The Hard Things
Often, but especially this month, there tends to be a false equivalency that gets promoted- that Neurodiversity advocates ignore the hard things, or that we don’t experience the hard things. From there, self-advocates are told that we can’t speak to the lives of other, usually younger, Autistics. Obviously this is false. The hard things are a part of our lives, are a core part of them.
On the 18th of March, I had to go to Baltimore. To manage airports, I have a pretty set script that I follow in order to make sure that I make it through the airport and flights. Usually it works fairly well, and if I get confused I let a security person know I”m Autistic and it typically works out. The first time I went through security by myself, I had a TSA agent walk me through the security point step by step. (I have a soft spot for Pittsburgh, PA’s TSA agents as they’ve treated me fairly well. I can’t speak for anyone else’s experiences though.) I’ve had people let me be or give me appropriate instructions when I’ve lost words. Mostly I have decent experiences. Not as peaceful as trains, but decent.
Except this time I flew southwest, and their gate check process is different. Instead of picking your bag up at the gate, they put it through to the carousel in bag claim, and instead count it as a late bag check. A bit nerve wracking as I rarely if ever do a regular bag check. But this wasn’t the hard part. Nor was sitting on the floor next to the assigned baggage carousel for an hour. (I took video of myself rocking there, and it is edited in with other video on my youtube channel.) But by the time I got through what my bag looked like, I couldn’t verbalize words any longer. The words went away. Thankfully the BWI Southwest baggage customer service acted like it wasn’t unusual at all for someone to get out a netbook and start typing instead of talking. I also had to get help getting on the van- which was directly across the room- to the hotel.
That evening, I had to leave dinner because I couldn’t sit upright any more. My brain was completely done, and I poured coffee on the table because I could no longer judge where my cup was in space. The next morning, I couldn’t get out of bed because I had no clean clothes. The very thought of putting on dirty clothes Shut me down for hours. Thankfully, the thing I was at was Developmental Disability centered, so the organizers were understanding, ordered me lunch, managed dealin with the airline and hotel, and the person I was supposed to facilitate with took over my duties. (Thank you Nachama!)
And this is only a mildly hard “day.”
Even the tiny Hard things add up. Loud noises making me need to hide, camera flashes leaving me utterly disoriented, the wrong smells, colors, and textures- the little hard things could make me have issues where I would normally have none or even where I’d normally excel. I curl up in a ball in a grocery store because I don’t know the practical steps rather than economic difference between using credit and debit. I sit on floors in airports for hours because I can’t figure out the steps to get to my hotel. I get C-Diff or MRSA because I can’t remember when to clean. I pee myself because I hear the wrong noise and become scared. I can’t tell until the last moment that I need the restroom, and then I better get running before I forget or lose control.
A thousand tiny hard things.
I had to live off campus because I didn’t understand paperwork for housing and couldn’t figure out that I needed help. I had to drop out of school and became house bound for 6 months because I didn’t understand or know how to ask for help with school tuition or paperwork. I watched my carefully laid goals collapse, and can’t do anything beyond repress and hide when people I know graduate or talk about completing midterms. I lose my ability to conceptualize my goals after having plans go awry.
A thousand hard things.
Becoming homeless for a thousand tiny reasons. Being unable to navigate the housing system, and having to rely almost entirely on my Intensive Case Manager to even fill out the forms let alone deal with the people. Having difficulty with a form because I want to answer truthfully but have no idea how much people have spent buying me toilet paper- and then crying, pacing, yelling the same phrase repeatedly and staring at blank walls. Hiding in my 3 year old niece’s closet because I can’t calm myself, can’t process my environment further to get away from what is bothering me. Being trapped in town because I can’t speak that day and I need to find a way out.
Hard things.
Knowing something is wrong, large or small, and not having the words for it for 5 years. Being told I’m articulate when I can’t get my basic needs across to be met. Trying to report abuse, and not having the words to articulate it yet- then having my call dismissed because of my disabilities and inability to articulate it. Pressing myself into walls or running into them full stop because the pressure is soothing and I can’t get my world to stop- and then being treated poorly for daring to do so. Being put through unneeded procedures because my self soothing behaviors look scary to others, and echoing (oh echolalia!) their words back when they ask why I do them- Is it because of self hate, self loathing? Do you want to die?- because I don’t have the words yet to tell them how it really feels in my head.
