AASPIRE, the Healthcare Toolkit, and Why You Should Participate.

Hey everyone, I wanted to share about the AASPIRE Healthcare Tool Kit. This will be a pretty targeted post, but I think it’s pretty important.

AASPIRE is the Academic Autistic Spectrum Partnership In Research and Education, and they use Community Based Participatory Research (CBPR or PAR) to bring Autistics and academics together for research benefiting Autistic adults. This means that they believe that the Autistic Community needs to be equal partners to the research about them with the academics. Additionally they focus on quality of life issues for Autistic adults, and prioritize the concerns of the Autistic community in selecting what research to do and how to do it. Basically, they are working on a model that should be standard but sadly isn’t when it comes to research about us.

Over the past couple of years AASPIRE has been looking at healthcare access for Autistic adults. The first study that they did looked at our healthcare experiences, comparing and contrasting them to the results of not only non-disabled people but also allistics (non-autistics) with disabilities. As some of you might expect, the results were distressing- Autistics regularly have worse experiences and access to care, including preventative care, and more Emergency visits than the other populations surveyed.  Based on this information AASPIRE researchers publish a paper called “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership” in the Journal of General Internal Medicine. There was also a follow up with 30 Autistic adults for some more in depth questions about access to care, accommodations, and other details. They have a page on their site with more details about this and links to several formats of the above mentioned paper.

From there, AASPIRE started on developing a toolkit around healthcare for Autistic adults and our supporters to use. This study is currently still running in phase 3- more on that in a minute- but the goal is to develop a toolkit that will help us get better healthcare- have a better understanding of our own care, have more successful visits, and better access to care. Part of this involved generating a customized report that they or you could send to your General Practitioner/Primary Care Provider to help them understand what is needed to make sure you are getting the healthcare that all of us deserve. It ranges from access information to information on the sort of support you need to follow up on your aftercare.

As you might guess from my interest, I’ve participated in these studies. I love working with researchers who share my ideas about what research about us should look like, and quite frankly I believe that this particular line of research can help a lot of people. With the Healthcare Toolkit, though, it also provided me with a tool that may care team is actually using. When I gave copies of my report to my MH case manager (who used to be a supports coordinator in the ID/DD system I believe she said), she told me that she wished a lot of her clients had or had had things like it. I had her forward my report to all of my specialists which as I have plenty of health issues is a good number of doctors, some of whom I see a lot less often than others. So far, it’s gone ok.

I’d like to encourage people to participate- your feedback helps them figure out how tools like this could be better, and it provides you with a decent report about what sort of supports and accommodations you need to get the most out of your healthcare visits. Participating can have an impact on your healthcare visits depending on your doctors and who you send it to. It can also help the people who support you in your healthcare, if you need that sort of support, support you. I have my mother support me at a lot of the more complicated healthcare visits I have, and to my first time at a new doctor, so I think the fact that I need that kind of support on there (I think- I did it in late October) but that I am still capable of understanding my care helped. For example my case manager now asks if I need her to come with me any time she schedules an appointment for a new doctor. At my new PT’s they understood right away, either because of a copy of the report OR because of the information that my case manager conveyed from it.

If you are interested in participating, I encourage you to check out the information they have available. You can participate if you are either an Autistic Adult of some sort or if you are a major support person for an Autistic Adult. Make sure you fill out the survey after- you DON’T have to actually visit your doctor to take the survey afterwards. I thought so at first but I was informed by one of the lovely researchers that I didn’t need to have filled it out to take it. In return for your participating, you can get either a $30 Amazon gift card or check after you fill out the above mentioned survey.  I really appreciate that compensation even though I’m someone who participates in these things both because I believe in the goals of this particular research and because participating in research- be it for a scientific study or consumer ones- is a hobby of mine. I know others of you don’t share my hobbies, but between the compensation and the fact that you are getting a free tool to use about your healthcare is, I think, something that could appeal to people who don’t have the same hobbies.

I really believe in this project and I really want it to succeed, and the more people who participate the more significant the information that they get will be.

