Consent is Not a Vocabulary Exam

This post contains a graphic description of a sexual assault. If you would like to skip that section and go on to a discussion of consent, skip until you are past the picture of the cat. The rest of this post is less graphic but does discuss consent, sexual violence, and consensual sexual contact. If none of this appeals to you, then skip past the cherry blossoms picture to learn about Woodhull, and the shirts we are selling to support us attending it. Thank you. 

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It wasn’t the first time I had been sexually assaulted. Knowing what it is to be in my body in this world, it likely won’t be the last. I feel like I need to preface this with that, because it’s not even the worst. What it is, though, is an assault that happened at just the right time for me to be segueing into a new career as a peer sex educator after years of policy advocacy.

In February of this year, I was in Chicago visiting my romantic partner and fellow autistic advocate, Timotheus. We had just made the decision that I would be coming off of my birth control pill despite my PCOS, which it was treating, as we want kids in a couple of years when we move in together. It was a pretty great visit up to that night. We were going to a friend’s party where we were dressing up- I was in a golden space kitty outfit and felt cute, and he wore a black panther mask he had picked up.

We’d left our things, including our street clothes, in a bedroom with a bunch of other people’s things.  It had been 3 or 4 hours since I’d had anything to drink myself, and I was getting tired. Unfortunately a friend had gotten sick specifically on our things, so when it was time to think about going, I had to re-bag stuff and sort “sick covered” vs “okay.” I left Timotheus in the living room right outside the room talking with some friends to get ready to leave.  I couldn’t get the overhead light to work, so it took longer than I’d expected.

I was almost done when a man and his girlfriend came in. They had been watching me most of the evening, but I was looking fabulous so I had thought nothing of it. They came in, her giggly and drunk, him smirking, and closed the door. I can’t remember what exactly he said at first. I know he directed her to get on the bed behind me. I know he kept suggesting I play with them. I know I told them that I was not playing. I said they’d missed any chance to “play” with me. I know I was stiff, polite but disinterested.

I know that he took his penis out. I know I couldn’t bring myself to shout. I know that I pressed my lips together tightly and turned my head. I know that between the two of them, I ended up with his penis pressed against my lips as he groaned out, “I know you want this dick.” I know he pressed through my lips, rubbing the head of his penis against my teeth, trying to find a way further into my mouth. I know he told his girl to take care of my breasts. I know I gasped through my teeth, holding them clenched so his penis wouldn’t get past them, when she took my nipple into her mouth and sucked.

I do not know how long it took. I do know it felt like ages before, realizing they would have to use more force than this to engage with my vulva, he put his penis back into his pants and told her they were done here. They left the room, her giggly and him still jovial, and left the door ajar. I felt frozen and I couldn’t speak for a few minutes. I peered out the door hoping to see Timotheus and when I did I pulled him into the room. Our friend Jimmie came with him. They hugged me and tried to soothe me while I cried and babbled and shook.

When the guy who did this to me appeared, asking if I was okay, I shut down. I know that Timotheus tried to defend me, but I was in a state. I was shifting between the current trauma and something that happened to me when I was younger, which I don’t want to talk about yet. If Timotheus wants to share what happened, he can. If he doesn’t, he doesn’t have to. It was in fact traumatic for him as well. For a while our friends had to split time between both of us. I know the hostess defended me, and everyone except the guy who did it and his girlfriend was supportive of me.

I still remember him shouting in the hall as he got kicked out of the party, “She didn’t say no!”

As if every other action didn’t also scream no, as if politely dismissing him was an enticement.  I’m sure if anyone asks him about it, he tells it as if my not saying that particular word somehow made every other word and action irrelevant. That my inability to scream while it happened, my inability to make that specific word happen, that I went into a comparatively non-verbal state while they were doing it, somehow makes him blameless. (It doesn’t.)

The hostess offered to have me make a report, but I couldn’t. I am afraid of cops, and have had a couple of experiences that made me distrust them even before supporting advocacy around police misconduct. That plus the already panicked state I was in, I couldn’t deal with it.  I was unable to do much more than shake and cry for hours it seemed. I think I tried to pack up my stuff to leave- I know I’d intended to, to minimize the impact of it on anyone else- but the hostess ended up giving me and Timmy space to sleep over. Which is probably a good thing, I was in too panicked of a state to have been able to drive safely. (Unfortunately, because I didn’t leave that night I got a parking ticket the next morning.)

