NOTE: I wrote this some time ago, but I don’t believe I’ve ever published it. If I have, please let me know and I’ll apologize to everyone involved. And find out whether I ever got paid.)
In spending time in a classroom for students with severe special needs I felt more like an anthropologist than an educator, particularly in examining the paid staff and their relationships with each other and with the students for whom they work. The culture and folkways of the place are fascinating and deserving of formal study; unfortunately, time and space constraints limit this piece to little more than a set of notes of field study among the culture of disability in a New Hampshire secondary school. Whether these tentative comments are paradigmatic or idiosyncratic is up to future researchers to determine. Among some informal observations are the following:
The central importance of Aides. While teachers may be legally responsible for the implementation of a student’s Individual Education Program, it is 1:1 aides who actually control a student’s life. To turn Samuel Johnson’s line around. “A teacher proposeth; an aide disposeth.” Many aides are bright, intuitive, sensitive, caring people; students are lucky to have them. Others, however, are brusque and even rude with the people for whom they work; even worse, some aides seem to project their own personalities, values and even religious beliefs onto their students. Kelvin, for example, a student I observed, is identified as having autism and uses facilitated communication; his aide, a very nice and artistic person, helps Kelvin to tap out on his keyboard his supposed desire for a career in the arts. Although Kelvin listens to books on only a second or third grade level, he writes, with his aide’s help, fairly sophisticated and long sentences which are filled with gnomic wisdom (e.g., during a lesson on career exploration, Kelvin’s aide said, “Kelvin wants to know whether he should think about the money he will get for a job or about the value of the work itself.“) Kelvin also writes poetry, with his aide’s assistance, which sounds mature beyond his years. When I tried to facilitate for Kelvin, I help him to poke out letters which formed less than a word salad–say a letter compost–and was told that it took a lot of practice to learn to facilitate. One would imagine.
In a similar way, a young woman named Kathy, wheelchair-bound and with no form of communication, had as her aide, Laurie, young, fashion conscious and, she said, fond of dancing. During the same lesson, Laurie, with no apparent input from Kathy, decided that Kathy would like to be a professional dancer and that she also had an interest in cosmetology. Leaving aside the wisdom of guiding a paraplegic toward a career (as opposed to a hobby) in dance, I was struck by how clearly (and with seeming unconscious effort) the aide’s apparent interests and desires were mirrored in her student.
Finally, another aide with whom I spoke talked about her love of God and how she and her student, Larry, were on the same wavelength and shared the same religious beliefs. This aide, too, was reaching for the stars in the career she saw Larry choosing for himself. ”He wants to be a country singer, although he does worry about all the travel and the bright lights.” Larry, by the way, is nonverbal, wheelchair-bound and has severe mental retardation. Calls to various national recording studios have gone unanswered, so the depth of country music’s commitment to equal opportunity is unclear.
This reflection of self onto the person with disabilities is probably, on the whole, a good thing, for is better to have aides identifying their students as geniuses in the raw than as monsters in captivity. Still, this is a case of the good driving out the best, for it once again prevents us from viewing people with disabilities as they truly are.
Functional language or the language of functions. Nowhere else in the world would one here talked of “toileting“ oneself or another. Whether because of Anglo-Saxon squeamishness or some other reason, humans in our culture are generally euphemistic about bathroom activities (e.g., we speak of going to the bathroom, excusing oneself from the room, or needing to relieve oneself). In the world of people with disabilities, however, folks need to be toileted, which, interestingly, manages to both verbalize a noun and remove the human element almost entirely. That is, it is not the person who needs to relieve him or herself of body waste; rather, it is the toilet which needs to be filled with waste. Likewise, the use of the word “feeding” in regard to humans, outside the world of infants, is not a general practice. One feeds the dog; one helps a one year old eat; one eats one’s meal. In the world of the severely disabled, however, lunchtime is feeding time. This willingness (or need) to do away with social niceties extends to making observations about a student’s body, odor or hygiene to the student’s face that would never be expressed so bluntly toward as non-disabled peer. During my visit, I heard one aide say, with good cheer and no apparent malice, to her student, “God, you stink. We’ve got to toilet you. “ It is well-nigh impossible to imagine anyone other than a parent or spouse speaking so to another adult without incurring a great wrath.
The use of the third person singular pronoun regarding people who are not present. Outside of spouses of 30 years and parents of small children, it is not common for one to refer to a present party by the use of “he“ or “she,“ particularly in answering questions directed to that party. For example, I repeatedly tried to strike up a conversation with a young man named David, but his aide would respond to my sallies with answers of her own. That is, I might say, “That looks like a fun project are doing, David.“ His aide would respond, “He doesn’t really like doing this kind of thing. He’d rather be more active and moving around. “
The seven dwarfs syndrome. While no one would fault Disney Studios for its shortcomings in character development, one must admit that once the dwarfs have been introduced, their personalities remain completely static. Sneezy’s character, for instance, is summed up by his name; so also with Sleepy, Grumpy, and the others, with the exception of Doc. So it is with attitudes toward people with severe disabilities, as they are often described with one- or three-word phrases that sum up the entirety of the speaker’s view of them. For example, an aide may say of a student, “She’s always cranky“ or “He’s spoiled“ or “She loves to stim.“ These statements become self-fulfilling prophecies, but prophecies of the most reductionist kind. It is difficult in the extreme to imagine the sentence, “He is fascinating“ or “She struggles with her place in the universe“ being uttered in this context. Even the more positive statements (e.g., “She’s so happy“ or “He’s a lot brighter than he looks“) are generally the results of a twist of fate that has given the student an upturned rather than a downturned mouth or particularly attractive eyes.
As mentioned above, having spent but a short period of time in this setting, I could be very wrong in my observations. After all, de Tocqueville spent months with the new Americans before reaching any conclusions. Still, one suspects that after a fairly short period, he felt he had stumbled onto a large and fruitful subject. So it may be with the anthropological study of the culture of disability. One can only hope that much of this culture disappears before it is accurately recorded.