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Impact

[Content: mentions of murder, attempted murder, and ableism; internalized ableism; suicidal ideation]

This is a difficult post to write. It’s always difficult, of course, to touch on the subjects of murder and ableism, and on how they are excused. It’s more difficult to talk about the impacts in personal ways, ways that are your own lived responses and realities, rather than as abstracts. There’s a distance to the abstracts that keep you feeling safe, even though you know you aren’t. And this doesn’t even account for the risks that writing about those impacts can have on you personally. It is, plainly, all around difficult.

As a child and teen, I mainly just shrugged off these representations as I heard them. They may not have been as prevalent in the media I consumed, but they were, as they are today, “normal” things to hear. But just because something is de rigor doesn’t mean they are truly forgotten at all, even when they hold no special importance in the moment. Those words and memories are still in there, waiting for another train of thought to hook into them and pull them to the surface. It might be later that day or a decade away, but when you fish for something to carry you out of distress, sometimes you hook a poisonous fish instead.

A couple of months ago, I had a melt down that morphed quickly into a break down. I had spent the day cleaning and babysitting. I did have my mother around to help, which is why I was able to overcome my initiation problems, but this is still a major energy expenditure. By the time we got to the laundromat, my spoons were spent with several hours still left to go.  So when my niece put laundry in the wrong machine I snapped out “What are you doing” instead of a “That’s the wrong dryer honey.” She cried, and my mother responded with a “She’s still 4, you can’t expect her to know what to do.” And at that point the last spoons that I use to guard my thoughts was gone. I couldn’t stop crying, or saying horrible things about myself.

Instead of falling on the ground in a ball, as I sometimes do when I have a meltdown from spoon loss, I tried to latch on to something mentally to restrain myself from melting into a quivering mass on the floor in public. I needed to finish there instead of going home to melt in private, both because it’s less private there on cleaning days and because I didn’t have any more clean clothes. That was not a good situation, and pushed beyond the point that I could handle all I could reach were the “poisonous fish” in my attempts to keep afloat.

Aloud, I said things and used words about myself that I would never say in a normal state. I’ve reformatted my language so I don’t use the R-word, yet here I was calling myself one aloud in public. There was no filter left through which to moderate my speech, let alone my thoughts. As things escalated, the thoughts got worse even when the words got less specific. In that state, with nothing left to hold off the combination of anxiety and traumatic memory, my thoughts started regurgitating things I’ve heard in Tetris like reconfigurations.

Why didn’t they kill me when I was a kid and they could have some sympathy for it? Why would they keep such and expensive burden?  Why am I still alive?*

It’s a horrible set of thoughts to have. It isn’t about the sort of person my mother is- my mother is wonderful and doesn’t really understand how someone could intentionally kill their child with or without disabilities, and doesn’t even get why anyone was okay with the “I am Adam Lanza’s Mother” post. As much as much of my sense of worthlessness when I’m at a bad spot are an effect of the first two men she married, where my thoughts ended up going weren’t, as far as I can recall, a direct reference to my past.

It is, however, an internalization of the messages, responses, and dehumanization within our media. It’s every time a parent acts like having homicidal fantasies, masked in “mercy” language or not, about their disabled kid is “normal” or “natural,” every time telling them it isn’t is met with “you don’t know what it’s like.” It’s certain groups of people deciding it’s okay to lay blame at the hands of autistic adults for not giving up everything to put themselves between an autistic child and their would be/actual murderer- even when we’ve provided resources for those who are willing to listen. It’s every time the media calls reporting sympathy for the murder of the disabled making things “fair and balanced.”

These things are pervasive. And when something is culturally pervasive, it does become internalized. Even when you are someone that actively fights for cultural change, someone who can, if only in text, tell you exactly why and how oppressive structures damage people in our society. Even when you are someone who knows that the diversity of disability is evidence of humanity’s strength as a species.

If you think that these murders, or the way that our media talks about them, makes sense then I’m sorry- you are, as Beth said in her recent post, already at rock bottom. All I’m asking is that you don’t drag me and other people with disabilities down with you.

