Monday, April 25, 2016

High School Gym Class With a Side of Ableism

When I was in school, there wasn't a class I liked less than gym.  It seemed that the deck was always stacked against me.  Once high school started, though, I found a couple of areas where I excelled, and was able to keep up at or above the level of the other kids:  the static arm hang as a freshman, and weight training as a sophomore.

[Image is: Me, sitting on my couch at home, beside my crutches.]

Another unexpected area where I excelled was the rock-climbing unit.  Students were harnessed and belayed for from below, as we navigated up a climbing wall in the school gym.  We could only go up two at a time, so the unit was a lot of waiting.  When it was finally my turn, I began making my way up the wall.

Cerebral Palsy means that anything that anything physical involves a good deal of both pre planning and motor planning.  Having never climbed a wall before, I had no previous experience to serve as a map for just how to make my way up.  Luckily, I was being belayed for by a good friend.  She was petite, smart and studious.  We faced the woes of Chemistry class together and she made it bearable for me, making the mathematical side of things a bit more clear with her patience and thoroughness.

I remember being slightly concerned that day that my tiny friend might not be able to manage belaying me (I was small - but both muscular and spastic, which could complicate things - I wasn't sure.)  But she was a solid presence below me, and I felt safe with her in charge of making sure I didn't crash and burn spectacularly.

Near the bottom, things were okay.  I could find hand and footholds fairly easily.  But as I progressed higher, they became more spread out, and more difficult to find.  More than once, I found myself stranded in one place, because I had no idea where to grab or step next.  I suspect my place blindness had a bit to do with this, because a usual (general) command like "reach up, or "step over" was not clear enough for me.  But my friend, it turned out, was more than book-smart.

"There's a spot right above your right hand," she'd say.  "Step with your left foot first, there's a foothold right there.  Now follow with your right foot.  Now you should be able to reach that spot with your right hand."

Somehow, an able-bodied student, a year below me, recognized my need for specific instructions with regard to motor planning, and patiently guided me.  It was a great feeling to be on par with the rest of the students in this regard.

Like them, I made it all the way to the top.

The scariest part for me, was letting go and rappelling down, but I did it.  I was so proud, and so was my friend.


The next time we rock climbed, my friend, for some reason, wasn't able to belay for me.  (Perhaps, because I was not able to belay for anyone,  My balance issues would not allow it.)  Anyway, on this day, my adaptive gym teacher belayed for me.

I was so excited to show her just what I'd accomplished last time.  I was strapped into the harness, as I was the previous time.  I said, "On belay,"

She said, "Belay on."

But my adaptive gym teacher did more than belay for me.  The moment I got stuck, unsure of where to next place my hands or feet, she used her position wrangling my harness to literally pull me to the next grip on the wall.

It was so frustrating.  So humiliating.  I didn't know if she just assumed I couldn't do it, or if there was a time crunch or what.  In any case, that was how my entire second climb went.  When I rappelled down to the gym floor and she congratulated me for "reaching the top" I couldn't look at her.

I remember finding my friend at the end of class and telling her what happened.  She looked confused and apologetic.  She didn't seem to grasp the depth of my frustration, after all, who wouldn't want a little help up the wall, right?

Well, me.

I didn't want help.

Not that kind of help.

Because I'd already proven that I could do it.  And because my 15-year-old friend treated me with more respect, so why couldn't I expect the same courtesy from a full grown adult who had been trained to do this job?


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Sunday, April 24, 2016

Review: Jack of the Red Hearts

[Image is: a Jack of Hearts playing card]


Once upon a time, Jack of the Red Hearts was just the type of movie I would have LOVED to see.  Back when I was majoring in Special Education in college, and didn't know that what I was being taught as gospel (ABA, and repetition of babyish tasks and use of short sentences when working with autistic kids) was, in fact, apocryphal.

I saw a brief commercial for Jack of the Red Hearts on Friday, while watching Grey's Anatomy on Lifetime.  This brief glimpse was enough to raise several red flags about the movie's content.  However, having been a fan of the largely authentic job AnnaSophia Robb did portraying Bethany Hamilton in the movie Soul Surfer, I was hoping to find something redeeming in the movie, even if only that AnnaSophia Robb was in it.