I felt cold, and no amount of blankets, hot water, or anything else got me warmer. Near dawn, I finally came out of shock and felt warm again, pressed tightly against Timotheus. I then drifted off to sleep.

Timotheus supported me, helped me heal a lot as we supported each other in dealing with what had happened. I hadn’t been vaginally raped, so we didn’t have to worry about the fact that I had gone off birth control recently.  He hadn’t penetrated past my teeth, so I didn’t need to worry about a lot of things. The man who did this didn’t even cum so I didn’t have to worry about that either. The hostess was taking care of making sure that he wouldn’t be welcome in our shared social circle, and our other friends in the area were supportive. I’ve been healing relatively well.

*** Kitty Break!***

A warm grey tabby peers down at the person holding the camera from their shoulder menacingly. They are laying in bed.

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We talk a lot in sex education about enthusiastic verbal consent practices. It’s a best practice for sure, but also complicated for those of us who are either situationally, intermittently, or permanently non-verbal, or for those of us who experience aphasia. I don’t think that my inconsistent verbal skills need to mean I can’t engage with people sexually, even when my asphasia and/or my “selective mutism” is kicking in. I don’t think that my friends who are non-verbal but have sexual interests and ways of expressing yes and no should be denied access to their sexuality. I don’t think people who use AAC should be prevented from accessing their sexuality.

There’s a thing that I’ve heard that has stuck with me: If my “yes” is meaningless, if it means nothing to the people who support me, what do they think my “no” is? Are they really able to respect that? What if only my verbal “yes” is acceptable- does that mean that they will ignore my non-verbal “no” unless I give a verbal one? What if they only accept it if I use the right words? What if it’s only when I say no politely, regardless of how I say yes?

These aren’t idle speculations. From my own assault to the assault that those with personal attendants experience and have dismissed as “unintentional,” this is a real issue for disabled people, particularly those of us with cognitive and neurological disabilities. I have friends who have been forcefully showered, had their erogenous zones touched while they flailed and while they sometimes said no, and when it was reported it was reported as THEM having difficult behaviors or being a difficult client, and the staffer who violated their bodily autonomy was “doing their job.” Even if they aren’t attempting to assault someone sexually, they have- and they need to know that they need to learn different ways to get the job done that respect the person’s bodily autonomy.  Sometimes it’s a violation that isn’t sexual, like an elder of mine who was made to go to bed at 7pm despite saying no repeatedly and escalating to swearing. She was threatened with losing her provider for that one, which for her would mean going back to the nursing home.

While my no is important to my safety and well-being, so is my yes. I am a sexual person, with sexual preferences, orientation, and needs. Even asexual people have preferences and needs about what kind of intimacy they want, be it sexual, physical, or neither, and with whom. But in my case I am the sexual sort of person. The sexual, queer, polyamorous, autistic sort of person. If I don’t engage sexually, either alone or with partners, my well-being suffers. And as someone who does engage sexually with partners, my yes can be nuanced. My yes might involve specifying barriers, specifying if I’m trying to conceive with a partner, discussing STI statuses and how to stay safe. My yes involves what kind of interaction we need to have after in order for us both to benefit from the experience. My yes involves conveying what I want and don’t want, and later what I liked and didn’t like. My yes is a thing, a process, more than a word even when it is a word.

My yes is not always verbal, and not always words. Sometimes I text or message a partner, ahead of time or while sitting next to them, negotiating consent that way when my voice isn’t putting out what I want. Sometimes we point, we touch, we shake our heads at this or nod at that. We flinch, we surge forward, we freeze and withdraw from touch. Sometimes a series of gifs or emojis conveys an entire conversation. It all depends on the communication needs we each have when the time comes. Sometimes we indicate yes and no, proceed or stop, with one or two words or indications we’ve negotiated ahead of time.

As someone with verbal inconsistencies, who engages sexually with other people who might have their own verbal inconsistencies, we negotiate our own language of consent before we ever engage in the sexual. We learn to trust what works for us before hand so that we can trust each other in the moment. It’s complicated, and messy, and difficult sometimes, but it’s also astoundingly beautiful even when it doesn’t result in sexual engagement. It’s an intimacy of communication, an intimacy that only works if we have trust and consent. An intimacy that is dependent on the people involved, not a specific vocabulary list.

