Parents

We are running up on the 2015 Disability Day of Mourning vigils (aka Day of Mourning 2015: Remembering People with Disabilities Murdered by Caregivers on March 1st) and it has me thinking about parents. Or more specifically, how parents react to the autistic and broader disability communities.

I kept asking people to consider hosting vigils, and too often there was push back that they were concerned that the parents in their community or the parents of their group members would fight it. Which I want to say puzzles me, but that isn’t quite right. I know what is happening here, it happens elsewhere too, but it still seems like nonsense.

First let us start off with this: Unless you’ve murdered or tried to murder your child, or actively fantasize about murdering your child, this isn’t about you. This event? Is not talking about all parents as some sort of blanket entity. It is acknowledging that while hopefully you, my reader, are not going to kill your kid or charge, there are people who do, and that that is wrong. I, and the disability community, want you to join us in saying “it is wrong to kill your kids. Period. Disability is no excuse, lack of services is no excuse. It is wrong.”

Saying that it isn’t okay to kill your kids isn’t about you, as a good parent. It isn’t, I promise! But it is important for you to join in on. You can’t tell, and we can’t tell, merely by looking that the parent next to you is also a good parent. The children who have survived can tell you that. The people who outlived a loved one who didn’t can too. So it is important to make sure that you are telling all parents, good and bad, this very simple thing- that disability status isn’t an excuse for murder. That murder is bad. It might feel too basic, but the cases we’ve heard of over the past several years show that when it comes to this issue it clearly isn’t. There’s still enough sympathy, enough rhetoric, that makes some people think it’s the better choice.

But the vigils for murder victims aren’t the only place I’m running into this issue. I do a lot of policy work. I have a deep love hate relationship with doing policy work, though part of the hate if I’m honest has to do with most of it currently requiring a minimum of a 5 hour drive each way. At some of these meetings parents come in and say some very reasonable things… but then are shocked when I add something that would put protections for their child from them. And every time, I have to tell them “I trust that you are a good parent. I trust that you have your child’s independence, safety, and access to community at heart. But not all parents are good. We have to make sure that their children are also protected.”

Some of them still will be upset. They really want, I think, to believe that if there was just the right services out there that all parents would think like them. I admit, that would be easier. But it’s not true. You can insert your token “and they say we don’t have theory of mind” joke here if you must. But there are parents who have done deeply horrific things to their disabled children, ending in their deaths.

But that’s just the more extreme horrors. I’ve also met people whose parents have told them, all the way up to age 40+, that they are not allowed to vote. In my state, that is not true- you can still vote in PA even if you are under guardianship. I’ve met people who have been told that if they move into a more independent situation, they will either be abused, or subject to more abuse. I know people who were abused before they went into a placement, and whose care givers hold that over their heads as something that will happen if they try again any time they ask for more independence. There are endless ways that a person can let their goodness fade away and reduce their loved one, to aim not for a better life but for one that is easier for the family or caregiver to manage.

And there’s contributing factors as to why these things happen. We have a lot of rhetoric that embraces the idea of people with disabilities being burdens. Sometimes there is explicit wording about our financial cost to our families, and sometimes it is more about all that time. When I was looking around for links on the Tutko case, I had to discard some of them because of how hard they framed things in that first week as being a case of the mother giving up family life to “care” for their kids. That was a deeply horrific case, one that later had that tone stripped as the neglect was extensive and the way that her rejection of help was tied to a history of child protective services was revealed. But it was still the default, and that is concerning. That is how deeply that burden rhetoric has permeated.

Again, I trust that you reading this are good people, good parents. Some might even say that’s too trusting, but I’m going to trust you anyhow. I’m going to trust that when you talk to your kids, you are letting them know it’s not okay for anyone to harm them or to kill them. That you fight for and with them, but listen to them in whatever way they communicate. That you let them know that they are loved, period, and that that love is about them, not about anything else.

And I’m going to ask you to not fight against us, to not be defensive, but instead to stand with us when we say, “no, it’s not okay.”

I Do Believe This Is…

Content: Mentions of violence against people on the basis of ability, race, and so on; Mention of abuse.

