June 26, 2013
It’s my birthday today. I’m 31. Yikes.
And I had just finished breakfast this morning, in the kitchen of a friend I’m visiting, when we got the news, just after 10:00 AM, of the Supreme Court decision overturning the Defense of Marriage Act, and shortly thereafter, Proposition 8.
I remember being a teenager, sitting at my own kitchen table, at breakfast time, in the house where I grew up, reading the news about DOMA’s passage. I wasn’t all that attentive to what went on in politics or the world at that time, I didn’t know things I do now about my own identity, and I didn’t think I knew any gay, trans, or queer people. I still believed some things about sexuality and morality then that I don’t anymore and am not particularly proud of to look back on.
But I remember reading about it in the morning paper and being so sad. Something about it just profoundly didn’t sit right with me. I couldn’t think of another instance within my own lifetime in which a law had been passed for the deliberate and express purpose of depriving a specific group of people of rights or protections. And based on very little except the perception by the majority that they were simply the wrong kind of people, or willfully deviant–a burden which I had always felt, though for different and at the time unnameable reasons.
And no matter what I felt about homosexuality, I couldn’t believe that that was right.
It was part of a long pattern, that I identified with the wrong people in the given narrative.
I honestly didn’t think it would be so soon–though of course it’s been more than long enough for a lot of people who have suffered under the consequences of this law–that I’d get to look back on that day with a bittersweet happiness.
The world does change when people persistently stand up for what is right. We are capable of making the world kinder and fairer.
Remind people of this day, tomorrow, and the day after, and the day after, when they tell you any version of the lie that we can’t make the world safer by standing up for each other, or that it’s better to just keep your head down, fit in, and not speak up for justice or piss off anyone in authority, because the world never changes. It’s people with a vested interest in the world never changing who keep telling that lie.
(Edit: I hit publish on this, and then realized that I hadn’t come up with a title, but when I went back to edit one in, I thought that the date was kind of title enough. DOMA: 1996-2013. RIP.)
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 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 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.
December 5, 2012
Two major considerations of autism and the place of autistic people in society sort of collided in the news media this past week. First, the New York Times’ Sunday Magazine ran a long piece, “The Autism Advantage,” on a European company, Specialisterne, whose mission is to find supportive employment opportunities for people with Asperger’s Syndrome in the tech world. And second, the House of Representatives held the first hearings in a decade on rising diagnostic rates of autism spectrum disorders.
In both forums, it quickly became apparent, as it often does, that by having any ability to take an active role in our own lives or discussions about us, our right to do so is discounted by many. The comments section of the Times article quickly exploded with criticism that because some autistic people are too severely affected to ever hold jobs, the article was irresponsible or trivializing, that the employment concerns of the so-called “high-functioning” had no place in discussions about real autism.
And the originally slated panel of witnesses to Congress included zero autistic people of any stripe. When Michael John Carley and Ari Ne’eman were added in response to pleas from the advocacy community, complaints resulted that two such “high-functioning” men couldn’t truly represent autistic people, or did so inadequately because their testimony didn’t focus on the need for a cure for “lower-functioning” people.
Effectively, that because some autistic people have severely compromised communication abilities, we should not have been represented, in a Congressional hearing about the federal response to our existence, at all.
And I’ve lost count of the number of times in online discussions when I’ve been told that I’m nothing like someone else’s child, couldn’t possibly understand what their child goes through or have any idea what it’s like to be their child…before they list off a litany of experiences that sound a whole lot like my own childhood.
(Or sometimes not. Sometimes someone else’s experience with the autism spectrum is actually radically different from mine. It’s called a spectrum condition for a reason, and we know this, better than anyone.)
I may never be able to convince these people that my experience has anything in common with their children’s. I know that no single human being can ever truly know the experience of being another, but I also can’t convince myself that I have no place standing up for those kids.
Because I remember getting the message so often, in so many ways, that there was no place for me in the world as I was, that I was never going to make it in “the real world.” That I wasn’t going to be allowed to make it if I wasn’t going to do a better job of pleasing others.
I remember not being able to look the way I was supposed to, talk the way I was supposed to, dress the way I was supposed to. I remember not being what anyone wanted.
Because my heart broke for your kids when Michael John Carley asked the nation to remember, when we talk about the autistic, that the vast majority of us can hear and understand what you say about us—and a gallery full of people behind him angrily shook your heads “no.” Because I remember being told again and again that I could not be perceiving what I was perceiving, and being told that I couldn’t or shouldn’t be able to do what I knew I could.
Because I remember having no one who spoke or understood my language, and losing hope that I ever would. I remember having no one who thought that the world as I experienced it was worth respecting or understanding remotely enough to be any help to me.
Because I remember the constant implication that the ways I was being treated were acceptable because the way I am was not acceptable.
