Monday, September 16, 2013

It happened again.

This time, the mother succeeded at killing her kids. The suicide attempt, however, did not succeed.
We need to start prosecuting, sentencing these as hate crimes. We need to realize that not only are they hate crimes, they are copycat hate crimes. No, really. They are.
Washington Post
ABC News
Daily Mail (they actually say Jaelen, the boy, was autistic, stay away from the comments.)
ABC Local

So writing what we wish we could tell Jaelen, outrage, explanations of why this should be considered a hate crime? Writing isn't enough, I know, but yes, we're taking it here.

Wednesday, September 11, 2013

It's Not OK

This is an anonymous post.

In the wake of the attempted murder of Issy Stapleton at the hands of her mother, Kelli (who tried to commit suicide at the same time), there have been a number of autism parent bloggers writing pieces that highlight how the lack of services drove the mother to the edge while pushing the horror that happened to Issy to the background.  As usual (because this is not the first time a parent has tried to murder or has actually murdered their autistic child), a line has been drawn in the sand.  On one side are those who unequivocally and rightfully condemn the mother.  On the other side are those who sympathize or empathize with the mother and/or insist on talking about the lack of services available to autistics and families.  There are some bloggers who have tried to find a middle ground, to straddle the line by condemning the attempted murder of Issy while insisting on talking about mental health, services, and the edge her mother must have been pushed over.  It is my very strong opinion that it is not okay to do this right now, that you cannot straddle this line, and that there is no middle ground when it comes to murder or attempted murder.

“But we have to talk about it”.  NO.  No you don’t, not right now.  It is not even remotely appropriate to empathize with the mother or to use this or any other tragedy as a soap box to talk about services so soon after it happened.  It is disrespectful to do so, dismissive even.  It feels like a huge betrayal.  Just… no.
“But we want to prevent this from happening again”.  Then stop making this about the mother, stop making her out to be a person to feel sorry for.  It does nothing but perpetuate the idea of ‘poor autism parents’.

In the wake of a tragic car accident caused by a person under the influence of drugs or alcohol, it’s really not ok to immediately talk about how alcoholism or drug addiction affects families, how the addict’s mental health is affected by their addiction, how society/the system is set up to make drugs and alcohol easy to get, or how badly insurance coverage for treatment sucks.   In the wake of a husband who murders his family and then kills himself (or attempts to), it is really not okay to immediately talk about how society puts pressure on men to be providers or else be labeled as failures, how family courts favor mothers, or how there is a social stigma that men who seek emotional/mental health help are weak.   In the wake of a mother who kills her non-autistic kid(s) we are outraged.  We don’t immediately sympathize with how hard motherhood is, we don’t talk about the financial, social, or emotional strain of raising kids, and if it is shown that the mother suffered from post-partum depression or psychosis, we don’t excuse her.  We don’t minimize the horror of other murders by empathizing with the murderer’s mental health issues or any other mitigating factors.  We don’t typically take any other instances of murder or attempted murder and so immediately use them as a platform for an agenda that casts the accused in a sympathetic light.  We don’t because it is wrong, the timing is wrong, it is extremely inappropriate and most people know it.  We don’t because people want and need time to be angry at the perpetrator, at the selfishness of it all, at how little sense it makes, and we know people should be able to be angry and grieve for the VICTIM without other people coming in and saying “oh, that poor responsible party, oh this awful lack of services, oh I can relate to that (urge to drive drunk/kill my girlfriend/leave this world and take my kids with me)”.  So why do people think it is okay to do it when there is autism involved?  The bottom line is – it’s not.  Using a tragic, selfish murder or attempted murder to draw attention to an issue or promote an agenda that sympathizes with an abuser/murderer while the tragedy is still so fresh is offensive and wrong.

I am the parent of an autistic child, and I know it is not always rainbows and roses; sometimes it has been a dark and lonely place.  I know parents of autistic kids that are much more challenging than mine, kids I love very much.  I know one child who can lash out violently.  I’ve seen their parents’ bruises; I’ve seen this child lash out.  I know these parents struggle, and I know these parents love their child dearly but worry about the future as their child grows and becomes stronger.  I know there is no easy answer for them, that any choice comes with pros and cons.  I also know that if either of these parents chose the path that Kelli Stapleton chose, they would get zero sympathy from me.   ZERO.   They’d get no more sympathy from me than drunk drivers who kill or hurt people get.  I would be devastated and angry, as I am now.  I would be furious about the selfishness that led to that choice, as I am now.  I would not be talking about lack of services or mental health or battle fatigue.  NO!  I would be too angry that someone I loved was dead or harmed at the hands of someone in a position of power and control.  I would be and am scared for my child, who is growing up in a world where people have empathy and sympathy for people that try to kill their own disabled kids, where disabled peoples’ lives seem less important than the lives of the people who care for them.  What happened to Issy is nothing less than devastating, and it is not okay to take this time of grieving and anger away from people by selfishly bringing controversy about the poor parent to the forefront and pushing the victim to the background.  It’s not okay to do that.  It’s just not. 