*** Cherry Blossom Break! ***

a photo through a cherry tree in blossom, with a garden out of focus beyond it

***

Woodhull’s Sexual Freedom Summit falls on my birthday, August 2nd, this year. The Woodhull Summit is a place where sex educators and advocates come together and share the ideas and practices that they are seeing or developing. I want to go for my birthday, and bring Timotheus with me as my partner, supporter, beloved, and future nesting partner. Washington, DC is miserable around my birthday, but it’s 100% worth it to me. It’s worth it to meet some of the sex educators who are influencing the field and my personal career trajectory. It’s worth it to support my friends who will be there. It’s worth it to get a chance to check out the latest in the field. It’s worth it to network professionally, as I’m segueing into a new career: peer sex educator.

I’ll post more about what this career change means another time. The short version is that I want people to have the tools, information, and access to have the best sexual and reproductive health and the best intimacy, sexual or not, that they can have if they want it. I don’t want lack of information, accessibility, or options to be a barrier. I want to use the creativity that being disabled in this world has coaxed from me to come up with new ideas and troubleshoot access to sexual and intimate health for my fellow disabled people. I want to fight the ways that these things are robbed from us.

With that in mind, I’m running a bonfire campaign for a t-shirt design I made, “Consent is not a Vocab Exam,” inspired by my own experiences around communication and consent. This is a phrase that became powerful to me right after my assault, and has blossomed into so much more. The shirt comes in unisex, unisex v neck, ladies’ cut, unisex tank, ladies’s cut tank, and pull over hoodie. Each cut comes in 5 different colors, and some of the cuts and colors go up to 3X. The least expensive option is the unisex T, but if you can afford and/or prefer the others, they all support Timotheus and I attending Woodhull.

A black T shirt with white text reading, "Consent is not a Vocab Exam". A line drawing of a pencil is next to it.

This is the black unisex cut. Each cut comes in 5 different colors though!

 

Too much of Sexual, Intimate, and Reproductive Health education is cognitively inaccessible, especially for those with cognitive disabilities. We need new strategies, we need new ideas, and we need to make sure that other people in the sexual health field know not only that these issues are important, but that disabled people aren’t going to let these issues get ignored, sidelined, or talked over by our families.

You also have the option of donating money through the Bonfire campaign, though I’d prefer if you got a shirt- if not for you then for someone you love. You can also paypal me money with a note that it’s for Woodhull, and I will set it aside for that. I’ll be launching some other fundraisers too- probably another t-shirt, and if I can get back into my gofundme account one of those. I’ll also be making a post with a breakdown of expenses, and in that I’ll have some rewards listed.

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Action Steps:

You can follow Timotheus here: Black Autist Twitter, Timotheus Gordon Jr Twitter, Black Autist Facebook page, Timotheus Gordon Jr Facebook page, and The Black Autist blog on Tumblr. He will be posting a companion piece about how the assault and its aftermath effected him, and about processing that experience as a supportive partner of someone who was assaulted in the next room at some point.

Follow Woodhull and learn more about them on the Woodhull Twitter, the Woodhull Facebook page, the Woodhull Sexual Freedom Summit Facebook page, and the Woodhull Sexual Freedom Summit website.

Learn about Bonfire, and buy a “Consent is not a Vocab Exam” shirt! 

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Why Privacy Matters

… even when you are willing to disclose.

Tomorrow, Friday, April 26th, 2013 there is going to be a hearing about HIPAA. Well, that’s not exactly accurate- it is about HIPAA for those with psychiatric disabilities or seeking psychiatric care. But no, this isn’t an entirely accurate description either. It is about how some people truly believe that those of us who receive psychiatric care and have our HIPAA rights respected are somehow a threat to public safety.

They believe this even though our providers are mandated reporters, people who have an exemption for threats of violence to others or one’s self. They believe this even though we are more likely to be victims of violent crime than to commit it. They believe this even though when we report on the violence of others, our voices and experiences are discounted.

They believe us as such a huge threat, despite evidence to the contrary, so much that they won’t even be having any of us at the table as they talk about taking away our rights. That we aren’t able to be truthful, competent, or able to speak for ourselves to such an extent that Representative Murphey has gone on air with his belief that we would be incapable of testifying and that the most important conversation is one about parents and families’ experiences.

Those of you who follow this blog just for the Autism angle might recognize that sort of language. It’s the same sort of language that made our fight last November to get Autistics on the panel of another hearing so important, and that makes our objections to how we are portrayed in the media so necessary.

