A Mutant Origin Story

mutieI’m near the younger end of my cousins. I have four cousins younger than me, and twelve that are older, so when I was a kid and we went back to Louisiana to visit them, I was almost always one of the youngest ones there. So sometimes, while my parents talked with their siblings, I ended up doing not-entirely-age-appropriate stuff to entertain myself. Like when I was seven or eight and ended up in my cousin Daniel’s bedroom digging through his X-Men and Spider-Man comics and reading them. I didn’t know anything about the X-Men canon. It was in the middle of Chris Claremont’s epic run on the series, and a lot of it went over my head, but a lot of it settled in my subconscious, and planted seeds in my memory. I certainly learned the names of Cyclops, Storm, Nightcrawler, Wolverine, Kitty Pryde, and Jean Grey. When Fox started airing the X-Men animated show in 1992, I was all over that shit like white on rice. The universe became clearer, and I started reading X-Men comics more regularly (but still pretty piecemeal, since I didn’t have access to a comic book shop) and assembling the universe in my head. The X-Men and the Evil Brotherhood of Mutants. Sentinels. Senator Kelly. William Stryker.

(Note: It was a mystery to me what X-Men story I had read first, because all I had was a memory of a single panel: of Nightcrawler lying unconscious and bleeding from his ears while the other X-Men stand over him in concern and a vague understanding of mutants as an oppressed minority rather than a crew of superheroes. It wasn’t until recently that I read God Loves, Man Kills by Chris Claremont and realized that that was the comic I had read decades earlier at my cousin’s).

Early on in the Fox series, there’s a plotline in which two scientists discover a “cure” for mutantism. I forget how the X-Men find out about it, but they do, and their reactions all fit their personalities and personal histories. Wolverine immediately sees it as a tool to eliminate mutants’ powers and neutralize the perceived threat of mutantkind; Rogue, not so much. As one of the mutants whose powers are both an ability and a curse, Rogue (as well as Beast) tend to be the most ambivalent about their mutations, and tempted by the idea of a cure. Peaceful, optimistic Charles Xavier disagrees with the very premise. “Don’t say ‘cure,’ Moira. Being a mutant isn’t a disease. It’s something you’re born with,” he tells Moira McTaggert, one of the scientists. (This is the same plot line that Joss Whedon would handle for his run writing the Astonishing X-Men comics in 2005). It is, basically, the neurodiversity argument, only written in 1992 for a grade school-level audience.

I think it’s this storyline (and others like it), rather the ones that deal with a planet in danger or intergalactic space war, that drew me to the X-Men. Pretty early on, I picked up on threads that I translated into the X-Men being code for people with disabilities. One of the earliest questions that I remember being asked about my sister (besides “What’s wrong with her?” and “What’s it like having a sister with Down’s?”) had to do with whether I would change her if I could. Magically suck the extra chromosome out of every single one of her body’s cells. I don’t remember how young I was when I first heard about the high abortion rates for fetuses with Down’s, but it’s been in my head since at least middle school. And even though I never witnessed people being cruel to my sister, I did witness neurotypical classmates of mine being cruel to disabled kids at my school, and being mocking in general of anyone in special ed or remedial classes. It became really easy, in my head, to equate “Do mutants have the right to exist?” and “Do people with disabilities have the right to exist?” To see “retard” and “mutie” as linguistic cousins. The fear and hostility that mutants experience when they interact with regular Homo sapiens sometimes feels familiar when I hear people talk about people with disabilities. The parallel ran so deep in my head that I was honestly surprised when I got to high school and college and started talking about the X-Men with other people and realized that for them, the parallel was between straight people and queer people, or white people and people of color. That there might be many parallels had honestly never occurred to me, so deep and solid was my understanding that “mutant” was code for “disabled.” (This was before I read Chris Claremont’s statement that for him, mutants could stand in for any outsider population. In the introduction to the trade paperback version of God Loves, Man Kills, Claremont says, “Mutants in the Marvel Universe have always stood as a metaphor for the underclass, the outsiders; they represent the ultimate minority.”)

