Changing Normal

I’m having a really hard time and for once, it’s not really about my brain. Or it is, but not in the usual way.

This past spring, I was travelling a lot for my state level work. My state capitol is about 5 hours drive at the rate at which I normally travel. (For those that don’t know, Pennsylvania is a huge state.) For a large chunk of the Spring I was going down every week, and when I wasn’t it was every other week. By the time June hit, I started having some really strange symptoms. I was having random fatigue, cognitive fuzzy episodes that weren’t affiliated with fibro flares, and confusion. At first I thought that maybe I was having seizures, but it wasn’t QUITE matching up with seizures and I’d had an EEG in the past year or so.

And then the symptoms got worse. I was falling asleep at random times. The episodes I had been worried about were escalating. I had never been able t o just “go to sleep” at night, but now it felt like I had no control over when I was awake or asleep, and sometimes I felt like I was asleep while awake.  This was something I recognized. My mother has them if she isn’t obscenely strict about her diet and exercise.

I don’t know for sure that I have the same thing she does. But I do know that the drug that treats it almost completely is something that my MCO covers, I have a family history, and it fits. We’ve started the process. I’ve had the first sleep study and have a heart monitor test being scheduled. Unfortunately it is a long diagnostic process with a lot of things to rule out. And that’s the problem.

The symptoms have eaten into my quality of life, and knowing that something could help but that I’m looking at 6 months to a year of tests is making me miserable. And really, there’s nothing that I can do to change it. I just need to hang on and pray that it doesn’t tank the opportunities I have right now.

There’s a concept in the disability community called “new normal.” It basically means that, if you acquire a disability, you are going to have a new baseline in life. Human beings are amazingly adaptable creatures. It’s one of several advantages of our species. Once given a chance to adjust, we live. Eventually it’s more  than survival, it becomes life. Morning cup of coffee normal. Taking the dog out to pee normal. Eventually, rolling in a chair becomes normal. Using a cane becomes normal. Taking medication every day becomes normal. You learn new ways of doing things. You adapt. It can take a while, but eventually, it becomes normal.

It’s really hard when you’ve adjusted to your own normal, and then you get another new one. And this one is harder than when the fibro and the joint damage from the hypermobility hit. I really missed dancing and I missed that I used to be able to push myself without hyper extending and hurting myself. I missed that at one point in time I could walk from Foggy Bottom station to the Capitol via the reflecting pool when visiting DC, but now I can’t walk around my small town for an hour without injuring myself enough to be out of commission for the next couple of days.

But adjusting to not being able to have confidence in my schedule is a lot worse.  I slept from 5am until 9:30pm yesterday, and was still in a fog. I’m frequently sleeping between 12 and 18 hours a day, but not always. Some days I can’t get my self to sleep all the way, just to that stage between being awake and actually sleeping. And then some days I end up with a normal sleep schedule. Some days I’m on the ball, and there’s no real fog beyond the fibro fog that I’ve gotten used to. It’s the uncertainty that is making me feel defeated, more than I ever felt with my other acquired impairments.

It’s hard to change and to adapt when  you have no clue, and when the things that let you still engage with life won’t cut it. When I’ve been having fibro episodes or GI episodes, I could always participate in the world online. It’s one of the advantages of some of the work that I do- being a social media specialist means I can work from bed if I need to. I can even work from a bathtub filled with epsom salts if it’s bad. But that doesn’t work here.

Thankfully I’m a workaholic and catch up easily, but that doesn’t help the missed phone meetings, and it doesn’t help if I fall asleep in a meeting when I travel. Thankfully I know enough ahead of time to get out of dangerous situations- it’s not at all like the movies thank goodness. I usually have a half hour warning when I start to feel an episode coming on, I’m not going to leave the oven on or drive off the road or anything like that. Additionally, my service dog knows enough to warn me if I’m not in a safe position well before I even know. And the times where I’ve fallen asleep in public- for example, I missed the chronic pain session at SDS because I couldn’t wake up from my “quick nap” after lunch on the couch in the vendor area, which I attributed at the time to chronic pain- she’s stayed right by my side to keep me safe.

But I can’t always count on people understanding that this is out of my control until we finish the diagnostic process. Even people who are 100% understanding about my trauma stuff, or my pain stuff, or even my being autistic stuff won’t necessarily get these particular symptoms. It’s difficult to look professional and engaged when you have no control over if you are alert or not. It’s difficult for people to get that I can be passionate about things and still end up sleeping and drooling (and not wiping it up before people can notice like I normally do) on the power point print out. Usually I can get around that in the moment- I’ve done it, pushing an episode off an hour or two- but it has consequences that aren’t ones I can do  full time.

Thankfully my travel schedule is less hectic right now. Thankfully I’m IN the diagnostic process. Thankfully we have some idea (thanks family history!) of what it is. Just… pray with me, if you do that sort of thing, or send out good energy/thoughts, that it is indeed narcolepsy and not something less manageable under modern medicine. Because otherwise the adaptation might mean changes that I won’t be able to be supported through, and that could derail this already adapted course I’m on.

Advertisements

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.

Payment

[Content: Abuse, ableism]

I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.

Let me explain- it’s not that I’m against someone deciding to learn a new skill that they want or need to learn to achieve things that they want. I’m not against teaching a kid of any neurology new things as they explore their world. But there are some things that aren’t worth the trauma- the long term emotional damage- of how they are taught. Or, at least, of how they are taught to Autistics.

Recently, I was teaching a friend how to do dishes. Step by step, gently, with examples and tips. Feel as you wash- if you feel any grease or food bits, it’s not clean yet and you need to keep scrubbing. Later, I paused in the middle of pouring myself some water. You know, that’s not how I learned to do dishes. I learned it traumatically.

My mother was working when we first had “big” solo chores. We rotated chores between all three siblings. My mother’s second husband, whose death I talked about in my last post, was the adult on hand for chores. He herded me into the kitchen, and told me to do the dishes.

It wasn’t “casual” ableism that he used then. It was fierce and directed. He loomed over me when I said I didn’t know how, and used it as “proof” that I wasn’t really smart- the only alternative had to be that I was lazy. So I tried doing the dishes while he went off to do his thing. I pondered on the fact that there’s cross cultural archetypes of Cinderella while I tried. When I finished, I would declare it with relief.

