Sunday, October 21, 2012

Ableism and You

TRIGGER WARNING! This blog post is centered on the theme of ableism. This mostly covers the discussion of “soft” ableism (assuming less of a person because of their health status), has some brief discussion of “hard” ableism (as in, abuse, neglect, bullying, denying rights) along with a link to an article about some of these themes. Contains in-depth relation to other forms of bigotry such as sexism and racism. Covers touchy subjects, but I call myself out on some of my own misgivings, and If there is anything else you find offensive, do not hesitate to contact me and request a change to this trigger warning.

I’m back again with my second post! Today, we’re covering a commonly discussed topic amongst the disabled population—ableism! I hope this post can be a source of inspiration for you, whoever you are.

So, what is ableism? The word is spelled so oddly, I misread it the first time I saw it and had to look it up. I discovered that it’s pronounced as “able-ism” (DERP), and it simply means that you are judged upon whether or not you are disabled. I think there is a common misperception with what the “isms” mean. It isn’t just a case of “the majority vs. the minority.” It doesn’t matter whether you are the majority or the minority, if you are being treated better or worse based on some particular element of yourself that you can’t control, that’s bigotry.

We all have heard the terrible stories. In 2009, the FBI reported that there were a total of 8,336 victims of hate crimes, 99 of which were based on disabilities (25 of which were physical disabilities, 74 were mental). As relatively small as that number may seem, these are not small crimes, and these are human beings—not pieces of garbage to be counted and discarded. And this isn’t even accounting for the neglect, abuse, and bullying of people who are of a different race, sex, sexual orientation, creed, or state of health than their oppressors.

Take for example this article about the use of seclusion and restraint on a 9-year-old autistic boy. Last time I checked, stuffing a child in a duffle bag and tossing him in the hallway like garbage that needs to be disposed of, is the very definition of abuse and neglect. And these forms of discrimination are only the most obvious parts. As a society, we don’t ever seem to talk about the subtler means of discrimination, so that’s what I’m doing today, specifically getting into a discussion about disabilities.

However, I recognize many of my audience members may not be disabled, so I’m leaving my disabilities out of this for a moment. Let me give a few every-day examples of this subtler form of bigotry. I am a woman, and I am a part of the minority. I think I deserve the same rights as men, and to be treated as a man’s equal. That to me means whatever rights he gets, I get, and vice versa. Here’s where things get a bit messy. In today’s society, I am viewed as “the underdog.” That means a lot people are going to want to give me extra support based on the fact I have a female anatomy. Because to them, I am the poor woman who needs someone to help her do well.

In general, the attitude of wanting to help someone isn’t wrong. I need a lot of extra help by the nature of being disabled, so I’m very grateful for any little bit I get. What’s wrong is assuming I need the help solely because I have boobs, ovaries, a uterus, and a vagina; or because you think I’m an idiot savant, and an inspiration for doing anything remotely intelligent. The first is a form of soft sexism—the latter is a form of soft ableism.

And let me ask you this: why are there many, many scholarships available just for being female, but you’ll probably find about a handful of scholarships for being a man? (Full disclosure: I didn’t Google to see how many more scholarships there are for women than there are for men). This is because most of society is afraid of stepping on toes. This is soft sexism. (And I intend to use it to my advantage, because I’m an aspiring pair of boobs/ ovaries/ a utetus/ vagina/ woman/ cartoonist/ whatever makes them give me money, looking to go to art school and kick-start her career, and I’m not feminist enough to give a shit).

I’ll give you another example. Nobody, except for racists, uses the “n” word, right? But—how many times have you been in the company of a (please pardon my singling you guys out) black person and heard them call their best friend of the same race the n-word? BUT, then when a person of a different race calls someone the n-word, you will hear instant, uncomfortable silence, or a total backlash about how terrible that word is and how wrong it is of him or her to use it. That is a double standard, and a form of soft racism. And just for the record, I hate the n-word. I think it’s a horrid, disgusting word that no one EVER should use. It has a history of hate, abuse, neglect, and down right enslavement, and those are all things I am against pinning on another human being, regardless of their race.

However, no one wants to be called “an oppressor,” so many times the minority will get their way. I am not going to get into politics too much here, only to say that the president of the United States is black, and during the days leading up to his first election, on almost every political form I went on, about 10% (I’m bullshiting that statistic slightly) of the comments I saw were along the lines of “Only racists won’t vote for Obama.” I don’t know about you, but I think I want to choose my president based on more than just the color of his or her skin. This is another form of soft racism.

Simply put, being a bigot means you are presuming the minority is “less than,” and needs help to be “equal to.” This process of trying to make an “equal” out of the minority often turns into giving them extra privileges that the majority doesn’t have, and turning the other cheek when they start pulling some kind of double standard.