Morénike's Outrage

So many people have dug into their hearts and contributed phenomenal viewpoints to this justice flashblog.  Post after post, the authors convincingly and eloquently described the many reasons that it is beyond unacceptable to sympathize with the “parents” such as Kelli Stapleton and Dorothy Spourdalakis, who choose to harm or murder their autistic children (Issy Stapleton and Alex Spourdalakis).  These authors have addressed the matter so thoroughly that there’s little I can truly add that would be substantive on this topic.  Reading through the posts, I noted the various emotions that each author displayed.  Some were saddened, some were angry, and all were passionate, so I should have felt moved.  Except I wasn’t.

Because this entire flashblog shouldn’t have to exist in the first place.

I pride myself upon generally being able to channel my emotions into useful energy and into advocacy that gets real results.  But I’m not wearing that hat today.  Moreover, I typically hold in high esteem those who are able to work collaboratively with “outsiders” and inside personnel to facilitate paradigmatic change, especially under adversity.  Ordinarily, I also count myself among those able to.

But today?

Nope.  I can’t.  I just can’t.  It is nearly impossible…no, wait, it is completely impossible, for me to relate to or understand how people feel the need to justify the actions of individuals who willingly inflicted deliberate, irreversible pain upon their very own children.  As such, I cannot effectively craft a diplomatic, yet articulate counter-argument that would appeal to, and possibly persuade, those who hold those views.

Maybe tomorrow I will join hands…or raise a proud fist; I don’t know.  But today, my fingers are itching to do something else--something that’s not “politically correct” and certainly not going to win any friendships.

I’m here to throw stones.

Yup.  Throw stones, cast blame, criticize, call people out… all of the above.  And that’s it.  I’m not empathizing, I have no statistics to share, and I’m not offering any helpful resources or ideas (beyond this idea:  It’s not okay to kill your kid.)  Call me the flashblog’s weak link if necessary; I’ll own it.  Because no other course of action makes any sense to me right now other than to stand up and try to shout some common freakin’ sense into people.  And by PEOPLE, I mean autism parents.


What on EARTH is wrong with you, autism parents???  (And by YOU, I mean those of you clamoring for us to have some sympathy for Kelli, saying we shouldn’t judge until we’ve walked “in her shoes.”) What is wrong with you?  To even consider for a moment that murder is a viable solution to any difficulties you might be facing because your children have disabilities? WHAT IS WRONG WITH YOU?

You are nothing but a bunch of spoiled brats.  You disgust me.  (I stopped cursing more than a decade ago, so my language isn’t going to as colorful as it could be.  Lucky for you, too.)  It’s all about you; everything is all about you.  Not about your child, though you’d love for everyone to think otherwise.  Poor, poor you.  Your child doesn’t live up to your—not his/her own—expectations, but yours.  That darn autism just keeps getting in the way!  Why, oh why can’t your child be just like everyone else’s, right?  Your child is different, and different=bad, right?

So first you milk the situation for a few years to gain sympathy from others about how hard you have it and how much you’re suffering under the weight of this autism diagnosis that has “stolen” your child.  Post it online for the world to see to get some REAL attention, complete with detailed info about your child’s meltdowns, struggles, toileting troubles, seizures.  Don’t forget to use your child’s real name and several close-ups of his/her face.  If you’re really savvy, include some video footage too, because nothing spells comfort and support to a distressed child than to have his/her parents recording the moment rather than addressing it.

Fast-forward a few years.  The whole martyr role has gotten old, and you’re now bored with the whole autism thing.  Time to really step up trying to “fix” the kid.  Maybe through a starvation, oops, I mean elimination, diet, or maybe through chelation, a hyperbaric oxygen tank, chemical castration, bleach enemas…who knows.  Pick your poison.  No?  Not fond of any of those options?  Well, you can always pull a Dorothy or a Kelli and just go for the straightforward, violent approach.

Not you, you say?  You love your child? Of course you do.  “In spite” of the autism, right?  You love him/her, you just “hate” the autism.  And by the way, autism “doesn’t define” your child.  S/he “may have autism, but autism doesn’t have him/her.”  And if I don’t agree with you, it must totally be because my children are “SO much higher functioning” than your child is (insert cookie-cutter fecal smearing/aggressive/non-speaking anecdote to prove your point here).

All through this post I’ve said “you.”  But maybe I should I say “us,” because whether or not I like it and whether or not you like it, I am one of you.  Just like you, I have children on the autism spectrum.  Just like you, I face challenges meeting all of my children’s needs.  Just like you, I regularly encounter insensitive “professionals” and judgmental onlookers.  Just like you, I fight for my children to be treated as competent and whole individuals.  

But unlike many of you, I share my children’s diagnosis (or will in a few weeks, once I pay the remaining balance on my nearly $2,000 worth of diagnostic assessments to the psychologist who evaluated me for autism earlier this year).  So while my kids are not clones of me, and I can’t understand everything that they do/feel/think/say, I understand and can relate to the majority of it.  And what I can’t understand? I TRY.  Like any other parent, regardless of their neurology.  I do what I can to make it my business to learn how and what to do what is best for them, even if it isn’t always the easiest route for me.  Because that’s being a parent.

You aren’t Dorothy and you aren’t Kelli, you say.  So why am I so mad?  I am mad because every day you help to foster the development of future Dorothys and Kellis in the way that you, either by omission or commission, contribute to negative autism stereotyping.  That whole doom and gloom, fire and brimstone, autism=disaster/tragedy thing?  Very damaging—not just to those on the spectrum, but also to everyone.

