’s inaccessible?
Events and locations and communities are accessible to specific people, for specific purposes. If I say something is “accessible” or “inaccessible,” without specifying to whom and for what, I’m speaking nonsense.
Of course, it’s not usually recognized as nonsense, because we’ve come to a common understanding about the to whom and the for what. When speakers leave them out, listeners fill in the blanks, and pretty much everyone knows that asking “Is this building accessible?” won’t help you find out whether there’s a TTY in the lobby.
We fill in the blanks so automatically that many of us have come to believe that access is a matter of ramps and lifts, period.
A great deal of disability rights struggle has focused on architectural barriers and transit barriers, the idea being that if you can’t get to a space and then get into it, you don’t have access to whatever is inside. Which is true … but getting through the door isn’t everybody’s biggest problem.
When we use the word “accessible” as shorthand for “in a location wheelchair users can get into,” we’re allowing an understanding of what access means — and therefore of what functions as a barrier — that includes only a minority of disabled people. An understanding of “cross-disability access” that means “both Quickie and Invacare” doesn’t even begin to cover it.
So let’s leave not-there-to-be-seen invisibility to one side for the moment, and take a look at what it means to be invisible when someone’s looking right at you.
Given the name of this conference, I assume that everyone here today knows something about this kind of invisibility whether or not we’re identified as invisibly disabled. We all know something about invisible queerness; we all know something about flaunting, passing, and the closet.
How many times have you heard someone say something like, “Well, if we all just turned bright pink they’d realize that we’re everywhere?”
Myself, I doubt that having all the queer people turn bright pink would do a whole lot beyond convincing the ever-clueless to run out and buy stock in sunscreen companies.
But there’s a plausibility to the idea that if people discovered that many of the neighbors and classmates and coworkers they like and respect and get along with just fine were queer they’d be less likely to assume that they can’t possibly like or respect or even get along with queer people. And wouldn’t that be cool?
Many queers celebrate visibility at pride events; others have visibility thrust upon them through outing.
On the other hand, there are some people who’ll justify everything from eye-rolling to outright assault on the grounds of their targets’ visibility. Flaunting, they call it. From this point of view, if only all queer people were invisible it’d be better for everybody.
Many queers retreat into invisibility and the closet; others have invisibility demanded of them by don’t-ask-don’t-tell policies.
I have experienced both a desire to be better camouflaged and a desire to cast off intentional and inadvertent disguises and scream, “This is who I am!”
I was ten the first time someone identified me as a precocious drag queen — trust me, this was not the effect my mom was going for when she made me wear a skirt that day — and twelve the first time I got gaybashed, even though I had to learn what “Lezzie, lezzie, lezzie!” meant before I understood why I was targeted. I liked the recognition that skirts just don’t work for me; I didn’t like the bruises.
I’ve worn shirts that proclaimed “DYKE”; and I’ve stayed silent when people suggest various men I could try dating. I’ve tried to turn myself into the kind of person who doesn’t end up in the back ward of an institution somewhere; and I’ve tried to help make the world into a place where back wards don’t even exist.
All of us here know something about invisibility.
A couple of quick questions….
How many of you think that you are visibly disabled?
Now, how many think you’re invisibly disabled?
My roommate, who is straight, enjoys playing the computer game The Sims. This is a game where you play with a household of up to eight characters at a time, trying to help them advance their careers, earn money to buy things they want, make friends, and so on.
I go into her game sometimes and build houses and families on vacant lots to see what my she’ll do with them. Two of the things she does with them are to break up all my same-sex couples and to get as many Sims as possible into traditional boy-girl relationships.
One time, I asked her why she’d broken up a couple of males and had one of them seduce a female. She was shocked. “I didn’t know they were a couple!”
When she started with these guys, it was night in the game and they were sleeping in the same bed. After they woke up and started chatting with each other, little hearts popped into the sky over their heads. And on the “Relationships” screen, they liked one another 100% plus a heart.
In The Sims, this is as serious a romantic relationship as you can possibly have and it’s all right there on the screen. But to my roommate, the relationship was completely invisible, obscured by assumptions about Sim sexuality.
Here is a fact about invisibility: what can be seen depends on who’s looking, what they’re looking for, and whether they’re looking in the right place. Just as it’s nonsense to talk about accessibility without some idea of to whom and for what, it’s nonsense to talk about invisibility without some idea of to whom and in what context.