He would loom again, and wave the dishes in my face. He would tell me I was obviously trying to get out of doing my fair share, because they weren’t done right. And so I did them again, over and over. I think I threw up a couple of times at first- I hate the oily texture at the bottom of the sink when people fail to scrape their plates, and the smell of used dish water. Letting the water run was not allowed if Rick was watching, so the smell and oilyness of the first rinse was there, while the soap bubbles waited in the second sink for a rinse. Not even gloves were an option- instead, I was to learn to deal with the sensory assault that was my “fair share” of keeping the household.

I believe he enjoyed his use of humiliation. His combination of verbal and physical intimidation was effective in eventually teaching me basic skills like this, the very technical skills that are the building blocks of independent living skills. The process was repeated with a lot of skills and “skills”. Vaccuming and laundry went hand in hand with passing, with not looking “crazy” and not echoing “nonsense”.

The Wise man doesn’t speak what he knows. And I wanted to be wise, because according to Rick, no one would believe I was competent.

It was better when my mother was home, but there would be little reminders that would just seem stern without the context that happened when she was at work. But the repetitive enforcement of my lack of skills, of how bad I was at covering, at passing, was just as destructive if not more than the times he loomed over me. The same things I observe being used to teach kids with similar behaviors today were the hardest part.

When the inevitable meltdown happened, it seemed, from the notes she took, unprompted or triggered by things that were relatively innocuous. That’s not to say I wasn’t easily triggered before, but they were always specific things, things she could figure out.

Rick had been gone for more than 5 years before I could articulate half of what happened to me. It was two more before I could do it well enough to get it across to my mother how much she had missed.

The damage done in the name of teaching me skills isn’t worth the skills. It isn’t worth the years of self hate, the years of denying myself the services and supports I needed in order to prove his tirades wrong. It isn’t worth the nightmares I still have of his eyes when enduring forced eye contact.

Look me in the eyes. If I let you grab my chin and point it somewhere- especially at a face- you know I trust you.

You want to talk about how hard it will be for your son? How you just want your daughter to get married some day? Stop. Stop thinking about your own wishes, your own images of how your kid’s life will go. Look at the skills they show interest in. Find what they are personally ready for, instead of what some book says is “developmentally appropriate.” Let them build their own image of what success is.

Because the trauma of forcing someone into a schedule they aren’t ready for? Of forcing unneeded skills? Of removing non-harmful but socially difficult coping skills? Of holding up your own wishes and ideals as the goal?

Isn’t worth the trauma.

Finding a Positive Experience- or, New Psychiatrist

[Content: summary of improper/abusive medication practices on a minor, detailed descriptions of a Psychiatrist appointment.]

I had my first truly positive experience with a psychiatrist. I don’t know for sure that it’s him, the facility he works out of, or just that my needs and his techniques lined up. But I do know that I wanted to share what happened, especially in light of the number of horrible or even traumatic experiences I’ve had with others in the past.

When I was a kid, I was medicated and medicated badly. It seems like every med that came out, I got tried on, in a wide range of uses. Indeed, some of the things I was medicated for was caused by other medications. very rarely was my body allowed to detox from one medication before starting another. And every visit- once every 3 months- my medications would change again.

I have a long long list of things I will not ever allow that is written in my Mental Health Advanced Directive. Some of the things were given to me as a form of long term chemical restraint on the part of the doctors, particularly after my childhood in patient hospitalizations. Some were given to me based on appointments where the doctor fell asleep during the appointment, and then would write down notes that could only be explained by falling asleep and dreaming while my mother was talking. That is my mother’s belief of what happened, and she saw the notes. All I know is I sat in the appointments and watched her nap through my mother’s talking.

I was on so many medications that I cannot list my past meds completely. I can list a few. Sometimes I can even check boxes off a list, but even then I miss some. I know I gained 60 lbs in 3 months at age 12 from Depakote. (Even when I was Bulimic in High school, I never have been able to get below the weight I gained then.) I know that on Risperdal, I became violent seemingly out of no where. I know that on multiple occasions, Seroquel was used to increase compliance and ease of handling by staff- and the vast majority of the other young people seeking treatment at those places that prescribed it were on it as well. Prozac made me manic as an adult, and made my compulsive behaviors more difficult to control- and I was house bound at that point. The list is seemingly endless.

All of this in addition to the disrespectful and disregarding attitudes and actions on the part of the people prescribing. Don’t get me wrong, I had some okay-ish Psychiatrists once or twice. I even had two who *wanted* to be helpful to me. One of them advised taking me off of medications completely when I was 14, upon which time the behaviors my mother found most concerning either diminished or vanished.

(A side note: My mother, not being a Psychiatrist and living in a rural area, followed advice on the med side of things. Over time her records and increasing advocacy skills lead to my getting to the doctor I had when I was 14. Those same skills also helped her teach me advocacy skills.)

But the vast majority of my psychiatrists were not respectful and wouldn’t listen to my internal experiences and motivations for the behaviors they were trying to medicate away.  I don’t remember having someone talk through their process, take my input seriously, or give me options that were tenable. I definitely don’t remember a Psychiatrist who  was comfortable with leaving behaviors I didn’t want or care to treat alone.

As a result of all of this, I have what I think is a pretty well earned fear around seeing psychiatrists. For several years, I’ve been having my general practitioner manage my medications. (I’ve been back on meds off and on since I turned 18.) However, my other supports indicated that seeing a psychiatrist was a good idea and Medical Assistance threatened to drop me if I didn’t try to find one.

We started looking for a Psychiatrist. I was looking specifically for someone with experience dealing with Autistic adults and anxiety. The nearest we could find with sufficient experience was the Merck Center in Pittsburgh. My Case Manager helped me and my mother do the pre-visit medical history and needs paperwork. At first I was concerned. A number of my behaviors that are not things I was looking to treat were on the list as check boxes, while other things I had no idea how frequent they were.

On February 17th, I had my appointment. I was scheduled with Dr. Hudak for that morning, and I took my mom with me. They had used my papers to figure out which of their doctors would be most appropriate to my personal needs. This alone is an improvement over many of the programs I’ve gone through where case load determines your doctor, not specialty.

I bring my mother to these appointments for a couple of reasons. She functions as support staff, where she helps navigate administrative issues, pick up on cues and behavioral aspects of people who are new to me, and helps out with remembering when and how things happened. But she’s also there because, should I become incapacitated, she will be the one needing to know what I want as far as treatment, accommodations, and other needs.