And I am mad because inadvertently, you represent ME.  And parents like me, both autistic and non-autistic, who truly love and embrace our beautiful, unique, quirky, weird, awesome autistic kids.  Your hollow, negative voices drown out ours, and we are TIRED of you misrepresenting us.  We are tired of you recruiting scared, hurting parents who are searching for answers to your sick point of view and brainwashing them into thinking like you.  We are sick of you controlling the public perception of autism, and we are tired of the disparities we see nationwide regarding resources for those with autism diagnoses.

But most of all, we’re sick of the carnage you leave behind…the Alexs and the Issys of this world who had to pay the ultimate price.

It’s enough.  Grow the hell up, and once you do, open your eyes.  Open. Your. Eyes.  We can no longer afford your blindness.  I can’t, my children can’t, and your autistic children can’t either.

Justice for Alex.  Justice for Issy.  


Sunday, September 8, 2013

Radical Neurodivergence Speaking: Here, try on some of my shoes.

Yet another parent has tried to kill her child, so of course people are again coming out of the woodwork to demand those of us who say "down with that sort of thing" walk in her shoes. They seem unaware that we, too, have shoes. So this is an illustrated guide to most of the shoes I remember walking in. Please return them in good condition.

child's white two strap sandal

[Image description: child's white two strap sandal.]

This is very similar to the sandals I was wearing when it became clear I could read. I was about 2, in my grandparents' kitchen.

I could not speak yet, but I was reading. Catalogs and cookbooks mostly, these are what was at my level and had more words than pictures. I also distinctly remember pouring my juice on my lunch and being distressed that the juice wouldn't go back in the cup at this age.

white velcro kids shoes

[Image description: white velcro kids shoes.]

I had a pair of shoes like this around the time I was diagnosed. I also had a pair of Punky Brewster sneakers but what I really remember is kicking things with my white velcro shoes. And velcroing/unvelcroing over and over and over.

I was wearing similar shoes when I learned how to speak. My first words were "mommy go away in the car." And I put them on the wrong feet. And I was wearing them when my mom split my lip slapping my face because I didn't look her in the face. And I was wearing them when I realized that all boys look alike in Kindergarten. And when I found out that when you can't tell the teacher who is being mean, they're meaner, because they get away with it. And when I learned that kids will be nice for a week to get a movie and popcorn, but then they'll be mean again because the behavior chart has the weird kid's name on it, not the names of the people who are the Antecedent to the Behavior.

I was not wearing these or any other shoes during ABA sessions. Not after the first time. I had strong little legs even then.

white laceup child sneakers with pink trim
[Image Description: white laceup child sneakers with pink trim.]

These were my first tie shoes. I wore them to soccer practice. I wasn't good at soccer and only played in 1st grade. I was overwhelmed and afraid of the ball (I couldn't track it) and too much was going on. I regularly melted down when we played Monkey in the Middle; I wasn't very good and so the coach called me Monkey and I thought he was making fun of me (spoiler alert: he was. Adults make fun of children all teh time). So that was it for soccer.

I was also wearing these shoes in class when the teacher made fun of my handwriting. I don't think I qualify as dysgraphic but I certainly had poor fine motor skills. She'd call me up to the board to write phonics lessons on the board and then mock my handwriting. She didn't like that I was already reading at a high school level so she made fun of my writing. She even told my mother that she wouldn't let me read at my level until I had nice handwriting.

These were on my feet when I started noticing what felt like really intense in-body experiences. Not out of body, in body. Like I was stuffed somewhere up inside myself and my body was a mecha. It was very strange, depersonalization or derealization or something. It was also seizure activity, but I couldn't express it very clearly and so instead of aggressive treatment for epilepsy, I got aggressive treatment for "off task behavior".

And of course the bullying just ramped up and up.

forest green lace up suede shoes
[Image description: forest green lace up suede shoes.]

If we are looking at life as a series of shoes, these might be the ones that indicated my mother's good-parent choices were going down the tubes. She sent her Autistic, sensory defensive, already bullied to PTSD child to a 3 story school in green suede oxfords. It was the 90s.

So let's talk about the years I was at that school, yes? I have already talked ad nauseum about my mother, and all you folks want is for me to take her shoes for a ride, going to far as to defend her abusive behavior (which started when I was at the Green Shoes School). So go review my posts about my mother [editor links: here, here, and here], and then we're going to talk more about this shoe option.

In theory, I wore these shoes to a private school that sought to meet all my educational needs-those of an executive-functioning challenged, sensory challenged, socially interesting profoundly gifted child. This school was advertised as being very good for children like me.

In practice? I had no trouble whatsoever grasping the academic content. It was not a challenge. Getting the work done was because the attitude was still "if you're so damn smart just do it, god, what are you stupid or something?" I was wearing these shoes the first time someone called me "retard". It was at the Green Shoes School where I got locked in a locker as teachers watched-and got suspended for kicking my way out. It was at this school where I got pushed down stairs, locked into places, touched without permission, had my books stolen, had people cut out chunks of my hair (and get away with it, possibly because I have a shitton of hair or possibly because the teachers just did not care). It was at this school where the principal threw an ice bag at me after I got hit in the head in PE class. The PE teacher wouldn't let me get ice. I had a concussion. This was before I had dents in my skull. Shortly before, but before.