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* Please don’t worry. I have support networks in place, I’m not actually in danger of attempting anything. I shouldn’t have to say this, but trust me I have family that will help me if I actually am at the point of needing to decide if the hospital is the right choice. And no, right now it is not. Thank you. 

I started this back in September(the “A Couple of months ago” was initially “a couple of days ago”), but it took me until today to feel like I had finished it. Originally I was going to link to writings on how media portrayals of this type of violence impacts how other people treat us, but was unable to work through it. Feel free to share links on the subject below. 

Daylight (A Personal Note on Winter)

I am multiply disabled. I’m even disabled neurologically in more than one way. I am an Autistic with anxiety and depression, cataplexy (possibly narcolepsy going by family history), learning disabilities, and a tendency toward agoraphobic episodes. For some reason, those interact to my least benefit during the winter months.

First, I become anxious and distracted. My anxiety starts making acting on my knowledge instead of my anxiety difficult in November. I begin to worry about things that I am otherwise never in doubt of. I try to fight my anxiety, but this sometimes means I say or do things that make people feel blamed or sad. But I don’t have a strong enough filter at this point to turn it off.

By the end of December I’m depressed, isolated, and feeling as though I am not doing well at non-“work” related interactions. Sometimes circumstances make this more intense. I have family members who too often do things that will set off some of my trauma related issues, leading to ongoing tensions and misunderstandings.

I also come from a family with multiple faith traditions– most of my extended family are Christian, and some of a more conservative sort of Christianity that has essential conflicts with my beliefs. Accordingly, I have received gifts ranging from christian themed chocolate (which as much as I question why a devote christian would be cool with eating chocolate Jesus, I deal with because a) chocolate and b) They usually go to support their churches charitable works) to inspirational novels about a “lost” woman coming to christianity via a man– something that becomes a bit offensive when you realize that they all know I’m not remotely Christian and in fact follow Judaism. Additionally, that side of the family’s Family Dinners tend to be very pork centric, and I end up eating potatoes, rolls and sometimes salad if my mother made it.

I don’t really have access to my own faith community due to our location, which makes a lot of these little things less easy to put up with. It is indeed harder to deal with microaggressions when it’s difficult to find others. Indeed, the things that don’t bother my friends so much in areas with substantial Jewish communities are harder here where there isn’t a community to fall back on.

January, I reach the point where I feel incompetent. I don’t follow through with the things I need to do to maintain my personal relationships, interacting primarily in indirect ways, avoiding direct personal interaction. My interactions are instead primarily related to the efforts I maintain in advocacy or other work interactions. I feel apathetic about most personal things on an emotional level at this point- nothing seems particularly appealing to an extreme amount. I force myself to leave the house every few days, because otherwise I’ll need someone else’s physical presence to leave. It becomes an overwhelming thing to leave home, more so than any other episodes of agoraphobia I have throughout the year, easier to rationalize with the weather though it might be.

By February, without my consent, I find myself angry at myself. I know that these patterns are a function of my anxiety and depression meeting up with the decrease in available sunlight, but I still feel upset. Frustrated that this year I couldn’t prevent it. Especially as I begin to notice the way people are to it everything that has happened. I’ve lost friends from it in the past, had them assume that my going without directly personally interacting for a while was about me being upset with them. (This is according to what they’ve told me.) It’s more than my periods of not knowing when  to contact people or where I stand are. This is more.

I know this is hard. It is a hardness I both feel and hear from others. I know that I am not an easy friend. I know that this is a convergence of the least beneficial parts of me. But that they are parts of me, parts that at other times come together in other ways under different lights.

This is a personal note. A request to those who know me personally to grant me patience in the winter. To know it’s not about our relationships, but about my brain chemistry, unsure how to adapt quickly enough.

To have faith that the world will turn, the tilt shifting, and that spring- and daylight- will come again.

A Quick Note On: Disability vs Impairment

In the past couple of months, I’ve spent a lot of time reviewing curriculum and reading some research papers/essays that some people trying to be decent allies have done.  A lot of them do an okay job on some things, and a less great job on others. But the most common issue seems to be conflating “disability” and “impairment” in a way that reflects a relatively un-nuanced understanding of the larger disability rights movement.