The waiting room was plain, and the unfamiliar check in process was a little nerve wracking for me. I was pretty oblivious to the people there, as my fears about the appointment made it hard to observe there. However, my mother says that she found everyone helpful- which seems familiar- and that when she was observing the other people there for services, no one seemed anxious. I don’t know how often you’ve had a chance to sit in a Psychiatric waiting room, but they are usually full of worried and anxious to be there people.

The doctor came out to get me, and got confirmation from me that I wanted my mother in the actual appointment with me. Then he lead us back to his office. I noticed a lot of books on OCD, Anxiety, and ASDs on his book shelf. That was comforting to me. My mom found his office to have the right balance of personal vs professional to make him seem like a real person.

He was definitely very interested in my internal experiences of my anxiety, and worked hard to understand how I was communicating that inner experience of it. He didn’t disregard or shoo away my internal experiences, which was a pleasant shock for me. I’ve had a lot of doctors- even medical ones- disregard my internal experiences to focus on external behaviors and evidences, and as a minor focus on other people’s reports on my behavior.

He addressed all of his questions to me, unless I then asked my mom to elaborate on a point that I couldn’t remember the details of or that I was having a hard time putting into words. He was very good from my perspective of understanding and negotiating that she was there as my support staff. My mother felt that he was good at asking her appropriate questions, and felt that he listened to me well.

What I appreciated- and what some  people don’t like- was that he was excellent at talking through his process with me as he goes. This is one of the key access needs I have with any doctor, and I felt that he was very good at it. My mother’s impression of this aspect was that he was thorough and that his process reflected that he was actually listening to my input. It was the first access need I remember mentioning (other than explaining a stim toy) to him, and one that he seemed pleased to hear as it is the way he works. I understand some people don’t like this feature in a doctor, but it reassures me that I am being well informed as well as that the doctor is considering my remarks. It also makes me feel more confident in the outcomes of an appointment.

Something that I didn’t fixate on but that my mother has highlighted to me as I was working on this entry was that he was very direct about wanting to meet my needs. He asked about what there was he could do to make me feel more comfortable in his office, especially in light of my fear around Psychiatrists. He made sure he was aware of what accommodations I might need, as well as the role of my mother. He made sure to let us know that we should feel free to communicate needs in the future as well.

When it came time to make choices about medications, he talked about his thoughts on the issue, as well as how things would work with my other medications. When I made it clear that it is my anxiety, not so much the other things, that I am seeking his help with, I felt that he was very supportive. He gave me two medications to chose from. One had a greater chance of success, but might have side effects. The other has fewer side effects but some people don’t find that it works well enough.

Because of the history I have with horrible and unexpected side effects, I chose the second one, which is called Buspar. (It’s been okay so far, but this post is about the visit itself, not the medications.) He was very good at answering my questions about the medications. He also made sure to assure me that if we end up unsatisfied with the Buspar, the other medication is still an option.

When I asked him if it would effect my “twitchies” he told me that it might reduce any that are anxiety triggered, but only because the anxiety would be less frequent. Other wise, I shouldn’t expect to see any changes in the twitchies, which is a good thing because they (both tics and stims) are a part of me that I’m okay with. He was very accepting, I felt, of my wishes to keep my stims and their value as self soothing or self focusing/regulating strategies.

I had one of my stim toys, a mop slipper that is both green and a texture that I enjoy, with me the entire time, and he seemed to have no issues with it that were apparent to either myself or to my mother. She agrees with me that he respected that stims and to some extent tics are a part of myself that I am at peace with and embrace in myself.

After he made sure that all my questions and comments were answered, he let us out and had us schedule a follow up for late April.

Overall, it was one of the most positive experiences visiting a psychiatrist that I can remember.

A Quick Update

It has been a while since my last post, and I have a lot of stressful stress happening. I do have plans for several entries this spring that I hope to get written, but I wanted to give a very quick update in the mean time. It’s my hope that I’ll manage to get a post out on each of these issues this spring.

First, a reminder: Loud Hands Project is still taking donations for 7 more days/until the end of march15th, 2012. The initial fundraising goal of $10, 000 to fund the anthology was met, but there are more benchmarks. If we can reach the next one, $15,000, in the next few days LHP will be able to do a documentary on Eugenics and Autism. That’s only about $1300 to meet that benchmark- and there are more benchmarks after that that you can read about on the website.

If you know me personally, you know that for the past year and roughly two months, I’ve not had a permanent residence. Thankfully, I’ve had family in my area who have alternated care of me. I stayed for several months at my grandmother’s last spring, stayed in a building owned by family that isn’t technically livable over the summer in a camping style, and since September have alternated between my sister’s and my mother’s. It’s very hard on me, and it is hard on my family. We’ve been trying, with the help of my Intensive Case Manager, to navigate the housing system, but with little luck. I’m hoping that I’ll have some resolution on this soon so that I can process some of it to share.

During the time that I stayed at the old house, I had an incident with sexual harassment that might be mentioned in another post. I thought at the time I was being targeted because of being poor, but my sister thinks that the fact that everyone in that little town is very aware of me being disabled was a factor. So I’m hoping to get a post on sexual harassment written. It would have been nice to have written it for International Women’s Day today, but I just couldn’t get it together.

I’ve gotten involved with a group of self advocates called Self Advocates United as 1. They asked me to join their board, and to become a trainer. I got a chance to visit a couple of state developmental centers to teach self advocacy skills for the people still living in the centers to use. It was a great experience. I loved being around other people with disabilities, and I learned a lot about audience participation and involvement from fellow board member and trainer, Larry Kubey. (Larry is also THE music man- he knows almost everything there is to know about pop music from the 60s on.)

I’m looking forward to an event in May where we will be gathering questions about moving into the community from the people from the centers who are looking to move in the next couple of years and addressing them to providers in the community. Hopefully, some of the myths and misconceptions people have about community living can be addressed, and help people feel more confident about their choice to move into the community.  I hope to have something on community living this spring or even early summer to share with you all.