It was here that I stopped attending art class because it was hell. Sensory and social hell. It was here that I learned that you never, ever tell an adult or authority figure because when you do, they make your life even harder. It was here that I learned it is easier to hit back than it is to get help.

Where was my option to snap? Walk in my green shoes a while.

black suede lace up shoes
[Image Description: black suede lace up shoes.]

These black suede laceup oxfords are similar to the shoes I wore to high school. They started out all new and whole. My self concept was pretty trashed, however, and any family relationships were well on their way to the sewer too.

See, I got to ninth grade knowing I was smart enough to do anything academic, yet too stupid to actually do it. I got to ninth grade knowing it was my fault if anyone hurt me, even very badly, because I fluttered my hands or didn't look at their faces or didn't grasp that they were trying to be funny fast enough. I got to ninth grade knowing that everything is bullshit.

PE was hell. Not like middle school hell, where an incompetent fool allowed sixth graders to pick teams-always based on popularity, not actual ability. And even if it was ability that's still cruel. More in the change fast, run around in a loud bright echoey place just long enough to get really unregulated, change again. So what does an unregulated body do? It cries. Or mine does, given space to just cry and not have anyone in my space. So there was lots of PE crying, and trying to explain that it wasn't anything wrong, I just couldn't stop crying.

There were things wrong, but they weren't PE.

The bullying mostly tapered off in high school (you only need to scare one person who pulls your hair...), at least from fellow students. Teachers kept up with the "if you're so damn smart why are you so damn stupid?" and I stopped taking classes that were academically even a bit of a challenge-no one would help me get set up to do the work, so fine, I can pull a great GPA in classes that I can do actually in class.

I beat the valedictorian of the class above me for the highest grade in our Biology class. Yet I couldn't write a term paper on a word because no one would tell me the requirements. For not magically having this knowledge-and a printer that wasn't dot matrix-I was all sorts of stupid. Just ask my Freshman English teacher. And my mom was out of fucks to give, just telling me the same thing-that I was smart so figure it out.

These are the shoes I was wearing the first time my mother threw my head into a wall. I think. That might have actually been at Green Shoes School. I know I was wearing these when she started trying to start fights in earnest. Maybe once I hit 90 pounds she thought she'd get some sympathy? She was around 150 so I was still outweighed.

These are the shoes I was wearing when I had to jump out of the window to get to school in my sophomore year because my stepdad wouldn't move. The day my mom said she didn't care unless he was naked about to rape me, the day I knew she knew he already had.

These are the shoes I wore to holes. I walked through snow in them, walking home or to the gym to avoid home. I walked through rain in them. My feet got very wet and very cold in these shoes. These are the shoes I was frequently wearing at church where I had to pretend everything was pretty and lovely even though it wasn't.

green suede skater style shoe
[Image Description: green suede skater style shoe.]

OK so let me talk about these shoes. I actually had 2 pairs. And they weren't identical to these, but I could not find a pair of Surge-green late 90s Sketchers to use as an illustration so here we are. I had my pair, which were the color of that soda, Surge. Remember Surge? I do. I remember not understanding the big deal. And the other ones were blue. A sister and I were in the same shoe size for about five minutes and I got a second pair of sneakers out of the deal when she grew again.

I got a pass to wear sneakers to school in late high school because my ankles were always, always jacked up. I wore, therefore, really brightly colored sneakers to school. It's probably the worst thing I did as a kid. Being unable to do homework is actually not misbehavior, contrary to the opinion of everyone around me.

My shoe pass coincided with my mother being more and more physically abusive, my last name donor's wife being more and more emotionally abusive. I had a group of friends at this point, but what does that do if you're not sure you'll survive your drunk, unpredictable mother?

I was wearing these shoes when I was put on Adderall. I was wearing them when the side effects were so bad that my gymnastics coach made me promise to never take it again. I was wearing them when my mother tried to talk the doctor into jacking up the dose and then she stormed out when he asked if she was going to take them herself.

She was going to take them herself. But Autistic children drive their parents to drink, smoke, drugs, and murder, right? I should walk in her shoes.

These are the shoes I was wearing when I went to competitions. This isn't particularly relevant, except the day of a state meet in a year I could drive. My mother wanted me to go to church with them before the meet. I declined because everything always smelled like smoke, there is no getting smoke out of a leotard, there really isn't, and because I did not trust her to then take me to the meet on time. We always did have a different sense of what on time meant.

She told me that if I didn't go with them to church I couldn't come back.

I had prepared a bag for this weeks before, because I knew what she was like. I knew escape readiness needed to be a thing.

I dragged some blankets and the things I needed for the day through my house and back yard with my mother screaming obscenities, demanding for me to come back so she could beat me or burn me or whatever, as fast as I could go, in these shoes.

They took me rotating through houses as my mother tried to report me as missing and wandering and what have you after that, tried to get me committed and under guardianship. You can't commit someone you can't find, and it was clear, oh so very clear, that my mother meant me no good at all.

She told me I could never come back. And I didn't. These shoes took me out of there, but first they walked through all sorts of hell. Try them on?

light tan feet, the left one has a black ankle brace
[Image Description: light tan feet, the left one has a black ankle brace.]