Life is full of hard things.
But the hard things don’t make that life less worthy. It doesn’t make it okay to deny accessibility. It doesn’t mean you can’t adjust a little- and often to mutual benefit- to make the world more navigable to us.
The Hard Things don’t take the joy out of it. It doesn’t make the self soothing activities less self soothing. It doesn’t take the joy of observing the infinite diversity of our world within even human neurology- a joy that we can share, if we are willing, despite having infinitely diverse faiths or even having none at all. It doesn’t make my niece’s bringing me my stuffed cat less an act of love. That my former cat, ‘baka, was my service animal that I needed to help me self regulate doesn’t make my affection- nor even my grief at her passing- less deep.
The Hard Things, though, mean that you will look at them and say:
I don’t want that for my kid.
That is not safe.
That is too strange to do in public.
If you’d only “pull yourself up by your bootstraps” and get over it, the hard things wouldn’t be hard.
Your tears and meltdowns prove my point of your incompetence/that you will always be a child.
instead of finding a way to make the hard things livable. Instead of accepting that I need help today even if I didn’t yesterday. That I am an adult who is able to make my own choices- even when they are bad ones. That the reason it’s so strange is because of repression. That there are ways to make this all safe. That risk is a part of being human.
That there is joy in being one’s self.
Written for Autism Acceptance Day and Month. Many Thanks to Paula Durbin-Westby for originating Autism Acceptance Day and all the effort she has put into this event- please go check out some of the other posts she’s collected. Thanks also to Emily T for her sharp editorial eye.
Decolonizing Our Voices
Today is Autistics Speaking Day, a day when we are particularly asking our allies and allies-to-be to step back to allow the voices of Autistics ourselves to be heard and listened to.
When ASD started last year (2010) we were in essence protesting an “awareness” campaign that people who purported to be our allies had designed and promoted with heavy pity language. They had asked people not to post at all, to be silent and non-speaking online to draw attention to the communicative issues many Autistics face. I believe our response was pretty understandable not only was this basically online “crip drag,” but it also denied the fact that for many Autistics, online resources such as social media sites have given us a voice.
I myself had great strides in my personal development after getting online. I know a number of people who are Non-speaking Autistics whose ability to communicate was greatly augmented by online resources, and a number whose involvement in virtual advocacy have made the people around them rethink everything about their care. In short, Social Media and other virtual resources have done for us what having a ramp in a public building does for our chair using brethren. (I will freely admit that it doesn’t solve all our problems, and we still face hostility online and off that prevents access just as having a ramp alone doesn’t make your building wheelchair accessible.)
This year, Autistics Speaking Day is taking place at a time when we have people in the streets protesting economic disparity and corruption. For some of the protesters, there are harsh economic realities in their own lives motivating them- Homelessness, lack of accessible health care, and unemployment. Others feel that their voices as citizens have been infringed upon by corporate interests, particularly when it comes to our elections in the United States. Still others are driven by a need to undo injustice.
This movement of protests is popularly called “Occupy Wall Street,” so named for the action of camping- or “occupying”- public places such as Zuccotti Park in NYC or Mellon Green in Pittsburgh, or a wide number of other Occupying sites. However, a number of indigenous groups quickly pointed out that Wall Street has been occupied for centuries- it was originally Lenape tribal land.
So when their site started, Boston issued a solidarity statement with Indigenous Peoples, and were followed by a number of other sites. In light of this, some people have been using the term “Decolonize” rather than “Occupy” so that the voices of marginalized Americans- such as our indigenous populations- can be better respected and more easily centered.
People of Color are especially hard hit by the economic environment, and in a number of places the living conditions on reservations are deplorable. People with Disabilities too are feeling the economic burden our services are being cut, our programs redefined to limit our involvement in our communities, and supports being withdrawn under the excuse of “budget issues.”
After some thought, I’ve decided that there’s too much of a cross over for me in the work of Decolonizing Wall Street and of our voices as Autistics to not write this post today. While people in general are seeing their demands of their political representatives co-opted or diverted by corporations, Autistics routinely have our voices co-opted by our allies and diverted by large “non”-profits such as Autism Speaks. Many of us are frustrated by the lack of Genuine Voice that the general public hears from us. Instead of looking at the things that help us live our lives and improve the quality of it, research funding is sent to projects that could potentially prevent us from being born in the first place.