I went to a specialized psychiatrist in Pittsburgh, and had one of the best experiences I’ve ever had with this type of doctor. The facility specializes in people with developmental disabilities, and the particular doctor I saw had a lot of books on OCD, Anxiety Disorders, and Autism on his shelves. Because I’ve had so many horrible experiences, I found it remarkable- as did my mother- and so you should expect a post on this next. Depending on my anxiety levels, I might even get it done this week or next.

It’s my hope that you can use it in a couple of ways: 1) to know that not all psychiatrists are going to be horrible. 2) to have an idea of what might or might not work for you to look for in your search for a psychiatrist that will respect you. 3) To show your psychiatrist or care provider that they don’t have to be so horrible.

Of course, I’ll also be writing a post for Autism Acceptance Day‘s blog carnival this year as well. I’m not sure of the topic yet- and one of the above topics might end up being my post for it- but I do have plans for it. It would be great to see some new writers contributing this year, too, and I’m willing to provide some basic support where I can if you want to try.

The last thing I want to make sure I mention is a little post I am planning on doing for Mother’s Day. I’d love to hear from people about their mothers, or about mother figures’ experiences getting unconventional expressions of love from their families to either share or link to in my post. I’m going to be talking a bit about how even though many of the masculine figures in my life perpetuated some serious abuse- which I’ve discussed elsewhere- how my mother worked hard to support me.

I think that this is especially important, not just because I want to recognize my mother, but because my Autistics Speaking Day post was initially mentioned (and since amended!) in a round up as pointing out parents/allies as the problem, and that wasn’t my intent at all. I think many parents end up coming into the support role with this idea that their voices and experiences are centered. That they are “the voice” of their kids rather than the facilitator of their kid’s “voice.”

And that’s true no matter what level of communication your child has. You are there to facilitate their needs and interests being met. And the role of facilitator becomes more and more just facilitating as your child grows. And now I’m ranting, and I’m going to end now. Basically, I want to reaffirm my gladness for my own mother’s support and facilitation of my needs, and in the process celebrate similar mothers/maternal figures who have demonstrated excellent ally-ship.

On Creativity I: Word Usage

I’m not entirely sure I understand what people mean when they say “creativity” any more. I have this idea of creativity as a broad concept in my head, encompassing a wide range of things. As a result, when people say they aren’t creative or that so-and-so isn’t creative, I’m usually pretty boggled.

Creativity- [mass noun] the use of imagination or original ideas to create something; inventiveness: Firms are keen to encourage creativity.

Oxford Dictionary of English

Creativity- n. the use of the imagination or original ideas, especially in the production of an artistic work.

The New Oxford American Dictionary

It’s taking me a minute, but notice the differences between these dictionaries’ definitions for creativity? The ODE definition is closer to what I think of than the NOAD version. (Note: These definitions are from the Kindle versions that are updated with changes automatically.) When I went to look at the about, NOAD didn’t have anything. It’s a standard American usage dictionary. ODE was a little better- in fact, there’s a long forward in this edition of ODE. They adopted a different style for this one, one that “aims in part to account for the dynamism, imaginativeness, and flexibility of ordinary usage.” (They also included usages in a wider range of English using countries instead of just American usage.)

Because of my language acquisition methods, the range of concepts/shape of the word in my head shifts every time I hear a word differently. Because of the range of the usages I see for the word “creative” is broad, my idea of how to use that word is broad. It puzzles and frustrates me that people have limited definitions sometimes.

In fact, for a very long time- until the past two years actually- I was frustrated greatly by dictionaries. They never seemed to encompass everything about the words that I was learning. That the resource everyone was pointing me to when I was confused by how people used words didn’t cover the areas that I was struggling with- usage, broad definitions, implications, etc. – was frustrating. Beyond frustrating- I’m trying to think of an analogy that is a little more obvious without being unfair or ridiculous to compare. Like entering a supposedly accessible bathroom stall, only to discover there’s not enough room for your power wheelchair. The people in charge say “but we have an accessible bathroom!” but what they don’t understand that the supposedly accessible stall – which is meant to help you – doesn’t. Everyone thought a dictionary would solve my word usage problems, but for me, it didn’t actually grant access. Just because it meets the minimum standards of accessibility does not mean it actually meets the need in question.

As I’ve come to accept how broadly my neurology impacts some of the aspects of my life- and that just because I’m “good” at something doesn’t mean my disabilities don’t impact them- this has become a little less of an issue. My disability justice work, in particular, has reached a depth where I can recognize what is going on. I can now identify the issue, and either find a way that actually helps me or accept that I need to approach the issue a different way. It was a very hard lesson for me.

Don’t get me wrong, it doesn’t make the issue go away. For example, I still can’t define words very well on my own/in my own words, even when I’m relatively competent in using the words. More so for “abstract” words or usages of course. How I struggled in school when this is the sort of definition the teacher wanted instead of one that was lifted almost directly from a dictionary! In elementary and middle school, my LDs greatly impacted my grades and my relationships with teachers who thought that since I seemed to be “brilliant” or “intelligent” my issues must be laziness. By high school, I was a perfectionist about my grades, and when I had this sort of teacher I would get very frustrated. (Interestingly, the advanced placement or “honors” teachers were generally better with my approach to language usage than my other teachers.)

This brings me back to my point- to me, this approach of finding my own work around, one tailored to my own needs, is creativity in action. Building an accessible world is creative to me. Innovating, creating, re-purposing- to me, these are all creative acts. Sometimes they are hard acts, sometimes they are necessary acts, but they are all creative ones.

Sometimes they are vanishingly small acts- finding a way, even collaboratively, to deal with the trigger warning vs content warning issue for example. That debate is an act of creativity to me. The sense of awe I get when seeing innovative art even comes in to some extent. Any more, as I accept that other people don’t see it this way, I even get a sense of wonder about the sheer diversity of creativity- that my sense of it includes things that other people don’t, that it includes people who have felt alienated by other senses of what creativity is.

But that’s my personal definition, and if someone doesn’t identify themselves as creative I won’t label them as such. Performing acts of creativity isn’t the same as feeling an innate sense of creativity, and labeling a person something that functions as identity without their consent is kinda disturbing to me personally.

