Places all over the internet, people are posting about things that they are thankful for this week. Today I’m posting about something that people expect to be thanked for, but which honestly I shouldn’t have to be thankful for. That’s right, I’m talking about your good intentions.
I was recently at a conference when I was confronted with an intent vs impact situation. I won’t go into the details- I was satisfied beyond belief by how the conference manager tried to remedy the situation- but in the aftermath, I realized it was time to write this post.
You see, when the conference manager tried to address the situation, the individual- who had said that I “wasn’t Autistic” and in response to my reaffirming my diagnosis “but you seem so nice”- responded that it was all “meant as a compliment.” This is not an isolated issue, as any number of advocates can tell you. Being a person with a disability can sometimes mean you get the “compliment” of being told that you “don’t seem that disabled” or that you are “so inspiring.” It also can mean that when you get upset about this, people pull out their intent.
But here’s the thing: intent isn’t magic. The fact that you were intending to pay me a compliment doesn’t obligate me to be thankful when you say something that reinforces stereotypes about people like me, or when you say something that can make it harder for me to get supports. The same system that tells you that saying someone isn’t disabled is a compliment is also at the same time telling people it is okay to say dehumanizing things about PWD, because we are other or aren’t “nice” or are all the things that you are not associating with us.
Neither does your good intentions insulate us when we are in a position where we aren’t looking so “not disabled.” The gentleman’s insistence that I wasn’t like the kids his wife teaches didn’t stop me from having a shrieking sobbing meltdown in my county assistance office this week over something I couldn’t recall. In fact, his remarks fueled the same culture that I catch myself falling into by accident by thinking, “good thing I was the only one in that waiting area.” His intent doesn’t stop me from the horror that is finding myself thankful for the assistance office secretary not calling the cops or the ambulance on me, which is a real and present fear every time I get overwhelmed or frustrated with myself in public.
I should never have to feel thankful for people treating me like a human being. Not even when I am at my most incomprehensible impossible to communicate during states. Not even when I’m at my most obviously disabled points. I should never have to thank a stranger for allowing me to exist.
Your intentions don’t mean that you aren’t holding up a system that asks me to give thanks for these things. Intentions don’t mean your impact is mitigated, doesn’t relieve you from being implicated in a system that one day will say I’m not needy and the next that I’m too needy to be seen as fully human.
Don’t worry, I (and every person with disabilities who has been around long enough) know that you call us human, we’ve had you and so many others tell us all about your intent. But your intent and your actions just don’t line up, not really. I want to believe it when you respond to my concerns that you don’t think x bad thing about Autistics or about PWD or… But your actions tell me differently.
Your impact reminds me that all of this, all the things in our culture we are socialized with say that your intent makes you a good person. That your intent makes you more accepting and worthy of thanks than the general public. That of course your actions won’t perpetuate the group think that says those horrible things you say you’ll never say.
It also reminds me that you’ll still say them by accident, because those horrible things are a basic intrinsic thing in our culture that we have to watch for. That your privilege means that you won’t remember that the things you say about how unusual it is for me to be nice and Autistic are hurtful. That you don’t have to worry about how able is “normal” and disabled is “bad”. It means you’ll laugh at the joke in the men’s room about hand flappers, and that you won’t blink when you watch a movie where the murderer rocks to himself. (I watch those movies too, I’m a fan of horror and what not, but my goodness do. I. Blink.)
So no, I’m not thankful for your good intent. And it’s not that I’m not capable of being thankful.
I’ll save my gratitude for actions and impacts that help not harm. I’ll give thanks for the thousand tiny actions that are good, intentions or none. Indeed, I am thankful every day for such little things, and some days for huge things.
I’ll find myself thankful when my mother opts to have a conversation with me via instant message even though we are in the same room. I’m thankful when someone helps me with a form or reminds me where I’m headed, regardless of if they know why I’m needing help. In the same assistance office where I melted down, I was thankful that my intensive case manager being on the ball meant my meltdown didn’t relapse over and over the rest of the day.