Indeed, when we speak we are dismissed using logical fallacies so that the voices of those who proclaim themselves working for our “own good” can be prioritized. Obviously, not all of our allies are like this. But some are, be they parents, professionals with pet theories, or Organizations whose bottom line would be affected by what we are saying. Those are the ones we are talking about when we talk about how our supposed allies need to step back and stop centering themselves.
The Protesters in the Occupy/Decolonize use consensus building as a process. This does have flaws by itself- those with pre-existing privilege can still flaunt it- but there are some principles that can and at some sites are added to mitigate those flaws. One of them is the concept of “Step back, Step up.” This means for people who have privilege- white people, straight people, cis people, men, and so on- to take a step back in the conversation, and to encourage those without your privileges to step forward so that they can be heard- something that won’t happen on its own. Without taking this into consideration, the same hierarchies that divide us out in the world will be reproduced in our movements.
This saying is the reason I’m bringing up the consensus process in this post- because the conversations we are having in the Autism and Autistic communities need to utilize the same principles. Otherwise no matter how good natured and well meaning people are, those who have less privilege will not be heard. And to me, this Principle is at the core of what Autistics Speaking Day is about. It is about us being heard when we try to step up, and about our allies supporting us doing that.
I’ve been involved from afar with the Occupy/Decolonize activities at Pittsburgh, PA’s site, working especially with the Marginalized Communities and Allies workgroup. The Safety workgroup took most of my comments about safety concerns for PWD and added them to the safety document. I’ve been encouraged to stay involved in the processes and networks being formed.
Most encouraging to me is that our site’s working groups have been prioritizing ways for people who can’t stay on site to be involved. Instead of the sentiments that if you aren’t at an action you aren’t really committed that have characterized some other movements I’ve tried to be involved with, I have gotten reassurance. Paul O’Hanlon, a protester with disabilities who has been very active both on site and off, told me to remember that they know that every person there is representing people who can’t.
That isn’t to say that there aren’t people who assign high value to people on site. There are still people who fail to recognize that even when we are eliminating our class barriers that our other oppressions and privileges are still intact. There are still people who don’t get the anti-ableism, anti-racism, and so on work is still very much needed. But I’ve seen what feels like great strides. Objectively, perhaps they aren’t that huge, but for someone who has had their voice sublimated repeatedly it feels huge.
Just as as a young teen blogging, instant messages, and other internet resources helped me to gain a sense of community and skills, the internet is enabling me to be involved. I’m someone who has not been able to physically be on site because of a number of reasons. I’m rural, I have to have access to certain services on a regular basis that would not be present on site, and I also have fibro Myalgia, which would make winter camping a mobility and possible safety hazard.
So I’ve been doing support work, editing virtual documents, and organizing accessibility work. I started a cross disability group called “Occupy Disability/Decolonize Disability” for people with Disabilities to network resources on both being on site and working off site. A friend with Multiple Chemical Sensitivities started #Occupy at Home to help people like us find ways to be involved. There’s even an “Occupy Autism Speaks” page to highlight the issues with that organization.
All of these things keep seeming to parallel to me the ways that Autistics have built community online when our physical environments have been barred to us. We’ve worked to create venues to be us in, to see the value of our forms of communication. To be involved as we are, not as others think we “ought” to be.
Today is the day we take back our voices. Now is a time when “The Whole World Is Watching” what is happening. Tomorrow is when we will continue to speak out- so please, keep on listening.
Why I’m not Blue.
I see a lot of “light it up blue” stuff being posted around the net today. It makes me sad, really. See, The light it up blue campaign is a project of Autism Speaks. Their name is Ironic, considering they do not have any Autistics on their board, and one Autistic on ONE advisory committee.
I am an Autistic Adult. I have an Asperger’s Dx. But any time I say this, people say things like “Oh, but you can’t be, you talk!” or “But you have so much to say!” This is particularly a prevalent response online, where I do communicate better. I sometimes hear it from people whose only experience around me is hearing me give a talk, not cognizant that there’s a huge difference between public speaking and reciprocal communication.