I’ve heard from some corners of the autism communities that the issue at these hearings isn’t about us, or that some of the efforts that autistics (and ASAN) are doing around this hearing are somehow conflating “mental Illness” and autism. Setting aside the fact that in some places autistics without ID are only able to access supports through the mental health system, and setting aside the fact that some of us have additional disabilities that happen to be in mental health, I still have to disagree. These are the same issues that we face, the same ways our voices are invalidated and our societal consent voided.

Even where we aren’t also people with psychiatric disabilities (and a number of us are, either by birth or because having society tell you you aren’t worthy tends to be traumatizing) , we should be giving our solidarity to the people who are fighting the same fights. And we are fighting the same fights against ableism, albeit from slightly different angles. We have a stake in this too- because ableism isn’t just actions. It is systemic. It impacts all of us, though often in different ways, regardless of our exact disability. There’s a reason we need a cross-disability movement, and the strength we have in supporting each other is just one (important) part of it. There is a song that goes, “None of us are free if one of us is chained,” and you know what? There is a certain amount of truth there.

There is also, of course, the fact that co morbid mental health disabilities or not, many Autistics will be served through the mental health system. The sort of policies this hearing may engender often don’t care if you are receiving services for mental health. They only care about what the services you are receiving are classified as.

I personally am multiply disabled. I have multiple reasons to care about this issue, and that is just reasons that have only to do with myself. There are even more when I think about the people around me.

I am someone who is all about disclosing. I’ve talked, in the past, about topics that are very personal and are too much information for some people. It’s ok if you aren’t comfortable with that, but I have done it for a reason: for every time I’ve had a comment or email expressing concern that I’ll disclose details of my life, particularly as it relates to medical care, I’ve received one if not multiple telling me thank you.  Because they? They don’t feel safe disclosing and it has left them feeling isolated.

And that’s the thing, isn’t it? That people don’t feel safe, or comfortable, and they feel that way for a reason. it is the same reason that disclosure is currently a political act: because the negative consequences can be so great. People regularly face discrimination when they disclose, particularly when their disclosure is about a highly stigmatized disabilities. There is a reason both psychiatric disabilities and autism are on the list of such disabilities that the Department of Labor’s ODEP put out- people unfortunately are still fired or even denied a hire on the basis of disability, even though it is against the law. Housing, too, can be riddled with discrimination, leaving affordable and safe housing harder and harder to come by.

Even disclosing in the medical community has negative consequences. This past month, we had a prominent, multiply disabled, autistic voice who had to fight medical discrimination to have a life saving procedure. So, too, do people with psychiatric disabilities find their medical needs and wishes challenged. I cannot begin to count the number of stories I’ve heard in which people I know, either personally or through my advocacy, whose medical conditions were ignored or even blamed on their having had a mental health diagnosis. Either way, they faced a denial of timely and appropriate medical treatment, not because of a lack of disclosure between professionals, but because the stigma is so great that when we disclose even medical professionals have their judgement clouded.

Just as other people with disabilities, people with psychiatric disabilities have our abuse and murders excused as treatment. Our families feel justified, or at least are told they are justified, in abusing or being complicit in the abuse of us. After all it isn’t just Autistics being shocked at the JRC– young people with psychiatric disabilities are also sent there. Indeed, there is a whole industry around sending young people with psychiatric disabilities away to isolating and sometimes dangerous camps.

I am someone who takes the risks that comes with disclosure, but no one should have the choice to take those risks taken away. It has far too dangerous a set of consequences to take consent to disclosure away from the people whose privacy it would expose. Far too dangerous to take away the right to privacy of a group that must rely on privacy in order to both get support and to avoid discrimination.

I would encourage all of you to sign the petition that ASAN has written calling out the chairman of the committee for excluding the voices of people with psychiatric disabilities in a hearing that could very well threaten their rights. If you are in DC and are reading this in time*, please try to attend the hearing, even if you just end up in overflow**.

Our privacy, even if we chose ourselves not to keep it, is a right that no one should be taking from us. Talking about doing so, let alone having that discussion without us, is reprehensible.

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* I’m sorry I didn’t get this out earlier. I tried, but kept getting stuck on the endless examples that can be found of both how we face discrimination when we disclose, and how the language that is being used to justify the lack of People with Psych disabilities is used to justify other miscarriages of justice.