The most basic definition of the Social Model is along the lines of a person is disabled not by their impairment, but by their environment. Sadly, many people fail to look at this and see more than “society alone is to blame for disability.” I see people who say that social model isn’t realistic, based on this misconception, for individuals with extensive support needs.

This fails to take into account the possible corollary that within an appropriate context, a person’s impairment would be irrelevant to their abilities. Here’s an illustration of that, and a very standard one:

Imagine a wheelchair user named Mary. Mary’s condition includes impairments in being able to support herself due to muscle weakness, so she needs to use a chair to get around. Mary goes into a general world, and there she finds that people who she shares interests with meet in a space that is up stairs without an elevator, and that the coffee shop that said it was accessible actually has a stoop too high to wheel over. But if Mary goes into Accessible Town, elevators are in the buildings and the buildings were built/modded in a way that doesn’t involve stoops, and where the halls and doors are wide enough for her electric chair.

Mary didn’t magically stop having her impairment. Instead, her environment no longer interfered with her ability to participate fully in the community of Accessible Town. Unfortunately, people look at the stories of hypothetical people like Mary and go on to claim that that is all well and good for people with physical impairments, but that those with intellectual, developmental, or psychological impairments. This is inaccurate.

Bob is non-speaking, and uses alternative communication. In general world, people become impatient or dismissive because they do not want to deal with alternative communication. (This is similar to someone who doesn’t speak the typical language in a country they are visiting, unfortunately.) Bob goes to Accessible Town to meet his friend Sue, who is Deaf. People wait for his responses, don’t try to speak for him without his permission, and ask for help understanding when they do not. Bob’s other impairments might preclude him being able to learn much of the sign language his friend Sue uses to communicate, but her interpreter is great at making sure both of them can understand each other, even though they are speaking different languages and styles.

Bob is still non-speaking and still has intellectual impairments. But he is able to not only be actively involved in this community, but to communicate and hopefully have a good time with people with different access needs entirely. In this particular context, his impairments are not disabling him from this sort of participation. He has the support, both technically and emotionally, to be a full participant.

Some people see this as just a fantasy. The standard that they hold up as “too disabled” shifts to higher and higher support needs each time we try to explain how that hypothetical person could be supported. At some point, it has become a game, which is why my examples of the hypothetical Accessible Town will end. The truth is that what access looks like will vary by person. It isn’t an easy thing at all, especially in our current world, to create environments or communities that balance people’s access needs. This seems especially true when the most needed aspect of that process is patience and trust.

Note, if you will, that a condition that may be referred to as a disability might have traits that are not impairments in and of themselves. While stimming can be a coping response to an impairment, perhaps with self regulation or sensory hyper awareness, it is not necessarily so. In some cases it is simply used as an expression of emotion- atypical, sure, but not an impairment. The only disabling factor when it comes to stimming, barring those which involve self harm, is that other people are jerks about it and project prejudices and bigotry about how people are supposed to look. Essentially, it is simply other people’s assumptions, not the behavior interacting with the environment, that creates barriers. Yet it is one of the traits by which Autistics are diagnosed.

The next thing is something that I don’t know how to introduce properly. I see a lot of people approach the idea of Neurodiversity as though it is some new big thing completely different from other disability things. The truth is that it simply is applying the larger disability rights movement to the experiences of people with certain impairments, often defined as Autistics.* It is not some great new thing that we came up with via spontaneous generation, without previous foundations. It was built on the work of many people who live with a wide range of disabilities.

When we talk about both needing disability supports and treating our impairments as differences, we are not being disingenuous. We are not “talking both ways.” And it is not about denying legitimate supports. It is an incredibly nuanced issue, but one that can be summed up in a phrase that isn’t terribly new or specific to Autistics, and is in fact used on materials put out by the Administration on Intellectual and Developmental Disabilities (AIDD):

“Disability is a natural part of the Human Experience.”