It crystallized slowly for me, over the course of years. Not all–or even most–storylines have to do with mutaphobia, after all. The X-Men fight against Magneto and fight against the Shi’ar (and fight with the Shi’ar), and there’s the Phoenix Saga and numerous interpersonal dramas and secondary mutations and all that. To read the X-Men is to get to know them from the inside first, their individual histories, their powers, how they feel about those powers, their flaws and foibles, their courage and tenacity, their creativity at solving (or blasting through) problems. You know the X-Men as individuals, make friends with them, and as the stories pile up it slips your mind that the rest of the comic universe world doesn’t see them as individuals, but as a blanket population. You don’t always have to be aware of the fact that a small but significant percentage of the non-mutant population hates mutants, fears them, and wants them dead.

I came to knowledge of my sister’s disability in much the same way. I was three–almost four–when she was born, so I didn’t have any concept of what Down syndrome was. She was just an eating, pooping, crying (and eventually giggling) machine. Your basic human baby. By the end of elementary school (when she would’ve been around seven and me around eleven), I had a pretty good handle on the definition of Down syndrome, but I had an even better knowledge of my sister. I knew how much she loved Barbie and Full House and that cheese was a fundamental dietary building block. I knew her love and her smiles and her stubbornness. I knew how much she was distressed by bees (and flies that might be bees) and automatic garage doors and anybody crying. I knew her. It’s hard to put all that aside and look at my sister from an outsider’s point of view and remember that there’s people who think that my sister is a waste of space. That she’s stupid. That she’s a burden on society and/or my family and that she shouldn’t exist. And there’s people out there who don’t think those things, but who are happy to tell me such things over the Internet because they know it’ll get to me.

I truly believe my sister is a gifted person, though not in the academic way that most people think of when they label kids “gifted.” Her gifts are of a more abstract sort: a deep and instinctive knowledge of chesed, of loving-kindness, of human joy. But the same genetic error that gave her those gifts also gets in the way, too. Gets in the way of her desire to live independently and have more friends. Gets in the way of my family’s desire that she live with economic stability and a reasonable amount of personal safety. Would she welcome the chance for a cure? I honestly don’t know. Like Rogue, her extra chromosome is both a gift and a curse. She can do many amazing things, but also misses out on a lot of opportunities that are easily available to “normals.”

It wasn’t until much, much later that I realized the other parallel. The angry one.

Because people with disabilities get abused at disturbingly, shockingly, unacceptably high rates in modern America. And every time I see it, in the news or wherever, it makes the muscles in my arms harden, and I stop breathing, and start looking for something to hit. Of course there’s never anything to hit. In those moments, though, I wish I was the mutant Pyro, so I could literally set the world on fire. In Whedon’s Astonishing X-Men, when Dr. Rao announces a cure for the “mutant disease” on television, Wolverine’s claws come out and he can’t retract them. “She called us a disease. Do you know how that feels?” he says.

Yeah, Logan. I think I do, at least a little bit.

I would set the whole world on fire. I understand Magneto’s fury in the face of human intolerance and bigotry, and why he’s given up on humans and on Charles Xavier’s idealism. Xavier wants to teach people tolerance and compassion, but that is the long fucking way around the problem, and in the meantime people are straight up fucking dying and why do I have to talk to you about not calling people retards when those same people are getting murdered? I don’t have time for that bullshit. It would be so much easier, so much more satisfying, to just throw cars at people and silence them.

When it was my own sister that got hurt, it didn’t feel like enough. Her getting hurt by somebody else felt like the end point of a long chain of dealing with the stupidity and apathy of “normals” and the inevitable vulnerability and invisibility that disabled people experience because of it. There had been decades of people asking, in so many words, “Why does your sister exist?” And then someone came along and decided that she existed to be his victim. He picked a vulnerable, invisible person, and he did it on purpose, because he knew he could get away with it. He thought she wouldn’t fight back. And he was largely right, because how do you teach somebody to defend herself when her default setting is that everyone is her friend?

And that is when I understand the anger that allows Magneto to channel enough power to lift an entire football stadium into the air.

That is when I understand the Scarlet Witch’s anger and desperation when she says, “No more mutants.”

That is when I understand Pyro throwing fireballs, because that’s what I would do, that’s what I wanted to do, to set the whole fucking world on fire for leaving my sister helpless and invisible and vulnerable to somebody who decided to hurt her.