 

**I personally cannot make it- not only because it’s out of my budget to go to DC last minute, but also because tomorrow I have to go face the housing system to prove I deserve to keep the voucher that makes being not homeless affordable. So please, if you can, go; there are many of us who would like our voices or at least persons represented, but cannot make it ourselves.

It Goes All Ways

Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities. 

When I was 20, I did not love myself.

I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were somethings it wasn’t “right” for me to do.

I had moved back home, having had my stint trying to be what I thought an “adult” was fail. A lot of my plans had failed: I’d been so unsuccessful at maintaining a home that I became deathly ill; I hadn’t sought out the support I needed at college, and had to drop for lack of funds; and I couldn’t get a job. I saw myself as incapable enough that I wouldn’t be able to kill myself, and went to the hospital again. Case management was better this time than they had been in the past. They were involved, and we worked on a self care plan.

“What about having kids some day?”

I told her I didn’t think so. I feared. I feared that I’d be incapable as some people assume about people like me. I feared that I’d be stuck in a cycle of hospitalizations, and that having a kid would mean they would lose their mother every two years. I feared that I wouldn’t know how to get support— I certainly didn’t know then what my needs were well enough to articulate them. I didn’t even have a strong enough concept of disability to think of it in terms of supports. I just feared, and I hated myself, and I pushed both of those feelings away by ruling out the possibility. I told her no, and refused to engage in that discussion.

People like me aren’t just told these things. Some of us, like the poor and People of Color, are or were forcefully or coercively sterilized in procedures we didn’t want to consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us are coerced with them, denied a valid choice. We are lied to about our health, about our ability. We have our lives reduced to a gene, to things not to want our kids to inherit. We are told that having or keeping our own kids is by definition abuse. We are even sometimes ordered to go directly against our choices, or threatened with those orders. Our attempts to speak back are often co-opted by groups we may or (as in my case) may not believe in. The idea that we might even be sexually active in a way that might lead to us being parents is even seen as remote.

To be clear: I know plenty of people who have chosen not to have kids.  They made a choice to be child free, of their own free will. It’s fine if they stick to it, and it’s fine if they don’t.

I don’t consider my choices when I was 20 about kids to have been of my own free will. My responses were societally coerced. I had so much self hate, self doubt, and fear that I had internalized that I didn’t feel like I even had a realistic choice. I thought that the choices open to me were to abort or put a child up for adoption. I had been told for so long that someone like me would by default be a bad parent, or an incapable one. So I felt like I had to reject the very idea of having kids when it was offered as a part of my future.

Around this time, I became more active in disability rights work. I’d been doing advocacy since I was very young, but hadn’t connected with the larger disability rights movement. I started writing and believing in disability rights, coming to identify as a person with disabilities rather than hiding them where possible. I even, at one point, had a friendship end because the other person kept arguing that people with intellectual and/or developmental disabilities who need supports shouldn’t be having kids. I believed that People with Disabilities had these rights.

I just didn’t believe in them for myself. I had spent too long in choices dictated by fear and internalized ableism, and uprooting that is a long process that never seems to be over.

About 5 years ago, my younger sister found out she was pregnant. She was 16, and it wasn’t intentional. She was presented with her options— I know, as I was one of the people who went over them with her— and she chose to carry and keep her child. I won’t go into too many details about her pregnancy other than to note that yes, the hormones that come with pregnancy interacted with her disability (she has Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and was and is gorgeous.

My sister has had the support of our parents and other family members in the 4 years, almost 3 months since my niece was born. I watched (and helped be a part of) the supports that she needs to be a successful parent.  During this time, I became less and less afraid to ask for supports and accommodation, and slowly gaining the words to communicate and to define what my needs were. I also was becoming aware of the “wants” that I had been avoiding thinking about because they didn’t seem reasonable.

I realized that I would like, someday, to raise a child. I began to think about what I would need to have in place to be the sort of parent that I want to be.

There are some problems, though, that I’m more worried about than others. I have some reproductive health issues that sometimes, but not always, result in infertility. It is treated through a combination of medications that includes Hormonal Birth Control. The reason, in fact, that I’m not currently passed out in my shower or vomiting in pain due to this condition is because of those pills. It raises questions, both about how I’d be able to handle/treat my health conditions when trying to have a child, and if I’d be able to birth the child my self. I’d like to, but if I’m not there are other issues involved.