This is the core idea here. Disability is one of many natural variances in what the human experience is like. It is not inherently shameful,  “freakish,” or unnatural. It does not rob us of our humanity– that is instead done by the perceptions of people. It is part of the amazing and beautiful diversity of our amazing species, Homo sapiens sapiens. It is a part of who we are and how we are put together.

This diversity can be powerful whether you are a religious creationist (indeed, there are hymns about this), an Atheist who believes in an unmitigated evolution, or any combination thereof. On a personal level, I believe in theistic evolution, and the vast diversity which allows for the survival of the species is something amazing and beautiful and spiritual for me. But I believe that the fact that we are so amazingly diverse, that we live in such a diverse world and are such a diverse species, is something that can be beautiful and powerful regardless of your beliefs. (Reminder: this is not a post about evolution or religion. These are tangential issues.)

When we talk about Autism or any other condition as a difference, we are not inherently denying that people with those conditions face disability. We are talking about how our conditions, and the impairments that might come along with them**, are a natural difference in the species. That those differences, like any number of others, should not bar access, dignity, or respect. That our differences are not things that should be eliminated, but that we should work towards a society in which difference is not a bar to access, be that because of changing attitudes or changing our physical environments.

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Talking about these distinctions isn’t something new. Please consider checking out some of the links below in which a number of other writers have covered similar issues.

That Crazy Crippled Chick: A Musing on the Word “Disabled”
Radical Neurodivergence Speaking: In this place, in this activity, I am not disabled.
Yes, That Too: Ableism is to BlameA Social Construct
Autistic Hoya: Has an entire tag dedicated to this issue

Additionally, there’s a nice bullet-ed definition of the social model on the KASA website.

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* I personally consider Neurodiversity an issue that covers a wide range of individuals whose brains don’t exactly fit the “typical” brains or ways of working.
** Some people do not follow this, but they are a small subgroup who are often not aligned with the principles of the movement.

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.

Sorry, But I’m Delayed.

As some of you might know, I’m not only Autistic. I also have Fibromyalgia. Last night I was doing well, and I set my alarm for 10 am so that I could write the poetry post. It’s sitting in draft on my hard drive. But I have been in enough pain I was in bed 4 hours after waking before I could contact my mother and have her help me.  Even after drugging myself, I’ve been unable to do much except sit and stretch and nap exhaustedly, and still be in pain. I had a pretty hard time getting out of the bath this afternoon.

So in light of this I regretfully must delay the publication of the post on Poetry I scheduled today.

Instead, have a few links!

Disability Blog Carnival #79: Disability and Occupy
“People First – Create an Environment of Respect”

Sometimes it feels like Nice is a Dirty Word.

Being polite is this really tricky thing for me.

On one hand, I know that I struggle with being polite, even when I mean to be. There’s lots of little things that even after ages of studying, I miss. And those little things end up having big consequences as to how I’m taken. I miss a signal to stop, I’m “over bearing;” I miss that I’m supposed to say something/contribute, and I’m “Unfriendly.”

As a kid, I would try (when brave enough) to mimic the “playful” teasing I observed between my peers, and miss that it had slipped over that vague line of playful. I was shocked and hurt to hear my mother mention my on occasion “bullying” kids who were trying to be my friends. But the rest of the time, I was too “shy,” too “drawn into my own world.” It seemed as though there was no way to reach a happy medium in between, the one where other kids would presumably like me.

I’ve gotten, I think, a little closer to a manageable compromise. I’ve decided against listening constantly and desperately to the coaching and pleading, and generally try to be nice, opting to withdraw rather than risk it.

There are exceptions, of course. I tend to have a highly developed sense of right and wrong, and sometimes there’s just a little too much *wrong* in the world. Then I seem to slip up.

Let me give you an example. Recently, I was visiting my Aunt in NYC. She married a guy who has done pretty well in contracting, and so yes, there’s a good bit of a class difference. In any case, we were having  conversation with my sister and step aunt, nd she started going on and on about how great “The Secret” was. She was recommending it to my sister.  After a while, I couldn’t handle it any more.

