Human Care Bears

Q. How do you get a retard to commit suicide?

A. Put a knife in his hand and ask, “Who’s special?”

I’ve known that joke for as long as I can remember. When you grow up with a mentally retarded sister, you have the retard-joke canon forced on you pretty quickly. “What’s better than winning the Special Olympics? Not being a retard.” That’s another chestnut.

As a kid I used to hear the suicide joke all the time, and it never failed to upset me. As an adult I don’t hear it much, probably because most adults realize that if you tell it in mixed company, there’s a reasonable chance someone will call you an asshole. Which means the only safe place for an asshole to repeat it is the Internet. Where lots of them do.

Funny thing is, I’ve recently started thinking about that joke in a way I never have before. I now like to imagine it as the sort of thing two self-aware retarded people might share with each other as a biting critique of the overly sentimental garbage they’re buried in every day. I mean, if I’d spent my entire life hearing “normal people” I barely knew go on and on about how my struggles had inspired those around me, about how God had specifically chosen my parents to raise me because they were saints, about how the patience my disability required had taught others the true nature of love—I’d probably feel like plunging a knife into my head, too.

Allow me to address the elephant in the room: yes, I use the R word. I’ve never used it the way Rahm Emanuel used it, when he called left-leaning Democrats “fucking retarded” during negotiations over the health-care bill. I’ve never used it the way Rush Limbaugh used it, in response to the Emanuel controversy, when he criticized our “politically correct society” for “acting like some giant insult’s taken place by calling a bunch of people who are retards ‘retards.'” I’ve never even used it the way Stephen Colbert used it, calling Sarah Palin a “fucking retard” after she demanded Emanuel’s dismissal for his apparent insensitivity, then immediately turned around and defended Limbaugh’s remark as “satire.” To me, the R word has only ever had one acceptable application—and even that one’s slippery.

In 1970, when my sister, Jenny, was born, retarded was the catch-all term for anyone with a mental disability. It was the term every doctor and specialist used when her condition was first diagnosed. It’s the term every educator used while she was in the public school system. It’s the term my family has always used when we talk about her, and out of habit and convenience we probably always will.

Advocacy groups like the Association for Retarded Citizens (which once counted my mom as a chapter president, my sister as a program participant, and me as a volunteer) started distancing themselves from the word in the early 90s. They did so for a number of reasons: it had come into favor at a time when the mentally challenged were routinely institutionalized; it had been popularly adopted as slang for “stupid”; and, most important, it was far too reductive. The ARC served people living with a wide range of disabilities—Down syndrome, autism, cerebral palsy—whose needs and capabilities were never exactly alike. To group them all together as “retarded” was inaccurate at best and insulting at worst. So the ARC changed its name to the Arc. Other groups followed suit. New terms—developmentally disabled, intellectually challenged—came to the fore. The R word became a relic of a less-enlightened past.

But when it comes to my sister, I still use it. Here’s why:

When people first get to know me, sooner or later they run through the standard battery of questions about where I’m from, what my family’s like, whether I have any siblings. Easy stuff like that. But when I tell them I have an older sister, it gets tricky. Because the next question, invariably, is what does she do?

I suppose I could be coy, just say she lives at home with my dad and let people think what they will. But that makes it sound like I’m hiding something, or ashamed. So instead I come out with it. I know in some circles it might be considered more sensitive if I said she’s developmentally disabled, or mentally challenged, or that she has special needs. But then there’d be more questions. Does she have Down syndrome? Is she autistic? What exactly is wrong with her?

I could get technical and say she’s microcephalic, which basically means her brain stopped developing at a certain point. But if I told you that right off the bat, would you have any idea what I was talking about?

Or I could go the other way and just say, literally, what she does: Well, she gets up in the morning, gets dressed with assistance, eats a breakfast someone has prepared for her, then takes half her daily allotment of epilepsy pills (usually around a dozen, and yet she still has seizures). After that she goes to a day program where she paints pottery with watercolors and asks everyone in sight what time they woke up and whether or not they took a shower, because those are her two favorite topics of conversation. Then she comes home, takes a nap, eats a dinner someone has prepared for her, watches a Barney the dinosaur video, listens to the same Whitney Houston mix tape she’s been listening to since the mid-80s, takes the rest of her pills, and goes to bed. The next day she gets up and repeats the same routine all over again.

It isn’t a bad life, but as is the case with most of us, it isn’t a terribly remarkable one, either.

So in the end I just say she’s severely retarded, and whoever’s asking more or less gets the picture.