 So, I hope I’ve explained soft bigotry thoroughly enough that you get the gist of what I’m getting at. Now, how about ableism? Just like any minority, the disabled population is generally on the receiving end of oppression more often than majority. But I am noticing a growing trend among the autistic community towards applying these double standards I discussed earlier towards people on the neurotypical side of the spectrum (please note, I know only some of you do this). I once knew a woman who was autistic, and her goal was pretty much to eliminate the NT population as far as I could tell. Ironically enough, she was the mother of a neurotypical child whom she raved about constantly. She even moved to South Africa with her husband and her daughter so she could start up an autistic society. She stopped talking to me when my husband (then boyfriend) questioned her ethics. Bare in mind, both my husband and I are on the autistic spectrum, and have been on the receiving end of plenty of double standards from neurotypicals.

Show of hands from others on the autistic spectrum—how many of you use the term “neurotypical” or “NT” a bit like a slur? For those not in the know, a “neurotypical” is a person who does not present many or any autistic traits. That’s what it should mean, anyway, but if you’re in on the autism advocacy scene you’ll often hear it used to represent all that is evil and wrong with the world.

I do this sometimes. It’s almost too easy—neurotypicals are the majority. They make the rules. They don’t get what it’s like to be autistic, many of them are fighting for a cure for all forms of autism, and ways to do genetic testing so we can make sure no more autistic children are ever born (how I read this: mass genocide of the autistic population), and there have been more times than I care to remember where I have heard autistics referred to as “idiot savants.”  I know damn well I’m not an idiot (in spite of sometimes doing idiotic things), that I’m worthwhile and that while being autistic presents its challenges, it has been one of my best features at the same time. And I am certainly not going to take extra precautions to avoid having an autistic child 10 or so years from now when I’m ready to be a mom (which is not to say I’d be unsupportive to him or her for being neurotypical).

But here’s my problem. Yes, I deserve equal rights to my neurotypical counterparts. I deserve to have been born, to be alive and breathing, and I deserve to be helped by my fellow people in the ways I need to be helped. But I have to also try to understand where the neurotypicals who argue that autism should be vaporized are coming from, while agreeing to disagree with those who think so.

I believe they have good intent, especially many of the family members of those with autism. Many of them came into the child-rearing career with the idea they were going to have a “normal” kid. That isn’t to say they didn’t want them to have their own personality or quirks, just that they didn’t want them to be so different that it made the life of their child any harder than it had to be. By definition, autism makes you different and makes your life hard, so my best guess is they just want to make their children’s lives less difficult.

And it doesn’t just make their kid’s life hard. It makes their life hard. Assuming they have anything resembling a conscience, which I believe most do, these parents are worrying about their kids. They know they go to school and get picked on. They know their kid doesn’t even speak the same “language” as their classmates, and that many times, even neurotypical parents who spend every free moment they have being supportive and listening to their kids will not always understand what their kid is trying to say. They lose sleep over it. They worry because their kid worries.

They set aside some of the things they do to take care of themselves. And I’m the first to admit it—I depend on my mom, dad, and husband like I depend on the air I breathe. And I’m not just saying that in the “I love them so much” way. I mean, without their nearly constant care and reassurance, I would not be doing well. So this is a huge burden on them—they help me through not only autistic problems, but my bipolar mood swings, my anxiety, my med changes, and the numerous other disabilities and ailments of mine that we could sit down and recreate the Diagnostic and Statistical Manual of Mental Disorders with.

And when a parent of an autistic child wants a cure, you have to understand something—from their perspective, they are seeing a lot of horrible shit happen to their children. Some cases are so severe (though arguably not helpless) that meltdowns turn into a huge wrestling match. I have a friend on the spectrum who lives in Ireland, and her teenaged brother is very severely autistic. She advocates for a cure for him, in spite of not thinking everyone should have to get one.

You see, my friend is a weightlifter—she works out pretty much constantly and pretty much eats, lives, and breathes it. She has a wiry frame, but is pretty much built entirely of muscle. However, when her brother has a meltdown, it’s pretty much up to her and her mother (who as far as I’m aware is not into heavy weightlifting) to wrestle him into submission before something breaks or someone gets really, seriously hurt. And someone (usually my friend and her brother) ends up getting hurt anyway. Let’s face it—take any tall, semi-muscular teenaged boy and pump him full of adrenaline and fear, and you have an opponent who isn’t going down easily, no matter how much weight lifting or martial arts you learn. Add into it the fact they know that he can’t help it and he’s terrified, and they’re fighting with both their emotions and the fists of fury.