So, too, is ascribing attributes to an entire group of people. There is this- idea? Cultural meme?- that Autistics, because they are Autistics, aren’t able to be “creative.” I think this is pretty much the most easily debunked idea out there, but I could be wrong. It could be that their usage of creativity meets neither my own definition- which is admittedly broad- nor the ones in the dictionaries. But most people I’ve heard spout this realize they are wrong pretty quickly. There’s another one that people with mental health disabilities are inherently/innately creative in the traditional sense. This is harder to debunk, but it can be done. Especially if you know some of the people I know who explicitly identify as not creative. And I’m not just talking about medical model or even disease model people, either. Segments of the MHD community do actively ascribe creative to their experience of their MHD. That’s awesome. But it’s not awesome when they then try and ascribe creative as inherent to all people with MHDs.

I’m fine with creative, I’m even fine with linking my forms and concepts of creativity to aspects of my disabilities. But that’s my experience of my own disabilities, not someone else’s experiences. I don’t have a right to infringe on their autonomy- on identity or on anything else. I need to recognize- and yes, it is hard work to think this way for me because of how my brain works- that their experiences are not my experiences. And my experiences are not yours, your child’s aren’t yours, and your clients’ aren’t yours.

Which circles back around to realizing that not everyone has the same sense of words. Please understand, it wasn’t until I was 21 or 22 that I realized that not everyone experiences words and concepts as a mish-mash of texture, movement, and shape. I struggled a lot with figuring out why my words were wrong before I comprehended that I was processing the concepts behind the words differently. There were even times where I was shocked that someone would comment that they found a way of saying something or making something was creative. To me, the langauge that they found poetic or the art I made that they found creative were literals or very close approximations of how I experienced those concepts.

When I sit down to write poetry or make art, I don’t sit there and work on “creativity”. I sit there and I try out words that seem to be the right shape for what I’m “seeing” inside of my head. I sit there and think about the things that make me feel a certain way, that makes my internal experience match the concept my art is illustrating. I create a lot of analogies, and I go through a logical process of turning them into similes and then into metaphors. I create long lists of properties I see and feel about the two things I’m comparing. Sometimes I have to drop a concept because when I make the lists, I realize that the things I’m experiencing aren’t as similar to each other as I initially thought.

To me, while this might technically be an act of creativity, it doesn’t make me creative. It’s just how my brain runs. The sense of me as creative here is something that you or society is experiencing about me, and in this case I don’t mind it at all. Sometimes I do feel like I’m being “creative” in a smaller sense- the NOAD sense if you will. But much more often, I’m just being, experiencing the process of creating in the OED sense, or even my own personal sense of what creativity can mean.

Thank you, by the way, to elementary school teachers who got frustrated and desperate trying to teach me the differences between analogies, similes, and metaphors. I know it took me ages, but the tactics some of you tried did end up creating a functional system to process language stuff later on. Also, I read a lot of the books like “Heavens to Betsy” and other linguistic trivia books that would explain in plain language why people said certain things and used words in certain ways from an etymological perspective. I’m one of those people who loves dictionaries with huge etymologies. Sometimes I understand the word from the etymology better than from the printed definitions. In any case, language use and I have quite the complicated relationship.

I’m going to stop this entry now. The next entry in this series will be on poetry, and I’m setting a tentative date of Thursday, December 29th for it.  I’m not sure how many parts this series will have, as I think it will be an on going thing where next time I work out an entry that falls under the topic it will be a new entry in the series.

On Childish Things II: Harry Potter, Reclamation, and Finding Community

All of us have moments in our childhood where we come alive for the first time. And we go back to those moments and think, ‘This is when I became myself.‘” – Rita Dove

This is part two of a two part post. You can read these separately, but this post will make more sense if you’ve read On Childish Things I first. 

[Content Warnings: mentions of Abuse, ableism, denigration of “childish” behaviors”, sibling’s internalization of abuse/ableism]

The year that Rick left was the same year that I read the Harry Potter books. At first I had been reluctant to even read them for the same reasons I had avoided other fantasies people my age were reading. But then I read Prisoner of Azkaban.

I hadn’t sought it out. My cousins from New York were visiting and my Aunt Lisa over heard me complaining that I was bored and wanted something new to read. She went to her van and dug out one of her son’s books and handed it to me. I think the most effective way to explain what happened is to say Collin never got his copy of PoA back. (Cousin, I owe you a copy if you ever read this.)

Within a few months, everything in my life became about Harry Potter. It was mostly internally, as we were too poor to afford any merchandise. But every moment, every safe hold, was wrapped up in this special interest that was blossoming within me. I dreamed of leaving Rick and therapy and censure behind, to go to a school- not a magical school, I knew that wasn’t real- where I would have to stay in a dorm, as safe from it all as Harry seemed to be from his Aunt and Uncle. Indeed the moment when I truely came to love the SCA was when, during my first Pennsic, the only comments I got to sitting to read in a public thoroughfare were comments from adults asking me like an equal how I liked the latest book.

Rick finally left that fall- and we got internet for the first time. My struggles with being around others my age had developed to a point where, combined with behaviors at home, the choices were a residential placement or the newly emerging cyber school programs. We chose cyber school. That first year of internet was covered through that, though I learned more from my “recreational” time than I had from the official curriculum. Searching for more things on Harry Potter, I found the Fandom community.

I don’t know how many of you are familiar with Fandom. I think of it a bit by taking apart the word parts. Like in a kingdom, all things were centered on what the thing we were fans of in place of a king’s will. It’s like a community where a shared interest- or, not uncommonly it seems, special interest- is where everything is funneled through. I learned so much there- how to have friends, how to maintain coversation, even how to write and articulate my thoughts and feelings beyond inept, purely practical communication.

Being a part of this community was just as “magical” as Hogwarts itself. The elusive concepts of community and fellowship that I saw others have little trouble with became real things. Connection to others suddenly had a real value. I could go on, I think, for a long time about how Fandom changed me, gave me elusive skills, and even healed some parts of me that abuse and mistreatment had damaged. (Indeed, Fandom and the vast joy it gave me allowed me for the first time since early childhood to reclaim that oft repressed joy of flapping.) But Fandom’s healing powers has only a tangiantal connection to what this post is about.

Until after I graduated high school, Harry Potter and its fandom were my primary interest. I ate, slept, and breathed it, I did my homework at school instead of reading in my down time there so that I would have more time for it at home. I excelled in it. When I finally returned to public school after a year at the cheapest private school in my area- an evangelical school- I had a focus that allowed me to ignore the other students for the most part. This focus on fandom and my fandom friends also allowed me to follow my mother’s advice of just trying to be painfully nice to others, which meant I did eventually gain a limited number of friends.