These things wear you down, day after day. The memory of it all wears on me still. I want better than that for your kids. I think we can all do better than that for your kids. I’ve cited before, and probably will again, the quote from Adrienne Rich:
When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.
I think that all of your children deserve to see a world with them in it, and belonging in it.
And far from our abilities disqualifying us from that role, I believe that our communication abilities and everything that we’ve done and learned for ourselves are all the more reason why we have a responsibility to stand up for kids like yours. If I were to decide that because of the gap in our apparent abilities, that they and I have nothing whatsoever to do with each other….If I said “You’re right; because I can speak and write and have a job, and your child might not ever, then his rights, dignity, and well-being have nothing to do with me,” then I really would be guilty of the accusation leveled against activists so often–that we care nothing about the well-being of the more severely disabled.
But I don’t think that’s true.
December 27, 2011
I think I never intended to write this post. It’s personal, and it’s a hissy fit, but one I felt a certain responsibility, the more I reflected on it, to transcribe.
I was diagnosed with Asperger’s Syndrome last year, which most of you probably know because I talk about it on Facebook enough, because I decided that it was part of my life that I wasn’t going to make any particular effort to hide, because I had nothing to be ashamed of. (I’d known the truth for several years before I sought out a correct diagnosis; a few people knew, but I didn’t talk about it much, for fear of a lot of things.) I really have no idea what people think of me as a result, because I stopped concerning myself at a pretty early age with what people think of me. Because living in thrall to the opinions of people who don’t have to live your life is no way to live at all.
Anyway, so I’d started to think of it as old news that I was autistic. I’d started to settle in to living as a whole person, without an emotional double life. Then last night, I was rather emphatically asking my mother not to describe a young relative, currently in the process of being evaluated for autism himself, as not having a personality, because such language is often used to justify all kinds of mistreatment and prejudice against us, besides not being true.
“But you’re not autistic.”
Which is where my brain froze up. Because honestly? I don’t know what else I am. Everything comes home to that. Everything. Before I understood what AS really was, I didn’t know what I was at all, except for lost and completely alone in the world.
“I don’t think of you as really autistic.”
This is everything I didn’t have it together enough to say at the time. This is what I’d say going forward:
If you can’t see me as autistic, then you need to revise your view of autism.
I am “not like that kid” you saw who runs around screaming, or who can’t communicate at all, because I grew up. And because we’re all different, because we’re all different people, who cope with unique profiles of challenges and gifts in individual ways. I am “not like that kid,” because, to be perfectly literal, I am not that kid.
We are as unique as the stars. They say autism is a spectrum, but I don’t think that really describes its variety and complexity well. It’s not a simple progression from mild to severe. I often say it’s more like a constellation, or galaxy (which, another blogger pointed out to me today, has the added metaphorical benefit of being a 4-dimensional construct; it changes through time for every person as well). There are people with far more severe problems with independent living than I have, who are smarter, better writers, incredible artists or just incredible people.
I am far more fortunate than many, and not as lucky as others. I know this; you don’t need to rub my nose in it.
If you can’t think of me as autistic because I have so much personality…actually, we usually do.
If you can’t think of me as autistic because you see me as a competent adult, you didn’t know me as a child.
If you can’t think of me as autistic because I’m verbal and communicative…read more about AS. Those things are features of the condition.
If you can’t think of me as autistic because I’m so good at my job…please consider that it’s a job that largely entails “keeping track of everything that no one else wants to” (to paraphrase the college instructor who introduced me to stage management as a career option), organizing, color-coding, and working with a collection of people who are also socially marginalized, passionate, obsessive, highly sensitive, and reliant on consistency and repetitive and ritualized behavior. (Actors, I adore you all so much.)
If you think I can’t be autistic because I’m so good at multitasking, well, I’m not. Good at multitasking, that is…I can’t do it at all. I know I’m taking a certain risk in telling you this. What you see when you see me do my job is the result of copious amounts of planning, mental choreography, scripting, queuing, pre-thinking, mapping out scenarios like computer flowcharts, making Excel spreadsheets, preparation and learning from experience, and excellent assistants being good at their jobs, too. (Stage management and life with Asperger’s are both centered around dealing with a quantity of data that a single human being is not truly equipped to handle.)
You get good at anything you do for a long time. I got good at my life when I stopped trying to live one that I realized I could never have.
If you can’t believe I’m autistic, what on God’s green earth do you think I am? Because I sure as hell failed at being normal.
I’m autistic. There’s not another or a better word for what I am. It’s one I searched long and fought hard for.
If you can’t think of me as autistic, it’s not so much for my sake that I care, but watch out that it’s not because you can’t believe that autistic people can be intelligent, kind, good-humored, good friends, good at our jobs, capable of love, highly-skilled or talented, complete human beings. Because if your prejudice is that autistic people can’t be these things, you take chances for jobs, education, friendships, and quality of life away from autistic people who are a whole lot less lucky than I am.