Priorities

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“As you grow older, you’ll see white men cheat black men every day of your life, but let me tell you something and don’t you forget it – whenever a white man does that to a black man, no matter who he is, how rich he is, or how fine a family he comes from, that white man is trash.” –Atticus Finch, To Kill A Mockingbird

Sometimes, I procrastinate posting something for so long that it becomes relevant again, or my thoughts on the matter actually change or mature. Today’s one of those days, so, huzzah, I suppose?

I sometimes have trouble getting worked up about things I should probably care about (positively or negatively). One that comes most immediately to mind is “inspiration porn” stories of people doing something nice for a kid with disabilities (This story of a boy with autism getting put in his school’s basketball game and scoring many points is a really good example; or any story of a high school senior with Down syndrome being made Homecoming Queen/King). Doing nice things for kids with challenges is just as much (if not more) about making us feel like we’re good people as it is for the benefit of the person. And, if you don’t interact with disabled people in your day-to-day and the only time they cross your path is when they’re bagging your groceries or when one of your friends posts a story like this on your Facebook wall, you may be led to the logical but perfectly erroneous impression that the best thing you can do for a person with special needs is give them one overwhelmingly awesome experience of awesomeness and make their day. I don’t have the patience for people who indulge in that kindhearted but misled attitude. I love the effort, I’m glad you want people with disabilities to have good experiences, and if you want to share them on Facebook that’s fine, but they just don’t generally touch the happy space in my heart.

On the other end, I had a really hard time getting worked up back in mid-August when a family was sent a shockingly horrendous letter about their son, a 13-year-old boy with autism.* Again, this should be right up my alley, right? Defending people with disabilities is right in my wheelhouse. If I was a superhero, I would haunt the places where adults with disabilities hang out and just wait for neurotypical teenagers to show up and start taunting them, and then I would go all Batman on their asses. But the letter really didn’t horrify me, for two contradictory reasons: one is that I think a lot of people are dismissive or hostile or annoyed by people with disabilities, though they’re obviously less caustic about it than whoever wrote this letter. To all the people who were shocked and appalled by the letter, the dark and cynical corner of my heart wonders, where have you been? Where were you in middle school when kids were calling each other retarded? Where were you when Ricky Gervais was pulling “mong faces” on Twitter, and then dismissing the opinions of everyone who was insulted by telling them they were oversensitive? Where were you when Ann Coulter called the President of the United States a retard? Where were you when Margaret Cho said that all the remaining eggs in her ovaries were “retard babies”? (And to all my queer, liberal, feminist, fat-positive friends: Do you understand why I cannot, will not, indulge in your Margaret Cho love?) Do you see how not caring about the language used to describe disabled people leads directly to bullshit like this? But on the other hand, and contradictorily, I also know that the letter writer’s feelings are atypical of the general population. I know that pretty much everyone, once they meet my sister, loves her and wants her in their lives. They want what’s best for her. They want to protect her. They want to keep her around. My sister is extraordinarily well-loved, and that love provides a buffer for me (and for her) when it comes to hostility from misinformed and maladapted strangers who don’t deserve to know her anyway. Haters gonna hate, as they say.

So yeah. Don’t really care about your hate, don’t really care about your feel-good human interest story. I’m tired of it, I’ve heard it before, I want us to have a new discussion. I have bigger worries on my plate than people thinking my sister is a one-dimensional happiness angel, or even people who think she’s a one-dimensional waste of oxygen.

All you people who post the above stories on Facebook, who want to make a difference in the lives of people with disabilities: Where were you when voters in my county defeated a ballot measure that would have eliminated the county wait list for services available for adults with disabilities, and improved their quality of life? Where were you while the rate of sexual assault of disabled adults got frighteningly, absurdly high? Where were you when my parents tried to figure out how to financially support my sister when they die, so she doesn’t end up homeless or in a state-run group home or dead? Where were you while Goodwill was paying prison wages or less to their disabled employees thanks to a law that apparently hasn’t been updated since 1939? When disabled adults started living in poverty and homelessness at several times the national average for neurotypical adults?

My sister needs people who love her and care for her, yes. She needs people who respect her and treat her like a person. And she has that. But that’s not all she needs. She doesn’t need people cooing and coddling over her. She needs people who will make sure that her safety and her financial stability are high on the list of priorities. Who know that her quality of life on a day-to-day basis matters. Who won’t let her fall through the cracks. And on that score, somehow, I don’t think I have a hope of getting a million Facebook likes. I don’t have a prayer of convincing anyone in Washington that any raise in the minimum wage should also close the loophole that allows disabled adults to get paid so little. I feel like there’s nobody in the world in between my sister and a life of poverty and danger except for me and my family. And that’s not a confidence-inspiring feeling. That feeling that Samwise Gamgee had, looking down into the pits of Mordor, knowing that all that stood between Sauron and the destruction of Middle Earth was two small hobbits? And moreover, knowing that the responsibility of keeping Frodo safe fell on him, and him alone, in that whole big bad world? Yeah. That’s the feeling.