Remember Jane at the Post Office? Visible, right?
But although there are a variety of definitions of “disability” floating around out there, I am aware of none in which a wheelchair is a disability. A wheelchair is a tool. But the reason people think Jane has a visible disability is that she has a visible wheelchair. In fact the identification of visible tool with visible disability is so strong that I suspect that every night when Jane gets into bed her disability magically becomes invisible.
Unfortunately, I have not yet convinced a single wheelchair user to let me bring research subjects into their bedroom at night to test my hypothesis.
I don’t believe that there is any such thing as invisible disability. For that matter, I don’t believe in visible disability, apparent disability, or non-apparent disability.
(Yeah, I can’t believe they let me on this panel either.)
On the other hand I do believe that there is something that is often called “invisible disability”, and I’m struggling to find the right vocabulary to talk about it. This week, I’m calling it “unrecognized disability”. At least “unrecognized”, unlike “non-apparent” or “invisible” or the loathsome “hidden” seems to suggest that seeing or recognizing disability is something that somebody does. Visibility and invisibility are not inherent properties of disability.
But enough about recognition. Let’s take a look at disability. Two distinct approaches to disability need to be distinguished.
The first approach treats disability as individual. Disabilities are things that individuals either have or don’t, and we can carve up all of humanity, past, present, and future, into people with disabilities on the one hand and people without disabilities on the other. If you’ve ever wandered into a conversation about retroactively diagnosing dead people — anyone seen “Jesus was autistic”? — you’ve seen this carving-up firsthand.
Moreover, people’s disabilities often prevent them from fully participating in society — but we can help them either by fixing their disabilities or by giving them special benefits to balance special burdens.
The other approach treats disability as social. People differ from one another in a variety of ways, and societies enable some and disable others in a variety of different ways. Disability is what is done to you when the way that your society is organized serves as a barrier to your full participation, and what disabled people need is the societal support nondisabled people take for granted.
For more information about the social-model approach to disability, check out the Centre for Disability Studies at Leeds University in the U.K.: http://www.leeds.ac.uk/disability-studies/
It’s not always easy, in practice, to distinguish between these approaches. If your school gives you a notetaker, is that because expectations that everybody can simultaneously attend to the lecture and write stuff down disable you, or is it because we should all be nice to the notetaking-impaired?
There is a kind of television news story that illustrates the way recognition plays out in the context of an individual understanding disability. Reporters use hidden cameras to “catch” a person who claims to have a disability doing something they shouldn’t be able to do. These stories are based on an assumption that TV reporters and their audiences are capable, based on a 10-second video clip, of accurately recognizing who does or does not have a disability, or at least a particular kind or degree of disability.
Moreover, because accommodations are treated as special handouts for a limited number of people with disabilities, people who are shown not to have disabilities are criticized for diverting benefits from the people who really deserve them. As a result of these news stories, people may be stripped of both disability labels and disability benefits.
On an individual account of disability, Jane at the Post Office is a person with a visible disability, at least until ABC’s John Stossel does a “Give Me a Break!” story revealing that she wiggles her own toes.
For an interesting example of the way visibility is used, you might want to check out the 1992 movie Bob Roberts. There are a whole lot of things about this movie that I really like. Its use of disability just happens not to be one of them. http://us.imdb.com/Title?0103850
Using an individual model of disability, we understand unrecognized and overrecognized disability as problems of misclassification.
We therefore address the problem by trying to classify people better.
People with disabilities are mistaken for people without disabilities?
At the official level we might hand out hangtags and placards and photo IDs and certification letters. We may organize education programs to help people recognize the subtle signs of various disabilities, or to convince the public that particular individuals are innocent victims not responsible for their own problems.
At an informal level we might very pointedly address people with disabilities in baby talk and hope everyone else takes the hint.
People without disabilities are mistaken for people with disabilities?
At the official level we may institute policies requiring that people with disabilities submit proof of disability to cut down on fraud. We may organize public education campaigns to help people recognize the subtle signs of sneakery and encourage the unmasking of fakers.
At a very informal level we might gossip about which of our acquaintances are only pretending to have disabilities.