Friday, March 1, is the 2013 Day of mourning for those PwD whose lives were lost to the hands of their caregivers. Last year, it was at the end of March, not the beginning, which means it’s not quite the anniversary of knowing one of my abusers/caregivers is dead. Last year, those two things fell on the same day. I felt shock and relief mixed into my grief. The shock predominated throughout most of that afternoon.

It’s been a year and a month since Stephon Watts was killed, by police who his family was told to contact for “help,” for the combination of being an Autistic young black male. 11 months since Daniel Corby’s murder. This fall it will have been 20 years since Tracy Latimer’s murder. A month and a half since Robert Saylor’s murder. Almost 80 years since the Nazi’s T4 program. I can post lists and timescales forever, it seems, and it still won’t have all the names it should.

Our dead are mixed in with the dead of others in places where our identities cross, these cross sections boosting statistical probabilities. Stephon’s murder was just as much (if not more so) a factor of racism as disability. T4 blended in to a larger propagandistic and genocidal engine.

There are sadly always many for which to mourn.

This year, we’ve seen violent events, events which have gotten the attention of major news outlets and the dwellings on of news cycles. In these ways, it is unlike our dead- though our dead are hidden in theirs. Instead of joining in mourning, the public uses these deaths as a means to fuel the same bigotries which lay behind the excusing of our deaths and pardoning of our murderers.

Recently, some noticed something terrible, something demonstrating the way in which a certain segment of the disabled population is viewed, when they googled “Autistics should”  and “Autistics are.” Google uses everyone’s searches to guess what your next words will be. Based on the searches in their database, google suggested things like “Die” and “dangerous” to complete the search.

A flashblog (see both “should” and “are“) appears to be bearing some results* in amending the computer side of this, but Google only has the ability to amend what their searches suggest. They can’t amend a code and instantly remove the biases that lead to those searches in the first place. (Though it does help.) Erasing bias a is longer, and more complicated, process than that. A process which is on all of us to work on.

A process that we all need to keep in mind. Bigotry that cannot be forgotten, as it blooms fresh again.

My words here are not as direct as I’d like. I see that my sentences are convoluted, but every time I fixate on them enough to begin translating them out from the word pictures in my head into plain language I feel those things that indicate I’m about to cry. It’s hard not to, when you allow yourself to really have the reality sink in. Terror, relief, grief, anger, sadness, and the sense of ever reaching, all inter-playing and weaving.

Yes, I do believe I’m mourning.

______________

This year’s vigils are being jointly backed by ASAN, Not Dead Yet, and the National Council on Independent Living. You can find the nearest vigil to you on the ASAN website, and I’m (as an ASAN person) managing the virtual vigil 3:30pm EST-Midnight-ish, with a good friend, That Crazy Crippled Chick, as my second.** This is a cross disability effort; Autistics are not the only PwD to be murdered by those who were supposed to protect us.

* The article in the link is titled in a way that suggests that this change is already in effect. This is inaccurate; as of this writing, Google has agreed to modify their algorithms to eliminate this issue. It has not been implemented  in a way that impacts the user end experience as of yet.

** Or number one, if I’m Picard and she’s my Riker.

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.

To Remember, Not Forget

[Content: Abuse, Ableism, murder, death, grief, relief, and feelings about these things.]

This time last week, I was getting ready for both the DC and virtual vigils for People with Disabilities who have been murdered by their family or care givers. This time last week, I was also learning that my primary abuser was dead.

ASAN and other groups around the nation (and a little bit beyond, too, on an individual basis) held vigils for People with Disabilities who have been murdered by their care givers. You can read about the details of why “now” from Zoe Gross writing for ASAN, as she addresses that better than I could in the call to action for the vigils.

The bottom line is that we live in a world where our basic blocks of culture devalue our existence to the point where our murders are called Mercy Killings. Our murders become about the burdens we place on our parents, on our cost to society, and on non-disabled people’s projections of our possible quality of life. Even our names are erased, made eternal children regardless of our age of death because of who it is who killed us. George Hodgins was 22, and still the headline read “Sunnyvale Mother Kills Autistic Child.”