At the same time, though, the other things that I had avoided continued to be things to avoid. While some of the other fans my age were also into books like Animorphs, I secretly looked down on them. (I now recognize how horrible this is, and wish to appologize to my friends who I secretly held this interest against.) Though my brother’s skill at video games and my own enjoyment of RPGs existed, I tried to focus on more mature stories ranging from the Final Fantasy series to fairly- though not explicitly- adult themed tabletop gaming. Other stories were terrifying to me because of the childish associations I had for them. Indeed, though I did play Pokémon in private when no one was around, I didn’t allow myself to talk about it. I didn’t allow myself to fix the names in my head of the various creatures and towns for fear of anyone actually knowing that I could enjoy it.

While my interest in Fan art and geekiness allowed me to gain an interest in the art and style of Anime, I couldn’t bring myself to enjoy any of the stuff marketed to teen aged girls. Indeed, even though a distant cousin of mine shared an interest in anime I couldn’t deal with being around her for very long, as her love of Sailor Moon left me conflicted and a little scared. It was firmly, to my mind, in that realm of childish things. Even though my primary tormentor was gone, the fear of being seen as a child and as incompetant remained.

The effects of how Rick used this to divide my siblings and I remained too. My brother was 16 and I 17 when he decided he couldn’t handle living with me anymore. My behavior at home, though much better, could be set off by taking away my special interest. I was using up my energy and self control at school and in public, and couldn’t handle being parted from my interest for most things that my brother saw as “normal.” Honestly, I don’t know to this day what he thought would be better or more normal. I have no idea what else someone with very few friends- most of whom I didn’t do anything with outside of school or organized activities until the end of my Senior year- was supposed to be doing. I did know that I had something that brought me joy, and that taking it away brought me distress.

Having internalized the idea that I would never be mature or competant, my brother couldn’t take it any longer and moved in with the family of one of his friends. Though he is not as avoidant of me as he once was, he never lost the idea of me as incompetant. The idea that I would never be competant to fully understand things never left him. To this day, I do not feel safe holding any opinions when I am around him. I am not skilled enough or fast enough with putting things into words to defend my opinions, and when I become frustrated he brings up that I’m too emotional, stupid, or even incapable of understanding things to hold a proper opinion. Indeed, even those times I have prepared myself he will point out that in his opinion since I’m Autistic, what I have learned about social dynamics, politics, and even social justice are invalid or just not true. That my reasoning automatically must be immature and incomplete. I my mind, he has assumed the role of Rick’s enforcer, even if he doesn’t mean to.

Before Will left, my sister had her accident. Her own judgement centers had been damaged by her Traumatic Brain Injury, and this left her with following impulses. Unfortunately, this meant that I lived through a period of several years where she took advantage of how easily upset I was. However, she had been too young to have the full force of Rick’s influence and she eventually matured. At first, she still thought my uneven skills meant I was being stubborn or lazy. After my niece was born, though, she dated a young man who had 4 step siblings who were all somewhere on the Spectrum. Seeing that wide display of what Autism could be, her approach towards me changed. I’d never say she treats me perfectly, because she’s still herself- a proud bitch by her own labling. (I only use this word for her because it is how she describes her self when she’s short tempered.) But she treats me as an Equal in a way that accomedates for what I do need accomedated for. When I need her help, she no longer holds it against me. While she is still hard on me, it is more of pushing me in my skills than accusing me of anything. She treats me as much as an equal now as she treats anyone, really.

Years have gone by. I’m 24 as I write this; it has been more than 11 years since Rick left. While I hope, I doubt that I will ever reach the day where the things he left behind in my head are ever completely gone. Afterall, milder forms of what he has said are riddled throughout our society. Careless ableism, paternalism, and fixation on the pitiable and perpetual child with disabilities are unfortunately a deeply ingrained thing for the West. But I take hope, I think, from the little buddings of Autistic Community Building. It’s not just the community itself, of course- community alone is something I could seek out in fandom- but a community that recognizes and reclaims the things we’ve been told to hide.

Some of my friends haven’t felt forced to give up childish joys. I wish I were one of them, but I am not. In spending time with my community, particularly members my own age range, I am surrounded by reminders of what I had forsworn, of joy. But for me, reclaiming this part of who I am is harder than reclaiming the joy and releasing the shame of stimming. Rocking and flapping in public is no where near as terrifying for me as openly taking joy in childish things.

I wish I had a better way to word all this. To uncover all the parts of that terror. In fact as I type this, my throat is tightening with anxiety. If I reclaim my childish joy, a part of me thinks, am I affirming that idea of being stuck a child? Am I admitting to being that child in an adult body that is bandied about with pity? Do I become not an adult with their own interests but a child stuck on the past?

I know that these things aren’t true. I no longer feel shame for or superior to my friends who continue to take joy in Muppets or My Little Pony. I no longer avoid conversations where my partners linger on Pokémon or Sailor Moon (which it turns out is pretty cool.) I’m slowly taking steps to explore those things that I had discarded in fear.

But my doubt in myself lingers, and I find it so hard to join in joy easily, myself so out of practice at the words and flow for these sparks of childhood that I mumble or stay silent. I have to tell my dearest friends aloud that I do enjoy listening to them talk, and to pardon my silence because it’s too scary, my toungue too trembling, to join in their words. I beg of them to indulge and keep talking, because I still love some of these things but am not yet past my fear enough to speak that love aloud.

A friend recently was talking to me about the new Muppet movie and their excitment over it. Eventually they took notice, though, that I only hummed along to their singing and smiled and nodded to their reiterations of facts. Like many members of our community, they had been taught that a shortcut to figuring out if someone isn’t as interested in a conversation is if they do the smile and nod. Trying to explain this whole thing to them was difficult- they had never been made to feel as I had. Eventually I just told them I’d be writing this post, and we continued on walking.

A block later, I mentioned having enjoyed the muppet babies cartoon when I was very little, and how I had liked the peanut butter and bananas sandwiches that one character had been fond of. It was a short sentance, but it was something. Some sort of tiny step forward.

This week, I have plans to try and see the new Muppet movie. I don’t know that it will happen- my mother is a bit unreliable for recreational plans- but it is a plan.