My mother was the most vocal opponent of the R word I’ve ever known—though not the way we used it, of course. The earliest example of her outspokenness I can recall is a letter she wrote to the editor of the Houston Chronicle in the early 1980s after Jeff Millar, cocreator of the comic strip Tank McNamara and then the Chronicle‘s film critic, used the word as slang in a column. Then there was the time she made my sixth-grade band teacher apologize to me in front of the entire class after he told one retard joke too many. Even kids I knew in elementary school who came over to play weren’t spared. If the R word left their lips, or if they ever snickered at my sister, they were never welcomed into our house again.

I won’t pretend her hard-line stance never made me uncomfortable, or that I never felt she was too unforgiving. But she did rub off on me. Through most of my teens and into my early 20s, I never hesitated to correct someone if I heard them use the R word inappropriately.

And then I eased up. Not altogether—I still consider retard, when directed at someone with an actual disability, a degrading term, and I’m not afraid to say so. But when I hear an acquaintance or a stranger toss off phrases like “that’s so retarded,” it hardly seems worth it. If it’s someone I care about, who I know will actually listen, then absolutely, I’ll take the time to explain why it bothers me. Otherwise, in my experience, pointing it out has just made people defensive, made me look self-righteous, and ultimately never changed a thing.

Part of the reason is thatour society has shown zero interest in having a sustained, thoughtful discussion about the R word. This despite the best efforts of the advocacy community, which has been waging its own internal debate for two decades now, and every few years seizes on a high-profile media event as an opportunity to force the rest of us to examine the issue.

But rarely has the issue stayed in the spotlight for so long. Just as the Emanuel/Limbaugh/Palin flap was starting to recede from the headlines, Sarah Silverman made some of her own, performing a routine about wanting to adopt a terminally ill retarded child at this year’s TED conference. It went over so badly conference curator Chris Anderson was compelled to tweet, “I know I shouldn’t say this about one of my own speakers, but I thought Sarah Silverman was god-awful.” (I guess he was expecting her to play it safe and stick to racist jokes.) Then Family Guy added fuel to the fire with an episode in which Chris, the family’s teenage son, goes on a date with Ellen, a girl with Down syndrome, who cracks at one point that her mother was once the governor of Alaska—which, of course, brought Palin back into the fray, calling the show’s producers “cruel, cold-hearted people.”

By now all of these incidents have been unpacked and commented upon so many times they’re hardly worth revisiting. (And besides, no one is going to top Andrea Fay Friedman, who voiced Ellen on Family Guy and who has Down syndrome herself, making the observation in an e-mail to the New York Times that Ms. Palin “does not have a sense of humor.”)

Instead, I’d like to point out something I came across while reading over some of the opining on this circus—one of the most ignorant and dehumanizing characterizations of the mentally challenged I’ve ever seen, and from a so-called advocate.

On February 10, actor John C. McGinley—the actor who plays Dr. Cox on the TV show Scrubs and, more to the point, a spokesperson for the National Down Syndrome Society—wrote an op-ed for the Huffington Post that ran under the asterisk-laden headline “N*ggers, K*kes, F*ggots, C*nts, W*ps, and the R-word.” (As an aside: I can’t wait for the day when some nervous editor renders a title like that entirely in Zapf Dingbats, and then we just have to guess.)

Under normal circumstances I doubt McGinley’s piece would have even showed up on my radar. But a friend of mine, a disability advocate with whom I’d just had a discussion about the Emanuel incident, posted a link to it on Facebook. He didn’t really give his opinion—he just posted it. So given the respect I have for my friend, and expecting a provocative read from the headline, I clicked through.

Good lord.

My problem with the piece has nothing to do with the merit of McGinley’s argument, which, as you can guess from the headline, is that retard is as inflammatory and offensive a term as nigger or faggot. Whether black people or gay people or anyone else would agree with that is, in my opinion, irrelevant: to the mentally challenged and those who care about them, it’s the truth.

Nor does my problem have anything to do with McGinley’s style and rhetoric, the quality of which never rises above “Words hurt! Mean people suck!” My problem is with the ridiculous notion he perpetuates in his next-to-last paragraph: “The millions of people with Special Needs (around the planet), who are on the receiving end of this hate speak, are genetically designed to love unconditionally. These ‘retards’ are NEVER going to return our vitriol. Ever!”

Read what he’d have you believe again: people with special needs are “genetically designed to love unconditionally.” As if they were Care Bears or something.

Want to know how hardwired for unconditional love my sister is? She’s a 40-year-old woman. And to this day, if a toddler tries to take some shit she thinks belongs to her, she will beat his ass without thinking twice. Not because she’s some violent savage, but because she’s little more than a toddler herself. Yes, she’s sweet, affectionate, and naive, but she’s also selfish, stubborn, and at times downright mean. In other words, she’s a human being.

