Quickly, Now, Present.

Yesterday, Linda Holmes wrote a review of Allie Brosh’s book (which you should all read– if you haven’t read her blog, she’s a painfully real yet comedic story teller, and if you have there’s some new pieces in it.) for NPR. Except it didn’t look like a lot of book reviews, it wasn’t static- it was more about what it means for Brosh (and others like Donald Glover) to write about their struggles not from the perspective of having overcome them or left them in the past, but of having them in the present. I feel like the following gets to the core of the essay:

But there’s something to be said for the currency of Brosh’s vivid, sometimes nervous-making chronicles, or of Glover’s scribbled notes. It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories. It presents a false sense of how hard those battles are. It understates the perilous sense of being in the middle of them. It understates how scary they are.  -Linda Holmes, Present Tense: Allie Brosh, Donald Glover, And Hurting Right Now, NPR

Holmes was talking about this in the form of writing- be it a book, a blog, or pictures of what you’ve scribbled out in a hotel room.  I do try to engage in this sort of writing myself, but so much of what has driven things has been the past. And I’ve told about my past so often, some of it has lost the painful desperation. Other things haven’t, and I try to limit my posts here on this blog to events that even when they are from the past are connected, somehow, with what things are right now. Current events, new perspectives, placing them within a larger context than “I.”

It’s difficult, but not as difficult as opening up about what is emotionally current in my life, In September, I started a post. I hope to get it out soon, but I’ve been saying that since the day I opened the tab to start writing it. It’s been difficult, even though the most intimate parts are there in the draft folder already, waiting for those finishing touches and paragraphs of framing research to connect it to the larger contexts. But it’s waiting, and going into the file means sitting there, paralyzed as to what words could possibly come next. And with that is a circling terror- is it safe to say this “aloud?” 

Writing about our current emotional statuses is hard. Allie Brosh has written a little bit about it, if I recall, though within the larger context of her depression. I know that when I keep trying to go back to any of the posts in my draft folder, terror comes out. It’s not just confronting the now, getting it out into words, though that too is difficult. Part of the terror is that every word I write brings me closer to sending it out into the world. And that can, indeed, put my freedom and peace of mind at risk, not because of a lack of privacy or anything like that, but because being as open and raw and now as that invites the care mongers to flood in. I fear greatly that people will react as though I don’t have steps in place, as though I’m not surviving through this, that I need rescued. That if maybe I was forced to the “right” doctors I wouldn’t have this now. (Hint: as someone who has had various points of this now for most of my life and have been in treatments for the majority of that time, you forcing me or having someone else force me into another hospital or care setting isn’t the “right” approach.) And by making it go out into the world, I’m putting myself at risk for your loving emotional violence.

I do write anyways. Not always here, but somewhere. I write poetry; I use tumblr. And part of that isn’t just because of writing, but because of the impact that writing can have. I know that writing can change a person’s mind or life— I’ve both been changed and have heard from people whose minds/lives I’ve helped change. But that action goes beyond writing, beyond casting into the void for another void-dweller to pick up and carry next to their heart.

Because that power goes beyond it. I’ve been involved with advocacy for many years now, since I was a child. Large chunks of that has been in mental health advocacy. And when the topic of ferreting out some more, new advocates comes up, the family members present and the service system people present always tag on something I find both counter productive and slightly obscene: “… who are stable/well/successfully managing their Mental Issues now.”

Don’t get me wrong- it’s important to take care of one’s self and to take time for yourself in this work.  Immeasurably so. But that is something different entirely from what those words say. They say that the people who frame themselves as our allies don’t see us as worth working with. That our insights must necessarily be wrong, or useless, or both. It says that they care more about our pasts than our present, let alone our futures.

I hear these words from people who are supposed to be working on changing or reforming the system as it stands right now, and it’s clear they don’t actually want the words and experiences and, yes, wisdom of the people who are in it right now. These people seem, from here, to want to insulate themselves from the difficulties and fear that they would be confronted with in working with someone who they know is “still in it.” They can’t wrap their heads around following through with the needed support to actually work with “those” people— consciously or not, they cling to the idea of supporting a person with Serious Mental Illness (a technical classification) being both a burden and necessarily paternalistic in nature. I do hope that for most of the people I work with it isn’t a conscious thought, but it comes out here and there, and not just on this issue.