I want to incinerate the world. I want claws like Wolverine’s. Because that’s the biggest thing that X-Men in the Marvel Universe have going for them, that’s their trump card. They can do astonishing things. Uncanny things. Amazing things. They can save the world when no one else can. And that’s a really good argument in favor of their right to exist. When all else fails, when morals and ethics and human compassion fails, mutant usefulness is still there. My sister, and people like her, aren’t stupendous. They aren’t awe-inspiring. They do not astonish, unless you’re willing to examine something quieter and more subtle than telekinesis. Given the chance, much as I like to imagine myself as one of Xavier’s noble X-Men, I’m probably closer to one of Magneto’s Brotherhood of Evil Mutants. More interested in defending, in fighting, than explaining. At least where my sister is concerned. Because it makes me so, so angry, the way this world treats the most vulnerable people in it.

But there’s this: I think Magneto feels very alone. At least, on days when I want to blow up the world, that’s how I feel: like nobody cares about this–either not enough or not at all–except me. And if their apathy was neutral, it wouldn’t matter. But apathy isn’t neutral. In the vacuum of apathy, people like my sister get hurt. They die. They’re left all alone. And that is when I have to go for a walk and calm down until I can hear the Charles Xavier voice in my head again. The one that insists that normal humans are worth teaching. The one that believes that humans and mutants can co-exist. The one who would never commit genocide, even though he has the mental power to make everyone’s brains ooze out of their earholes. I remind myself that I’m not alone. That there’s a lot of people–and not just in my family, either–who love my sister, who want to help her, and who are helping her.

My sister loves me. And I love her. She never gives up trying to do anything you ask her to do. There is nothing on this earth that could shake her faith in me. And maybe that makes me selfish, to want to keep that. Almost certainly it is. No more selfish than keeping her around because she’s the only one powerful enough to fight the Brood, but hey. We haven’t had much luck with convincing the world that the ability to love is enough of a utility to exist in a capitalistic society.

Sometimes I think about Ian McKellan (who is, as far as I’m concerned, Magneto’s alter ego) and the fact that, despite dealing with homophobia on a personal and professional level his whole life, he has not himself turned into a supervillian. The fact that, in spite of all they’ve been put through, oppressed minorities in this country (whether it’s disabled folks, LGBTQ folks, mentally ill folks, people of color, etc etc) have, without exception, never turned into evil supervillians. (I know I’m generalizing here, but keep in mind that this is what I tell myself in order to not let my heart get eaten by a murderous rage that burns with the heat of a thousand suns and cut me some slack.) Sure, there’s warlords in Africa and drug cartels in Mexico and Kim Jung-un in North Korea, and they cause enormous amounts of heartache and human damage, but they’re not exactly on the world-endangering level of Dr. Doom or the Red Skull. From a power and world domination standpoint, Barack Obama is the closest thing we have to a supervillain. Maybe Donald Trump. From the oppressed minority contingent, we don’t get Magneto. We get Martin Luther King, Jr.; a human of intelligence and courage that we certainly did not ask for, let alone deserve, but are so fortunate to have had in our midst. We get Helen Keller and Harvey Milk and Nelson Mandela. Bayard Rustin and Vincent Harding and Temple Grandin. Artists like Toni Morrison, Leslie Feinberg, Maya Angelou, Jeremy Brett. We get the beautiful people that I know from the progressive/leftist/anarchist organizing community in Denver, who have taught me about putting love into action and validating and standing up for yourself and others. We get community groups like the Black Panthers and the American Indian Movement and the AIDS Quilt and the Madres de la Plaza de Mayo. And that’s just in this past century. The world is full of thousands and thousands of heroes that we don’t deserve, and often don’t recognize while we have them among us. And that is the truly amazing, awe-inspiring, human superpower: The fact that, in the face of oppression and systematic violence and apathy, more often than not, humans choose to love and hope. They default to trying to teach other humans to be better. The fact that we have as many heroes as we do should send us all to our knees.

Thousands of Charles Xaviers walking among us, disguised as regular people. I like that.



“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.