When I was a child, Rick, my mother’s second husband, excused his abuse of me as treatment. The less excusable stuff he saved for when my mother wasn’t home. Sometimes, he even baited  me, purposefully getting me wound up so that I would act out in a way that would justify what he wanted to say or do.

And people believed him. The cops believed him the one time I got the nerve to call. The parts my mom saw made her believe him, at least for a while, and her notes about the behaviors he triggered are scary. In them, I look irrational and  dangerous, while in my memories I was provoked and terrified. Without knowing the cause, a kid like I was screaming, or charging to escape, or throwing myself into walls is scarier than I ever saw myself. He played my needs to suit his and to make the unacceptable acceptable. He provoked the worst to suit his own behaviors, to make sure I fit the idea of deserving what happens that we are fed daily.

When the vigils were announced, I decided that those of us who couldn’t make it to a live vigil should have to right to hold vigil as well. It’s an emotional topic for me, how people from rural areas and housebound folk are discounted in movements. Even in the (broader) disability movement, there’s a tendency to devalue those who can’t make it out to a vigil or a rally. It saddens me, it angers me, and it motivates me. So last week was spent preparing for the virtual vigil.

When the time came, I was able to do it from the Washington, DC vigil’s site. We used tiny chat, and it was kind of cool. I had everything prepped for the time, I only had to show up and do it.

Then, Friday midday, I called my mom and heard. I heard that I was free. That the constantly looking into the crowd in fear he would be there could no longer be fulfilled. That we knew where he was, and knew he’d never be able to inflict harm on me again. That all the damage is already done. That he had died, natural causes, in Pensacola, Florida.

I went into shock about an hour later, though I had thankfully managed to meet up with Melody Latimer by the time it hit full force. Thanks to her, I didn’t accidentally walk into traffic or misstep off the metro platform. She made sure I got myself food if I wanted it, and then plopped me down in a safe space so she could work and I could process and come out of it.

The same time that I was mentally preparing myself to run a chat vigil, to mourn fellow people with disabilities, I was writing a letter to friends to tell them about the end of my own nightmare. As I prepped on site that evening, I realized that I would no longer have to fear death from his hands. As I reviewed the list that managed to fit on the fliers, I realized that all it would have taken was a slip, a weight distribution in the wrong area during restraint, a swerve when I tried to escape the car, and my name could have been on that list. That that list is truly my peers.

When a gentleman came up before the vigil and commented that we had forgotten a certain little boy whose mother had poisoned him, all I could do was thank him. The number of names that could fit on the flier or the poster board is such a small percentage of the names and stories of those killed by their care givers. It’s a countless wordless horrors, the murders that society mitigates because of our disabilities, the deaths inadequately mourned because our would be mourners are told people like us would have been better off.

I feel sick, too, to think of how many of them might have been stopped if only our world didn’t dismiss our abuse as needed. If our lives weren’t devalued, how many of the PwD who were starved to death before the neglect was noticed would be part of that count? How many people would be growing older and living if the tiny abuses and dehumanizations that make people justify murder weren’t justified by disability? If we lived in a world where my abuser hadn’t been able to get away with it as long as he did would the people we mourn still be alive?

The virtual and in person DC vigils went well. We remembered. We tore down the excuses and justifications. We mourned.

In the hallowed out space of relief, I remembered what we were fighting for. Just because one of my nightmares was over didn’t mean my future was safe, or that other people’s nightmares couldn’t come true.

One week ago, we observed the deaths of the people for whom our fight for equality comes too late. We hoped to someday never see a new name on the endless list. We hoped to change it all, one day at a time. We mourned our dead, and renewed our commitment to fight like hell for the living.

The next day, Daniel Corby, aged four, was killed by his mother.

There Are No Words.

I wish I could say something new about George Hodgins.

I wish there were words to really express
what a tragedy his death is,
and the deaths of other Autistics,
other People with Disabilities.

There aren’t words.