It’s a deeply misleading flaw, as much as relying on written narratives which makes those struggles into a past. Then we sit and wonder what went wrong in our efforts, even though the very reasons we bring to people to justify advisories like ours tell us why. We go to offices and we say, “Self advocate advisories are needed because you can’t see what the flaws are if you aren’t on the end that will experience them. You can’t watch flaws in a plan that about a life outside of your experience.”

There are other things wrong with the “but are well now” direction. It dis-empowers people further who are already dis-empowered on both societal and systemic levels. It enforces a framework that leaves those with disabilities that are life long, including those with DDs, being seen as less “valid” observers and contributors. It further continues the stigma about being actively mentally ill, even within circles that claim to push for de-stigmatization. It reinforces the messages that we’ve internalized telling us our voices are worthless. But as far as a fatal functional flaw? I believe that Holmes’s comments on writing are the crux of it.

 It’s very sterile and very misleading to hear about battles only from people who either have already won or at least have already experienced the stability of intermediate victories.

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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.

I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.

Shreds

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.

A reminder from the fog

I have things I want to do, want to write about. I wanted to write about disability voting for Persephone Magazine (I contribute occasionally, though lately it’s mainly been food posts). I’ve had a number of things I intended to write about for here. But every time I’ve tried to sit down to write something prompted by myself, I’ve ended up staring at the writing field blankly.

I’m frustrated with myself. A part of me spends time berating myself, reminding me that I can and do write fairly well some times so I ought to be able to churn something serviceable out when I want or need to. It’s more than writer’s block- I get that too sometimes. I have all the ideas there, but the brain fog has been interfering with my ability to put them into the text box coherently.

I know where the fog comes from- it’s my fibro and arthritis pain mixing with my neurology. But I also know where the frustration and the self doubt comes from too. I’m not the only one struggling with that one.

I’ve had friends who have told me things about their struggling. Some do have brain fog, but a number of them don’t. Some have had disabilities their whole lives, some have had them without words for them, and some who gained disabilities later on and their lives. Many have very different tasks that they struggle with. Some  of them struggle more with tasks I also struggle with. A number of them struggle mainly because the things they need to succeed aren’t met or are met hostilely.

See, it’s the hostility that makes a lot of it all worse. A hostility to the idea of alternative needs in order to accomplish things. Hostility to the idea that one experience of a situation is not going to be the same for each person. And this hostility breeds some dangerous, some might say poisonous, memes in our culture.

I think I’ve talked about memes before, not in the internet sense but in the anthropological and sociological sense. They are basically a unit of culture. An idea, an image, archetypes- these are memes, elements that make up culture and society. We live in one which perpetuates hostility towards people with disabilities. And a lot of the memes that make up that hostility are ones that we find ourselves repeating when we are frustrated.

That our needs aren’t real. That we are actually just not trying hard enough. That we are actually just bad people, or lazy people, or selfish people. None of these are true, but they are memes in our society that we have for people.

There’s lots of things that perpetuate it. Some of it is direct- people actually saying these things. Some of it is a consequence- someone using these views to “legitimize” denial of access. And some of it is subtle- like inspiration porn. A lot of people have talked about that last one in recent months. But all of it is a part of our society and culture. Not a good part, but still a part.

And we are all taught culture through these memes. It’s not an avoidable thing. True, some people don’t get the direct impact of it from the subtle parts alone. But they get it indirectly, from the messages that the people around them absorb and then act upon.

It is impactful, the expression of these memes. Someone with attention issues might need to doodle to keep their mind on a speaker, but get called unprofessional for doing so even though they need it to process what they are hearing. Another person might suffer from chronic migraines when around certain stimuli (like florescent lights), but have their need to have alternative lighting treated as being finicky or annoying. Someone who might need things in simpler language might get left out of choices about their lives, or are told that their goals aren’t reasonable without explanation. A child who uses an AAC device might find themselves or their parents pressured into a segregated classroom.