Q Line adventures

IMG_0786.JPGI’ve seen the same woman on the Q a couple times now, mostly in the early morning. She sits in one of the end seats, the ones that are only big enough for two people. She piles stuff next to her, as well as on both seats across the aisle, then falls asleep. She either genuinely sleeps through or else ignores the people who try to wake her up to move her stuff so that they can sit down.

Usually, she wakes up at some point and thinks some of her bags have gone missing, and starts accusing the black folks nearby (never white folk, only folk of color) of stealing her bags. I’m not sure why she doesn’t fall asleep with her bags closer to her (or not fall asleep on the train), or what’s even in her bags that she needs to keep such close track of them. Usually everyone on the train ignores her.

Interesting how mental illness plays out. I don’t know how valid it is to compare my experience to hers (probably not at all), but if I was going to run away, be homeless, I’d be the sort of homeless person that thinks she’s invisible–not the sort that thinks everyone cares what’s in her plastic bags (that seem to be full of other plastic bags).

I wonder what homeless people accumulated before our society started throwing out so much half-used stuff.

One morning, a woman got into the traincar, sat down, and in a dejected voice announced that she and her husband were unemployed and homeless and asked (again, dejected) if anyone could help them out. She didn’t look at anyone; she stared at a spot on the floor of the car and spoke in a monotone.

Nobody moved. In New York cattle car fashion, nobody even looked at her.

“Ladies and gentlemen I know this is difficult times but ladies and gentlemen my husband and I is homeless and can’t work and it’s hard being homeless and asking people for charity, for example ladies and gentlemen I’ve been on five trains so far this morning and we don’t have enough money yet for a place to stay tonight.”

In the ensuing silence, everyone avoided eye contact. I caught a few people who, like me, were scanning the car to see other peoples’ reactions.

“Ladies and gentlemen,” she started again, and I wanted to say no, please, you’re passing the point of pathetic-but-tolerable and into the hinterlands of “annoying blubberer who is disrupting my train ride.” “Ladies and gentlemen I don’t think you know how hard it is to be homeless in this city and to ask for help and have people look at you like you’re nothing I hope you all know you’re coldhearted bastards with no compassion and that this is a very unChristian nation. Ladies and gentlemen I hope you have a very nice day but you’re all coldhearted bastards.” And with this pronouncement, the train slid into the station and she left, head held high.

Not as entertaining as the drunk homeless guy who started yelling that we all hated black people and that’s why we wouldn’t give him money, and continued ranting even after a (black) passenger told him that race was a false construct that didn’t even exist and he was just using his race as an excuse, and only got louder when another (black) passenger started scolding him for being “a drunkass nigger who needed to sit down and shut up.”


Just as an addition to the last post, from this Guardian UK article about the abuse disabled people face:

“The really serious cases catch the headlines. But what about the constant drip, drip, nag, nag of the so-called ‘low-level’ harassment that many disabled people face on a daily basis? It ruins their lives. They don’t have the confidence to go out. It undermines their ability to be part of society. It makes them behave differently.”  –Michael Smith, commissioner for the Equality & Human Rights Commission, and wheelchair user

Lebensunwertes Leben

Trigger warning: This post contains references to sexual assault, degrading comments about people with disabilities, and my own personal desire to hit certain people with blunt objects. (Disclaimer to the authorities: I will not actually hit people with blunt objects, but just write about it in a cathartic way.)

I’m sitting in a coffee shop on 75th and Broadway in New York, watching the foot traffic outside on the street.  I’m sipping my coffee.  I am supposed to be doing homework.  Instead, I am imagining setting the whole street on fire.  All of them.  The little old lady with her groceries in a trolley, the man tying his pit bull mix to a railing so he can come in the shop and get coffee, the nannies and their little kids, the cabbies, the FedEx delivery man.  All of them.  Because for the first time in my sheltered, sheltered life, I could see the straight line of connection between people who don’t give a thought one way or the other to people with disabilities, people who mock people with disabilities, and people who purposefully harm people with disabilities.  Somebody hurt my sister.  Somebody hurt my sister, and I blame the whole world, everybody, for not recognizing how evil people are on the one hand and how vulnerable she is on the other.  People who think that now that we have integrated public schools, everything’s fine.