Just as there aren’t words to express
what horror and tragedy
the Murder of Trayvon Martin
Who was Black, but not Autistic
or of Stephon Watts, who was black
and Autistic and scared, holding a
butter knife, or the murder of
Ernest Vassell last fall for
holding a toy gun while Black
and Autistic. (Or the arrests
of Neli Latson, and of his mother
for calling people on racism.)
This is what has been done to
Young Black Men in this country.
To Young Black PwD.

There aren’t words.

There aren’t words for
the horror of  baby Rylan
Rochester
, age 6 months,
whose mother thought he
might be Autistic after working
At a hospital serving Autistics
and so she smothered him.

There can’t be words.

There can’t be words for
The grief, anger, and fear
of living in a world where
Hate, fear, bigotry, and
complex social mythologies
Let people make excuses
for murder. Lets them empower
Blais after her sentance, or
air Latimer’s vitrol while
blocking dissenting comments.

All I can do is show you other words,
and hope they can be enough.

_____

In memory of George:

Kassiane at Radical Neurodivergence’s You keep killing us, and I am PISSED and The words said for George.

Autcast’s Why I No Longer Support the Autism Society of America

Lydia at Autistic Hoya’s Letter to the Parents of Autistic Children and Not human anymore – Is this what “ally” means?

Amanda at You Need A Cat’s Another murder. Please no.

Weird Law’s When perfection is deadly

Shannon Des Roches Rosa for BlogHer’s My Autistic Son’s Life: Not Less Valuable

Brenda at Mama Be Good’s Perpetuating the Stereotype: Autism, Parenting, & Murder

Other links of relevance:

Krip-Hop Nation’s Broken Bodies Pbp: Police Brutality & Profiling Mixtape and Where Is Hope? Documentary

In Memory of Stephon, Justice for Stephon Watts.

Not Dead Yet

Second Thoughts

Disability Rights Education and Defense Fund on Assisted Suicide

Please comment to add more links on these issues.

_____

March 30th and on, Vigils for People with Disabilities Murdered by Relatives and Caregivers are happening under the direction of ASAN. These are cross disability events. The current list of vigils is at the above link, and if you absolutely can’t find a way to get to a vigil in person, I’ll be hosting the virtual vigil via tiny chat for those who are in rural areas or are housebound. (After all we are people too, even when our disabilities keep us in our homes or we live in the country.) But please, try to get to or organize a vigil in person if at all possible!

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.

Restraining Wanderers- A Little History

[Trigger Warning: history and images of restraint and restraint related abuse. If you would like to view this post with the images redacted, please see the image-less version.]

Wanderers- people with Mental Health or Developmental Disabilities who “wander” off. The most common image of a wanderer is an older adult with dementia. I know that- before her health failed- my great grandmother ended up in a locked ward at a nursing home- the “wanderer’s ward.”

A little more relevantly, a number of Autistics are or were wanderers, myself included.

One afternoon when I was in 1st grade, a teacher’s aide called my mother to let her know that she had some concerns. I wasn’t making it into the class room- I would get off the bus and wander around the school yard, looking at all the little things that exist in yards on a warm fall day. If I *did* make it into the class I would end up wandering the halls when the teacher would send me to the speech room. This was in addition to other in class things, too. At this point, my mother demanded that they have an aide escort me from the bus to the class, and my “services” began. This was a year before Asperger’s would be added to the DSM IV.

The reason I bring this up now is because the CDC put in their recommendations for the ICD-9-CM (International Classification of Diseases, Ninth Revision, Clinical Modification; the US government’s official system of assigning codes to medical diagnoses and procedures). In this, they included a recommendation for a diagnostic code for “wandering” behaviors. (Here is the Complete PDF of the CDC’s recommendations.)

Here’s the problem- having it listed as a diagnosis/diagnostic code doesn’t add anything to the situation to make the constructive steps they outline happen. What it does is create an excuse or justification for things like restraints. Wandering behavior sure has in the past.

Image of a bed with slatted walls and a slatted lid, so that it is basically a wooden cage, on display in lobby of Peoria State Hospital. Sign above the crib reads, "Utica Crib, once hailed as a triumph of the human care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."n care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."

