Sunday, September 8, 2013

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

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
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

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

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, 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

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

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

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
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

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

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

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

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.

34 comments:

Janesprints said...

Brilliant. Sharing

me said...

powerful, brilliant.

Lucas Moore said...

Awesome. I like your post. Very good dear!!.


Regards,
Tahitian Noni Juice

Hawk said...

A friend of mine shared this on Facebook, and I clicked and took a look, and I was totally unprepared.

My writer's mind applauds your approach. I say this first because I'm still trying to process the emotions and the heart-wrenched thoughts that are now swirling through my awareness - the whirlwind in my head that says "you need to answer this" even though I don't know what to say.

I'll come back to that.

I think the whole "walk a mile in their shoes" thing, in regards to people who do monstrous, unspeakable things... I like to think that it stems from the notion that we should always try to look at situations from all sides. But monsters are monsters. Someone who kills their child, or attempts to, or harms a child, or allows a child to be harmed - I'm sorry, but I don't give a devil damn what that set of shoes look like. There are things in this world one does not do, and should never be condoned by so-called "civilized" peoples.

Going back to sorting my reaction... I always feel a profound inadequacy when I hear or read about survivors, of abuse and other forms of violence, people who have seen real hardship and real tragedy, people who have suffered. My life is relatively blessed; my home was always the place that I could go and take shelter. My hardships... to me they were difficult. Others might wonder what the big deal is. So I don't know what to say. Pity would be an insult, and sympathy is dodgy-close to that. So what do I say?

I'm humbled. I'm moved, profoundly. Your story wasn't just shared and read but felt. You have my most sincere respect, not only for the things you've been through, but for the courage to shape it into words.

Thank you. Above all else, thank you.

Brenda Rothman (Mama Be Good) said...

((k)) I am so sorry you had to go through this and I will do everything I can to make sure my child and every other autistic child does not have to go through it.

You shouldn't have to share this over and over to get people to understand, but you are brave and vulnerable and courageous for doing so. ((hugs and hugs))

Elizabeth J. (Ibby) Grace said...

This needs to go viral.

Deanna said...

Thank you, THANK YOU for laying this all out.

Tracy Luker said...

Beautiful approach and well written!

Wendy said...

This is a beautifully written post, even if the content made me cry for how terribly you were treated. I can tell you are an amazing person, and deserved so much more.

Chase said...

Thank you for sharing this. I am so sorry.

Renee' said...

I hear you!

You've touched my heart!

Renee' said...

I hear you!

You've touched my heart!

Unknown said...

Profoundly affected by reading this. Beautiful writing about horrible things.

Rachel Lacy said...

I wholeheartedly agree. The emotions i felt do not even compare to anything else. I am deeply saddened and hurt that a child has to even have that life. I love my autistic son. He me the true meaning of love and patience every day. He is patient with me as strive to understand him and get to know him. I am truly,truly sorry you didn't learn love and loyalty from your mother. That sucks!

Rachel Lacy said...

I wholeheartedly agree. The emotions i felt do not even compare to anything else. I am deeply saddened and hurt that a child has to even have that life. I love my autistic son. He me the true meaning of love and patience every day. He is patient with me as strive to understand him and get to know him. I am truly,truly sorry you didn't learn love and loyalty from your mother. That sucks!

Jeanne Medina said...

You are my brand new writing hero. I'm sharing your post as widely as I can, because the world needs to hear your story NOW!

nintendolegogamer25 said...

You are amazing and you are a hero and you are a survivor and I am a writer myself and frankly I am pretty good but I have never written anything this honest.My son is an aspie who recently threw a pen at a kid who was intentionally humiliating him and I made sure the school understood WHY he threw that pen and That I would have thrown that pen too. I wish you could have had a mom who was on your side...her loss because you are amazing! You are not my child but I am so PROUD of you...keep being you, you rock!!!

nintendolegogamer25 said...

You are amazing and you are a hero and you are a survivor and I am a writer myself and frankly I am pretty good but I have never written anything this honest.My son is an aspie who recently threw a pen at a kid who was intentionally humiliating him and I made sure the school understood WHY he threw that pen and That I would have thrown that pen too. I wish you could have had a mom who was on your side...her loss because you are amazing! You are not my child but I am so PROUD of you...keep being you, you rock!!!

Melody said...

My heart aches for you and for all children who can relate to your story. I'm appalled that you have been mistreated for so long. I'm so sorry you didn't have a safe and happy childhood like you and every child, autistic or not, deserves. I want to do more to help you and others who experience this everyday. For now I'll share your story and follow you.