I was so, so mistaken.

I'm going to use these Common Inspiration Porn Themes to assist in pointing out what I found harmful in Jack of the Red Hearts:

1. Participation Trophies

Glory, who is eleven years old, and autistic was never made out to be more special than her neurotypical peers.  (Not that I could see, anyway.  If I missed a reference to this, any autistic friends are welcome to comment and let me know.)

So, we're off to a good start.

2. Able-Bodied / Neurotypical Heroes

Jack of the Red Hearts was rife with neurotypical heroes.  Jack, Glory's companion, first and foremost.

This is beyond disturbing because of the way Jack treats Glory.  There are copious references to The Miracle Worker, with a couple of scenes taken directly from the original source material with very little changed.  Though the screenwriter apparently wanted to draw a parallel between Jack and Annie Sullivan ("It was that story I was trying to tell - the story of an unlikely hero -someone who didn't even consider herself qualified- being able to make a difference...") it's impossible for me not to think there were not also inferred parallels between Glory and Helen Keller, who was portrayed as a wild child or an untamed animal.  Glory goes around the table asking for potatoes and eating them off everyone's plates, as the family carries on as if nothing is amiss.  The finger is silently pointing at Glory, making out her behavior to be that of a disturbed child, rather than a result of what her parents tolerated.

When Glory arrives at Jack's place at the table, she tries to take Jack's potatoes, but Jack won't allow it.  Glory pinches Jack, and Jack pinches Glory back.  While Glory's mom is momentarily upset Jack is allowed to continue working with their daughter.  When Glory pinches Jack at school, Jack again retaliates, and when other adults at school see this, Jack shrugs and says, "It works."

Jack is allowed to keep her job, and later takes Glory on a personal errand, where she ties a belt around Glory's waist and then ties the belt to a gate.  She gives her a snack and tells her to "stay."  An eleven year old child is tied to a gate in public, treated like an animal, and no one is bothered by this?  Ironically, Jack's own injuries (scraped palms from pounding the pavement in frustration) are the only things commented upon by Glory's mother.  It was beyond abhorrent to see a child abused in this manner and to have this movie pass it off as a misstep in Jack's work with Glory.  Glory is a little girl, and vulnerable, at that.  How blatant abuse can be depicted on screen and yet we, the audience are still cued to feel sympathy for Jack's own personal plight instead of for the little girl she tied to a gate is beyond me.

3. People As Props

The screen writer has said in interviews that this was the story about how autism impacts families.  So, Glory really is just a means to an end.  The movie centers quite a bit on her but it isn't about Glory at all.  It's not about what she contributes.  It's not about what she gives.  Who she is.  It's just about her autism's effect on her family and Jack.

Glory's mom says Glory has an "exceptional personality."  But we see little of it.  Most of what Glory says and does is cued.  She spends much of the movie working on naming shapes, colors and animals.  I couldn't help but think about a couple of little autistic boys who spent years learning material far below their grade level because they could not prove they had absorbed the knowledge.  I have read about how damaging it was for them to consistently be treated like babies.

I can't help thinking, too, that the casting of a non-autistic girl as Glory only adds to the notion that the autistic character is an object.  While on the surface, the portrayal of autism seems authentic, many times Glory's facial expressions and manner made her seem like a spoiled brat, knowingly doing naughty things to get a reaction, rather than a child who struggled to feel and control her own body and/or speech.

4. Gawking Without Talking

Glory, essentially does not have a speaking part whatsoever in this film.  Even when her actions clearly communicate something, her requests are ignored unless she is able to verbalize them.

At the end of the film, when Jack has to leave, Glory approaches her, and extends one hand in front of her.  She does this again, and again, and again, using the rudimentary signs that Jack knew from training a dog (how's that for dehumanizing?) but Jack insists she "say it."

Except for telling Jack she wants her to "stay", Glory rarely is allowed to communicate.  She is handled roughly.  She is stopped from stimming.  She is told her nonverbal communication is not enough.