Everything’s not fine.  I’m not fine.  My sister’s not fine.  My parents aren’t fine.  And if I had my way, none of the people strolling up and down Broadway would be fine, either.  I know that setting a city on fire is not productive, but I don’t know where to go.  When I Google “special needs and sexual assault,” most of what I get in return is news articles citing instances in which disabled adults were assaulted, a few discussion forums mocking said assaults (choice quote: “Sexual contact is a beautiful thing, and this will be her first and last encounter, since she’s a downer.”).  If 85% of women with cognitive disabilities are sexually assaulted in their lifetimes, why can I find NO RESOURCES specifically geared towards people who occupy the middle of the Venn diagram made of “Sexual Assault Victims” and “Cognitively Disabled”?  Do people who specialize in counseling sexual assault victims know how to talk to somebody with Down’s?  Do people who know how to talk to people with Down’s know how to talk to sexual assault victims?

Does the rest of the world know, or care, that my sister was hurt in this way?

It’s hard for me to not be polemical.  It’s hard to not be extreme.  It’s hard, because I can’t destroy the man who did this to my sister, to not want to destroy everyone else too, everyone who contributes to this society in which my sister doesn’t matter.

When the Allies liberated the death camps in 1944, hundreds of thousands of Jews and Gypsies and political prisoners were freed.  Thousands of imprisoned men who had been imprisoned as homosexuals remained in the camps, because being gay was illegal to the Allies, just as it was to the Nazis.  Jews weren’t criminals (so they were freed), but fags were (so they weren’t).

Nobody freed the physically and/or mentally disabled from the camps.  Why not?  They were already all dead.  The Nazis had killed them, 200,000+ between 1939-1945.  They had photographed them and imprisoned them and experimented on them and sterilized them, and then they euthenized them.  Hitler practiced his Final Solution on the retards before he did it to anybody else.  They called it a “mercy death.”

Does 200,000 deaths compare to 6,000,000?  No.  I’m not saying it does.  It’s less than the number of people who died in the Battle of the Somme in World War II.  But there’s a general silence on the brutality with which people with developmental disabilities have long been treated by Western civilization, and it probably started in 5000 BC when babies with Down syndrome being left exposed on hillsides in ancient Greece.  If people don’t know how people with Down’s were treated in the 1940s (and not just in Germany, but all over Europe and America), why should they care how they’re treated now?  How do we get to see that when we talk about caring for people with special needs, we need to include adults in that discussion, and not just children?  The amount of structure and socialization in my sister’s life has decreased dramatically since she graduated high school, but her need for such services hasn’t, and as a result, she’s more vulnerable–in all kinds of ways–than she was ten years ago.  Who suffers the most when the economy takes a downturn?  We could argue about it all day, but my money’s on the people who already can’t defend themselves, who have few  resources, who are vulnerable–people already below the poverty line, people with debilitating mental illness, people with cognitive disabilities who rely on SSI and social nets to maintain their quality of life.

Tell me why I shouldn’t be enraged.  Really, tell me why.

This whole string of events has gotten me to swear off the word retarded just as much as anything else, to be honest.  Indifference leads to harm.  It led to harm.  My sister was at work when this happened, at a place that is experienced at employing people with cognitive disabilities.  If they couldn’t keep her safe, who can?

The most important things, says Stephen King, are the hardest things to say.  I still don’t know how to talk about this.  I don’t even know what I want, really.  I don’t know if I’m violating my sister’s privacy in writing this.  I don’t have any answers for anybody.  I don’t have any resources.

But 85% is far too large of a percentage for any society who calls itself ethical to tolerate.