*The response of the boy’s mother is worthwhile reading, more worthwhile than the original letter, anyway.

when she was born

megbabyeditWhen she was born, my father’s heart broke, and one of the things that fell out and rolled under the couch and was never found was the the idea that we can make comforting assumptions about how our children are greeted into this world.

The doctor who diagnosed her with an intestinal blockage gave my father the option of withholding the surgery and letting her die, so that he wouldn’t have to go home with a retarded child.

And when my dad called his mother to tell her about her new granddaughter, she tried to console him by saying that, “At least she’s not a mongoloid.” And he had to take a deep breath and say the words that made it true: his daughter was a mongoloid. Was retarded. Was damaged.

But when he called his friends Artie and Margie, and told them, they said,

“If you don’t want her, we will take her.”

We kept her.
She turned 27 last month.

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Retraction

Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
Winston Churchill

Over a year ago, I made this post about the word retarded and why I used it.  In all but one way, I stand by everything I said in that post.  I hate that “retarded” is used as an insult, and wish it could be used in a neutral (or even downright positive) way.  I still think that if we get people to stop using the word “retarded,” if we cede it as an unacceptable insult, people will just move along to something even more offensive and unacceptable (“Downsy,” anyone?).  The problem isn’t that people call other people retarded, the problem is that people think that retarded people are worthless.

I still think all that.

I’m going to stop using the word anyway.

I committed one fantastic, fatal, and essential error, and for that I apologize to everyone (neurotypical or not) who has ever been offended by anything I’ve written on the internet stemming from my use of the word (unfortunately, there’s no way for me to retrace my steps and delete all my offensiveness).

The error was that in this instance, it doesn’t matter how I feel about the word retarded.  The fact that I have a sister with Down syndrome doesn’t make my feelings on this matter important or even material.  I have been told–repeatedly, and by many people with cognitive disabilities (as well as by people who don’t have cognitive disabilities but have been labeled retarded anyway) that the word is offensive and they don’t like it.  I might feel that the word is offensive not just because it’s offensive, but because people have decided it’s offensive (which I think are two different things), but it doesn’t matter.  It’s not my right to offend legions people with disabilities in the name of educating people without them.  People with disabilities have enough to worry about without me piling on.  I can find other ways to educate.  An essential part of advocacy, of allyship, is listening to what the group I’m allied with wants from me, and in this particular area, I failed spectacularly.  I’m sorry.  I will stop using the word.

Ironically (and in the interest of full disclosure), this whole revelation transpired from an internet discussion in which I unapologetically (and still unapologetically, at least so far) defended my use of the word “handicapped” when describing a restroom stall (maybe I would have been less impatient if I had used the word to characterize a person, and not a bathroom).  In the course of the discussion, I mentioned I had a sister with special needs (not to justify myself, but just to clarify that I’m not a total newbie when it came to disability issues), and was subsequently called out for using the term special needs.  I pointed out that the term (which I consider to be an entirely different term and with different connotation than “special,” which I agree is condescending and defensive) is widely used both in professional circles and by parent groups, and was told that just because a term is in wide use, that doesn’t make it not offensive to the people being described (point being that the group in question should be able to choose the words they want to be called).

Fair point.

My defense of myself (other than my repeated insistence that I do not speak of people in the same way that I speak of toilets) is that handicapped doesn’t have the same consensus of offense that retarded has.  I know people (both on the internet and off) who don’t care about the word handicapped one way or the other, and some who use it positively.  Similarly, I know of very few people–no, strike that, I know NO people–outside of this particular person that the term “special needs” is offensive.  If the disabled community demonstrated the same cohesiveness about “handicapped” as about “retarded,” then I would be more inclined to stop using it.  Same with “special needs.” I want to listen to people about how they want to be labeled, but I admit to having trouble being able to tell (and, honestly, I think sometimes the people themselves have trouble telling) when I am listening to one person speak for themselves, and when I’m hearing one person articulate a position that represents a fair majority of a population.  So, this person called me out for using a handicapped stall, and ended up swearing me off the use of the word retarded, even though that word never came up in conversation.  Funny, that.

I try to be flexible.  My default adjectives for minorities tend to be queer, black, hispanic, etc.  I have gay friends who describe themselves as fags or dykes.  But if I’m with a gay person who doesn’t like the word fag?  I don’t use it.  All they have to do is tell me.   If I’m with a person of color who identifies as African-American?  I will say African-American around them, not black.  If I’m with a person of color who identifies as black, I’ll call them black.  It’s easy.  It’s not hard.  I should be able to do the same when describing non-neurotypical folk.  It gets hairy on the internet, though, because I may be speaking about or to a person without having any idea what sort of adjectives they prefer.  But still, I’ll try to improve in the future.

Also, I’m aware this post has a self-apologetic and defensive tone; I will simply admit I’m a self-apologetic and defensive person.