If they stay around long enough, though, and they know what Autism actually *is,* they get it.
Thing is it’s pretty rare for people to actually get what it is. They are given imagery and little information. Puzzle pieces, Statistics, and fuzzy photos of kids looking anywhere but the camera. They are told that being Autistic is somehow worse than life threatening diseases- which, to be honest, is bad on multiple levels- I wonder what my one friend who is both Autistic and HIV+ thinks when the advertising compares one part of her life to another?
Recently I posted a video on tumblr that Rethinking Autism did called “Autism Support Group.” It had all the usual things we hear said about us- How it seems like we aren’t there, that we don’t display affection in typical ways, That we just “don’t get” school. Throughout, an Autistic adult responds to these comments, only to be ignored and unheard by parents. Thing is, these are comments we hear about ourselves, and about children who were like we were as kids, all the time. The comments could have been lifted from so many parent support groups around the nation- possibly around the world.
Another thing is that it’s always children that are mentioned. The majority of the leaflets and flyers that do feature Autistics (or models) instead of a puzzle piece feature children. “These children,” “Help a child,” or “1 in 100 children” is mentioned. Thing is, it’s NOT just children. There’s no follow through on the notation that Autism is a life-long thing, just a margin in the notes.
The exception is the speculation. “She will never get married and have kids.” “He will never hold a steady job.” “My kid will never go to college.” While these things might be true for some Autistics, saying it’s true of all of us- or rather, all the 1 in 100 or 110 or 160, whatever number you recognize- is just an outright lie and speculation. The same speculation that had my IEP team pressure my mom, saying “She’ll never go to college. She’ll probably never graduate high school. Stop filling her head with the idea that she should pursue advanced classes.” My mom pulled me out to put me in first cyber school then Christian school, and never bought into what they told her about me.
I eventually went back to public school, and I graduated high school in 2006. In 11th and 12th grades, I even took Advanced Placement English classes, and got a perfect score on the AP English exam. (They thankfully didn’t have a spelling section.) In fact, had I not had a nervous break down- inconveniently after the school had pulled my support services- my senior year, I would have been ranked and recognized as such at graduation.
This didn’t come to pass because of an obsession with curing me. It happened because my mother supported me unconditionally. (Her second and now ex husband is a different story for another time.) She knew I was anxious and distracted in school, and that they refused to let me pursue my potential. So she arranged it that I could, and in an environment that suited my changing needs. She encouraged me to get up in front of people and start advocating. She didn’t ever show me doubts about my being able to accomplish things.
A year or two ago, my mother was approached by a parent. The parent was talking about how “of course, you know, you grieve your kid when you find out they have special needs.” This made my mother angry. She responded that no, actually, she didn’t grieve me. I was right there. The extra work was stressful, that is undeniable, but she never lost me so there’s nothing to grieve. She has me, just the way I am- Autistic, Queer, and living with Chronic Pain.
My mother was there when I would melt down and flail wildly- sometimes so much so that she was worried at times about her own safety. She had to deal with people telling her that maybe she should put me in residential placement. She experienced the fear when as a small child I would wander off, one notable time in the Metropolitan Museum of Art in NYC. She heard the comments of “Why isn’t your daughter smiling?,” the “cheer up honey, it isn’t all that bad” and my response of “I’m happy, I don’t need to cheer up.”
Maybe she didn’t see what her second husband put me through, or notice the extra time I took in the bathroom, practicing facial expressions in the mirror so that the cheer ups would just stop. But she never stopped believing in me.
So, you know that Autism exists- but do you know what it means to be autistic?
News and Numbers
First, some Personal News: I’m the new Assistant Director for AWA-Pa Alongside the wonderful AspieTeach, our Director for PA. Please check out the site and let me or her know If you have news or resources for women on spectrum in PA!
Also in the Positive, The Rethinking Autism “Autistics Speak” video (My post is here) Is getting a lot of response. My biological father and I talked today, And he’s been showing it to people at work, friends, and Even his Therapist. They even used it as a way to prompt discussion is session.
