May 9, 2013
May 2, 2013
I meant to write this even before I knew that today (er, *cough cough* yesterday *cough*) was Blogging Against Disablism Day. Hey, serendipity!
I saw this on Facebook, shared on a friend’s page, a few days ago:
Hey, my name is Emily. I’m 19 years old and I have high-functioning autism. I was diagnosed when I was 2 1/2, when my parents noticed that I stopped talking and developing normally. I never wanted to be snuggled. Loud noises scared me badly. I would parrot everything my parents said. I didn’t like people in general. I’d have a hard time sleeping at night. I was a very picky eater, and didn’t like things if the textures weren’t right. I also didn’t like it when things would suddenly change. Once I was diagnosed, I was put into speech and occupational therapy right away. My therapists thought that I would never be able to go to a mainstream school, learn how to drive, keep a job, or get married. I proved them wrong. I was put in an IEP program when I went to an autism preschool at 3 years old. I learned how to read when I was 4. I was good at remembering things with details. By the time I turned 5, my teachers ran out of things to teach me that were in their curriculum because I picked it up fast, so they started teaching me things that I would learn in kindergarten.
Now I’m in my freshman year of college,I changed my major this past semester to studying special education, and not social work. I work part-time in a call center for an anesthesia medical billing company as a billing specialist. I stopped being on the IEP program when I was in 9th grade. I have a driver’s license, I graduated high school with a 3.2 GPA, I’m engaged to be married next fall to an amazing guy, who loves me and accepts me for who I am. I still have some OCD tendencies, and I still have some texture issues when it comes to certain foods. For the most part, people can’t even tell that I have autism.
For you parents out there with children on the spectrum, don’t give up on them. Help them reach for their potential. Look for the talents that they have, and help develop them. My parents didn’t give up on me, and I’m forever grateful for them, because I get to live a normal life. I am getting married July 5th.
I saw your post on Facebook, through a friend’s page. (I’ve removed your photo and last name.)
My name’s Emily, too. And, with some notable exceptions, which we’ll get to, I could’ve written large chunks of your story.
You’ve done a lot, and you should be proud. But your note left me worried and uneasy for you more than anything else.
I never developed normally. But I was misdiagnosed, and there were no IEP’s when I was in school anyway. I don’t know if there were special schools in our area, but if there were, from what I’ve heard from friends who were in special ed, nothing leads me to believe that they would’ve been good places. Speech and occupational therapy existed, but it had been decided that I was just shy and stubborn and didn’t want to talk, not that I was in fact having serious language problems. Far from being told that I would never do things like go to school, live by myself, or get a job, it was just assumed that I should be able to do everything that everyone else did, and so no one thought that they needed to teach me anything. I had to just figure it out. It was fly or die. And that much I knew for sure.
I read a lot. Thankfully, my first grade teacher was good at teaching writing, and I loved it. I spent a lot of time outside. I learned to drive. I was in gifted programs throughout school. I graduated from high school with a 3.9 GPA. I was captain of my scholar bowl team, copy editor of my senior yearbook, and editor of the school creative writing magazine. I graduated from college with honors and with two degrees. I learned to stage manage and held office in the college debate society. I worked in a campus biology lab, for the local community theater, and then as a barista for several years. I moved to New York with friends, and I work in theater full time now.
And for most of my childhood and adolescence I was in a desperate race to prove, both to myself and others, that I could do anything that I needed or wanted to do, because I was so (reasonably, as it turns out) terrified of winding up not being allowed to live my own life.
I’m hugely proud of a lot of what I did. But I also did some fairly horrible things to myself, and it took me a long time to realize that the fact that I had to wage that war in the first place was wrong.
Recently I was out with a friend, and she said “Your education sounds like hell.” I had to agree. It was, and no one had ever said something like that before, or told me that yes, it was all real. Most people trivialized it or called me spoiled or oversensitive or assumed that because I was smart, it was all easy for me, not that it was war, day in and day out.
Sudden noise, visual over-stimulation, and unwanted touch still hurt me. I’m still very sensitive to texture in my food and clothing. I still walk on my toes, I have a strange gait and an accent that people can’t place. Frequently my emotions don’t connect to my language abilities very well and so there are things I can’t communicate. I worked really hard at developing speech, organizational, and motor planning abilities, but they can still be overtaxed, and I can’t go around expecting to be able to function in the ways a non-autistic person would take for granted, or to push my boundaries for extended periods of time.
And none of that is a reason I can’t be happy or productive or ambitious. It does require that I honor how I’m actually built and how I’m not.