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.

the question of inclusion

i was just listening to an interview on Fresh Air (<3 Terry Gross) with ian somebodyorother, a (canadian) father whose son has an extremely rare genetic condition that causes global physical and cognitive delays. his son is ambulatory, but can't feed himself (he's had a feeding tube since he was a neonate; he's 15 now) and can't speak or understand language. he just recently published a memoir on raising his son (the boy in the moon, i think it's called).

when his son was 10, they found a residential home for him, because caring for him at home was just too hard. it made me think about how our society deals with people who can't care for themselves, be they physically/cognitively impaired children, or young adults, or neurotypical elders.

up until 40 or 50 years ago, if you had a kid that had "something wrong" with them (like down's syndrome), the recommended practice was to put them in an institution and forget that they existed. kids didn't live long in places like that; i think the life expectancy for someone with down's was about 30 yrs old. somehow we thought that this was a result of their extra chromosome, and not us killing them through neglect, but whatever. it's one of the reasons why nobody really knows how long a person with down's might live–the current life expectancy is hovering around 50, but then, that's about as long as it's been since the culture shifted to keeping handicapped kids at home and nurturing them, so we really don't have an older generation to set a realistic bar. if she stays healthy, my sister could easily live as long as me.

anyway, yeah, since the late 1960s there's been inclusion and mainstreaming and handicapped kids are expected to be kept at home and nurtured. federal law requires that special needs kids have an education, they're eligible for medicare, there are (in theory) support systems in place for people who can't care for themselves. which of course is great, as far as i'm concerned. but sometimes it feels like the inclusion is reluctant, or haphazard. just about every special needs parent i've ever talked to (or whose blog i've read) talks about battling their child's school district to make sure their kid gets the help that suits them best. there's always questions about what's best for the child. there's always gray areas. every special needs kid is unique. but listening to this dad talk, it was just so overwhelming to think of what went into caring for his kid, and how much he and his wife essentially had to do on their own–and they are an educated family in a first world country with universal health care and ample financial resources. i think there's a subtle cultural expectation now that parents of kids with special needs should be able to do it all, and do it largely on their own, and if they admit that they can't, or ask for extra help, then they're bad parents. this dad wanted to put his son in a residential care facility when his son was still a toddler–but in order to do that, he would have had to get himself declared unfit, and given custody of his son to the state. his son can't talk. he must be fed through a tube. he's prone to violent outbursts and self-harm. and somehow we expect two parents, with no specialized training whatsoever, to be the best people to handle him, and to be able to do it largely on their own. to stay up with him every single night (mother and father alternated nights) to make sure he didn't hurt himself or tear out his feeding tube. to deal with the exhaustion and the stress and the whatever. (significantly, the son's emotional health actually increased after he went to live at the home, and he had care from a larger number of people who were, collectively, less stressed out and exhausted because the burden was shared.)

i don’t mean to sound like i’m tearing down parents. i do think that parents know what their kid needs–these two parents know more about their son and the manifestations of his syndrome better than many doctors–but aren’t always the best people for the actual execution, if that makes sense. if a parent is totally overwhelmed because he has only slept every other night for the past decade, he should be able to say that, and he should be able to find a place with more support for his son, without having to say that he’s a bad father. because he’s not.

western culture has come a long way when it comes to treating people with cognitive delays humanely. but i still think we sort of fumble around. we still haven’t figured out exactly what’s best. fifty years ago, we sacrificed the children for the sake of the family; these days we’re in danger of sacrificing the family for the sake of the child (see: divorce rates of parents with special needs children higher than the national average). there has to be a system that is equitable and healthy and compassionate for all involved, and unfortunately, i think it involves taking a step that i don’t see our country taking any time soon: admitting that caring for people–not only people with cognitive delays, but ALL people–is not just the job of the individual family unit, but of society as a whole. admitting that there are kids out there who need more help than just a mom and a dad and a special ed teacher can provide. and then providing that, not begrudgingly, not with backhand assessments on the family’s “failure,” but gladly, because this is what needs to be done. this is really how we make sure that no child is left behind.

eternal question

My first week back in town, I went to pick up my little sister at Target, where she works one shift per week (reminder: my sister has Down Syndrome). She met me in the little cafe area, and she had to do something with her purse (take her wallet out/put it back in), and actions like that always take her a few minutes, because her fine motor skills aren’t the best. And because she’s just a slowpoke.