McGinley’s right when he says words have power. In turn, he should be aware that when he speaks on behalf of the National Down Syndrome Society, he’s relaying the wishes of everyone that organization represents. He’s telling us, the uninformed, how people with Down syndrome—and by extension, everyone with “Special Needs”—would like for us to think about them.

What he’s presenting is a cartoonish stereotype. What he’s presenting are retards.

The last major public outcry over the R word before Rahm Emanuel took place in August 2008, in the weeks leading up to the release of the Ben Stiller comedy Tropic Thunder. In case you missed it, Tropic Thunder is the story of three egomaniac movie stars who run afoul of a band of drug traffickers while shooting a Vietnam war epic in southeast Asia. One of the film’s major running gags is a part Stiller’s character once played named Simple Jack: a stuttering, bucktoothed farmhand with an IQ of five who talks to animals and prays out loud that his dead mother gets to eat ice cream in heaven.

Simple Jack was as cloying and grotesque a portrayal of the mentally retarded as they come—and that was exactly the point. It wasn’t a joke on the mentally retarded; it was a joke on Hollywood and the cheap, pandering roles actors take in an effort to win awards and acclaim. But advocacy groups didn’t see it that way. One scene in particular, in which Robert Downey Jr.—who, it should be noted, did almost the entire movie in blackface without a peep of criticism—chastises Stiller for going “full-retard,” prompted one of the biggest campaigns against a movie since The Last Temptation of Christ. There were boycotts, PSAs, organized protests outside theaters, the works.

In an op-ed published in the Guardian just as the controversy was erupting, Peter Berns, executive director of the Arc, made the well-worn argument that words like retarded and retard are the “moral equivalent of the N word.” But something else he wrote was indicative of the faulty logic and premeditated indignation at the heart of the Tropic Thunder campaign: “Anyone who doesn’t think this movie will influence the attitudes and behaviour of young people toward people with disabilities hasn’t been in high school or around young kids lately. . . . They won’t care that this movie is meant to be a parody of Hollywood’s excesses.”

In other words, it’s not that Berns didn’t understand the joke’s context—it’s that, in his opinion, the context didn’t matter.

Though the whole crusade stank of opportunism from the get-go, strategically, at least, it made sense. While Tropic Thunder probably wasn’t the only movie released in 2008 that bandied the R word about, it was probably the biggest (earning $188 million in theaters worldwide). And attacking it certainly got the public’s attention. But when Berns disregarded the context of Simple Jack—under the pretense that it might unduly influence a bunch of “young kids” who, by his own admission, aren’t lacking motivation to make fun of the handicapped—when he failed to even entertain the notion that it was a parody of something very real that very much deserved lampooning, he condoned something far more insidious: a media that consistently portrays the mentally retarded as if they were nothing more than retards.

Take, for example, The Other Sister, a romantic comedy directed by Garry Marshall about a mildly retarded young woman named Carla Tate who scores a fabulously expensive apartment in the nicest part of San Francisco and then proceeds to have sex in it. (In a brilliant bit of typecasting, the mildly retarded sexpot is played by Juliette Lewis.) Her love interest is a slightly more retarded young man named Daniel (Giovanni Ribisi) who is so obsessed with marching bands he has a job at a local college cleaning out the marshmallows that get tossed into the band’s tubas during football games. He tells Carla this one day over lunch. Her immediate response is, “How much does it pay?” He says, “Nothing. But I get to keep lots of marshmallows.”

Isn’t that precious? Who else but a retard would be offered—let alone take—a job that pays in marshmallows covered in spit?

As for The Other Sister‘s core subject matter, let me assure you, having watched my sister and her peers try to make sense of their own sexual awakenings, it’s not multiplex material. Unless, of course, you want to handle it the way Garry Marshall did, which is to dramatize it as nothing more than a super-size episode of Kids Say the Darndest Things. Penis and vagina and references to “doing it” are inserted at the most inopportune times for maximum comic effect. Daniel tells Carla he loves her “more than band music and cookie-making.” Carla says she wonders who thought up sex in the first place and Daniel replies, “I think it was Madonna, actually.”

Does that seem too far-fetched? Then perhaps you’d find Riding the Bus With My Sister more to your liking. It’s a Hallmark made-for-TV movie adaptation of a memoir—so you know it’s totally real—and stars Rosie O’Donnell as Beth, the sister alluded to in the title. Thespian that she is, O’Donnell (who also happens to be one of the movie’s executive producers) decided the most accurate and respectful way to portray a real-life disabled person would be dressing up in a Tweety Bird T-shirt and mismatched Chuck Taylors while bellowing like a wisecracking hybrid of Fozzie Bear and Pee-Wee Herman.