These shoes took me into battle. They took me into battle the day my mother told me to come back and let her dent my skull again or never come back at all. I won state champion that day, and then cried on friends because I didn't know what to do. But these are my battle boots, my callouses and my ankle brace and now the screws in my ankle, and the order of things is do the job, then lose it.

Sometimes, before that day, it was a battle boots day-a competition. Sometimes I'd get there whole and fresh and unstressed, riding with a teammate or my sister or occasionally just my mom. Sometimes I'd be stressed, often from my mom. Sometimes I'd have already put a shoulder back in place that day, or my stepdad would have been forcefully throwing his seat into my knees the whole ride. Autistics are not the only people who "have aggressive behaviors", but when he did that it was acceptable. I don't know why. It was though. Should I walk in his shoes?

white sneakers
[Image Description: white sneakers.]

I think I had a couple pairs of these, only mine had laces. They walked with me from the homeless shelter to all sorts of places. Before that, they were on my feet when my last name donor's wife threw hot coffee all over the elf dress I had made myself. They were on my feet when I fled my last name donor's house because his wife just would not get out of my face and I hate, hate physically defending myself but just once flight was actually somewhat an option. I had to knock over a sibling who was twice my size, but he was on the stairs and had plenty of opportunity to move and was looking for fight. If I were not moving so fast, again, I could have died that night. Or been wrongfully put in a hospital or guardianship.

These shoes came with me when I was trying to get my med situation for epilepsy figured out. They took me in the car, on busses, on foot, to pharmacies and to the doctor, the very nice doctor who let me pay with writing instead of with money when I had no insurance. They took me to apply for Medicaid, when they told me I should get knocked up if I want insurance so badly. They took me to grocery stores where I'd get lost in the chaos.

They were my homeless shelter shoes. The shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night. 

One more time, with feeling: The homeless shelter was the only place I had ever lived where I knew I wasn't going to be attacked at night.

These were the shoes on my feet when I was very, very physically ill, when my mother told me to get a real job or die on the streets. That's the last time I ever spoke to her.

These were the shoes I had when, technically, I did die, for some definition of die. These are the shoes of the year of the seizure, a year I barely remember because frequent seizures don't let your brain move things from short term to long term memory.

These are the shoes I had when I found out "very physically ill" was adrenal insufficiency, and that it was actually quite surprising that I hadn't died from it yet. And these are the shoes I had when the year of the seizure ended.

These, too, were the shoes that eventually took me into the west, when I had to relearn how to walk. These are the shoes that took me to oh so many doctors who did not believe an orthopedist screwed up my ankle surgery. The first one who actually looked at it was appalled at exactly how messed up my ankle was, but Autistic people don't understand pain, you see, or how things work, so I could have been making it up.

My left shoe wore out ages faster than my right one because I didn't walk with my right foot for nearly a year. For a while I was living on a rice cake and peanut butter a day, nothing else, because I could not get to the store and bring things home. The Spokane Autism Society kept me from starving to death. They were the first autism organization that I met that did actually helpful direct action for an autistic person. I was 25 and they were the first.

How are these looking for you?

yellow rock climbing shoes
[Image Description: yellow rock climbing shoes.]

Or maybe you'd like these. These are my rock climbing shoes. I was wearing these when a teacher told me, straight up, that he refuses to teach autistic students, that I cannot appreciate the risk inherent in rock climbing, perhaps yoga would be more my speed. This teacher broke all sorts of privacy laws, and the school didn't care, because I am Autistic.

blue sparkly converse style sneakers
[Image Description: blue sparkly converse style sneakers.]

Are these more to your liking? These are the ones I was wearing when, again and again, supposedly good people-you know they're good because they will tell you they're good-assaulted me with flash cameras. Walk in their shoes! They want a picture! A flash picture! The ADA doesn't really exist.

I was completely confused and disoriented, not quite sure of my address, more than once because of this. These folks claimed again and again that they'd make access a thing and instead recruited a professional photographer to do their flashy dirty work. Portland Lindy Society, fuck yeah.

Should I walk in their shoes? Is the epilepsy and the autism contagious from dancing with me? I'm actually a good dancer. Take a spin in these shoes.

lime green converse style sneakers
[Image Description: lime green converse style sneakers.]

Or try these. They're the shoes I wore to mourn at the ASAN Vigils both years now. I was wearing them when I heard about Alex Spourdalaikis. I have explained ableism in these shoes. The last time I was called "retard" to my face, I was wearing these shoes. It still hurts, just so you know. One of the many times a parent told me, to my face, that she'd have understood if my mother killed me, I was wearing these shoes.

That was at school.

The disability services people nearby shrugged and asked what I wanted them to do about it.

I want, just once, for the people who are supposed to be on our side to be on our side. That's all.

dingy grey sandals with pink trim. One has its unevenly worn sole showing
[Image Description: dingy grey sandals with pink trim. One has its unevenly worn sole showing.]

Or these. These are the ones I wear in the summer. These are the shoes I was wearing when I heard about Issy Stapleton.  These are the shoes I have been wearing to get shit done, because it doesn't stop needing doing just because the world sucks, while people are defending the attempted murder of Issy Stapleton.

These are the shoes I wear to go help other Autistic people because folks are too busy yelling about services for parents to see that we're being shoved into the cracks to rot. These are the shoes I wear to go do things so my mind doesn't crack under the hopelessness of it all, sometimes. These shoes are falling apart at the seams, but they're mine.

