Friday, June 22, 2012

People with Down Syndrome Can Be Jerks, Too

Growing up with someone with an intellectual disability taught me that they have the right not to be sweet all the time.
My Aunt Sandra has Down Syndrome, and she can sometimes be kind of a jerk.
That’s a legitimate thing to say, I think. There is little that makes me more uncomfortable than when people sanctify those who are intellectually disabled. Sure, the majority of Sandra’s friends with Down Syndrome have been genuinely sweet-tempered, loving individuals. More than once, though, I’ve had conversations where a well-meaning friend will sigh and say, “People with Down’s -- they’re just -- they have the best smiles, you know? They’re always smiling!”
This seems completely ridiculous even to write, and I can’t believe I’m spelling it out. But people with Down Syndrome aren’t puppies. They don’t exist to fill your heart with gladness. They’re people, with feelings and hormones and bitchery, and they can sometimes be giant manipulative jerks.
I lived with Aunt Sandra from when I was four until I moved out for college, so I kind of think of her as my older sister. When I was a kid, we were totally best friends: She’s great with children and has the patience of literally no one else in my family, so we got along fabulously. We’d play hide-and-seek and freeze tag in the backyard or watch endless hours of pro wrestling on TV, which both of us were weirdly into. 
When I got older, of course, things got harder: I became a teenager who Needed Boundaries, Ugh, God, and social butterfly Sandra couldn’t really understand why I would shut myself in my room for hours on end to have intense emotions about Smash Mouth. 
“Kate, do you want a Diet Coke?” she’d offer every ten minutes, opening the door a smidge. 
I’d frantically throw myself in front of my computer monitor. “No, Sandra, GOD! I’m BUSY!”
“Just thought I’d ask,” she’d mutter, shutting the door gently. And then I’d feel guilty for snapping, until she’d come in again and start the cycle over. Every. Ten. Minutes.
She was also the World’s Greatest Cock-block: For someone who’s a little overweight, she moves like a cat. I can’t count the number of times that a friend and I would be making out on the basement couch, only to see Sandra-shaped movement from the corner of my eye. 
Jesus Christ,” I’d yelp, shoving that week’s mouth-friend away from me. “What -- we were just watching 'Freaks and Geeks!'”
“I saw,” she’d reply cryptically, and then tell my grandma all about it. Dammit, Sandra.
She’s what my grandma always called “high-functioning,” in a careful way that suggested she was quoting it from somewhere else. She likes to read books about the history of voodoo and watch Nick at Nite reruns, and once she discovered Google it was all over. Her favorite thing to do the last couple years has been to “travel:” to type in addresses of her loved ones and use the StreetView to look at their neighborhoods. She’s probably seen more of San Francisco than I have.
Apart from her creepy radar of somehow knowing exactly when I was watching porn, Sandra also has an emotional intelligence that far outweighs anyone else in my family. The rest of us are pretty cold-hearted awkward-faces who have to have feelings spelled out for us before we get that other people aren’t robots. 
But Sandra is really great at sensing when people need a hug or when they’re not really paying attention to what she’s saying. This makes her a wonderful person to be around most of the time: She really does have a positive, loving energy that fills the whole room whenever she’s around. And this also makes her a pretty great liar. 
My friends never believe me about this. “You’re being dramatic,” they say. “She’s probably not doing it on purpose!” Anyone who says this has not been harangued by a persistent 50-year-old who will not rest until you drive her to Borders.
“Sandra says you’ll drive her to the bookstore,” my mom would inform me as I re-read "In the Hand of the Goddess." 
“News to me,” I’d say. “I’m busy!"
“Well, you told her you’d do it, so you have to do it!” she’d snap. 
Sandra would come in as my mom left, beaming. “You’re taking me to Borders?!”
Of course I am. I’m not a monster. Dammit, Sandra.
A year ago, Sandra was diagnosed with early-onset Alzheimer’s. I’m no mental health expert at all, so I may have misunderstood all of this, but it’s been manifesting itself a lot like paranoid schizophrenia.