The dramatic arc of Riding the Bus With My Sister involves the distant relationship between Beth and her careerist, solipsistic sister, Rachel, who after the death of their father reengages with Beth and absorbs all sorts of important Life Lessons while riding public transit with her inspiring sibling. Which is the heart of every retard narrative. A charming little scamp with perfect comic timing, capable of astounding feats but utterly helpless whenever the plot demands, teaches “normal people” that their complicated lives, full of seemingly limitless possibilities, are actually their downfall. That what’s really important are the little things. Like talking to a bus driver. Or cleaning marshmallows out of a tuba.

Never has this narrative been more fully realized than on the ABC series Life Goes On, a family drama that won major credibility points for casting Chris Burke, an actor with Down syndrome, in the role of the disabled teenage son, Charles “Corky” Thacher. Every early episode of Life Goes On hinges on someone making erroneous assumptions about what Corky can and cannot do—and in every episode Corky proves that person wrong in spectacular fashion. A teacher suspects Corky of cheating on an English test? He recites a stanza of “The Raven” to her, word-for-word, from memory. The man next door doesn’t think Corky is capable of babysitting his kid? Corky rescues the kid and the kid’s dog from the bottom of a ravine. Ask yourself here what the difference is between Life Goes On and Lassie.

Of course life wasn’t always a box of chocolates for Corky. My favorite episode from the first season follows him as he tries and fails, multiple times, to pass a road test in his school’s driver’s ed course. After his final attempt, in which he actually wrecks a car, Corky succumbs to a full-on bummer spiral about his own limitations and the hardship he places on his family. It’s easily the closest the series ever comes to dealing with an intellectual disability in an honest way. But it’s a real downer, so to end the episode on a high note, Corky’s mom serenades him with a version of “Wind Beneath My Wings,” singing “Did you ever know that you’re my hero / And everything I wish I could be?” while staring deep into his eyes.

“Did you ever wonder how mothers of handicapped children are chosen?”

Erma Bombeck raised this question 30 years ago in “The Special Mother,” a Mother’s Day homily that ran in her syndicated newspaper column. It’s had remarkable staying power: if you google the title you’ll find it posted on some 30,000 sites.

Bombeck imagines a scenario where God, assisted by an angel with a giant ledger, assigns babies to expectant parents. One day during the course of His work, God comes across the name of a woman, smiles, then tells the angel, “Give her a handicapped child.” The angel, shocked, asks, “Why this one, God? She’s so happy.”

God goes on to explain that it’s a blessing in disguise. “She doesn’t realize it yet, but she is to be envied. . . . I will permit her to see clearly the things I see—ignorance, cruelty, prejudice—and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side.”

Before moving on, the angel asks God what patron saint he should assign to the woman. God tells the angel, “A mirror will suffice.”

“The Special Mother” generated more letters than anything Bombeck had ever written, and she eventually devoted an entire column to the response. Some of the mail was astonishingly mean: Bombeck quoted one woman as saying she didn’t want to read anything about “gross” retarded children and that it was “almost fashionable these days to have one.” And she was criticized by social workers and organizations as well as a mother who’d put her severely retarded hyperactive child in an institution and didn’t want her already considerable guilt compounded. But mostly Bombeck heard from mothers who told her, over and over again, “Your column made me feel good and I need to be made to feel good.”

My mother was among those who wrote in, but she didn’t have anything terribly nice to say. She found Bombeck’s attitude patronizing and was appalled that anyone would dress up disability as a God-given gift. As much as she accepted my sister’s condition and devoted herself to her care, my mom lived every day with the fear that when she and my dad both passed away Jenny might find herself, alone and defenseless, at the mercy of strangers. And she would have given anything for her to have the same chance at life that I did.

It wasn’t that my mom (who has since passed away) couldn’t appreciate Bombeck’s stab at empathy on some level. It’s that no matter how dark and difficult life for our family could be, when my mom looked at my sister, she didn’t need to be made to feel good.

But sadly it seems most of us do.

Let’s be honest: the mentally challenged make people uncomfortable. They talk funny. They don’t always respect personal boundaries. They often have a tenuous grasp on social mores. And because of that, we go out of our way to avoid them. We’re content to let them exist in a world that’s segregated from our own. And on those rare occasions when our worlds intersect? We find we lack even an agreed-upon vocabulary to discuss them.

In perhaps the saddest twist of all, who do the mentally challenged have to rely on to stand up for them? To tell their stories? To portray them in a positive light? Us. They rely on us to talk to us about them. We who only want to be made to feel good.