Fertility treatments can be harder to get when you are disabled.  While it is against the law for a healthcare provider to reject someone on the basis of disability, this type of provider can reject someone for personal reasons. The Office of Technology Assessment of Congress did a survey of artificial insemination providers, which is one of several options in infertility treatment. They found that a large percentage screen for psychological, developmental, and chronic health issues when doing tests to decide on treatment recommendations. For example, 79% screen against hypothetical patients with serious genetic disorders. Another study found high rates of doctors deciding against treatment for or rejecting hypothetical patients with various disabilities, including past suicide attempts (around 40% answered likely to turn this group away) and bipolar disorder (34%).  Adoption, too, is more difficult.

And this is just in the seeking to have children portion of things. Even if my health issues have not impacted my ability to have children, biases against parents with disabilities result in higher inappropriate removal rates, unfounded reports, and evaluations that are not built to accommodate the adaptations that a parent with disabilities may have established. The Family Law system is simply not designed in a way that accommodates people with disabilities. (Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children from the NCD has several chapters on these issues.)

I continue to think about supports, as well as the sort of environment I’d want to raise children in. I know that I’d need a partner dedicated to the family we would build. I’m good with kids, even babies, but I do need times where I have breaks to restore my stress, anxiety, and frustration levels. An involved partner would help with this. I might need alarms and reminders, but these are things that are more an more on the market for any parent. I personally want to raise my child in a Jewish home, with a Jewish co-parent. And, of course, for our family to be one that is highly pro-disability rights.

I want to have children. I want to raise children. Even though I’m frightened. Even though people will challenge if it’s a right I, and people like me, should have. Even if it’s not going to happen for a while. Even though it will mean needing different supports than I need right now. It doesn’t negate the fact that I’m pro-choice any more than it would for any other person wanting to become a parent. To me, it is about choice— about choosing the option that is right for me, myself, rather than having my choices about my body and my life made by someone else.

This is a choice that I’m wanting to make and someday follow through on— and finally, it’s of my own free will.

Inside and Outside Safety

[Content warning: Mentions of violence towards PwD, both external and internal. Passing mention of the R-word and of a cat dying.]

“If you are silent about your pain, they’ll kill you and say you enjoyed it.”

 -Zora Neale Hurston

I think sometimes when we talk about “passing” versus visibility we forget what that really means, what it is really about. We forget that it means a choice between being safe in the out there instead of being safe in the in here.

It’s a process of making a difficult choice for some of us. Which will destroy us sooner- the violence that others do to us or the violence we do to ourselves? How long do we defend ourselves from the violence that other people send us before we end up destroying who we are inside? Can we live in a world where we can be safe in our own heads without endangering ourselves from the violence of others?

A number of people have written about what it is to internalize oppression- ableism in particular. There’s one phrase I’ve seen that always strikes me- “outposts in our heads.” The place I remember coming across it was at Amanda Bagg’s blog, when it was used- along with the Sally Kempton quote- as the title of a post. Outposts in Our Heads was a big deal for me when I first read it back in 2008. It helped me form into language the things I was noticing about my own experiences, my own terrors, my own damages.

When we internalize the messages that tell us we are unreliable narrators of our own stories, that we are “bad” and “wrong” when we exist as ourselves, it creates violence inside of us. It’s not the physical kind of course- though sometimes people do hurt themselves as a result of this “inside” violence. But that makes it no less violence, no less an attack on our beings.

The more I reflect on my own behavior and the writings of others the more I feel as though a lot of our passing comes from this violence that has been pressed inside of us. Our passing is  an expression, in part, of the thousand little insidious things we were taught.  To remind ourselves that we are wrong, that we are “slow.” To remind ourselves that we don’t count as humans unless we take these “lessons” to heart.

With those lessons is one that gets pointed to as the “reason” for them, why it is so “needful” for us to find indistinguishable. Why the parent I will sit next to in a meeting next week will tell me that they just want their kid to have a shot at pretending to be normal. The outside world is violent towards us when we don’t accept these things, sometimes in more obvious ways.

I don’t think we have to go far to “prove” them their theory on how unsafe it is for us. Neli Latson‘s arrest- Young, black, and Autistic Neli- is proof in an of itself, however much it is also tangled up in racism. The bullying of kids who rock and flap are constantly held up against the bullying of queer youth by some parents, the violence that both populations face sometimes used to outline how bad it is not to pass. Sometimes I even hear the statistics about how 70% of women with developmental disabilities experience rape and that is used as an example of why we shouldn’t be obviously disabled. (Sometimes I even hear this from people who would fiercely remind you that how a person dresses or what they drink doesn’t make them responsible for the violence done to them.)