In a broader sense, Rethinking Autism has been getting some community Media Exposire. AWA Radio had Dana on, and she’s scheduled for Mad as A Hatter (air date might vary, V’s been ill). If you have a media outlit, please consider asking Dana on! I’ve had several people tell me they’d love to see Rethinking Autism’s latest video have a broader Audience, and I know Dana would love that as well! After all, our message is meant for everyone, not just the Autistic community.
And now, Numbers games:
a couple of articles are out about statistics in the Autism Community. One news Study claims we are at 1 in 91 US kids on the spectrum. This, of course, is including the entire spectrum. What is interesting about these new studies is that previously, we had claimed to have a lower prevalence (1 in 150) than other countries (UK claims 1 in 100).
Another Study Claims the numbers are at 1 in 110 and which has been covered by Left Brain/Right Brain. It should be noted that this was based on parent reports of behavior received via Phone surveys- not the most scientific way of collecting data. It’s imprecise, but it certainly gives us a lot of leads for future studies that will hopefully involve more reliable data collection. Also, some of the parents claimed that their children are no longer on spectrum, which raises further questions. I reccomend the above linked article for a good analysis of this study. (USA Today also covered this story.)
Speaking of all these numbers, left Brain/Right Brain have a good question- Do We Need an Epidemic for People to Take Autism Seriously? This post is a well written and detailed look at the numbers and epidemic centered tactics used by various groups, and comes away with an answer- No, and Epidemic language might even defeat the purpose. Definitely recommend this one.
Rethinking Autism: "Speaking for Myself"
The timing of the recent hullabaloo/AutismSpeaks Fail is amusing to me. Why?
Because the latest Rethinking Autism video is Out!
“Speaking for Myself” features the voices of actual Autistics providing voice overs. I am the Savannah that Speaks twice in the video- once at “Celebrate Neurodiversity” and again at “Why shouldn’t I have a say in laws, organizations, and research that involves me?” Also featured are Dora Raymaker, Steven Kapp*, and David Mahaffey*. The Captioning file was contributed to the wonderful Codeman38. We would have been able to participate in the filming but there really wasn’t money for that.
Rethinking Autism is maybe better known for some of their more Risque (read: actress in revealing garments) videos encouraging people to look at the research. Included are topics on No Vaccine Link, Special Diets, Inclusive Education, and Neurodiversity. Rethinking Autism attempts to comment not only on these issues but also on how celebrity and sex appeal is used to spread misinformation. In their Key Concepts page they give a run down on common misconceptions and direct people to sites containing more information.
On a related subject, Cat in a Dog’s World has an excellent post on the Diagnostic Double Standard in the Autism conversation. Those of us that are closer to the “passing” end of the spectrum are included in the statistics used, but yet when we speak up, too often parents say that organizations like AutSpks “aren’t talking about” us. And by us they mean not only those of us who can almost pass, or even those of us who can verbalize, they also mean “those on the internet”.
There’s an assumption that if you can use the internet, you aren’t “Autistic Enough”. Now, All that says to me is how much of a lack of hope or vision in the parents that think this. Drew Goldsmith, a talented young director who has been featured at film Festivals, is Nonverbal. Dora uses AAC devices to communicate. Carly Fleischman Approached her computer and began to type, and has revealed her life even though for years she was brushed off as “mentally deficient.” The assumption that if an Autistic is on the internet they are less “severe” is bogus.
* Steven and David, or anyone who is better acquainted with either of them, could you give me a link for you?
ETA: This is a personal note: My biological father watched the video. Now, I’ve mentioned he’s always been a little uncomfortable with the MH DD thing, but has become supportive. He watched the Video, and sent me a text message. “Loved the video. You spoke very well. Love Girl.” 
Backlash and a Few Days Out of the Loop
I went to my grandmother’s for a few days (also: caught a ride to my blood work appointment) and the timing for that was SO not right. But I think I needed it (as it’s too early to see results for a new med) as I’m feeling a lot better and more prepared to do something other than sluggishly struggle to fit thing together.
A lot has happened since I went to Grandmother’s.
