An Open Letter

27Jan12

Mental Retardation

A. Significantly subaverage intellectual functioning: an IQ of approximately 70 or below on an individually administered IQ test (for infants, a clinical judgment of significantly subaverage intellectual functioning).
B. Concurrent deficits or impairments in present adaptive functioning (i.e., the person’s effectiveness in meeting the standards expected for his or her age by his or her cultural group) in at least two of the following areas: communication, selfcare, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety.
C. The onset is before age 18 years. –The DSM-IV

**

Intellectual Developmental Disorder

Intellectual Developmental Disorder is a disorder that includes both a current intellectual deficit and a deficit in adaptive functioning with onset during the developmental period. All three of the following criteria must be met.
A. Intellectual Developmental Disorder is characterized by deficits in general mental abilities such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience. Intellectual Developmental Disorder requires a current intellectual deficit of approximately 2 or more standard deviations in Intelligence Quotient (IQ) below the population mean for a person’s age and cultural group, which is typically an IQ score of approximately 70 or below, measured on an individualized, standardized, culturally appropriate, psychometrically sound test.
AND
B. The deficits in general mental abilities impair functioning in comparison to a person’s age and cultural group by limiting and restricting participation and performance in one or more aspects of daily life activities, such as communication, social participation, functioning at school or at work, or personal independence at home or in community settings. The limitations result in the need for ongoing support at school, work, or independent life. Thus, Intellectual Developmental Disorder also requires a significant impairment in adaptive functioning. Typically, adaptive behavior is measured using individualized, standardized, culturally appropriate, psychometrically sound tests.
AND
C. Onset during the developmental period. –DSM-V (proposed change)

Dear ———,
I’m really very sorry, and I know this is stupid, but I am unclear on how I should describe you.

In a recent online discussion, I was telling the story of the woman who took at least seven minutes in a handicapped stall of a public bathroom talking on a cell phone while her child, crammed in an SUV stroller in the stall with her, screamed at the top of his/her lungs. (I know how long she was in there because I was one of the unfortunates waiting in line to use the remaining stall). Someone replied to tell me in no uncertain terms that “handicapped” was considered offensive nowadays, and that the proper term was “accessible.” I stated in my defense that (a) I know several physically ——— people to whom “handicapped” was not insulting; (b) that to call the stall “accessible” was a misnomer when (b.1) it was occupied by a woman with an SUV stroller for seven minutes and (b.2) there are disabled people for whom using the toilet is just as difficult in that stall as any other (like my friend Bob, who had polio as a child and has use of his legs but not of his hands), who would not find such accommodations “accessible;” and (c) I was not describing a person, but rather a toilet, which cannot take offense one way or the other. My defenses were declared invalid and evidence of my own unexamined privilege. I protested that I thought having a sister with special needs had taught me one thing or another about my own able-bodied, neurotypical privilege, only to be informed that “special needs” and “special education” were even more insulting and condescending than “handicapped.” One thing led to another, and the discussion ended right around the time when I was declared an atrocious person who delighted in insulting people.

So I’m running out of words. The more I think on it, the more the words evaporate. I just want to know if there’s anything that’s not corrupted. It no longer matters that “handicapped” and “retarded” were introduced into the ——— lexicon specifically because they were politically correct, disconnected from the stigma surrounding words like idiot, mongoloid, feebleminded, cripple. No, our society is so determined to insult and belittle ——— people that even clinical terms become untouchable. Never mind that my sister’s first few IEPs (made in the early 1990s) gave “mental retardation” as one of her disabilities. If I call her that now, I’m an abuser, an oppressor.

The roots of “handicapped”‘s use as a tool of oppression stem, I guess, from the alleged story of its origin to describe people back in the day (read: 16th century) whose physical body kept them from working, so they begged on the streets with their caps (hand in cap…handicapped). It doesn’t really matter that there’s an alternate story of the gambling game in which “the bettors would put their hands holding forfeit money into a hat or cap. The umpire would announce the odds and the bettors would withdraw their hands—hands full meaning that they accepted the odds and the bet was on, hands empty meaning they did not accept the bet and were willing to forfeit the money.” (etymonline.com) And of course, there’s the handicapping of fast horses so they don’t have an unfair advantage in a race. But maybe the problem is just that “handicapped” is associated with the vocabulary of the 1960s and 70s, when we as a society started realizing that we’d been treating ——— people pretty shiftily for quite some time, and started trying to prove that we weren’t such jerks after all. When Hitler experimented on, euthanized, and/or forcibly sterilized people with clubfeet and blindness and deafness and Down syndrome and dwarfism and cerebral palsy, we saw our own Institutions for the Feebleminded with new eyes (even if it took us another 30 years to get our act together).

