reflections on retarded (orig. published Aug 5, 2010)

29Jun11

“This little boy may not look like what you asked for…He may not have all the features you requested, or be able to perform all the tricks.  But put him in place, and he will light up your life.  You have no idea how much magic is in him.” 

–Martha Beck (about her son, Adam)

I’ve always been semi-emphatic about using the word retarded in its original sense (to describe somebody with intellectual disabilities).  My younger sister, who has Down Syndrome, was born right around the time when the word started to fall out of favor; but not before I (as an elementary school student) came across “mental retardation” as a descriptor of her disability in textbooks and encyclopedias.  For a long time, my use of the word was simply a habit, borne of the way my sister was first described to me.  I never connected—and still don’t connect—retarded-my-sister with retarded-as-an-insult.

Later on, I became more militant about it, especially as societal consensus grew—and PC language became more prominent—and people started telling me that I shouldn’t call my sister that.  My reaction (aside from good old fashioned perversity) was that nobody—but nobody—is going to dictate the language that I use to describe my own family; particularly nobody who doesn’t love my sister as I do.  Unless someone close to you has a disability, you don’t get to judge the words we use for them (unless you think the person is being abused, and then by all means, do what you have to do).  I think it was a bit of a psychological weapon on my part—I felt like phrases like “developmentally disabled” and “intellectual impairment,” rather than being more accepting and respectful, had the affect of making my sister more invisible.  Though PC language does many good things, it also encourages people to make shallow changes and think that those are good enough.  Too many people change their vocabulary without changing their philosophy or how they act toward the people they’re labeling.  My sister’s problems aren’t with people who refer to her as retarded rather than cognitively challenged; my sister’s problems are with people who don’t think she’s worth spending time with or noticing at all.  Calling my sister “retarded” is a way to make her instantly visible; it’s a way to make people pay attention and get them out of the comfortable PC rut they have dug for themselves.  If you don’t believe me, think about this: my sister went to the same school district for all twelve years of her public education, with many of the same classmates year after year.  The vast majority of her interactions with people are kind and compassionate ones.  But in twelve years, she was never—not once—invited to a neurotypical child’s house to play.  I don’t believe she was ever invited to a birthday party.  She had playmates and friends, sure, but it was always my mother inviting them to our house—never the other way around.

There’s also the fact that, when people call other people retarded, I don’t feel like it’s retards they’re really insulting—they’re insulting assholes.  If I get offended, it’s because I have great love for the retards in my life, and I don’t appreciate the comparison.  There are things people do that are fantastically stupid and self-centered and thoughtless; retards don’t generally do things that fall into that category.  So to call someone who behaves that way a retard is to miss the point rather fantastically.  Retarded people don’t behave the way assholes do.  Don’t make the words synonyms; they’re not.  In addition, to use “developmentally disabled” as a more polite substitute for “retarded” is to imply that the two phrases mean the same thing–but they don’t.  Developmental disabilities encompass a broad range of individuals, including ones with physical but not cognitive disabilities–what new phrase do we create to replace the one we’re redefining?

My other reason for using the word retarded has to do with this: though the word has been falling out of favor in individual school districts and state by state (48 of the 50 states now decline to use it in official language), there are still many thousands of school districts around the country who use language like “mental retardation” on a child’s IEP (Individualized Education Plan, a document that is created by a child’s parents and teachers, describing the child’s specific challenges and infirmaties and setting out goals for the school year.  Every child in the United States who is in any sort of special education program in a public school gets one).  It’s August, school is starting, and parents are grappling with seeing this word in black-and-white type on their kindergartner’s paperwork.  It’s an unavoidable fact for them, an unavoidable word, an unavoidable reality.  Sometimes it’s assigned to borderline children, or untestable children, on the grounds that labeling a child as retarded—whether the reason for their academic delays has to do with their IQ or not—will get that child more help and more services, something that just about every child in special education programs needs.  The DSM-IV, the encyclopedia of psychiatric diagnoses, still lists “mental retardation” as a diagnosis.  This is the same DSM that removed homosexuality from its list of mental disorders back in 1973, but no similar such campaign has been waged for the retards (partly because, in all fairness, it only became an insult comparitively recently).

So that became my line: before you police me and my language, how about you get the federal government and the American Psychiatric Association on board.  Get out from behind your self-serving complacency and figure out that the power system is still calling people niggers.

But my list of reasons why I use the word is getting steadily shorter.  The DSM-V, which is set to be released in 2013, is replacing “mental retardation” with “intellectual disability” (or the more poetic “intellectual or global developmental delay not further specified”).  And in May, Congress passed legislation removing “mentally retarded” from federal laws and statutues (including IDEA and the ADA).  I shudder to think how much I have to thank Sarah Palin for these particular developments, in an indirect way if nothing else (though it was actually Maryland senator Barbara Mikulski who filed the bill).  It looks like pretty soon here I will be one of the only people insisting that this word be used in this way, and maybe it’s time for me to reassess.