Cage on display in lobby of Peoria State Hospital. Sign above the cage reads, "Utica Crib, once hailed as a triumph of the human care of the mentally ill, a woman was confined to this crib for fourteen years in an Illinois institution. Twenty-six of these abominations were used in Illinois state hospitals. This kind of restraint was banned in 1905."

The Utica Crib was developed at the New York State Lunatic Asylum in the  19th century. It was based on a French design, but the Utica Crib incorporated the slats. It was used to keep people who might get up and wander around at night in bed. This would allow a smaller staff, or even enable another problem- having other patients do a percentage of the care work. This issue was more prominent at Developmental Centers, where those deemed as “higher-functioning” were enlisted as unpaid care-laborers.

An Image of two beds. In each bed is a male presenting person who has straps holding them down across the waist with further restraints binding the feet together and to the bed, as well as the hands.

Patients tied to bed with leather straps -- a medieval method still in general use. Photo by A. Stettner. 1947

Bed Straps were Used in a similar fashion. The patient would be tied to the bed, to limit movement and prevent wandering. In some cases, the individual might be strapped down in the daytime hours as well as at night.

A Young person with dark hair is tied to a wooden chair, a restraining jacket additionally used to restrain them.

from Christmas in Purgatory, 1974; original caption: "Perfected and modified according to circumstances, chains gave way (during the early nineteenth century) to a long series of other ingenuous contrivances, all designed to limit the patient's freedom of movement. According to Oegg, restraining devices were generally thought to be as necessary for the preservation of life as eating, drinking, etc." Emil Kraepelin

This is one of several images of individuals being tied to chairs or Benches from A Christmas In Purgatory, a famous Photo-essay/expose on the conditions of those with Developmental Disabilities in an institution from the early 70’s. (Here’s A child Bound to a bench with hands tied and a nude woman tied to a bench next to several other women.)

This was another method frequently used to restrict wandering behaviors. The patient was tied around the waist to a lead on a bench in a matter that would keep them from getting off the bench. in some cases, additional restraints were used. In the above photograph, the individual wears a restraining jacket, and propped up with a pillow- which would further restrict the amount of movement the lead would allow.

Restraints that further restrain movement can lead to a number of issues, including bed sores and staph (and in more recent times, MRSA) infections.

I researched the local Developmental center’s history when I was in high school, and it required firsthand sources. In interviewing several people who grew up in the surrounding community and spent time on the grounds (usually because a parent worked there), I heard a lot.

The more mild stories were of people with leads tied to outdoor benches, giving them a 5 foot range in which they could wander. Some of the more frightening ones involved peering in a door window as a small child, to see an individual tied to a chair, urine stains on their pants and pooling underneath. When my interviewee had asked what had happened, one of the staff members had replied that he kept “elopeing” and that he still had a couple of hours left in the chair. She remembered hearing him crying to be allowed to use the restroom. This would have been in the 1960s.

Reforms have happened in the recent past. But Abuses still happen, people are still restrained, and bed restraints of various sorts are still used on night time wanderers. Presenting a code for this behavior just adds one more thing to legitimize some very damaging approaches to people who have a long history of abuse.

It isn’t some distant fringe that advocates restraints. In researching this post, I cam across repeated examples of this. Modern versions of the Utica Bed, but now made with mesh and external zippers, marketed to parents of children who wander. In 2005, the FDA had to issue an alert on Vail Beds because of safety hazards.

Older Adults with dementia are put in “Gerichairs”- geriatric wheelchairs that bind the user to the chair, too often in a way that prevents the user from unbinding themselves. While they can be useful tools for those who need the physical support, when used as a restraint tool it can be dangerous. Bedsores and other infections are common remarks on the use of these chairs. (An FDA statement on improper use of geriatric equipment.)

These abuses are not only in our past. Pretending otherwise just endangers people. I strongly believe that the implementation of a wandering diagnostic code would only add a justification to a group of people who already invoke their own personal difficulties as reasons for abusive behavior.

(Please Sign ASAN’s petition against the Implementation of this abuse enabling code. You can read more about it at the above link.)

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)