I’m not going to accept oppression of my kind, but I can at least learn to accept that I will continue to be oppressed if I apply double standards for others and myself. This doesn’t mean allowing myself to be silenced, abused, bullied, or treated as less than. It means I deserve to have rights, but I also owe it to the public to let them know when they are wronging me.

It means learning to listen to what NTs have to say about autism, and then providing my own insights. They can choose to listen or disregard me, but if there’s anything I’ve learned in this life, it’s that the only way you can change someone’s mind is either by using brute force (not recommended) or making them your ally. We don’t do ourselves any favors by oppressing the oppressors (or the bystanders, for that matter). By being proud of who you are, advocating for yourself, and sharing your wonderful characteristics with the world, you can motivate others to accept you and all of your differences.

Thursday, October 18, 2012

Disability, Humility, and Asking for Help

TRIGGER WARNING-- contains themes of silencing disabled persons, strong language, and if something else in here bothers you, please let me know, and I will revise the trigger warning so that it will not offend any further parties.

I used to resent my parents because they were always making my decisions for me, and generally fighting against my wishes. One day, however, I realized I didn’t resent them—I resented myself for needing them to do it.
I generally put on a good show for people. I’m not shy about telling them I’m disabled, because for me it eliminates a certain level of anxiety about whether some symptom of mine will alarm people. The first thing they generally learn about is the Tourette’s—how could you not bring up the elephant in the room shouting “MOO MOO!” and contorting her body in a weird fashion? But by the nature of the conversation, I can almost never avoid talking about the other, less obvious elephants. My Tourette’s may be the most visible, but it is probably near the least of my worries when it comes to my health.

Today, I’m here to share my thoughts and experiences with being a disabled person. Believe me, this is pretty triggery, most of all for me. But I am not doing myself, or anyone else any favors by pretending to be like the “Hallmark disabled people.” I owe you guys a brief explanation of what I mean by that term. Simply put, almost every time you turn on the TV, watch a film, or read an article in a magazine about a disabled person, undoubtedly there is some very happy messaged tied in with it. Front of the Class is the name of a documentary about an elementary school teacher with Tourette’s syndrome. I thought the program had a good intent and all, but at the same time I felt very, very isolated by it. For the small, though significant chunk of people who have Coprolalia into adulthood (a Tourette’s symptom—simply put, it’s the involuntary uttering of obscenities) who will never be allowed to work with people because their “disability keeps them from performing that task” (read: we don’t want you swearing at our customers), this film made by the company Hallmark paints a much happier ending than what I’m going to bet most of these adults get.

While I certainly do not hold any grudges against other people with disabilities who choose to write positively about their experiences, I very often feel isolated by the stories that only show the happy parts of being disabled. Guess what? The “dis” part means we are not always doing that great. We have to ask people to do things for us, and for some of the more severely impaired of us, this means we require 24/7 care. If you aren’t disabled, let me paint a picture for you of what that is like.

Imagine for a moment that you come down with a very serious stomach bug. You physically feel like shit, you can’t drive or leave the house because you will be too far away from a bathroom, and you can’t do much of anything but writhe in pain on the toilet for 24 hours. You need someone to make you food and provide you with liquids so you will stay hydrated. You need someone to do the dishes, the laundry, the daily chores that you are too weak to deal with. You need someone to get you some medicine. You can’t go out to dinner with your loved-ones, and the person in your home taking care of you has their own needs and things they need to do, too.

By asking this person to do something for you, you are humbling yourself. You might even feel like you’re asking a lot of them. And you’d be right, you are. But that doesn’t mean that you need their help any less. And for us permanently disabled folks, this isn’t just a 48-hour case of food poisoning. Some of us may be less home-bound than others, but without a doubt, we all have to learn to ask for assistance. Many things I ask my family and friends to do for me are things that, if I had the energy or the executive functioning, would love to do myself. If it were just a matter of me putting my mind to doing these things, I wouldn’t be considered a disabled person.

I bet you any amount of money that there is a good number of disabled folks in this world are smiling for your benefit—especially if you don’t know them that well. They already feel singled-out enough, and living in a world full of sayings like, “Smile and the world smiles with you. Cry, and you cry alone,” is enough to make anyone show some teeth, even under immense, unhealthy levels of stress. I know I sometimes feel this way. People see a very bubbly, smiley person on the outside, but when I get home after a busy day, I can be a huge, sobbing, un-fun puddle of mess that has to be cared for by her loving, devoted parents and husband.

So, what I ask is not that you throw me a pity party. I do have good days. Hell, there are days where my disabilities empower me. They don’t call them “bipolar upswings” for nothing! But to quote the character Adrian Monk from the show, Monk, about his Obsessive Compulsive Disorder, “It’s a gift… and a curse.”

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