I’m glad that I had people, who I know and who I’ve never met in person, in large ways and small ones, in words and not in words, deliberately, and not so much so, to tell and show me that it was okay to be autistic. That it isn’t wrong. We’re not wrong, to be this way. That we’re okay. That we’re supposed to be here.
I’m glad for all the writing and information from other autistic people that helped me put it together that autism is not what we can and can’t do. It’s not how we’re defective or inferior. It’s how we’re configured to process information, to feel, perceive, and use language, to learn and grow differently from most people, and there’s nothing wrong about that.
I don’t take pride in the fact that a lot of the time, people can’t tell I’m autistic, because all that means is that most people wrongly equate the condition of autism with prejudices about what we’re not supposed to be able to do, or with bigotries about us being incapable of empathy, love, warmth, or friendship.
These days, most people know that I’m autistic. Partly because I write and talk about it, but partly because both my ability and willingness to expend energy on suppressing physical signals of autism have gone away. I’m glad that I’d already read some of Amanda Baggs’s and Rachel Cohen-Rottenberg’s writing, so that I knew what was happening when it started happening to me and didn’t panic or blame myself. My brain gives me fewer choices now about how I can and cannot abuse it. I had to start letting myself feel what I feel and need what I need again.
And I’m better off. I mean that. I’m healthier. I sleep better. I feel like a whole person again. I feel like a real person, like I fit in the world again. It’s an incomparable experience, to know that you belong in the world exactly the way you are, that no one can take that away from you again.
And the other thing? That whether or not anyone can tell you’re autistic has anything at all to do with what kind of opportunities you have, or what kind of respect or affection you get from other people?
That’s wrong. That’s bigotry by definition. If you would be worse off if other people were able to tell that you’re autistic–regardless of your actual, individual character traits, qualities, abilities, and intelligence–that doesn’t mean there’s something wrong with being autistic; it means there’s something very wrong with how other people see us.
By all means, we should tell parents to look for and nourish their children’s strengths, and believe in their potential. But not giving up on your children doesn’t mean putting a premium on them having the most apparently normal life possible. Normal and good, or worthwhile, or satisfying are not synonyms. My life is hugely different from yours. Other autistic people will have lives that look very different from mine. And that doesn’t mean that they’ve failed. That doesn’t mean that they or their parents did it all wrong. It means that they’re different, and made the best choices possible for themselves, and that fighting their autism or any other aspect of their true natures into the ground was just not on the priority list when compared to learning things, or spending time with a topic of obsession, or just enjoying life for what it is.
What we did–to survive, to grow up, to have our own lives–is not wrong. But a lot of the ways in which we were forced to were.
I think we’re capable of making a world where no one’s success or acceptance depends on how well they manage to look like something they’re not. We all deserve better than that, and so do you.
April 24, 2013
April 22, 2013
I’ve heard it said often that the problem with the doctrine of reincarnation is that it encourages people to slack off about living life fully, giving the illusion that we have unlimited time to screw around or watch television.
From a common Christian point of view, the problem is the illusion that we have unlimited time to repent our sins and reconcile with God before we’re called to judgment. That we can sin without limit or consequence because we’ll always have more time to get it right.
But I think it would mean something much, much better, if it were true in any way.
It would mean that all of the world’s greatest people, everyone we’ve loved, everyone who’s meant a great deal to us, everyone whose work has changed our lives…is still here with us.
But we can’t know who they are now. They could be anyone and they could be anywhere.
And so every single chance you have to show goodness or kindness to another person, is a chance to show it to any person who’s ever lived and died.
Far from the idea of reincarnation being an excuse not to live life to the fullest, I think it’s an invitation to live as well as we can and show as much goodness as we can to everyone around us.
April 8, 2013
I was reorganizing a props closet recently when I found this fellow.
I got all of his strings untangled to try to see how he works; he’s a marionette, but seems to be missing the wooden handhold that would allow a puppeteer to operate his legs independently from his arms and head.
He’s beautiful, and also clearly not a toy or a prop. He looks like a traditional puppet of some kind. (In most cultures other than ours, puppet theater is a serious traditional storytelling form for adults as well as children.) And here’s my real embarrassment: I wrote my final paper for graduation with honors in college on the religious frameworks underpinning various East Asian puppet theater traditions…and I had no idea what this guy is.
He looks Indian or Hindu, perhaps, and preliminary image Googling reveals a resemblance to the string puppets of a tradition called Bommalattam, but those marionettes are described as being about 3 feet tall, and this one is only just over a foot, and also more detailed and ornate. I dug out a copy of my paper to skim through, but he doesn’t fit the description of anything that I studied.