Mandy Johnson said...

Your words speak.. they speak loudly, of pain and suffering, but also of bravery, strength, and the compassion you feel for others, even when you haven't been treated with compassion. Your words have brought me to tears. They speak of the strength of a survivor. I have a few children in my life impacted by autism, one who also suffers from a seizure disorder. And I can honestly say, your words have shown me that I need to slow down and remember he can't always tell me what is bothering him, I also need to watch and let him show me. Thank you for sharing this snapshot of your pain and grief, of the challenges you have faced. I hope that your words help empower more advocates for autism. Thank you for being you.

Mandy Johnson said...

Your words speak.. they speak loudly, of pain and suffering, but also of bravery, strength, and the compassion you feel for others, even when you haven't been treated with compassion. Your words have brought me to tears. They speak of the strength of a survivor. I have a few children in my life impacted by autism, one who also suffers from a seizure disorder. And I can honestly say, your words have shown me that I need to slow down and remember he can't always tell me what is bothering him, I also need to watch and let him show me. Thank you for sharing this snapshot of your pain and grief, of the challenges you have faced. I hope that your words help empower more advocates for autism. Thank you for being you.

Mandy Johnson said...

Your words speak.. they speak loudly, of pain and suffering, but also of bravery, strength, and the compassion you feel for others, even when you haven't been treated with compassion. Your words have brought me to tears. They speak of the strength of a survivor. I have a few children in my life impacted by autism, one who also suffers from a seizure disorder. And I can honestly say, your words have shown me that I need to slow down and remember he can't always tell me what is bothering him, I also need to watch and let him show me. Thank you for sharing this snapshot of your pain and grief, of the challenges you have faced. I hope that your words help empower more advocates for autism. Thank you for being you.

Forgotten said...

There is no amount of words in the world for me to tell you how amazing you are. I was bullied all throughout school until I befriended the scariest guy in the school. No one touched me any longer after that. He knew I was different and he stood up for me anyways.

I wish you had found someone to protect you when you were young. I wish you had never had any of those things happen to you. I know nothing I say can help any of that. Just know that I'm here. I'm listening. I want to help.

althegrrl said...

Thank you.

althegrrl said...

Thank you.

Meriah said...

Powerful. Thank you.

Jan said...

Wow! Thank you so much for taking the time to write this. My eyes welled up with tears and I immediately had the urge to invite you into my home and shower love on you. :)

My son is 4 and has been diagnosed with autism. I often wonder what the days ahead will look like for him. My biggest fear is school. People can be so cruel and I unfortunately do not have control over them.

I thoroughly appreciate being able to read from someone who wears similar shoes as my son, who understands what he is thinking and "gets" him. I often find myself desperate to understand what is ailing him, for him to find the words to explain it to me. Thank you for opening my eyes and for reminding me that my job is to just love on him, encourage him to pursue his passion, and advocate for him.

From the bottom of my heart, thank you. Thank you for sharing the raw of story. No person should ever have to live through that. I am so thankful you are telling your story. It needs to be heard. Thank you!

adair said...

Your writing helps me see who I am. Thank you.

suburpcomix said...

The pain. Thank you for sharing.
Much love. Thank you for fighting x

Shaye Bomar said...

You said it perfectly. I know those shoes. I have almost the same worn pair, and I do hope you are around people that love and respect you now. That, in and of itself, is a hard fight to win and it shouldn't be.

I told my mother once: family loves you, and relatives are relative. She, of course, laughed. I thought it was pitiful. The bastards. I do hope there is karma. But I think you are great. ---from an aspie.

Ettina Kitten said...

I think we should walk in both shoes, personally. I feel sympathy for parents who can't cope with their child's disabilities, or who can't cope with parenting period. But I feel even more sympathy for their children.

Cara Elizabeth said...

I know this is late, but since K hasn't seen fit to address it, I will:

there is no sympathy for parents who murder. None. Ever.

If you have some, get help.

Neurodivergent K said...

I don't even know how that got through, because...yeah I have no sympathy for people who murder their kids.

I have sympathy for their situations when they're struggling, I know that people truly struggle. But once you cross that line, I have none. I can't. I don't have sympathy for anyone who kills someone defenseless, & it being someone dependent on you makes my heart harder, not softer.

Robert Brandt said...

I am near speechless. But I shared on Facebook (to a friend's timeline and also to my own timeline), Twitter and G+. I'll be back to your blog.