So I’m watching her, but also looking around, and I see a boy (between 8-10 yrs old) staring at my sister. I’d say this happens fairly often. He didn’t have a look of distaste or curiousity or amusement on his face. He wasn’t obviously saying “What’s wrong with that girl” in his head. He was watching her because she was different. Trying to figure it out, maybe. I have no idea if he knows what Down Syndrome is or not. Sometimes, even people who know what a person has will stare, just because they’re different, and I think that (on some level) it is in our nature to want to figure those things out, whether or not it’s our business (a trans person’s personal history is no business of mine if they don’t want to share it, as long as I know their current preference for pronouns and their name, but that doesn’t stop me from wondering).

I’d say that this is most often what people do with Meg who don’t know her: they stare. Without even realizing they’re doing it. It’s not just kids. And I never know what to do. Do I ignore them? Do I address them? I mean, in a way, it’s such a teachable moment. All they really want is a label. There’s always part of me that wants to say “She has Down Syndrome. She has an extra chromosome. That’s what’s ‘wrong’ with her.” Sometimes, there’s part of me that wants to say, “Can I help you?” and make it clear that I’ve noticed them staring and that I don’t find it polite. But I don’t think I’ve ever said anything. Usually I act like I don’t notice. With this kid, I stared at him staring at my sister until he noticed me, at which point he hurriedly looked away, knowing he’d been caught, and knowing that he shouldn’t have been staring in the first place. It was so on the tip of my tongue to answer his unspoken question, but I didn’t. So it got me thinking…as much as I rant and rave about non-disabled people–especially those who don’t know any disabled people–need to get on the bandwagon and figure out how to be inclusive and how to be allies, I certainly don’t always behave in a way that invites dialogue or questions or curiousity. I sure didn’t make that kid feel like it was okay to ask questions. And he’s a kid. If he’s going to ask questions, I want it to be now, I want him to figure out as early as possible that retarded people exist, they deserve to be treated respectfully and compassionately, and most of all, they’re not lepers. But it’s hard to balance that impulse with the protective impulse that is my default. The one that says that my sister is not your curiousity. That she is not a visual aid or an educational tool, and that there’s a lot of times (particularly when I’m out shopping) that I don’t particularly feel like being an advocate.

One of the things I try to do most often as a queer ally is to explain to people, as quickly and kindly as possible, the basic definitions and when they’ve said something inadvertantly offensive. This is what a trans person is. This is what a drag queen is. This is what a transvestite is. This is what teabagging is. This is why I don’t like it when you call somebody a faggot, and this is why your use of the word is different than Dan Savage’s use of the word. You’ve just called Chaz Bono “she” three times in two minutes, please stop it. Etc. I do that deliberately because I know my queer friends get tired of always being the educator, and would like to simply exist in the world without constantly having to explain their existence. Doing some of the explaining for them (especially since I, as a straight person, often hear things that the speaker would never say to a queer person’s face) relieves a little bit of that burden. And because it doesn’t affect me personally, I don’t find it onerous.

I know a few people who will advocate and educate about not calling people retarded. If I gave a damn about whether or not my sister gets called retarded, I know I would appreciate that particular form of allyship. But I don’t think this kid had any inclination to be verbally abusive or mocking of my sister, so the “retard” question wouldn’t even have been a concern. And probably a lot of this rant just has to do with me not seeing the allyship, rather than it not being there. But sometimes…I get tired of being the educator/protector/ally all the time. I shouldn’t have to talk about chromosomes in Target. That’s all.

old news

my sister got fired from her job at Target.

when I went to pick her up from work in june, I was approached by her manager, who told me (she had been intending to tell one of my parents, but I was the one there to pick her up that day) that meg had been stealing icees from the food court’s self-service machine. and that this wasn’t the first time. and that they had been giving meg free passes, because she has down syndrome, but that at some point they had to start treating her like every other employee—and any other employee would have been fired by now. (this has been an on again/off again problem for meg, stealing stuff from the food court. we can’t figure out if she forgets after a couple of months, or if she thinks we’ve forgotten.) I guess she went a month or so being careful, and then the stealing started again, so they fired her. and that’s the bare facts. fired for stealing icees that cost $1.17.

my parents (especially my father) seem to be taking what we might call the Honey Badger strategy (Honey Badger Don’t Care). she was only there for 3 hours a week anyway. it wasn’t the most interesting or productive use of her time. my dad’s been lobbying for her to quit for a year or so anyway (welcome to the party, I say, I’ve been wanting her to quit more or less since the day they hired her). but it does bring up for me something I don’t think of very often, which is figuring out where her down syndrome ends and her own personality begins.