Maybe you should take them for a spin.

Saturday, September 7, 2013

Raising Rebel Souls: Issy Stapleton

Reprinted from Raising Rebel Souls with permission.

Issy Stapleton

Say her name until she becomes real.
Say her name until you feel.
Say her name until it is true.
Say her name until murder bothers you.
Say Issy's name.

Spit that murdering mother's name out.

You don't get to kill your child.
You don't get to kill your child.
You don't get to sacrifice your child's life to demonstrate your pain.
You don't get to expose her hardest moments for your personal gain.
You don't get to kill your Autistic child.

Issy Stapleton.

Say her name.
Type her name.
Write her name.
Fight for her name.
Say Issy's name.

Stay strong, Issy.
Live long, Issy.
Carry on, Issy.
Love, Issy.

Issy Stapleton.

Shaping Clay: Bodies and Behaviors

Reprinted from Shaping Clay with permission

Defiant is being pre-empted this week. I apologize to my regular readers for doing this, but the attempted murder of Issy Stapleton is local news for me, and I can not stand by and let this incident pass without comment.

Issy Stapleton's mother went to college just a couple of blocks from where I went to college. Her alma mater has done a staged reading of one of my plays. The Great Lakes Center for Autism Treatment and Research is near where I still live. It, along with several other behavior-based autism treatment locations, are practically in my backyard.

I sit here quietly, writing about my independence on the internet while the shadows of therapists who believe that my difficulties are behaviors pass by my window. Any one of them would probably recommend me for a 48 hour hold if they witnessed me during the darkest parts of my year. They would probably want me in a long-term residential program if they knew about the darkest parts of my life.

Our bodies are not our own, and because of that, neither are our lives. We are written about as burdens. When we are at our most vulnerable and our least able to consent, our parents share the details of our medical histories online. Sometimes they include pictures. I linked to proof of this when
 I talked about Alex Spourdalakis. I will not link to it now. Issy Stapleton's mother does not need the extra traffic to her blog.

Issy was home for less than a week after she was inpatient at the Great Lakes Center for Autism Treatment and Research. The facility itself would have called her a resident. I will not. Residence implies home. It implies that she had a space to make her own. Neither of those things happen when other people are determining every aspect of your life, from your food to your daily activities to which modes of self-expression are "appropriate" for you to display.

I do not know which of these things the Center monitors and attempts to change. That is not important. What is important is that, whether I agree with their methods or not, they only worked with Issy for a few months. Then she got to go back to her parents' home. She was there for less than a week before her mother tried to kill her.

Even if we were burdens, how much could we derail your lives in less than a week?

I have a partner who has been bedridden for months at a time. Who has survived a brain surgery and prolonged status epilepticus. Who has become temporarily paralyzed on her left side and needed me to move her up and down stairs, into the car, on and off the toilet.

She is not a burden. Occasionally, caring for her has put me under stress. Once or twice, it has led to me taking less work than I would like and scrambling to make ends meet.

I love her. This is what I do.

When I have my problems and my bad times, she does things for me that I can not do for myself.

Neither of us has ever considered killing the other one. Both of us have been dealing with each other's ups and downs for years.

Issy Stapleton was home for less than a week.

Already, there are local supporters here in Kalamazoo rallying by her to try to get the charges dropped. They are saying that she deserves compassion for trying to kill her daughter. They are saying that it must be so awful to be a parent to people like us that recourse to murder should be excusable. They are pointing to the fact that she tried to kill herself as proof that she did not know what she was doing.

That she tried to kill herself is the ultimate proof that she knew what she was doing. If she had died, then she would have successfully avoided taking responsibility for what she was doing.

What she was doing was attempting to murder her daughter for not being easy to raise. Now I'm going to tell you about what it's like, being easy to raise. Specifically, what it's like when you're being easy to raise and you are autistic.

To the best of my knowledge, I was not diagnosed as a child. I do not know for sure, and I have suspicions I will not give a public voice to because the things I have heard are vague and far-off noises. What I do know is that there was no mistaking the differences between my behavior and the behavior of other kids. I have memories going as far back as when I was six years old. These memories are of my parents openly commenting on how unusual it was that I could find hours of entertainment in the sorting and re-sorting of sticks or baseball cards.

I also have memories of my parents praising me for being easy. My mom was a teenage mother, and she had two children before she was twenty-one years old. I can remember being left in the family station wagon while she went grocery shopping and being told to sit still. The car would get very hot, and sometimes she would be gone for so long that all of the other cars that I could see would leave and be replaced with new cars before she came back. My little brother would act out and hit me or blow his nose on the upholstery. When he got older, he would leave the car even though we weren't supposed to.

Sometimes, she would park the car and the clock would say ten. When she came back and restarted it, the clock might say eleven. Sometimes it said twelve. More than once it said one.

I staid in my seat. I was easy. She praised me for it, and made me understand that what I was doing was exactly what all good children did.

I wouldn't do that to my dog, now. Then, I smiled and thanked her. Sometimes she brought me a big piece of Colby cheese from the deli, to show how happy she was. It felt good to make my mother's life easy. The praise and the reward helped me to understand the rules, and living by the rules kept my life easy.

Sometimes, people who don't understand autism think that following rules that I've learned is a symptom. It's not. Left to my own devices, I will wallow in chaos and act out according to whatever impulses I have. I will create art. The rules are not symptoms, they are coping devices. They allow me to remain easy.