These things are brought out time and again, these dangers of the world. And too often- particularly when it is our families rather than disabled people ourselves- the solution offered is to teach us to pass. To not behave or exist as we are. To make eye contact and don’t flap or rock in public or don’t jump at loud sounds.

The solutions offered to individuals too often aren’t to make it so police know what to expect from Autistics (as well as unknowing the stereotypes of race), to end bullying through truly inclusive practice, to teach people not to rape and sexually assault people.

We are told that in order to save ourselves from the violence out there we must do everything we can to look normal out there.

And when we do look normal out there, they pretend that no violence is being done to us. Too often, they forget the violence that they did or dismissed to make us this way. Too often, they will always dismiss that it left us with violence in our heads.

As time goes on I try to unlearn the violence that was taught to me. I try to uproot the strongholds that tell me how wrong and bad it is of me, how selfish, to want to be okay with myself. This process isn’t helped by living in a society that reaffirms that all the bad things are because I’m wrong, I’m deviant, I’m disabled and I dare to try not to hide from it.

In June, I attended the Allied Media Conference as a Co-track Coordinator of the Disability Justice Track with A’ishah of ResistDance. Admittedly there were huge chunks of things that were issues in the physical world- for example, some people not getting what “scent free” meant, or staff members forgetting that sharpies can be toxic for some folk, or how incredibly echoy and not sensory friendly having closing ceremony in McGregor was. But the biggest thing for me had nothing to do with my external environment.

It had everything to do with my internal one. I was working so hard at uprooting the ableism inside of me, and yet while I was there surrounded by movers and shakers and hopeful justice makers I found more. I spent a couple of hours one afternoon sitting in a corner, crying and rocking and holding my arms tight. My outside was safe enough- someone even gave me a tissue as they passed. But on my insides the violence I had worked so hard to uproot from my mind was taking over.

I was alone and unworthy and bad girl. Of course you are having a hard time, I thought, you are wrong at the most basic level.  Remembered directives of Stop Crying and This is for Attention isn’t it? and You are selfish for wanting to be safe and everyone knows that retards can’t lead.

I eventually got settled enough to move, to look for my mum in the Healing Justice Practice Space. When I got there, though, it was obvious in ways I couldn’t know that there was a violence happening inside of me to some of the healers. I had some tea, and Mariposa had me do medicine on my self by way of chalking protection at my wrists. It is protection from the elements of the outside that give power to the violence inside, she told me.

And I did come back to me, to knowing that I am worthy and human and deserving of existance. To knowing where those thoughts were pressed into me from. To knowing that it is a violence taught to me.

I won’t discount that the violence outside of me is painful. I can’t pretend that I wasn’t devastated when the neighbor shot my cat Tribble knowing that he was in training to be my therapy cat. I will never deny that there’s still a spot on my back that when pressed makes me panic, to think that my mother’s second (ex)husband is going to put me in prone restraint again. But I think that the most devestating is the ways that violence is pressed inside of me.

I’m tired of doing violence to myself inside of me to avoid the violence that could happen outside of me. I’m tired of having no safe place inside of me because someone might believe that the demonstrations of my disabled person-ness gives them license to grant violence to the external face of me. I don’t think it’s right to give in to demands that I pretend that passing doesn’t hurt me.

This afternoon, I’ll go shopping. At checkout, while I’ll smile at the register and answer questions from the check out person, chances are I won’t make eye contact. Chances are I’ll startle when someone shouts or drops something. Chances are I’ll flap in line, wander in a way someone else’s parent would characterize as aimless and pathological, cover my face or eyes or ears when things are “too much,” flinch when someone touches me in passing unexpectedly. I’ll stare and not be able to process a shelf display or two, and forget how much I need to get some bottled water because it looks like there’s so much stuff in the cart already.

And I will  be safe.

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This Post was inspired in part by “Dear ‘Autism Parents’” by Julia Bascom, as well as other writings of her’s at Just Stimming. I highly recommend going over there and reading more of her stuff. I also want to direct people to the writings of Amanda Forest Vivian at A Deeper Country whose writings have been helping to “percolate” these thoughts all summer.

This has been reprinted at Shift Journal.