The I-Word

by Ian Ford

We have come a long way, right? We used to be called idiots and lunatics. Now we are referred to as individuals living with name-your-disorder, so it appears we have finally moved beyond the language problem. Most people know the R-word is incorrect, and the new (correct) term is a “person with an intellectual disability.” Well, I’m going to challenge that by saying we are not there yet, and it was never strictly the language that was the problem in the first place.

My recent journey of thinking about the I-word started with a reminder e-mail that I got. A studio was giving free dance lessons to autistic people (as I knew from prior announcements), and this reminder e-mail said simply, “There are still a few spaces left in the African Dance and Drumming class! Individuals aged 12 and older, of all ability levels are encouraged to apply.” They used the dreaded I-word: Individuals. One is supposed to understand from this code word that the class is only for us, not for regular non-disabled people. If it was for anyone, it would say “everyone” or “teens and adults” or just “people”.

Before getting into disability naming, I’ll talk about other kinds of naming starting with ethnicity. My favorite name-change story is that of the people formerly known as colored, then Negroes, then known as various other names finally culminating in the now-standard African-American. This ethnic label is contrasted with White, Hispanic, and other annoyingly non-parallel labels for language and religion, as if to ignore the fact that some Africans are light in color, and not all dark skinned people in America stem from Africa, and some of them are also Hispanic, and many other problems of classification. Anthropologists know there is not really any such thing as ethnicity, because there are actually no boundaries – the color and other features of people vary in infinite gradations, and there is no measurable dividing line between “races”. What people refer to as ethnic groups are complex collections of factors that include appearance, ancestral origin, religion, and dialect.

It is the act of naming so-called African-Americans that creates the group; so I’m calling this phenomenon “group creationism”. The group comes to exist because it is identified, talked about, and people believe it exists and that it identifies a real bounded set of people. That does not cause it to really exist in a scientifically measurable sense, however.

Question: Are the people formerly known as Negroes the same people as the people currently known as African-Americans, or did the name-change also change the defining boundary? And a related question is, if the boundary did not change, then what purpose was served by exchanging one word with another? One part of the answer is that, for most people, words are not merely descriptive names but are also laden with associations. There are both derogatory and respectful words for each ethnic group, and the choice of words conveys what you think the other person is. Regardless of which style of word you use, you would still be engaging in group creationism. Perhaps people find it safer to keep switching to a new word that has fewer associations.

And what about intentionally vague euphemisms like “inner city”? This is generally invoked to avoid using a term that might be derogatory, while not literally indicating any set distance from the city center. You can keep changing the name all you want, or avoiding it, but these tricks of language don’t really change the fact that you are still projecting a concept of ethnic boundaries.

Another kind of socially constructed group is the homeless – also one that has had various name changes. Someone who would have been called a hobo or derelict is now a more respectable “Homeless Person.” (The capital letters enshrine that it is a term and not a descriptive phrase.) When I shared an apartment with someone from Texas who had been on the road a long time, my mother said “What!? You’re letting a Homeless Person stay in your apartment?” I explained that since he lived in my apartment, he was, by definition, not homeless. She eventually accepted that, but the initial response (the most telling of how a person really thinks) showed that she had engaged in group creationism – projecting that a group of such people exist and that the qualities of those people make them what they are. So the name is projected on people not only because they have no place to live, but because of some socially constructed quality put onto them through language. So is the new name really more respectable than a hobo? Do people really mean anything different when they go to the trouble to say Homeless Person?

Back to disabilities, I have a friend who says she is retarded. Retarded literally means delayed or slow, and since she is ten years behind her age cohort in school, she logically concludes that she is retarded. Since she is also autistic, she doesn’t much buy in to the associative meanings of words, so she doesn’t care that the R-word has been downgraded to shock-value-level offensive in the culture at large. Again we have the whole history of name changes and overlapping names: idiot, retarded, special needs, person with retardation, intellectually disabled, etc. In the case of my friend, the only true fact is that she is ten years behind in academics. If she is included in the grouping of some label, that’s group creationism, not reality. Suppose I say we really should not call her “intellectually disabled”, then someone might say (exasperated), “Well, what can I call them? I can’t keep up with the terminology!” The point is about needing to call “them” anything. People are not the distance between themselves and the norm. They are just themselves.