I’m thankful for having found community with my fellow Autistics and other PWDs. I’ll be thankful when we manage to balance a bunch of different food restrictions that sometimes contradict- after all, that is an accomplishment with or without intention or culture!
I’m still not going to be thankful for your good intentions. I’ll save that emotion for the good impacts.
A quick note: I’m only posting this today because of all the “I’m thankful for” posts. If you are looking for something about Thanksgiving, I’d encourage you to do what Occupy Boston is doing in centering indigenous voices. “No to Thanksgiving” is an excellent history piece you ought to read. There’s a list of Indigenous tumblr-ers for you to follow, Blogs like Native Appropriations to read, Or check out the tags on other multi-topic blogs. Sciological images has a Race/ethnicity: American Indian/Aboriginals tag, for example.
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.
Being polite is this really tricky thing for me.
On one hand, I know that I struggle with being polite, even when I mean to be. There’s lots of little things that even after ages of studying, I miss. And those little things end up having big consequences as to how I’m taken. I miss a signal to stop, I’m “over bearing;” I miss that I’m supposed to say something/contribute, and I’m “Unfriendly.”
As a kid, I would try (when brave enough) to mimic the “playful” teasing I observed between my peers, and miss that it had slipped over that vague line of playful. I was shocked and hurt to hear my mother mention my on occasion ”bullying” kids who were trying to be my friends. But the rest of the time, I was too “shy,” too “drawn into my own world.” It seemed as though there was no way to reach a happy medium in between, the one where other kids would presumably like me.
I’ve gotten, I think, a little closer to a manageable compromise. I’ve decided against listening constantly and desperately to the coaching and pleading, and generally try to be nice, opting to withdraw rather than risk it.
There are exceptions, of course. I tend to have a highly developed sense of right and wrong, and sometimes there’s just a little too much *wrong* in the world. Then I seem to slip up.
Let me give you an example. Recently, I was visiting my Aunt in NYC. She married a guy who has done pretty well in contracting, and so yes, there’s a good bit of a class difference. In any case, we were having conversation with my sister and step aunt, nd she started going on and on about how great “The Secret” was. She was recommending it to my sister. After a while, I couldn’t handle it any more.
I stated that actually, a lot of people who are facing various oppression (Like classism, racism, or ableism around Mental Health Issues) find the culture around subscribing to The Secret to be very hurtful. Too often, people whose issues face against more than the white middle class abled “mainstream” are said to have not worked hard enough at it for the “Laws of Attraction” to have worked. The Secret in too many circles is used to both deny privilege and to blame oppressed peoples for their continued struggles.
That’s not to say that there aren’t people for whom it works and is mega helpful. But to hear it go un-critiqued when recommended to my sister- who like me comes from a different economic class and who has her own disabilities- was not something I could handle. I Had to say something.
I later found out that she thought I hated her, in part from this and in part because of not interacting otherwise as she expected. Which isn’t true- I love my aunt very much, I just get frustrated by what I see as obvious class differences and how they effect how we see the world.
In any case, I end up feeling as though I’m too mean.
Online, it’s a little bit different. Somehow, I feel as though I’m a little too nice compared to some of my friends and fellow advocates. Maybe it’s who I spend time with. I often feel like there’s so much of my conditioning from childhood of trying to fit in, to dodge some of the less than wonderful experiences of “treatment” that makes me try to be nice all the time. To educate instead of protecting my boundaries.
Most of the people I know in Social Justice circles know that it’s not an oppressed person’s duty or reason for being to educate those who hold privilege over them. It isn’t, for example, an Autistic’s (or other person with disabilities’) job to live as a “self narrating zoo exhibit” as Jim Sinclair would say. It is the oppressor’s duty to get educated, not the oppressed’s to educate.
But I cannot bring myself to not educate. Trying to establish boundaries like some of my friends have is something that leaves me feeling torn. And I know that it is okay for me to educate people, but sometimes I worry it makes me seem too *nice* when compared to some of my friends. And I don’t mean nice in a kind person way. I mean nice in a too compliant way.