Is my sister more likely to be treated with respect now that she is officially “intellectually impaired” and not “mentally retarded”?  Will people treasure her as a person, and take the time to get to know her?  Are we a more enlightened society, treating our vulnerable children more humanely, when “retard” becomes synonymous with “asshole” and not with “disabled person”?  It’s worth remembering that “retarded” was introduced into the lexicon in the early 20th century to replace words like “idiot,” “moron,” and “feebleminded” that had been co-opted for derogatory use.  “Retarded” was intended to be the standardized, sanitized, de-stigmatized term, and for close on fifty years it was: note the existence of the Association of Retarded Citizens (now the Arc), the American Association of Mental Retardation (now the American Association on Intellectual and Developmental Disabilities), and the President’s Committee on Mental Retardation (now the President’s Committee for Persons With Intellectual Disabilities).  It’s clear that when the medical and legal community come up with a word to describe people with mental disabilities, eventually that word is co-opted by the general population as an insult.  This implies that the problem is not the word we use–the problem is that the general population is, pardon the expression, fucking retarded.

On the one hand, people with disabilities have more visibility and access to resources than perhaps they ever have before—according to the IDEA Parent Guide and a study conducted by the Office of Special Education Programs, more than six million children receive special education services in our public schools—compared to 1975, when more than one million children didn’t even have access to the public school system because of their disabilities and another 3.5 million were warehoused in segregated schools and received little to no effective instruction.  But that doesn’t necessarily translate to being treated in a welcoming, compassionate way.  It doesn’t mean that we as a society have made a commitment to welcoming, including, and honoring some of our most vulnerable members.  The fact that we still have to re-draft our vocabulary every twenty years or so is, I think, very telling.  And I’m tired of it.  I won’t surrender my vocabulary to assholes this way.  Why should I have to find a new word to use for my sister?  Let them find new words to insult each other with that don’t include my sister in their little Venn diagram of douchebaggery.

I spent some time cruising online special needs parenting websites, and the consensus seems to be that parenting a child that’s different is still a very lonely thing.  Lots of parents of disabled kids (not to mention the disabled kids themselves) still face a lot of problems and challenges that actually have nothing to do with their disability, but rather with how people see them (or, conversely, ignore them).  I think it’s significant that most of the disability discrimination law we have in this country was passed via court precedent, not through vocal protests or civil disobedience; and what campaigns there were were led by family members or professionals who work with the retarded community, not led by retarded folks themselves.

When the queer community is pushed, it pushes back.  Pretty hard.  Pride Parades have their roots in the Stonewall riots of 1969.  Getting homosexuality out of the DSM-III was an organized campaign by queer folk in the psychiactric community.  There were protests, walk-outs, entire conventions disrupted.  Members of the APA had to come out of the closet and describe their experience of being homosexual in a profession that thought them deranged.  They got themselves named to various committees to have the language changed.  (Read here for the full story, or listen to This American Life’s 2002 piece on the process).  When the gay community takes to the streets, it may not be a riot anymore, but it is likely to be a loud and angry protest march.  Gay folk demand their rights, as well they should.  And there are several sizable lobbying and political groups dedicated to defending and extending gay civil rights (HRC, PFLAG, GetEQUAL, Dan Savage, etc).  But when retarded folk take to the streets, chances are it’s raising money for a nonprofit to research autism.  The retarded community tends to keep to itself, and it’s only over the past fifteen years or so that there’s anything that even looks like a national retarded community, thanks to the internet (and to education opportunities that opened up in the 1970s finally having an impact, as we have more educated retarded adults floating around, advocating for themselves).

On some emotional level, the general invisibility of the retarded community makes me sad.  There’s definitely a part of me that wishes retarded folk would take to the streets and demand respect the way the queer community has, even though this is an absurd impossibility.  If you push a kid with Down syndrome, or treat her disrespectfully, she’s not going to push back—she’s going to get railroaded.  Retarded kids just don’t harbor justifiable anger the way us neurotypicals do.  Then, too, I think kids with disabilities and their families are under an awful lot of surival pressure.  Take my sister, for instance: she had a major operation when she was a day old; as an infant she had physical therapy (people with Down’s have notoriously low muscle tone); she got glasses when she was two; I don’t think she was potty trained until she was four or five.  In school there were IEP meetings on top of parent-teacher conferences, and endless questions of is she learning, how can we test her, how can we teach her creatively, what should we teach her next (this isn’t even counting taking proactive steps to get her into after school programs and group settings so that she would have some kind of interaction with her peers outside of school, since none of them were inviting her over to their house to play).  When she graduated high school, she transitioned to another program with another infrastructure; when she turned 21 she transitioned to another.  When she turned 18, my parents filed paperwork to remain her legal guardians (paperwork that has to be refiled every year).  Eighteen is also when she is eligible to start collecting SSI (Social Security Income), so now we have the federal government to navigate, and taxes, and building her a trust fund so that she isn’t solely reliant on SSI.  And finding her a job, and still trying to keep her emotionally and socially connected to people, which gets harder and harder the farther away she gets from the structured environment of school.  Eventually, as my parents get older, questions of where she’s going to live and who with are going to materialize.  My parents are educated middle class folks, and my dad’s a CPA so he’s especially equipped to deal with the financial questions surrounding my sister’s future, but it’s still a complicated, full time job—as if simply meeting the emotional needs of a child (any child, but especially one with a disability) wasn’t hard enough.  At least the money questions have hard edges; when it comes to questions of emotional health every decision is new territory, and you have to watch to see the results of it, because the child can’t necessarily tell you.