Years of this cultural environment takes their toll. When a person subject to it, to the “pointy end” of it, becomes frustrated about something, it turns inward. The fact that they’ve worked themselves to exhaustion, or have agitated a difficult part of their health by going beyond where their limits are, doesn’t prevent them from calling themselves lazy. After all, other people have said it about similar efforts by other people. The same with worries about being called “selfish” keeping people from asking for accommodation,  or “drama seeking” when you report discrimination. None of these are legitimate statements, but they are all things that society’s attitudes attempt to legitimize through cultural means.

We feel these things as consequence. We feel that maybe we are lazy, maybe we are just bad people, selfish people. It is a difficult thing to stop thinking when things go bad. It’s hard to unhook those representations we see, the ones that tell us that failure is just because we didn’t do x enough. That we aren’t y enough for our struggle to be real, that we must be some sort of bum, drama queen, or whiner.

But it’s not true. We’ve lived, survived, a hostile world that would rather believe those things- that people like us must just be lazy fakes, that we are just bitchy people, that none of our reality is true. We’ve been raised in a culture that believes those things, we’ve had it ground into our minds.

Just because we resist doesn’t mean we don’t stilll have that thought in there. It’s been ground into us. Even those who come to life as a PwD later on, as it’s a societal thing, not an individualized thing. It’s a horrible thing, a painful thing, a thing that challenges us and makes us want to destroy parts of ourselves at some points of our lives.

We are real. And we don’t need to destroy ourselves. We don’t.

The medication I took earlier in an attempt to dismiss the brain fog is wearing down a little, as it doesn’t last too long, and soon I’ll be back in a place where the ideas are there where the words are not. I’ll read things and have feelings, but barely be able to come up with a way to say that I have them, let alone make a meaningful or thoughtful response. I’ll be able to put together other people’s points into meaningful words, but be unable to order my own points. And I will be frustrated at some point.

And I will survive it. Maybe I’ll come back to this, or you will, to remind myself, ourselves, what the self-doubts and self-flagellations really are- internalizations.

BADD: Something

I didn’t think I’d have something to say today. I haven’t been able to organize my thoughts in the way I need to to write here, and I have a list of things I need to get done that. . . well, it just hasn’t thus far. I thought that I wouldn’t have something to say for Blogging Against Disableism Day, or at least not something that was worth posting here.

I was wrong.

Blogging Against Disablism Day, May 1st 2012 banner in black and white with a diverse set of stick figures, including one who is a wheelchair user.

I just finished reading Amanda B’s first post for this year’s BADD (she wrote two) and . . . Well, I found myself upset. And not just because her posts are on distressing issues around abuse by caregivers, but because I had just recently been trying to articulate some of the things she wrote about being conditioned to believe our support needs are unreasonable. Amanda was talking specifically about issues with staff and care givers being abusive, and about the cultures that support that within provider systems. But the conditioning is something I’ve been working on fighting out of my own head, and I’m someone who isn’t getting adequate supports or services. (I have less extensive support needs staff care wise and equipment wise as my health and skills  are very different from Amanda’s, but that doesn’t mean I don’t need supports.)

I’ve been depressed lately because of how long it has been taking for me to get housing, and because the type of support that I need to navigate that type of system it is more complicated. As a result, my family has been truly over taxed in trying to make sure I’m not living under a bridge or someplace where predatory individuals would have access to me. My family members have disabilities of their own to provide self care for, as well as not really having the financial resources to support me in a way that respects their own needs. It’s not that I have super intensive care needs in general- once I have a place and can set up my charts and other adaptive methods, I might need a couple hours a week to help coordinate bills, cleaning schedules, and transportation. But they are still needs that are amplified by not having a permanent home that I can set up as an environment that is suited to developing or maintaining my Daily Living Skills.