5. SuperParent

Clearly, Glory's parents, particularly her mom, are meant to be sympathetic.  We, the audience are supposed to see what they "put up with" regarding Glory's autism, and feel like they are amazing people.  I, for one, felt zero sympathy for them.

Glory's dad talks about how parenting Glory feels like they are coworkers "in a mental hospital."  Her mom drinks from a CURE AUTISM NOW mug, which drives home how much they view her autism as a problem to fix, and not an important part of what makes Glory who she is as a person, and impacts how she sees the world.  Her mom also tells Jack that Glory "can talk if she wants to...if she is motivated" which is so harmful because it ignores the brain/body disconnect that many autistics have said they experience.  Later, Glory's mom talks about how awful autism is while Glory is in the back seat of the car, listening to everything.

Jack seems to realize soon enough that Glory requires adaptive equipment (headphones and sunglasses among other things) to deal with sensory overload in public places.  Her parents, though not clueless about this aspect of her autism, are not prepared with these items when Glory needs them, and instead, it's left to Jack who just shows up by chance with them.

At the end of the movie, Glory has an interview at a school that seems to be heavily based on ABA therapy, which many autistics say is tantamount to child abuse.  Sending Glory to this school is shown to be the family's best option as they are all "tired" from taking care of Glory and they are losing Jack, as Glory's one-to-one.

There were a couple of instances where Glory's mom joined her in stimming.  (The first day of her new job, she came home happy and jumped up and down beside her daughter for a second.)  There was a second moment, too, where Mom, Jack and Glory are all jumping on the trampoline in the yard together.

However, this review is largely cautionary.  I remain deeply troubled by the number of people (especially parents with autistic children) who viewed this movie as positive media representation.

There is nothing positive about media that depicts and endorses harming autistic children.

For anyone wanting more insight into the autistic experience, please hear these autistic voices:

Fox at Fox Talks With Letters

Ryan at i am in my head.

Phillip at Faith, Hope and Love...With Autism


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Monday, April 18, 2016

Let's Talk About The Effects of Consistent Patronization

In the eighth grade, I wrote a poem, on a whim, and let a teacher read it.  I had watched a news broadcast the night before that had really resonated with me.  The poem was deeply personal.  At the end of the day, my English teacher caught up with me on the way to the bus.  He said the poem was so good, it should be in the school newspaper.

I panicked.

The minute I got home from school, I destroyed my single handwritten copy of the poem, crumpling the paper and ripping it into tiny shreds to bury at the bottom of my trash can.


Now, why did I do this?  My teacher read a piece of my writing and deemed it good enough not just for a passing compliment but for the school paper.  Why would I destroy it and throw it away?

To explain this, it's necessary to clarify something else: growing up as a disabled child, I experienced a lot of undue praise from people in authority: sometimes they were strangers, but sometimes they were my teachers, sometimes they were my family members.

I attended a public event.  I heard: "You have more of a right than anyone else to be here."

I walked in the house of a relative.  I heard: "Here she is, Miss America!"

I opened the door to my own classroom and a note came home with me:  "Tonia opened the door to the classroom ALL BY HERSELF."

Having experienced this kind of thing for the better part of thirteen years, at this point, the lines between a genuine compliment on my actual ability and one that gushed because I did common things had grown blurry.  So when a teacher praised my work legitimately, I panicked, because I didn't want something I had put my heart into to be read as the token inspirational piece in the Jackson Journal.


We are often told in society that we must not overindulge disabled children, lest they grow up feeling entitled to everything, making them spoiled brats.  Little is said, though, about the other end of that spectrum.  If we are consistently praised - consistently patronized - by people in authority from a young age, it confuses us, and not just through childhood and adolescence.  Even now, as an adult, I find myself wondering if true compliments are in fact authentic.

I automatically filter the compliment through, "Do they mean pretty for someone in a wheelchair?"  "Do they mean well-written for someone with CP?"  