A good and comprehensive round up can be found on Liz’s I Speak of Dreams. Please contribute to her round up if you have anything! Also, my friend C1audia has an open letter on her blog that Is a good read. (C1audia is awesome, and I recommend you give her whole blog a look. )
I don’t always agree with The New Republic’s style (I’m too bleeding heart), but I do agree with their latest post- and am tickled by what it has to say. First of all, A parody called “I Am Autism Speaks” was put on youtube supported by them. Here it is:
It promptly knocked The AutSpks “I Am Autism” down in youtube ranking, and caused the PR firms to panic. They’ve been tracked on the New Republic site. In addition, Autism Speaks UK has choosen to disassociate itself in the following manner:
..’The UK charity Autism Speaks is a separate entity from the US charity of the same name. Autism Speaks UK did not contribute to the making of this video and we do not share or support the views expressed in it, which are those of certain members of the board of trustees of Autism Speaks in the USA’..
Ouch!
I’ll try to keep up to date on this matter.
(sometime later in the evening)
So, New Republic is currently the number one Search Result for Autism Speaks on Google Blogs. (you can either click on the above link or here for a screen cap.)
AutSpks Once Again Demonizes Autism
I heard about this right before bed last night, and in the mean time the Autistic Community has made many valid points. Here’s the Run Down, and the Round Up
The Run Down
AutismSpeaks sent out a call for video submissions in a way that was fairly innocuous- in fact, it used language such as “a bright spot on Autism” that might indicate something positive and uplifting. You can see the call for submissions here.* This was for a United Nations-Autism Speaks conference.
Red flag number one (other than the fact that it’s an AutismSpeaks production) is the release forms.* This is for release of the footage parents submitted, and includes that the signer of the release is signing for friends and family as well as themselves. Now, I might have this wrong, but everytime I’ve worked with a photographer or with a non-profit who was taking photographs for publicity projects, if a release form was not signed by even ONE adult (or parent of a minor) depicted, the entire photo was a wash.
In this case, they might be safe as the clause does indicate that the signer is acting on behalf of everyone in the video, though it is phrased as the signer giving permission for the images of self, friends, and family. It does not say that by signing it they are saying that they have aquired permission and thus are acting on behalf of said friends and family. So even if a friend or family member did not give informed consent (if an adult, or parent, have read the release and consented to the signer acting on behalf of the party) it ends up being the signer’s fault and is sealed by this final phrase: “I further represent and warrant that I
have the right to give this consent and no other consents are required.”
Wording means everything in legalese.
The form also uses wording that would tip off some people, such as “global health crisis of autism” but perhaps not your general parent, particularly those of newly diagnosed children.
The actual video is. . . well, the only word I can think of is “appalling” and even “blatently Offensive.” (If you don’t think you can handle the video, the wonderful Codeman38 has transcribed it on the Livejournal Aspergers community.)
..
My response (in 500 chracters or less, as that’s Youtube’s character limit):
I find this video offensive, not only on behalf of myself, but also on behalf of my grandmother, an Aspergers Autistic, several Aunts, and even my cousin (Dx’d HFA, now Dx’d Aspergers due to early social supports and encouraging interests in sports as a family).
I am offended on behalf of my mother, whose love & pride & acceptance of ALL parts of who I am allowed me to progress even when instructors and Support Staff said I’d fail.
I am offended, & must say that AutSpks does NOT Speak for me.
I’d encourage you to go ahead to the site link and leave a comment and/or rate DOWN this video.
I’d like to additionally add that I’m disappointed in both Alfonso Cuaron and Billy Mann for their involvement in this. I have in the past admired Cuaron’s style, so this was even more of a disappointment for me. Shame on you both.
Community Response (Or the Round Up)
The community has had a huge response. Here are some responses (and feel free to link me to others!)
Cat in a Dog’s World has a fabulous response with some ethical questions and why we object.
ASAN has issued a press release on the matter.
ASAN of Northern VA has an analysis of the video worth reading.
The afore mentioned post by codeman38 in the Aspergers Community on LJ.
Kowalski has some parody suggestions!
LeftBrainRightBrain has several posts on the topic.
Asperger Square 8 Has some Counter-Advertisements.
Club 166 Comments on it extending the Ransom Notes hoopla.
DJ has written an excellent post that includes an “I Am AutismSpeaks” script.
Codeman38 has posted on his own blog.
-I left to visit the afore mentioned Grandmother, and it went on!
* I have saved these to my harddrive in case of site take down.