My three-year-old niece, too, has been a catalyst in re-examining these things. Last week, my niece and I started watching a children’s show called Ruby Gloom. The day after she left, I was still at my mother’s. I turned on the Xbox, and I sat down and watched an episode, just for the Joy of it.

Progress is slow, but it’s never too late to make a little more.

It is never too late to have a happy childhood” – Tom Robbins

This post is dedicated to my best friend. Their interest in things I had put away initiated my thoughts, and their joy made me re-explore my own shame.

On Childish Things I

[Content Warnings: Abuse, ableism, spiritual violence/abuse, misapplication of biblical concepts as justification, denigration of “childish” behaviors”, mention of disordered eating]

The things which the child loves remain in the domain of the heart until old age. The most beautiful thing in life is that our souls remaining over the places where we once enjoyed ourselves.” – Kahlil Gibran

When I was a kid- and I mean between the ages of 8 and 13- I was desperate to get away from anything I liked that were “childish things.” Cartoons? Muppets? Books with pictures in them? All became objects of shame. For me, though, this was not triggered by an internal dislike. Here, I cannot speak to the lives of other Autistics. I know a number of my friends and collegues who never faced this particular pressure, even if they faced the same taunts. The same use of “childish” as a dirty word.

My mother’s second husband, Rick, was a big man, and a bully. Speed, attention, interests- all were made into critical faults in me. Even hunger after school was pointed to and mocked when my mother wasn’t around, fostering an unhealthy relationship with food I still haven’t been able to shake. His treatment of me was often explained away by two interconnecting concepts. The idea that as a child with disablities, I both needed treatment and couldn’t accept it as “right” was a big one, but the other was the concept of “The Willful Child.”

“When I was a child, I used to speak like a child, think like a child, reason like a child; when I grew up, I put away childish things.”- 1 Corinthians 13:11

Today, I may be Jewish. I’ve even taken on my ethnically Jewish stepfather (my mother’s 3rd husband)’s last name, Breakstone. But at that point in my life, my immediate family all practiced some variation of Christianity. I could talk about specific denominatons or sub-faiths- from Dutch Reform to Jehovah’s Wittness- but in truth, what was held in our home had less to do with a denominational affliation and more to do with Rick’s idea of using biblical teachings to his conveniance.

One of his favorites when it came to me was the concept that some of you may be familiar with of “The Willful Child.” James Dobson’s books on this idea- The Strong-Willed Child– may be fairly known now, and maybe they were at the time as well. What I do know about how they were used at this time was how they were used at my house- the same way the bible itself was used, at least when my mother wasn’t home. The principles were twisted to Rick’s convenience. (My mother and I personally found that “The Explosive Child” by Ross Greene worked a lot better for me in the end.)

While at the same time encouraging services and at home abuse as “needed treatment,” Rick also labled my behaviors as that of the willful, sinful child. I was told that I was everything that a good “Christian” child was not, be they actually backed up by biblical text or not. Resistance to abuse was also framed as childish, and as willfulness. Both typical behavioral censure and spiritual censure were used against me for things as simple as wanting to continue playing with something or not cleaning up fast enough. (In retrospect, it is no wonder it took me so long to admit that even as a child- and I hope not to offend my Christian friends and readers- I found the concept of a risen Christ improbable at best.)

Perhaps most devestating in the long run was how this censure was used to divide me from my siblings. Today, I have a supportive relationship with my sister. But at the time- and to this day with my brother- this was not true. My behaviors, my failure to live up to Rick’s idea of an obediant young woman, were held up to them as a model of everything they ought to strive against being.

I think my Catholic friends might be familiar with what my behaviors were labled under different names. Lazy (Sloth) was a big one because of my lack of speed and efficiency. Angry or even violent (Wrath) when I was reduced to lashing out as resistance. Fat, chubster, and so forth (Gluttony) for hunger and later hoarding behaviors. While I avoided the traditional concept of vanity being played against me until my eating disorder had excelerated, elements of it cropped up in accusations of selfishness (Greed) and willfulness whenever I attempted to establish boundries about my self, my privacy, or my belongings. Indeed, my distress when several things I had charished as perhaps only an Autistic can were lost in our move to Pennsylvania were added to my greed and willfulness. The only “Cardinal Sin” I was not accused of in some way was lust, though I’m not sure if it was through the non-consensual labling of PWD as asexual (as opposed to labeling one’s own orientation as such) or if it was my age.

I could- and perhaps someday I will- write a full length book about the things that happened when my mother was not at home. I want to reaffirm right now that other than her obliviousness to what was happening my mother did right by me in every way that she could. I believe that in part the spiritual abuse she was facing- an abusive form of complementarianism combined with a religious bigotry against divorced individuals- combined with her own ADHD that allowed things to be missed. Additionally, Rick’s articulate dissmissals over my barely articulated- if you could even call it that- complaints of “unfairness” would be hard to dismiss in our society even without the abuse she was facing.

When I started this post, I didn’t realize how much spiritual abuse played into this, nor how much “willfulness” and “childishness” had been conflated. In any case, they were conflated and tied together. Indeed, any sign of so called willfulness were pointed out as evidence of why Rick’s claims that I would never grow up, that I would be perpetually incompetant to make my own choices just as a child would be. I became desperate to prove somehow that I wasn’t childish- that I wouldn’t stay a child forever.

Unable to eliminate my “childish, willful” behaviors despite my own best efforts and Rick’s “treatment,” I searched for other ways to escape this censure. The only thing left to me was to eliminated the outward trappings of childhood as much as possible. Things that I enjoyed became things to avoid at all costs. Cartoons were an especial target, even if they weren’t designed exclusively for children. We didn’t have TV- we couldn’t afford cable, and there were no channels that we recieved reception for- but we did have VHS tapes.

No longer could I enjoy, for example, the animated Hobbit and Return of the King. I forced myself to bury my distress at having lost my Disney movies (they were among the things that were lost in the move), and struggled when my brother’s interest in Beauty and the Beast and The Nightmare Before Christmas flourished as we entered our teens. Even my enjoyment as a child of puppet based television such as the Muppets or Fraggle Rock were to be eliminated.

Toys, too, became objects of dirision, even ones that were educational or even deemed “age-appropriate.” I had never really played with my toys the way some children would- I stacked my dolls or created displays of them unless another child was present to direct play. But now even creation of toy based dioramas was taboo. My drawings became focused on more mature subjects and styles. I began to draw, for example, scenes of the slave trade instead of costumes when my interest in history shifted to the Civil War era.