Nice in a way that would make people I love and respect look down on me as feeding into my own oppression. Or, perhaps, in a way that belies how deeply ableism has infiltrated my thinking. There’s a lot of things I keep stumbling across when I go to examine my thoughts that remind me how much of life as someone who- in my case- is an Autistic and has MH issues ends up being about compliance in order to survive.
How much of my desire to be kind is based on my beliefs, and how much is based on the feelings that I need to be “nice” in order to be worthy of surviving, of getting the supports I need?
I’m not going to stop being kind, or educating people. I will admit I can get s little sharp- for me- on my tumblr, but that’s tumblr and a lot of it is reblogging other, sharper people’s comments. But I’m not going to deny that drawing the line between being kind and being compliant is difficult.
But then again, undoing the things we have internalized is never easy.
Sorry if this isn’t at my usual standards. I just needed, for myself, to write this.
This has been republished at Shift Journal.
Trigger warning: discussion of trauma, both sudden and violent and prolonged and subtle. Also for Racism and Ableism.
This is what healing looks like. It doesn’t look like sitting under a tree on a clear day, or walking with your homogeneous looking family. It isn’t playing frisbee with grandkids and their dogs, and it isn’t lifting your hands in victory after climbing a mountain.
Healing isn’t pretty. It hurts sometimes. You have to dig around and realize exactly what has happened to you, what attitudes and perspectives you’ve been taught to frame your world in. It isn’t something that happens all at once, or in a short time.
I was sobbing because I was healing. I was realizing just how much my world and what I engage with was based on the abuse I faced and the things my abuser said. So I took a picture, a reminder that this feeling and this confrontation is a part of healing. Of undoing the damage that was done on me, that was continued through me.
I was watching the “Pretty Girl Rock” video. And it came to the part where the style of TLC was depicted. I remembered the day I heard Left Eye had died. I was sitting in a hotel room at a CASSP conference in PA. The world had gotten overwhelming, so I had retreated to the room to watch MTV. I cried as the alert scrolled across the bottom.
But when we got home, and I mentioned it to my abuser he scoffed. He said that she was crazy, that she was a druggy, that she was “bad” and that her death was due. He equated her race, too, to her inadequacies. I went to my room, and I played TLC’s Fanmail on repeat.
But from that time after, I didn’t listen to rap, hip hop, or R&B. There was something lost to me after that. A desperation to stop being “other” in order to avoid the abuse I faced, to stop being “crazy”, stop being a “Social Retard.” I told myself that it was because of the way that things have changed, because of misogyny, because of glorification of “Ghetto” culture in the main stream music.
But the reality is that I had turned those things that were said to me, that destroyed my faith in the world inwards. They were all connected, all tied to those things that were labeled undesirable to my abuser. That avoiding them somehow would make me safe.
Looking back, I can see how these things played into his racism, his ableism, his xenophobia. That they fit his words on people with mental health disabilities, how we aren’t fit or competent and how those of us with developmental issues would “never grow up.” How his deriding of non-white people, his saying that black people were sub species, interplayed with his ableism and his sexism.
“Lazy Nigger Bitch” he called me one day when I couldn’t get my brain to move fast enough, to disengage with what I was doing. This might have been the same day he threw my typewriter on the floor, shattering it, for the same reasons. In any case, he combined all the things he saw as “bad” into insults, into things that I would hope to avoid in order to make myself safe. That by avoiding association with certain “elements” I could somehow make myself safe.
That particular incident was 10+ years ago, but now I’m just starting to see how much it twisted me, and made me a victim of fear. How much it made me enable systems of power that would continue to oppress both my friends and myself. To realize how much these systems of oppression were twisted against me, and against those I love- and those I’ve never even met.
This, this disassembling of the systems he re-inforced in my brain? This, this determination to fight the injustices he made me think were universal and unchangeable?
This is healing.
(Post started in Dec 2010, finished march of 2011)