Ann and Marcos both work in the same office building, but not in the same office. Ann sees her co-worker, Joan, on a daily basis. Joan says hello to Ann in the morning, sits at her desk, does her job, speaks politely to people throughout the day when needed, and seems just like every other worker in the building.
When Marcos goes on his lunch break, he walks through a park, where he sees a woman every day. She is often crouched on the ground and lining up sticks in particular patterns. Sometimes she lies on her back and flicks objects in front of her eyes. He sees the same woman while he is walking home sometimes. Her hands are moving a mile a minute in unusual patterns while she repeats the same words over and over. He has tried to say hello to her, but she doesn’t respond.
Ann does not see Joan’s legs moving around constantly under the desk, or her right hand constantly gripping or twiddling something, also under the desk. She does not see that when Joan goes into the bathroom, she’s not actually using the toilet, but practically collapsing in exhaustion before going through a frantic series of movements and activities that she’s been suppressing all day, all carefully timed so that she doesn’t appear to be spending too much time in there. She does not see that much of the time when Joan doesn’t talk, it’s not because she is just busy working, but because she actually can’t talk any more than the demands of the day already put on her. She actually has a very limited ability to speak and uses it for the very few verbal exchanges required in her job, which she performs flawlessly, but which she could not perform many more of before speech would break down entirely. She does not see where Joan goes on her lunch hours, and she does not see what Joan looks like as she is walking home, because she lives in a different part of town than Joan and drives rather than walks.
Marcos does not see Joan at work. He does not see that she competently performs the duties of a secretary all day when she is not at lunch or walking home. He does not see her recognizing the existence of other people, nor does he see her speaking in an intelligible or communicative way. He does not see her sitting quietly at a desk doing her job.
But if Ann and Marcos are like most people, they think they know pretty much all there is to know about Joan’s life.
Ann thinks that Joan is a standard-issue, non-disabled person, maybe a little nervous or quiet but not overly so, and assumes that she is capable of a number of things throughout the day that Ann never actually sees her doing, but just imagines over the top of Joan.
Marcos thinks that Joan is “crazy”, “retarded”, or “autistic”. He assumes that she probably doesn’t have a job, he might not even think she has a home at all, and if she does, he imagines that she probably lives in a group home.
Ann is stunned to find out that Joan is autistic and does not believe her. She says that Joan is clearly capable of all sorts of things she’s never actually seen Joan do (but is utterly sure that since Joan does a certain limited number of other things throughout the day, then Joan can do them all day long and do a number of other things besides) and that Joan is probably one of those trendy self-diagnosers out there. Marcos is stunned to find out that Joan has a job requiring a fair bit of intellectual work and can carry on a coherent conversation. If Ann and Marcos had a conversation together, and both mentioned Joan, it is unlikely that they would realize they were talking about the same person.
Yet that is what I see happening all the time. People see a very tiny amount of a person’s life and assume they know the rest.
This is why I agree with Cal Montgomery in an article she wrote, A Hard Look At Invisible Disability. Some people take that article as being about “the position of invisibly disabled people in the disability rights movement” (I know because I’ve seen it written about that way). That’s not what it’s about.
It’s about the idea that “invisible” disability is a misnomer. It makes it sound like there’s something intrinsic to the person that makes their particular body type impossible to perceive. In reality, the people not seeing that someone is disabled are not seeing it in part because they expect people to be non-disabled until shown otherwise. The “invisibility” is not intrinsic to any sort of “disability” (either social-model or individual-model), it’s dependent on context and on the assumptions of the person perceiving it. To call it “invisible disability” is to make the invisibility about the disabled person, rather than about the people who are interacting with the disabled person and the assumptions they bring that makes that person look disabled or non-disabled to them. The assumptions create visibility and invisibility, the actual body of the disabled person doesn’t.
To give an example of the opposite assumption, by the way, you only have to look at how I perceived people after I had been in institutions and special ed for awhile. I would walk down the street, and see all kinds of people. I would expect every single one of them to be disabled. I would expect each one to start behaving unusually or shrieking or rocking or something. I was more surprised (and alarmed) when they didn’t than when they did. Around me, nobody could have been considered “invisibly disabled” because I assumed everyone was disabled until proven otherwise.
And now — today — when there is something that I don’t know about someone, I mostly leave it as a blank space. If I see someone at work, I don’t assume that I know what they are like on their breaks or at home or even when they go to the bathroom. I don’t assume that I know their level of fatigue, overload, pain, or emotional distress. I don’t assume that just because they can talk to me in one situation means that they can talk — to me or anyone else — in another situation or for another reason, or that just because I don’t see them talking at some point, that somehow that means they could never talk in any circumstance.
What I don’t get is why it’s so necessary to fill in those blanks. What’s so awful about blank space? What drives people to shock that someone of a certain appearance can do something totally unrelated to that appearance, or to disbelief that someone who “appears normal” to them in a highly limited set of contexts is actually disabled (and possibly unable to “appear normal” in any other context or with any additional demands placed on them)? Why do people smugly insist that they know so much about other people, based on incredibly limited evidence?
Edited to add, years later: For another blogger’s take on the same phenomenon, read That Which Goes Unseen by Dora Raymaker.