Sandra hears voices all the time now. They tell her that she can’t go on the computer, that she can’t watch TV anymore. She sees people sitting on the closed toilet seat, snarling at her and telling her she can’t come in. No more “traveling.” She’s afraid to go get the mail or take the dog outside or do anything, really, except sit in her room and stare at nothing. 
I was away at school when the voices first started talking to her, and the change in her when I came back was gut-wrenching. Sandra used to ramble at me about the movies she’d seen and what she wanted for her next birthday. Now, nothing. Silence. Or worse, when she did talk to me, she’d barely look at me. She didn’t really know who I was anymore.
Her emotional intelligence hasn’t gone away, though, which makes it almost worse. She can tell that we get upset when she talks about the voices, so she’s gone almost non-verbal as a response. Or she’ll lie about them: hem and haw about something as minor as going to get frozen yogurt.
“I’m not hungry,” she’ll say, scratching nervously at the bone above her wrist. “I don’t want to go.”
If you know Sandra at all, you know this is grade-A bullshit. But she’ll stick to her guns until you ask her outright, “Is someone telling you not to go?”
“The man is,” she’ll mumble. 
“What man?”
“I dunno.” Great.
I can’t imagine feeling like that. She knows something’s wrong, but she doesn’t know exactly what, and it scares her. Sometimes, she reacts violently: She’ll destroy her room, ripping down her WWF posters or smashing the Karen Carpenter records she’s carefully curated over the years. 
Last July, when I was living in San Francisco, my mom called. Sandra had had a particularly bad “episode:” my mom didn’t go into details, but it had been enough to make my normally unflappable mother decide to drive her to the emergency room. My mom didn’t want sedatives for her, she explained to the nurse; she just wanted something to dull the anxiety, just so Sandra wouldn’t be so terrified of what was happening in her skull.
No dice, the nurse told her. Intellectually disabled people had to be seen by a specialized psychologist or not at all. 
“Please,” my mom begged. “I just want her to be able to sleep.”
The nurse consented to give Sandra a psychological evaluation. When they asked whether she heard voices, she said, “No.” When they asked if she did what the voices told her, she said, “No.”
“I can’t prescribe anything until she hurts herself or someone else,” the nurse told my mom. “And she says she’s not hearing voices, anyway.”
“But she’s lying,” my mom said. “She hears them all the time! And she does do what they tell her!”
“Do you really think she’s capable of lying?” the nurse snipped. 
My mom went home in angry tears. Sandra had to wait two weeks before she was able to get any semblance of medicated ease. 
Incidents like this are why I was left sobbing over my keyboard at stories like that of Misty Cargill, an Oklahoma woman who was denied a kidney transplant for her mild intellectual disability. Some doctor, who had never met Misty, determined that she wasn’t worthy of a life-saving kidney that could have gone to someone without a disability. And she died from it.
What if Sandra had lashed out physically the night my mom took her to the ER or any other night afterward? She could have died, too, because that nurse didn’t deem her worthy of even a second glance. 
I’d like to think that if I started hearing voices in my head, people would take me seriously when I or my legal guardian asked for anti-anxiety medications. Because Sandra was born with a lower IQ, though medical professionals decided that her word wasn’t good enough. 
I’ve always wondered how Sandra perceives herself. I never asked her how she felt when my brother Mikes and I grew up and didn’t want to play hide-and-seek anymore. I never asked whether she could even tell she was different, or whether she thought the rest of us were just unobservant, unemoting jerkwads who didn’t walk slowly enough for her to keep up with us.
I’d like to say it was because I was respecting her feelings. I’m also really scared that I’m just as bad as that ER nurse. I know she can lie, but I’ve skipped through life thinking she’s incapable of resentment. So I’m terrified that on some level, I, too, have stripped Sandra of her agency and dignity as a human. 
She may have the sunny smile that’s become the face of Down Syndrome, and she also deserves the choice to be cranky, needy, angry, suspicious, manipulative and scared. Her Alzheimer’s is reminding me of that now. It horrifies me to think I might have forgotten, or never known at all. 

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