I stated that actually, a lot of people who are facing various oppression (Like classism, racism, or ableism around Mental Health Issues) find the culture around subscribing to The Secret to be very hurtful. Too often, people whose issues face against more than the white middle class abled “mainstream” are said to have not worked hard enough at it for the “Laws of Attraction” to have worked. The Secret in too many circles is used to both deny privilege and to blame oppressed peoples for their continued struggles.

That’s not to say that there aren’t people for whom it works and is mega helpful. But to hear it go un-critiqued when recommended to my sister- who like me comes from a different economic class and who has her own disabilities- was not something I could handle. I Had to say something.

I later found out that she thought I hated her, in part from this and in part because of not interacting otherwise as she expected. Which isn’t true- I love my aunt very much, I just get frustrated by what I see as obvious class differences and how they effect how we see the world.

In any case, I end up feeling as though I’m too mean.

Online, it’s a little bit different. Somehow, I feel as though I’m a little too nice compared to some of my friends and fellow advocates. Maybe it’s who I spend time with. I often feel like there’s so much of my conditioning from childhood of trying to fit in, to dodge some of the less than wonderful experiences of “treatment” that makes me try to be nice all the time. To educate instead of protecting my boundaries.

Most of the people I know in Social Justice circles know that it’s not an oppressed person’s duty or reason for being to educate those who hold privilege over them. It isn’t, for example, an Autistic’s (or other person with disabilities’) job to live as a “self narrating zoo exhibit” as Jim Sinclair would say. It is the oppressor’s duty to get educated, not the oppressed’s to educate.

But I cannot bring myself to not educate. Trying to establish boundaries like some of my friends have is something that leaves me feeling torn.  And I know that it is okay for me to educate people, but sometimes I worry it makes me seem too *nice* when compared to some of my friends. And I don’t mean nice in a kind person way. I mean nice in a too compliant way.

Nice in a way that would make people I love and respect look down on me as feeding into my own oppression. Or, perhaps, in a way that belies how deeply ableism has infiltrated my thinking. There’s a lot of things I keep stumbling across when I go to examine my thoughts that remind me how much of life as someone who- in my case- is an Autistic and has MH issues ends up being about compliance in order to survive.

How much of my desire to be kind is based on my beliefs, and how much is based on the feelings that I need to be “nice” in order to be worthy of surviving, of getting the supports I need?

I’m not going to stop being kind, or educating people.  I will admit I can get s little sharp- for me- on my tumblr, but that’s tumblr and a lot of it is reblogging other, sharper people’s comments. But I’m not going to deny that drawing the line between being kind and being compliant is difficult.

But then again, undoing the things we have internalized is never easy.

_____

Sorry if this isn’t at my usual standards. I just needed, for myself, to write this.

This has been republished at Shift Journal.

Why I’m not Blue.

I see a lot of “light it up blue” stuff being posted around the net today. It makes me sad, really. See, The light it up blue campaign is a project of Autism Speaks. Their name is Ironic, considering they do not have any Autistics on their board, and one Autistic on ONE advisory committee.

I am an Autistic Adult. I have an Asperger’s Dx. But any time I say this, people say things like “Oh, but you can’t be, you talk!” or “But you have so much to say!” This is particularly a prevalent response online, where I do communicate better. I sometimes hear it from people whose only experience around me is hearing me give a talk, not cognizant that there’s a huge difference between public speaking and reciprocal communication.

If they stay around long enough, though, and they know what Autism actually *is,* they get it.

Thing is it’s pretty rare for people to actually get what it is. They are given imagery and little information. Puzzle pieces, Statistics, and fuzzy photos of kids looking anywhere but the camera. They are told that being Autistic is somehow worse than life threatening diseases- which, to be honest, is bad on multiple levels- I wonder what my one friend who is both Autistic and HIV+ thinks when the advertising compares one part of her life to another?