one of my favorite blogs is Fighting Monsters With Rubber Swords, written by a father whose daughter has a brain malformation (diagnosed at age 3). I think for him, particularly because he had those three blissful (or not) ignorant years before his daughter’s diagnosis, he draws a very clear line between his daughter and her disability. schuyler’s disability doesn’t effect her personality in the way that meg’s disability does. and it’s not like autism, which seems to creep up and steal children, replacing them with an entirely different child. down syndrome is different. the line between meg and her disability is fuzzier to me. and when she doesn’t do something, sometimes it’s hard to tell if she really doesn’t understand that she can’t do it, or if she knows that we think she doesn’t understand, and takes advantage. did she really not understand that she wasn’t allowed to help herself to icees? or did she think that nobody would notice or care if she did take them?

i do think that meg has a different understanding of property than the rest of us. when she was little, she would share anything with anybody, if you asked her. she never went through the selfish non-sharing phase that most kids go through in preschool or kindergarten. we (especially me and my brother) had to be careful what we asked her to share, because she invariably would, and it just wasn’t fair to take advantage of her like that. even when I was still in elementary school, I could see she was a kid that was just asking to be taken advantage of.

and she has a corresponding disrespect for other people’s property, especially mine. we had to put a chain lock on my door when I was in middle school, above her head, to keep her out of my room. it didn’t matter if I closed the door to keep her out, she’d go in anyway. she still does this—I went home in june to find that my snowboard and several other possessions had “migrated” themselves into her room. all property is communal to her on some level.

on the other hand, we have never had a problem with her stealing (from an outside source) anything other than food. I know she would never presume to just take a shirt or makeup or a toy without paying for it. she knows stealing is wrong. so why are icees in another category for her? or are they? or are we back to she knew it was wrong, she just thought we wouldn’t notice?

the other piece of behavior that I think may be relevent is her behavior at the dinner table. we have never been able to get her to ask for things she needs (actually, this extends beyond the dinner table, when she was a kid my mom would have to periodically check her shoes to see how they fit because she would never say they were too small or they hurt, and her feet would start bleeding and/or blistering, and even then, she’d complain about the blood, not about her shoes being too small). if she wants butter or syrup or spaghetti sauce, she doesn’t ask, she just sits and doesn’t eat and waits for one of us to notice she’s not eating. I’m pretty sure that if we just stubbornly waited for her to ask, she would continue to sit there and not eat until we all left the table, and then get up to help herself. when one of us says, “meg, are you waiting for something?” she says yes with an audible sense of relief. for whatever reason, it simply does not occur to her to ask for help. and I can see this playing into the icee thing—she couldn’t or wouldn’t ask, so she helped herself (but then why didn’t she pay?), and figured no one would notice. this especially baffled her boss, who clearly didn’t want to fire her, and asked me, “if she doesn’t have money, all she has to do is ask me, I will happily buy her an icee.” we all agreed that it was stupid that it was even an issue. the people that meg worked with liked her well enough that they wouldve have bought her icees and she never would’ve had an issue. but no, she doesn’t ask.

she can take initiative in some areas, and the nearest that I can figure out is that she will do things if she sees them as a responsibility. she’s on birth control to regulate her periods and lessen her cramps, and she’s uber careful about taking them regularly, and reminds my mom when her prescription runs low. she empties all the trashes around the house and empties the dishwasher with very little prompting (certainly less prompting than I needed when my mom was trying to get me to do my chores). but those are responsibilities, those are signifiers that she’s an adult, so maybe they’re in a different category in her brain for her? I don’t know.

so, that’s that. I can’t say I’m bitter at Target for firing her. she was stealing, that’s Rule #1 for retail employers—you don’t tolerate stealing. but it frustrates me that after all these years, we haven’t figured out how to communicate with meg about this shit. that we don’t even really know what she understands and what she doesn’t around this. maybe if we’d figured out a way to keep her out of my room voluntarily fifteen years ago, she wouldn’t be having this trouble now.