If the new name is just a new rearrangement of letters for the same idea – a new way to say we are less than normal – then it isn’t going to be accepted. It’s nothing more than renaming the same people from Negro to black to whatever; it just sounds less pejorative because it is starting out with a fresh set of associations. But if it is really defining the same boundaries and limitations, it isn’t really new and improved.

Let me take another diversion into jokes. Jokes using “retard” or any ethnic label only work because many people share an understanding of a socially constructed group of people who are defined and limited by that label. Whether a person’s speech is a joke or not, and even if they substitute some other synonym for a derogatory label (for example “A Homeless Person walks into a bar…”), they are still communicating beliefs about that made-up group. Jokes convey group creationism just as much as other modes of speech. Humor doesn’t bypass expressing how you think; in fact it often exposes it more clearly than stilted, prepared speech.

I have a few explanations for group creationism. First, it is how most people are wired. When researching for my book, it became clear that a core difference between autistic and non-autistic people is in the way culture is transmitted, and particularly the way socially constructed elements of culture are believed to exist in the same manner as natural phenomena. Those wired more austistically can be blind to things that (as we might say) “don’t exist”, but which do exist in a cultural sense. Those wired in a more associative (typical) way absorb these constructions through their associations, seek out power imbalances, and are more adept at group-creationism as a way to exploit those imbalances. Being on the more advantageous side of a boundary is grounds for needing the boundary to exist, and therefore makes the advantaged person see it more clearly.

Another level of explanation is the bureaucratic explanation. Imagine discussing registration forms for a conference. You might say “Tom is Monday” (Tom registered for Monday only) or “Mary is full buffet”, as a shorthand, but you don’t mean that the people literally are Mondays or buffets. School staff talk about students with the same shortcuts: “Tom is special-needs” or “Mary is a free lunch”. This vocabulary appears to have escaped the staff room and become a universal, so now we have “special needs children” (where “needs” is now an adjective). It was a bureaucratic classification; it then got projected onto people as group-creationism.

A slightly different view of the same phenomenon is through the economic lens. Imagine a group of farmers talking about animals. They talk about “stock” or “livestock” – in other words, they only mention the aspect of the animal that is relevant to their livelihood, as if the animals are not more than not-yet-packaged retail units. There are producers and consumers engaging in financial transactions, but the animals are just a third party that has no say, and consequently no name. In a possible parallel, the autism industry (and presumably other related industries) is made up of customers (mostly insurance companies, government agencies, and parents) and vendors (private agencies), so all the financial relationships are between those stakeholders, which usually don’t include us. It seems like anyone who is not a party to a transaction gets a term like “livestock”, or in our case, “individuals”. (“Consumers” has also been used.)

Is the I-word one step short of full acceptance, or a sterilized synonym for all the other words? When a group of professionals discusses colleagues and family, they will say “a guy I know” (or any informal term using natural language), but when they talk about us, they often use code words: individual, or sometimes (oddly) citizen, kiddo, or gentleman. But whether they call us specimens, or The Honorable Princess, it would still be group-creationism. The new words (when used as code words) are just a smokescreen to cover that up.

I don’t think the great vocabulary debate will be over until people really see other people as equal in spirit, and they don’t make the “less than” distinction at all. Then we will say what we mean, without having to be careful to use certain code words. If we are talking about someone’s color, we will describe the color as chocolatey or tan (people don’t come in white). If we are talking about someone’s academic performance, we will describe it. If we are talking about someone’s neurotype or personality type, we can use descriptive words like extroverted, autistic, or messy. There just isn’t any reason to resort to projecting groups.

Ian Ford is an engineer who blogs about policy, transit, and education.