It’s past my bedtime, but I’m a little obsessed now with figuring out more about him. I’ll have to resume research in the morning, though if anyone else is geek enough to have any idea, I would be thankful to know.
April 7, 2013
Really happy to see an update from the Out of Order team this week. Seeing this film get made is a wish very dear to me. It will come as no surprise to anyone, probably, that I treasure stories of people being told that they’re not supposed to exist, and then doing it anyway.
And also because I’ve had people who are not allies to the cause of equality tell me that they’re really and truly trying to understand the position of people who consider themselves both faithful Christians, and avowedly queer. Being able to point them to this film would be a great place to start, but it has to get made first.
Earlier this year I shared the first trailer for this documentary project. I know that everything and everyone is asking for your time or money for something, and I know that queer Presbyterian aspiring clergy might seem an obscure or marginally important topic for a documentary, but the filmmakers have this to say:
This important film is about people making a stand for what they believe in. It’s not merely about Christians or gay and transgender people. It’s about wider humanity and doing what’s right, despite institutions telling you you’re wrong, broken and don’t belong.
I know that’s something that probably a majority of my followers can identify with in some way.
March 23, 2013
March 13, 2013
March 7, 2013
I am often not a big fan of the language of privilege. While I have found it a useful concept and thinking tool, and one that I tend to think people should take the time to understand…I’ve seen it turn already highly-charged discussions rancorous. Particularly when both “sides” in a discussion are in fact vulnerable in some way. The word has such a negatively loaded connotation in its everyday usage that it can turn unproductive quickly when participants aren’t familiar with its meaning in a social justice context, or legitimately feel vulnerable, overtaxed, or externally threatened…only to be told that they may in fact be privileged. I try to stay away from it. I usually think that there are better ways to explain things that don’t send people straight into self-defensive mode.
So I was mildly surprised, and humbled, last week when a college friend on Facebook thanked me for alerting her to her own state of privilege, in response to a link I’d posted about a recent event, in the sense of privilege being a circumstance in which you never even had to think about how an issue affects you.
You may have heard about this: Somebody noticed and blogged about the fact that if you Google-searched “autistic people should,” or “autistic people are,” the autocomplete search suggestions–generated automatically by the most searched phrases completing that sentence–were all hate speech:
In response to the attention from bloggers who organized a flashblog to counteract those results, Google announced that it would revise its search algorithms to more effectively screen out death threats from the top suggested search terms. (My contribution was here.)
There’s been a lot of discussion of privilege in the interactions between autistic bloggers and autism parent bloggers lately, which I’ve mostly stayed out of (and characterizations of war between the two groups, with which I mostly don’t agree).
But on a whim, I tried something. Try it for me now if you want.
Go back to the Google home page.
Type in “parents of autistic children should,” “parents of children with autism should,” “parents of children diagnosed with autism should,” or “parents of autistic children are,” and don’t hit enter. Let autocomplete do its job.
And see what the suggestion for that query is.
Here’s what I got:
That is the magnitude of the difference between the assumptions that society makes about you, and the assumptions that society makes about us. That’s privilege.
You may feel like autistic people, or other people who don’t know what’s like to parent an autistic child, judge you too harshly or unfairly, make ridiculous accusations, or hold you to impossible double standards. There are times when you
may be probably are right. That there is a privilege differential does not mean that you can’t be hurt or bullied or wronged on an individual basis by someone of a less privileged group.
But society at large doesn’t wish you would just go away and die. Major charities and research organizations don’t actively seek ways to make that happen. There isn’t a federal law entitled the Combating Autism Parents Act.
(There is a federal law called the Combating Autism Act. Think about what that really means if autism is an inextricable part of your psyche.)
Privilege is not about parents vs. autistics. It is not about which group of us has had it harder, or that we could somehow count, add up, and compare the number of strikes against us. It is not about how we feel about you or you feel about us or whatever personal wrongs or misunderstandings we might have done each other.
Privilege is about how the world at large sees you, and how the world at large sees us–and people like your kids–and the consequences of those conditions in who gets listened to and how. And people–including parents of autistic people–are way, way more likely to get listened to seriously when they say that the world would be better off if people like us didn’t exist any longer, than when they say that we are acceptable, that we are not a tragedy, that the value of our lives is not best measured in terms of our financial burden on the country…or when parents like you say that you love your kids the way they are and only want their happiness and acceptance.
Privilege is the poisoned water that we’re all swimming in; it’s not about laying blame for who did the poisoning. We all get wet; none of us can help but be affected in our views and the way we live our lives and interact with others…that doesn’t make it the fault of the people who aren’t the targets of the poisoning. But we can all help unpoison the water.