I did not mention in my argument with the online person how much it irks me that the ——— community has ceded ownership of the word “retarded” to teenagers, stand up comics, and the world of ableism where the worst thing you can possibly be is perceived as stupid. My sister was once retarded. She is now “cognitively delayed” (implying that someday she’ll catch up?), but whatever she is, it’s not a bad thing to be. Out of compassion for the absurdly high number of people in the ——— community who were teased cruelly as children and called retards and losers, not to mention physically abused, I don’t use the word anymore, but I admit a certain amount of ambivalence toward the ——— community’s desire to erase the word from the world entirely. When you erase the word, you erase part of my sister’s history. You attempt to erase the memory of what used to be done to kids like her.

I am truly sorry, ———, that you were teased and abused as a child. I’m sorry you didn’t get the medical or educational tools that you needed, and that you didn’t learn that you could advocate for yourself until you got to college. Disappointed is not the word for the emotion that I feel for this society that has gone out of its way to make you think that you don’t matter, because you do. You know that you do. But at what point do we admit that the problem isn’t in the words, but in the determination of the willfully ignorant to co-opt and corrupt them, and that they will continue to do so until we shut them down for good? How long do we let them chase us around like this, and steal our words? Erasing the words doesn’t stop the abuse, or haven’t you heard anybody comment lately that Angelina Jolie’s baby “looks a little bit Downsy”?

Part of the dilemma, as I see it, is that you have never once gotten to self-identify and choose what you want to be called. Which sucks. Self-identification is one of the most basic elements of self-empowerment. Any child who read fairy tales knows this, though in perhaps in a backwards way, because in Faerie your name is so powerful, such an essential part of your Self, that you are supposed to keep it a secret. Rumpelstiltskin made a wager with his name and lost his life. In our culture, you’re not supposed to keep your Self secret. You’re supposed to give it away. Identity politics. This is the problem with “special needs.” Nobody identifies as a special needs person. They are identified, by parents and teachers and doctors, as having special needs and given accommodations which, though necessary, the child may still find frustrating and humiliating.

People First language (the practice of referring, not to Blind People, but to People With Blindness) seemed a step in the right direction until I met some fierce, proud people who declared that they do not have autism, but that they are autistic, and that People First language is degrading and condescending. People should not be reduced to a diagnosis. But neither should they be fragmented into a person who would be whole but for this diagnosis that clings to them like some sort of lesion that is unfortunate, but to be ignored as much as possible. I want to refer to you—and to honor you—as a whole person. Please tell me how.

Honestly, when I look at it, I’m a little surprised that “disabled” doesn’t get more criticism than it does. “Dis” is a Latin root meaning lack of. Meaning apart, away, asunder. Meaning not. Not abled. Away from ability. Want of ability. Incapacitated, legally disqualified, made unfit, rendered unsuitable. How is that not offensive? There’s no way to qualify the word to accommodate which abilities the person doesn’t have. My friend Bob, though he is put asunder from his ability to use his hands, has nevertheless had a long and successful career as a lawyer. He volunteers at his church, got married and had kids. Certain skills are beyond him, but he’s far from incapacitated. “Handicapped” may have offensive roots, but isn’t “disabled” insulting right here and now?

But now I’m just being a devil’s advocate. ———, I understand you must call yourself something, and that this is an imperfect world at best. I understand it’ll take some time before people with Down Syndrome decide that they don’t want to be named after the doctor who first characterized their “disorder,” or autistic people decide that two Greek and German roots combined into a word that translates as “morbid self-absorption” is an inappropriate descriptor for them and their nature.

Again, this is just to let you know. Not that I’m impatient, just that I’m a little confused. I know you’ve got other stuff to figure out, stuff besides this, so if all you need is time, that’s cool. You know you can ask me for help. I’ll be around if you need anything.

Catch you later,
‘Ella

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