I am not really sure how to start this post, in part because I feel like saying anything would be a risk. A risk to my on going well being, a risk to my security in housing, in healthcare, in access to the basics. But I think that that fear is just a symptom of what I’m talking about.
Last March, my placement on SSI was approved by a judge. I think my lawyer was a good one, even though he was the sort of man who terrifies me because his demeanor triggers some unpleasant memories. The judge didn’t even ask me to come into the courtroom- he decided based on my paperwork to offer me a deal which included me having a payee, which is actually something that is preferable to me because of the sort of things I have difficulties with. The waiting room was tense, and there was plenty of papers to sign, but in the end it turned out alright. My mother and I went to the sushi place across from the courthouse there in Wexford, and I had avacado and cucumber sushi.
The problem lies in what it took to get to that point. You see, the entire process involved looking at everything I can do, and find the limits, the deficits, and the flaws. Highlighting the things that I can’t do, and expounding rather than ignoring or accommodating for how they touch every single aspect of my life. There is nothing that was allowed to be “good”- not even something relatively meaningless like my IQ, which the lawyer was displeased with.
My lawyer was very thorough with his prep. Really, that is part of why he’s a great lawyer for this sort of law. He knows what they are looking for, and he is forthright. It’s a difficult process, even with the assistance in figuring out the paperwork and who to talk to to get the evidence that is asked for and so on. It is hard work, draining and demoralizing, even with the support I had.
Part of the prep work involves the lawyer working with you to help you communicate how thoroughly your disability impacts your life. I had been brought up by a mother who tried to emphasize strengths based approaches, ones that could limit some of the trauma that society can cause when your brain or body doesn’t work within the range that the average person does. This process was the opposite. My strengths were to be minimized, the limits that my disabilities put on them emphasized. Uplifting language was considered not appropriate, as it was said to disguise the impact that my struggles have.
That I believe in and on my good days fight for disability rights was even considered a hindrance My lawyer told me he hates activist/advocate clients, and only because we have harder cases to make. The language and work that keeps us from despair, that gives us some hope that some day life will not be as much of an up hill battle, that says that we should and someday will be seen as equal- all of this was something that is looked down on and despised. The fact that we want to and can envision the sort of world where the supports and environments we need to not have to go through the SSI/SSDI process in order to survive is too uplifting, too insightful for us to need and “deserve” anything in the right now. The fact that it is just a hope that is still being worked toward, that that world where those supports exist isn’t here fully yet, is irrelevant when it is something we believe in.
The preparation process also involved undermining a lot of the work I had done to allow myself to get by in my day to day life with a limited number of meltdowns and panic attacks. I still deal daily with memories of the things that were said to me by my step father and some of the providers when I was young. I have many little things that will trigger the memories, that will make me slip into the words that were said. Before going through this process, I had a few things that I would repeat to myself to counter them- it didn’t make them go away, but it made it so that I was left with shorter periods of distress, or delayed reactions. But part of the process was to emphasize the counter arguments- that is, to repeat in a not as cruel way the things that caused me trauma in the first place about myself. To emphasize incompetence the futility of the things I have achieved and the impossibility of success at the things that I wanted. To demonstrate less than.
I find myself, now, more incapacitated by these things than I have in years.
Throughout, I’ve clung to my advocacy and activism around disability. I’ve felt like a hypocrite, or like I was-had to be- doing it for someone else, because what was being re-taught to me was so against it all. But I’ve also felt like I was surviving, that this work was like some sort of safety line. I don’t know how well or if I would have survived it without.
Perhaps the level of struggle I’m having has to do with the nature of some of my disabilities. That perhaps the anxiety disorder processes and the tendency toward fixation from being autistic are what they call a perfect storm, moving towards a cataclysmic failure when they interact with a system that encourages devaluing. The part of me that thinks this reflects about the way that some of my friends don’t seem as traumatized as I feel from their time going through this. I know that in some cases this isn’t true- it’s just not something they want to or can discuss. I know trauma is like that, from both personal experience and from the writings of others. And yes, perhaps some really weren’t traumatized by the process, left struggling inside more while their supports and safety outside are stronger.
But as much as the part of my brain where the fear lives fixates on that, the part where logic lives knows that it’s irrelevant. No one should be coming out of this process struggling emotionally more than when they entered it. They should be in a position where the security and services that become available allow them to gain skills, either to better their quality of life or to eventually not need financial support, even if they do need the medical. None of us should be having to scrape back old skills because we lost the connections that allowed for them.
I’m terrified to post this. But perhaps that is because of what I’ve written- and maybe that fear is what has kept someone else isolated too.
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)