Easy in the way the Issy Stapleton was not. And we can see now how that turned out.

I was not always easy, either. The times that I was not easy helped to emphasize the importance of the times that I was.

I can remember being very hungry once when I was five. We were having pizza for dinner, and I was excited because it was Tombstone pizza and I did not know that Tombstone pizza was very cheap. I just knew that it was not Tony's pizza and that there were commercials with cowboys in them, which made me excited to have Tombstone pizza. By the time it was ready to eat, the smell was making me twitchy and the fact that we were having fast food meant that I had not gotten my afternoon snack that day because it was not healthy to snack and to eat fast food both.

When I got my slice of pizza, I was told that I could eat it in front of the television. So I did. I set my plate down on the edge of the coffee table, and I went to town, picking off the pepperonis first to savor them apart from the pizza. As I was finishing the last slice of pepperoni, my father came downstairs with his pizza. When he saw me eating, he yelled at me that I knew better than to eat before we prayed because we never ate before we prayed.

He did not believe me when I said that I forgot, because I never forgot. I cried. He sent me to my room. Remember that I was five.

After a long time, my father came up to my room. He was not angry any more when he came up to my room. He explained to me that I was so good at following the rules that I was almost a perfect child. I had a better memory at five than anyone else in our family. I already knew how to read, and he was very proud that I chose to read the Bible cover-to-cover instead of reading kids' books. He apologized for yelling at me, and he told me that it was because I was so nearly perfect that it was hard for him to deal with me when I made mistakes.

He told me that my excellence made him less tolerant when I failed because it was so unexpected, and that I had to understand that because people get used to things staying the way they are. Then he let me eat the rest of my pizza. But first, he made me lead the family in a prayer even though the rest of the family had already eaten and my pizza was already cold.

I did not receive behavior modification therapies from a trained specialist when I was growing up, but it would not be accurate to say that I did not receive behavior modification.

I learned how desirable it was to be easy. I learned the consequences when I was not.

I'm a cryptorchid, which means that I had an undescended testicle. I was very young when they wanted to operate on it. I made sure to be easy. I'm glad they operated, because I have learned as an adult that cyptorchids have a higher rate of testicular cancer in the undescended testicle than the rest of the population has. For years after that operation, though, I was expected to present my genitals for inspection whenever I went to the doctor's office.

I made sure to be easy, even when I did not feel like taking my pants off. Even when we were seeing a new doctor for the first time and it was not the doctor that did my surgery. Even when the doctor was a lady and I felt funny about it. Being easy was the rule.

When I was in fourth grade, my mother was hospitalized. It took seven weeks for them to find a medication for her and send her home. Even though she tried very hard to get better, she had repeated psychological disturbances that led her to tell me stories about how my friends had been murdered. Most of the time, this was her way of trying to teach me moral lessons.

For example, there was a little girl that lived behind us when I was in first grade. Her family moved down south after the school year ended. When my mother needed to teach me about peer pressure, she told me that that girl was babysitting for a family and her friends wanted to come over and party. My mother told me that she let her friends into the house where she was babysitting, but they brought drugs and alcohol. She told me that when my friend Brenda tried to tell them that they could not drink and smoke because she was babysitting, that her friends tied her to a chair and shot her in the head with a pistol that belonged to the family that lived there.

That was supposed to be my lesson about peer pressure.

She also told me a story about a girl who was invited to a slumber party. She wasn't very popular, but she was very pretty. My mother told me that the other girls at the slumber party threw blankets over her and then beat her with a tire iron. That they put the girl in the trunk of the car and drove around with her all night, stopping only to open the trunk and beat her again. She told me that around dawn, then drove into a field and pulled the girl out of the trunk and covered her and the blankets with gasoline before lighting them on fire. She told me the girl's last word was "Mama."

That was supposed to be my lesson about trusting people I did not know well.

By the time I was twelve, these rules were pretty well established, at least for me. My mother could break her end of them whenever she wished because she was the mother and I would understand when I was older. My father's only rules were about making him comfortable, so he could not fail to hold up his end of those.

Between my mother's parables and the times I was banished to my room, I knew why it was important to be easy. It was important to be easy because if I was not, then I got locked up and I ate my food cold and they came to lecture me about how much better things would go if I was easier.

When I was twelve and my mother insisted that she had to check on my genitals because I was going into puberty, I did not dare to tell her no even though she was not a doctor. Her hands felt disgusting, and I could not look at anything while she did it so I read the titles on my bookshelf. Later, I took a bunch of books to the used book store and got new ones.

After that, I decided that it had become too big a burden for me to be easy, so I stopped. Unfortunately, one of the rules I had learned was that my father would beat the shit out of anyone who laid hands on a woman. My mother knew this, and she started physically putting herself between me and the door when I tried to leave the house during one of our fights. Sometimes, she used this knowledge to herd me.

I got good at running out of the house before she could get herself in a position to block my path. She got good at using a tone of voice that made me stop moving because I would panic.

One day, she used that tone of voice to command me not to go out the front door. Instead, I ran up to my room and jumped head first out the window. I was following the rules--the window was not the door. I was being easy, but I was also doing what I needed to do to be apart from her.