Indeed, I struggled even with my special interest in history. While it can be a mature and sober pursuit, it had initiated via a children’s book on dolls from the Victorian period. My readings turned from child appropriate texts to thick novels and non-fiction accounts. I think I would have turned to them even without this pressure, but I don’t think I would have been so strident in avoiding books written for children my age. Perhaps I wouldn’t have mocked them as harshly.

My own sense of aesthetics was also to be challenged anytime it might co-inside with “childish things.”

One thing I couldn’t rout out, though, was my interest in fantasy and magic. I did try to limit it to “classics” of the genre though- instead of contemporary young adult fantasy I read T H White, CS Lewis, J R R Tolkien, and similar almost exclusively. The exception was in the school library, where I read every vampire novel I could get my hands on. Even there, though, I tried to form a preference for classic, genre development specific stories such as Carmilla. I don’t regret this, as it did eventually develop into my sub-interest in Gothic Victorian Romantacism which I indulge in to this day. I did take joy in it, but I trained myself to limit my expressions of that joy.

Fairly early on, before things became more obviously abusive, my expressions of joy and comfort were limited. If seen on a timeline, this was the “first” target, though it is one that regretfully many parents of Autistics target. Flapping was eliminated. Bouncing was frowned upon. Toe walking was framed as inappropriately timed and poorly executed “ballet” play. (I was interested in dance when I was very young, but by this point I was not.) Wiggling my fingers was wrong. Even those “allistic stims” of leg jiggling or finger tapping were a basis for censure, pointed to as proof that I was unthankful, impatient, and willful. The only acceptable forms of joy were smiling and sometimes- and only when deemed appropriate- laughter. Seeing as how smiling wasn’t an automatic thing for me, especially when feeling simply happy, this didn’t become terribly common.

Children need models rather than critics.
– Joseph Joubert

This post has gone much deeper and longer than I ever thought it would. It has been harder to write than I truely expected, even after thinking about it and predrafting it in my head for a month. I’ve decided to save the second half for another post, which you should expect tomorrow. It covers the working through and reclaimation of joy, among other things. EDIT: The second post, On Childish Things II, has been posted.

This post is dedicated to my mother. Without her, I would have been forced into institutional settings and would never have been able to move beyond this to reclaim joy.

Rocking (and Flapping) at a 1000 Revolutions a Minute

[Content warning: Mentions of Ableism; Censored use of the r-word; Abusive Treatment]

I made it down to an occupy site!

I am in the DC area this week for a variety of things. So Tuesday afternoon I went down to the site at McPherson Square for a couple of hours. It was significant for me in part because although I’ve been really active with work groups at Occupy Pittsburgh, and been doing a lot of Occupy disability work, I’ve yet to make it down to any physical site. (Mainly it is an intersection of disablity and transport issues.) So it was exciting.

I stayed for a while, but I ended up leaving 10-15 minutes earlier than I had intended. Turns out the people in the tent behind the sidewalk where I had plopped down were Ron Paul supporters, and they got their supplies out and what not. I decided I’d rather not have my disabled self be used to create support for someone whose policy platforms tend to be counter to the needs of people with disabilities.

I made a youtube video of a portion of my time on site. (And yes, it is captioned, thanks to Universal Subtitles.)

The reason this is getting its’ own post and not getting lumped in comes from a comment on this I got from Urocyon on Google plus. She commented about how even thought stimming makes her feel like she’s releasing tension from trying not to, it is uncomfortable for her as an adult to stim in public.

I responded with-

 I think that those feelings is what makes rocking or flapping in public so… well, revolutionary and powerful. Because we’ve had those thoughts that it’s bad or wrong or something to hide ground into us to the point where we doubt ourselves and our right to exist as we are in public spaces…

Rocking and flapping and spinning and humming and pacing and racing and- well, and stimming some how becomes a challenge to those things we’ve internalized about our rights to live as we are. It is somehow this reclaiming of some part of us that we love but that we were told is wrong.

We have been told that these basic steps of self care- and that often is what it ends up being in a way- are wrong. Quiet Hands and You look like /are acting like a R[-word] and people will think you are crazy and countless other stories, these are the things we were told from a young age about how we are bad and wrong. We are trained fiercely to assimilate into a world that doesn’t want us, but other people in the warm bodies we inhabit and strangers they can love to move in behind our faces.

The week before I sat in the park and rocked, feeling my defiance, I spent several nights wishing I didn’t exist. I knew all the things I talk about here intellectually, but that base part of me is still filled with the remembered abuse of my past. The most prevalent are those that were excused at the time as treatment while speaking words describing me as a burden and my being as a barrier.

So, in the face of stress, the only answer that came to me is that I should not exist. I sat rocking and blubbering the late nights away while my sister was sleeping fighting those things from my past that still live in my head. This time I won, but today I saw a friend who was saying of herself the same things- I should not exist. This is a friend who is passionate about her rights as a person with disabilities (among other things), and still the thought- I should not exist.

When the things that make up a part of who we are is so suppressed, how can it not be revolutionary to rock in public? How could I not include this part of myself when protesting a system that treats people without economic means as worthless? Why shouldn’t I stim in the face of a world- one both outside and inside- that tells me that I, too, am worthless? (If you are new, I am indeed fond of rhetorical questions.)

I am stimming 1000 revolutions a minute when I go out and stim at a protest. I’m being Autistic, fat, disabled, queer, poor, covering, and many other things in public when I am in public, and being visible here is bringing all of those things out and into a space where revolution can happen. I am speeding our revolutions while joining their revolutions, even if it is only that tiny amount that visibility brings.

But revolution can happen in places that aren’t big protest sites too. Protest can happen even when you are alone, the only person to see it yourself and the only mind it will change is that part of you that believes what we’ve been taught. That is revolution at the most basic element- being able to change our own minds to make a more equitable world.

So yes, I rock (and flap, and…) 1000 revolutions a minute. We all do, when we dare to be who we are without apology, and dare to confront that which tells us we shouldn’t exist or aren’t worthy. We do when we dare to exist freely as people with disabilities, as Autistics, as all of the things we are.

We are a 1000 revolutions a minute.

Republished at Persephone Magazine November 28th 2011.

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.