A Tale of Three Experts

The following is a story I wrote based on an explanation I gave to someone who wanted an easy-to-visualize metaphor of how strange and arbitrary the designation of things like “kinds of autism” and “severity” and stuff are when performed by the average diagnostician/etc. It’s also relevant to my last post about assumptions.

Once upon a time, there were three renowned autism experts: Dr. Johnson, Dr. Smith, and Dr. Shaw. Through meticulous research, they had noted that most autistic people had animals living in their homes with them. Level of function was determined by the amount of iguanas and canaries in a person’s home: five was mildly autistic, ten was moderately autistic, fifteen was severely autistic, and twenty was profoundly autistic. They carried out their assessments of the presence of autism and level of functioning by visiting homes and counting the animals. In reality, the presence of any animals living in the home signaled autistic traits, but the experts were – being non-autistic and Very Professional – overly focused on unimportant details about autistic people.

The first person they assessed was named Julio. Julio had five canaries, ten iguanas, and five pigeons. Dr. Johnson was best at noticing canaries, so he wrote down that Julio was mildly autistic. Dr. Smith was best at noticing iguanas, so she wrote down that Julio was moderately autistic. Dr. Shaw was good at noticing both, so xe wrote down that Julio was severely autistic.

Next, they assessed Jane. Jane had five iguanas, ten canaries, and five ferrets. Dr. Johnson wrote down that Jane was moderately autistic. Dr. Smith wrote down that Jane was mildly autistic. Dr. Shaw wrote down that Jane was severely autistic.

Then, they assessed David. David had twenty iguanas. Dr. Johnson wrote down that David was not autistic at all. Dr. Smith and Dr. Shaw agreed that David was profoundly autistic.

Now they came to Kazuko’s house. Kazuko had twenty canaries. This time it was Dr. Johnson and Dr. Shaw that agreed Kazuko was profoundly autistic, and Dr. Smith who believed that she was not autistic at all.

The next person on their list was named Geoffrey. Geoffrey had nineteen canaries and a tarantula. Dr. Johnson was terrified of tarantulas, but did not want to tell anyone that. He pretended to have assessed Geoffrey and found him not to be autistic. Because he disliked being at Geoffrey’s house so much, though, he wrote down that Geoffrey had a personality disorder that was extremely hard to treat and outside his specialty. This ensured that he would never have to see Geoffrey again. Dr. Smith was not afraid of tarantulas, but because she did not see any iguanas she concurred that Geoffrey was not autistic. Dr. Shaw noted all the canaries and said that Geoffrey was profoundly autistic.

Next came Helen. Helen had fifty cats. The three doctors agreed that Helen was not autistic at all.

Alex’s house had three canaries, five iguanas, a hamster, a pig, four ferrets, a dog, three mice, and two boa constrictors. Dr. Johnson wrote down that Alex had a few autistic traits and might have Asperger’s or PDD-NOS. Dr. Smith wrote down that Alex was mildly autistic. Dr. Shaw was extremely interested in ferrets, and spent xyr entire time at the assessment playing with and watching the ferrets. To make up for lost time, xe wrote that xe had found that Alex was not autistic at all but had several highly interesting neurological traits that were worthy of further study. This was so xe could come back and play with the ferrets.

Penelope had eight canaries, eight iguanas, a rabbit, a ferret, a bear, and a bonded pair of rabbits. While Dr. Johnson would have otherwise written that Penelope was approaching moderately autistic, he was fascinated by rabbits. He spent his whole time hanging around with the rabbits and forgot to count the canaries. He wrote instead that Penelope was highly gifted because she had rabbits in her house. Dr. Smith would have also written that Penelope was hovering around moderately autistic, but she took one look at the bear and ran off screaming. She wrote that Penelope was an extremely disagreeable person with behavior problems, but not autistic. Dr. Shaw played with the ferret and wrote Penelope up, like Alex, as deserving further study for interesting neurological traits.

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What people think they know.

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.