Recently I posted a video on tumblr that Rethinking Autism did called “Autism Support Group.” It had all the usual things we hear said about us- How it seems like we aren’t there, that we don’t display affection in typical ways, That we just “don’t get” school. Throughout, an Autistic adult responds to these comments, only to be ignored and unheard by parents. Thing is, these are comments we hear about ourselves, and about children who were like we were as kids, all the time. The comments could have been lifted from so many parent support groups around the nation- possibly around the world.

Another thing is that it’s always children that are mentioned. The majority of the leaflets and flyers that do feature Autistics (or models) instead of a puzzle piece feature children. “These children,” “Help a child,” or “1 in 100 children” is mentioned. Thing is, it’s NOT just children. There’s no follow through on the notation that Autism is a life-long thing, just a margin in the notes.

The exception is the speculation. “She will never get married and have kids.” “He will never hold a steady job.” “My kid will never go to college.” While these things might be true for some Autistics, saying it’s true of all of us- or rather, all the 1 in 100 or 110 or 160, whatever number you recognize- is just an outright lie and speculation. The same speculation that had my IEP team pressure my mom, saying “She’ll never go to college. She’ll probably never graduate high school. Stop filling her head with the idea that she should pursue advanced classes.” My mom pulled me out to put me in first cyber school then Christian school, and never bought into what they told her about me.

I eventually went back to public school, and I graduated high school in 2006. In 11th and 12th grades, I even took Advanced Placement English classes, and got a perfect score on the AP English exam. (They thankfully didn’t have a spelling section.) In fact, had I not had a nervous break down- inconveniently after the school had pulled my support services- my senior year, I would have been ranked and recognized as such at graduation.

This didn’t come to pass because of an obsession with curing me. It happened because my mother supported me unconditionally. (Her second and now ex husband is a different story for another time.) She knew I was anxious and distracted in school, and that they refused to let me pursue my potential. So she arranged it that I could, and in an environment that suited my changing needs. She encouraged me to get up in front of people and start advocating. She didn’t ever show me doubts about my being able to accomplish things.

A year or two ago, my mother was approached by a parent. The parent was talking about how “of course, you know, you grieve your kid when you find out they have special needs.” This made my mother angry. She responded that no, actually, she didn’t grieve me. I was right there. The extra work was stressful, that is undeniable, but she never lost me so there’s nothing to grieve. She has me, just the way I am- Autistic, Queer, and living with Chronic Pain.

My mother was there when I would melt down and flail wildly- sometimes so much so that she was worried at times about her own safety. She had to deal with people telling her that maybe she should put me in residential placement. She experienced the fear when as a small child I would wander off, one notable time in the Metropolitan Museum of Art in NYC. She heard the comments of “Why isn’t your daughter smiling?,” the “cheer up honey, it isn’t all that bad” and my response of “I’m happy, I don’t need to cheer up.”

Maybe she didn’t see what her second husband put me through, or notice the extra time I took in the bathroom, practicing facial expressions in the mirror so that the cheer ups would just stop. But she never stopped believing in me.

So, you know that Autism exists- but do you know what it means to be autistic?

Healing Doesn’t Look Pretty

Trigger warning: discussion of trauma, both sudden and violent and prolonged and subtle.  Also for Racism and Ableism.

This is a picture of me, Savannah Logsdon-Breakstone, having a raw, terrifying healing moment. My hair is back, greasy, and a mess. My brow is wrinkled, my nose is red and so are my eyelids, even through my glasses which are perched slightly down and askew from proper.. The reason they are red is there too- there is snot dripping from my nose, and there are tears on my round cheeks and slicking my eyelashes together. Though it is a still, the chapped lip trembling is also visible. This is a close up, so aonly the neckline of a beige crochet sleeveless top and bare shoulder can be seen, with a messy corner shelf in the background and a pale greenish wall.

This is what healing looks like. It doesn’t look like sitting under a tree on a clear day, or walking with your homogeneous looking family. It isn’t playing frisbee with grandkids and their dogs, and it isn’t lifting your hands in victory after climbing a mountain.