We should not thank people who want to train us to be easy. Nor should we have compassion for people who feel despair when we are not. People who emphasize the need to change our behavior in order to make themselves more comfortable are not helping us, they are abusing us. When they feel despair at our resistance, the outside world should be on our side cheering us on.

Instead, they rally to show compassion for the people who would murder us, or who would lie and tell us that our friends were murdered when they want to make a point.

If autistic people were citizens fighting against a government that was so authoritarian that it jailed citizens for having negative facial expressions, then our media would write about how important it is to protect democracy and to set international standards of conduct by bombing our government out of existence and then letting us set up a new one in the rubble. The fact that we are fighting against parents who want the very same thing should not make the press less resolute in their support for us, but it does.

We are trapped by our bodies and our behaviors. Not because either one is causing us problems, but because other people do not understand either one, and they blame us for their own understanding. 
When our headbanging is viewed as defiance but our caregivers have neglected us so badly that they have not detected our months-old head lice, we are being tyrranized, and the people who have convinced our parents to view our behavior as an intelligent defiance while simultaneously arguing that we need not give consent to their "treatments" because we are not competent are criminals.

Our "condition", if that is the word we must use, is a condition that affects the way our senses give our brain information. Any communication problems we have are because of the differences between the sensory input we receive and the expectation other people have that our sensory environment is the same as theirs. We are not trapped. We are not isolated. At least, not any more than any blind or deaf person is trapped or isolated.

How horrible would it be if parents of blind children corrected their defiant refusal to see by locking them in rooms and taking away their privileges, or by subjecting them to repetitive and uncomfortable training sessions? The answer is: it is exactly as horrible as when parents of autistic children do it.

How horrible would it be if parents of deaf children killed their children and themselves because the children's refusal to learn to hear put an undue burden on the rest of the family? The answer is: it is exactly as horrible as when parents of autistic children do it.

Every day, misguided parents of autistic children (and their therapist enablers) attempt to cure us with behavioral "therapies" that are illegal when they are used to try to force children not to be homosexual, but that are somehow perfectly sensible when the children they are used against are guilty of nothing other than having brains that are wired differently. (Wait... but...)

The children are not the burdens in these situations. The children are the ones carrying the burdens.

Do not sympathize with our abusers. Do not rally for them to be released from prosecution when they commit crimes. Do not excuse our murders with hand-waving and mumbling about tragedies and who we could have been if only.

If you do that, you are one of them. You are tyrranizing us. You are treating us as less than human. More and more of us are growing up, surviving, and seeing you for what you are. And we are coming for you. We are not going to tolerate this state of affairs any more. We are taking back our bodies, and we are not interested in putting up with your behavior problems anymore.

Issy Stapleton is one of us. We will not let you free her would-be murderer without a fight. We love her too much for that.

No Guile: Not one of us!

Reprinted from No Guile with permission.

I'm warning you this is not going to be pretty. I'm pretty sure it is going to piss people off but maybe that is good. Right now I am angry. Angry at the person , angry at the autism community, angry at pretty much anyone.

It happened again. Last night it came out that a blogger attempted to murder her child and take her own life. Now i you remember a few months ago wen Alex was killed everyone was angry with his mother. Angry that she didn't do something anything else. Well not this time. The blogging community is rallying around his mom. Saying she was the strongest of us, she was a great mother' a fallen warrior. Basically she is not getting outrage and let her rot in jail she is getting poor her. It was so hard. Well you know what that is not a excuse. Nothing can be said to make me accept what what she did as OK. What about Issy?

The cry is we need services, we need this and we can stop this. Yeah sure we need services but to stop the murders we need to stop making it OK. We need to stop making the murders martyr. What about Issy?

Luckily last night she was not successful though her daughter has been left with permanent bran damage from this. Everyone keeps saying she snapped. But the method she used is not one of someone who snapped. It took planning. It took intent. She didn't just go I can't do this and drive off a cliff. She drove to a secluded area where they wouldn't be found easily and lit two grills in her van. Now how did the grills get there? How did they get lit? CO2 poisoning is not quick it takes time. What is it about this one that mom is being raised to martyr status. Still there is very little outrage . The facts are only coming out now more info will come out in her trial.

Is the lack of outrage because she is a known blogger? People feel like they know her. Guess what it's online. We only share online what we want people to know and see. You don't know what was going on in real life. Only what she chose to share. What about Issy?

The whole lack of services line. Really give me a break. In her own blog she stated they were approved and had found a provider for one on one in home care. Sure the school was being a jerk but hey that happens to all of us. There was another that welcomed her daughter in. Sure it wasn't ideal and meant that mom was gong to have to move away from other kids for a bit. It wasn't permanent just while they got things sorted with the other school. Or that was my take on it. So once again we have a case where it was not lack of services it was the parent did not want what was offered. Sometimes we need to take what we can get while we make our case for more. What about Issy?

I am really tired of every time a special needs person is killed everyone feels bad for the murderer. Well not me. In my opinion blogger or not she is right up there with Alex's mother and should see the full punishment of the law. She is not one of us. The majority of us would never kill our child and if you think it could be you, you need to talk to someone because that is not right.

Here's the thing no one is talking about Issy they are talking about mom. I wont print her name because just as with Alex it is Issy that deserves the talk.

If you purposely kill your child you are wrong and you are a bad parent the end!