So yeah, retarded families are pretty busy.  Fights that happen—and they do happen—happen on an individual level, over an individual child’s care, an individual child’s right to education and services.  I think all these factors, while simply necessary facts of existence, contribute to the general invisibility of the retarded community.  Every person I know who advocates for folks with disabilities is, without exception, close to such an individual, either personally or professionally.  Why isn’t the community of retarded allies a wider one?  I made an intellectual and emotional decision to be in favor of gay rights before I ever knew a gay person, but there doesn’t seem to be an analogous community of folks opposed to discrimination against retarded folks.

I’m white and middle class and educated and straight, so when comes to activism, I almost always enter it as an ally.  When it comes to community organizing, one of the guiding tenets of being an ally—particularly an ally with privilege, with more power than the demographic I want to help—is that underprivileged folks need to organize for themselves.  Immigration reform is done best when the agenda is set by people within the immigrant community.  During the Civil Rights movement, the Southern black community set their own agenda and organized their own actions.  Queers set their own agenda and organize their own actions.  Leadership from within the oppressed community is absolutely essential, but there are unintended consequences that we have to be aware of.  It can lead to complacency amongst the privileged crowd, even amongst those who count themselves as allies, to think that to organize for rights is something we help other people do, not something we have to work on ourselves.  I’m an ally, so I don’t have to examine the ways in which my existence and behavior perpetuate and shore up the straight white classist system; I get to think of the system that happens outside of myself because I showed up at the PFLAG rally.  Then, too, people with privilege—even well-intentioned allies—tend to pay attention only when the oppressed community stands up and starts screaming.  How do we effectively ally ourselves with groups that don’t characterize themselves that way?  With groups that don’t organize actions and protests and walk-outs; that don’t have a political lobbying platform per se; but who absolutely need allies?  I would like to feel like it isn’t only me, my brother, and my two parents who are standing between my sister and the big dark world.  Even though I’m straight, I have a pretty good idea of the sort of person I want to be as a queer ally; but I don’t have a similar clarity over what it means to be an ally for retarded folk—and I’m even closer to retarded folk than I am to gays in many ways, and if I don’t have a way to explain how to be an effective ally for my sister, how can I expect folks who are well-intentioned but don’t know any retarded people to ally effectively?  How do I even tell them that we need allies, that my sister needs allies and friends outside of the circle that’s known her all her life?

Who are the retarded people in your community?  Where do they hang out?  When a man with Down syndrome is bagging your groceries, how do you treat him?  How do you treat your child’s autistic classmate, and how do you treat her parents, and how does your child’s treatment of that classmate reflect what you’ve taught him?   What’s the biggest problem that the disabled community faces?  And what problems will we further have to figure out, as millions of children with autism become adults and enter the post-school world, become eligible for SSI?  How do you make sure these folks are treated kindly and compassionately—both by the system and by yourself?

Maybe it’s a semantic difference; maybe it’s just an illustration of two communities gaining visibility in differing, but not unequal, ways.  It’s hard to overemphasize the difference in my sister’s quality of life now, because she was born in 1985, and not 1950.  And I think the world in general is coming around to the idea that having a retarded kid isn’t an absolute burden or tragedy; that these kids bring their own gifts to the world with them that we all benefit from.  But still, over 90% of the fetuses diagnosed with Down Syndrome are aborted, there are people (and school districts) who try to deny needed services to kids with special needs, and the world at large is indifferent to–or ignorant of–the struggles that these kids and their families go through.  That’s not even counting the people who take pictures of Sarah Palin’s son and superimpose his face with that of a monkey or who wish her “Better luck next time.”  We have a long, long way to go before becoming an inclusive society.

So, until further notice, I’ll be calling my sister and others like her retarded.  In the words of The West Wing, “I’ve got some real honest-go-god battles to fight.  I don’t have time for the cosmetic ones.”

Bibliography:

http://thehill.com/homenews/senate/99391-senate-bill-aims-to-take-retarded-out-of-federal-lexicon

http://www.washingtonpost.com/wp-dyn/content/article/2010/02/04/AR2010020402602.html?sid=ST2010021202633

http://www.washingtonpost.com/wp-dyn/content/story/2010/02/12/ST2010021202633.html?sid=ST2010021202633

http://en.wikipedia.org/wiki/Individuals_with_Disabilities_Education_Act

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