One effect of all these solutions is to increase the authority of those with the power to judge which kind of person each of us is and what benefits each of us deserves. And since our society right here, right now, tends to treat disability as not merely an individual problem but an individual medical problem, many people with disabilities are forced into complicated relationships with medical authorities who wield tremendous power to help expand our horizons and tremendous power to help constrict them.
The other view of disability regards disabled people as a category of people who, in one way or another, are excluded from the rough-and-tumble world, and who therefore need access. This is the view of the British social model theorists, and a good definition of “disability” in this tradition is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers.
The very first move in the British social model approach is to distinguish impairment — which has to do with the ways human beings differ from one another — from disability — which has to do with the different ways people are enabled and disabled by society, and to explicitly deny that impairment causes disability.
For more information about the social-model approach to disability, check out the Centre for Disability Studies at Leeds University in the U.K.: http://www.leeds.ac.uk/disability-studies/
On this account, we don’t need to be compensated for our unenviable position in society. We need to be released from it.
I am coming to loathe the word “accommodation”, because it is so often interpreted as “benefit” or “handout”. Nondisabled people are enabled or accommodated as a matter of course; but the word “accommodation” is rarely used in that context — instead, it’s used to signal special treatment for special people. I’d rather talk about “barrier removal”; it allows me to respond to complaints about the high cost of accommodation by reiterating that if barriers don’t go up, they don’t have to come down.
(It isn’t always clear beforehand that one thing or another will function as a barrier to full participation, and therefore we’ll never be able sit back on our heels and say, “There. The barrier removal’s all done.” But all too often, we erect a barrier when we should know better, and then turn around and complain about the cost and effort involved in solving the problems it creates.)
Using a social understanding of disability, unrecognized disability is a matter of unrecognized barriers.
Jane at the Post Office is readily recognized as disabled: the fact that the stairs present a barrier to wheelchair users is something almost everyone grasps. When I’ve told the “nobody who needs a ramp comes in here” joke to people who’ve never heard the phrase “disability rights”, they laugh.
But Jane may also be disabled in a more or less unrecognized way. There may be other barriers besides the stairs that would prevent her from buying stamps even if she had a way into the Post Office. Maybe there’s a substance to which she has a life-threatening allergy in there. Maybe there’s a strobing light that will trigger a seizure.
I am disabled by both recognized and unrecognized barriers.
There is, for example, the fact that my stair-climbing days are over. The barriers I run into when my participation requires that I get into a space that’s up or down a set of stairs can be addressed in a variety of ways. Lifts. Ramps. Moving things to another place. But if I am going to have access, barriers to the physical space and thus to whatever’s inside have to be addressed somehow.
Then there’s the fact that I miss a lot of information about what’s going on around me. I cannot, for example, recognize people by looking at their faces. I can see faces, but what other people see as tiny changes make the whole thing look completely different to me.
In order to participate in most group activities, I need to be able to identify at least some of the other people involved, so the common assumption that visible faces mean giving access to identity often gives rise to a barrier.
There are a number of ways to address that barrier. People can wear nametags. Or they can repeatedly tell me who they are. Or if it’s a small number of familiar people in a clear context, I can use things like voices and accents and ways of moving to make educated guesses — I can usually identify the characters on my favorite TV shows even though any one of the actors could talk to me for an hour and a half without me guessing who it was. Or a special person-recognizer could be hired. Or we could develop a group norm where it’s okay to say, “Now, which one is Jane again?”
But in my experience other people are unlikely to cooperate with any of these measures. Many people don’t like to wear nametags; many people repeatedly forget to identify themselves or decide it’s my responsibility to recognize them; many people don’t like to be asked for help.
So I end up negotiating the removal of the same barriers in the same situations with the same people over and over again — or I fail, or I just give up. The idea that if I negotiate access with you now I shouldn’t need to do it again in half an hour seems ridiculous: we’re talking about invisible barriers, and if a barrier is invisible, how can I expect anyone to learn to see it?
When I say that there is no such thing as invisible disability, I am saying that no disabling barriers should be accepted as inevitable. People who don’t recognize them today can learn to recognize them tomorrow. If we don’t have a solution right now, we need to keep on looking. Those of us working for disability rights need to expect that of ourselves and one another. We need to work together to improve access for each of us and for all of us, not just for those people and those barriers who have already won recognition.
Thank you for your time.