Healing isn’t pretty. It hurts sometimes. You have to dig around and realize exactly what has happened to you, what attitudes and perspectives you’ve been taught to frame your world in. It isn’t something that happens all at once, or in a short time.

I was sobbing because I was healing. I was realizing just how much my world and what I engage with was based on the abuse I faced and the things my abuser said. So I took a picture, a reminder that this feeling and this confrontation is a part of healing. Of undoing the damage that was done on me, that was continued through me.

I was watching the “Pretty Girl Rock” video. And it came to the part where the style of TLC was depicted. I remembered the day I heard Left Eye had died. I was sitting in a hotel room at a CASSP conference in PA. The world had gotten overwhelming, so I had retreated to the room to watch MTV. I cried as the alert scrolled across the bottom.

But when we got home, and I mentioned it to my abuser he scoffed. He said that she was crazy, that she was a druggy, that she was “bad” and that her death was due. He equated her race, too, to her inadequacies. I went to my room, and I played TLC’s Fanmail on repeat.

But from that time after, I didn’t listen to rap, hip hop, or R&B. There was something lost to me after that. A desperation to stop being “other” in order to avoid the abuse I faced, to stop being “crazy”, stop being a “Social Retard.” I told myself that it was because of the way that things have changed, because of misogyny, because of glorification of “Ghetto” culture in the main stream music.

But the reality is that I had turned those things that were said to me, that destroyed my faith in the world inwards. They were all connected, all tied to those things that were labeled undesirable to my abuser. That avoiding them somehow would make me safe.

Looking back, I can see how these things played into his racism, his ableism, his xenophobia. That they fit his words on people with mental health disabilities, how we aren’t fit or competent and how those of us with developmental issues would “never grow up.”  How his deriding of non-white people, his saying that black people were sub species, interplayed with his ableism and his sexism.

“Lazy Nigger Bitch” he called me one day when I couldn’t get my brain to move fast enough, to disengage with what I was doing. This might have been the same day he threw my typewriter on the floor, shattering it, for the same reasons. In any case, he combined all the things he saw as “bad” into insults, into things that I would hope to avoid in order to make myself safe. That by avoiding association with certain “elements” I could somehow make myself safe.

That particular incident was 10+ years ago, but now I’m just starting to see how much it twisted me, and made me a victim of fear. How much it made me enable systems of power that would continue to oppress both my friends and myself. To realize how much these systems of oppression were twisted against me, and against those I love- and those I’ve never even met.

This, this disassembling of the systems he re-inforced in my brain? This, this determination to fight the injustices he made me think were universal and unchangeable?

This is healing.

(Post started in Dec 2010, finished march of 2011)

Transgression and Inclusion

I was just at NYLN‘s Reap What You Sow Institute last weekend. It was amazing- I’d like to talk about that more at some other point. What I’d like to bring up instead is the Sins Invalid performance.

Sins Invalid is a performance group focusing on disability and sexuality, with a centering on People of color and queer artists. We had Leroy, Maria, and Antoine live- One of Antoine’s performances is available on Youtube, if you care to watch.  As for samples of Maria and Leroy’s works, Maria’s My Vagina Manifesto and Leroy’s Man to Man Talk.

The performance last saturday was amazing. But more than that, it was thought provoking- in a way transgressive as much effective art is. I was very moved, and did end up typing something up (couldn’t express and speak at the same time) and showing Maria and Leroy at different points later in the evening. It was in essence this:

Society does not make a space to see us, and no one has told us to make a parting in that fabric to emerge alive and proud in our community. I am made sad by the thought- the thought that so much beauty is denied because there has been no one to say “Come Come come forward and up. We are all community.” That inclusion and acceptance is so *transgressive*.

I think that to think- really think- about this is something challenging, but also transformative. Then, I think that that is kinda the point of transgressive art- to provoke a transformation of thought that might nto otherwise happen, or at least won’t happen so soon.

So think: What is it that makes inclusion and acceptance so transgressive? What is it that offends so much that we are made invisible, unseen in our local communities? Why?

And How can we make a transformation in our world- to create an artistic venture, if you will- that takes us from a transgression to fact?