However, I also know that I cannot cope at all when I don’t have some obligations or responsibilities to meet. Accessible, meaningful involvement. Unfortunately, none of the things that are immediate to my situation are things I have the skills to navigate. Instead, online things and meetings and disability justice work are the things that allow me to cope, to endure not knowing for sure where I’m going to be sleeping next week.

But my needs for this sort of meaningful activity, and the relatively easier and less expensive to provide supports I need to do them, are characterized over and over as unreasonable. Unreasonable in light of  how I haven’t been able to get housing. Unreasonable in light of needing someone to work one-on-one uestion by question with me to fill out assistance forms, or even in writing an advanced directive when I know basically what I want.* Unreasonable because I need some help in managing my money, because when I try I end up just not buying the things that I need and doing without until it hits crisis even when there’s money for something.

*That set of needs in and of itself is called unreasonable in light of how “smart” I am, how I can be involved in national level policy review, how I scored so high at English in high school. That I can write and review policy somehow means I must be able to apply each step to my own life accurately, without assistance. That there’s a different set of neurological skills between writing big things or reviewing big things and applying those to a very specific case in a way that uses standards measured from the outside is not fathomable.

This past weekend, it didn’t work out that I could go to a family member’s. So I went to the cheapest hotel in my county with wifi, and checked in. (I even agreed to watch my niece on Friday night, as she and I get on well and my sister  needed the support that having someone else handling her  would accomplish. The sort of support that if the dad had been willing to provide when it is needed two nights or so a week, wouldn’t be a problem.) But when the hotel’s internet was not operating appropriately, all the things that I’ve been told- the things I’ve listed in a heavily limited way above- came into my head.

That daring to have obligations to fufill was an unreasonable thing for me to have done, even though they are obligations that aren’t terribly extensive. That needing reliable internet access because I had been asked to complete one thing was something that somehow made me an extra burden above and beyond. That contributing at all can’t happen somehow when you can’t hold a job that supports yourself.  That while my disabilities do not make me something aweful, that my daring to participate in the ways that are accessible to me somehow does.

I know that it is all programming, that it is the sort of behavioral training in action that Amanda is talking about when she says that you don’t need locks or restraints to practice seclusion and restraint on someone. I am someone who has picked apart the details of how society trains us into compliance for the ease of others. How being a part of a marginalized group means that we have epic fights against the things inside our heads in order to survive. I’m someone who films myself daring to reject indistinguishability, who knows that we make tiny revolutions by demanding that our determinations of what we need are listened to.  Someone who lives and metaphorically breathes disability rights.

And I’m still digging out the conditioning in my own brain that reduces me to a something, to a burden and an unreasonable. My mother is still unraveling the complexity of what access is vs “enabling” (which is a complex mess to dig around in itself). My sister is still without her GED because when she has to directly interact with her acquired learning disabilities, the things she’s internalized over the years both when she was a norm with a disabled sister and after she acquired disabilities collapse her incredible demonstrations of self confidence.

When we talk about the impact of disableism, we are talking about trauma, a trauma that can be obvious enough to shriek or subtle enough to make being explicitly told that others will help us access our world a shock, a pleasant surprise. We are talking about outposts in our heads, and the outposts in other people’s heads.

We are talking about how some  nights I lay awake worried about the day when my niece no longer thinks I’m awesome, no longer misses her buddy Skylar, no longer meets a family friend’s kid at his level of interaction because it seems horribly inevitable that she’ll learn the memes of disableism in our culture. Because even with some of the amazing bits of joy and hope that people share- Dave talking about Ruby’s dance class, Brenda talking about her love for her son as a whole person- it’s hard to believe that the hope that it gives will turn out.

It is so hard to believe something that amazing can last when you live in a world where it’s socially acceptable to exercise disableism, to raise children with disabilities around language about brokenness and tragedy into adults whose hearts break daily because it’s hard to unlearn that stuff.

But somehow, it is still something worth writing, and fighting, for.

___________________

(A different, positive, musical Something to play you out.)

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.

_________

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.