I have been praised my whole life for doing mundane things: for existing in public.  For walking into a house.  For opening a door.  By hearing these things throughout my life, they have had a hugely detrimental impact on my self esteem.  Because it means that, from the time I was small, people expected nothing from me.

So what did it mean, then, when I graduated high school with High Honors?  What did it mean when I made the Dean's List my first semester in college?  What did it mean when I traveled out of the country for the first time without my parents at nineteen?  When I got a job?  When I moved out and began living on my own?  Does that make me an exception?  And aren't exceptions automatically removed from the overall picture for being exceptional?  So, then aren't we all still measured against impossibly low standards?

Last summer, I was walking outside my apartment, when someone in authority who also lives here commented:  "Are you taking your daily walk?  To inspire me?"

It's difficult to live as an object that people in authority consistently measure their own suffering against.  We must constantly fight the inner monologue created by those around us who mean well, but chip away at our humanness, with each demeaning comment.

So how do I cope?  

I love the people who simply say good morning, or ignore me, if that's what they normally do, and go on their way.  Those who interact with me the way they do with the general population.  No condescending voice,  No cooing at me as if I am an eternal toddler doing something cute.  

I want to exist in a world where I can do something awesome, be complimented, and not filter a thing.  I want there not to be a filter.  I want to believe what you say, when you say it.

So, I'll work on it.


Sometimes, I still think about that poem I wrote as an eighth grader. And though I can't rescue that crumpled and torn piece of notebook paper from a garbage can back in 1995, I can take comfort in knowing it was good.

I did grow up to be a poet, after all.


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Monday, April 11, 2016

How My Great Grandpa's Innovation Made It Possible for Me to Ride a Bike

It's just like riding a bike.  

Whoever coined that phrase - which indicates that a task will be super easy - obviously didn't have CP, am I right?

The picture above (which shows me smiling and posed on a faded and dated Smurf Big Wheel) was a common sight at my great grandparents' house, back in the mid to late 1980's,  One of my sister's and my favorite things to do was to ride our bikes up and down the sidewalk in front of their house.  

There was only one problem:

While I could reach the pedals, I had no way to ensure my feet would stay on the pedals for more than a single rotation.  Usually, this meant my sis (after doing a lap or two on her purple two-wheeler with training wheels) would come back for me...and push me the entire length of the sidewalk and back, while I tried desperately to keep my feet on the pedals.

My great grandparents tried to come up with solutions.  I have a brief memory of being out on that same sidewalk one sunny morning, with my great grandma.  Instead of riding on the Smurf Big Wheel, she was trying to teach me to ride one of two red and white tricycles (which we had been given the year before, but I had never mastered.)  Grandma tried to encourage me, to hold the tiny, low seat of the trike and encourage me to pedal.  But even a tricycle seemed too unstable for me, and was near impossible for me to ride.  This all changed one magical day when Grandma and Grandpa brought me to the toy store.  (Okay.  It was a store and there were toys there.)

Grandma, Grandpa, my sis and I regularly went grocery shopping together.  They let us try free samples, and indulged us by buying special treats like string cheese and turkey salami, which we didn't get at home. Grandpa even satisfied our curiosity about coconuts on one occasion.  We had heard a rumor via Sesame Street that coconuts had milk inside and we wanted to try it.  Boy, were we thrilled when he and Grandma not only bought it, but broke it open with tools!  We were less excited upon our discovery that coconuts were not, in fact, a secondary secret location for cow's milk...

There was no way I could be disappointed this time, though.  Grandpa and Grandma were taking me to the store to pick out a brand new Big Wheel.  There were not many options - maybe one soft pink and white.  I was not a fan of this option.  Luckily, there was a second.

This one was gray and black.  The tires were real-looking and it had streamers and stickers.  The seat (which had a perfect, high back rest) also sported the coolest fire applique ever.  Riding it would be what I imagined riding a motorcycle might feel like.  I would be tough, and free, with the wind in my hair.  Grandma and Grandpa brought the new Big Wheel home, and Grandpa went down to his shop, which was beyond the playset in their backyard (which was a draw for all the great grandkids.)

I don't remember how long it took.  I don't even remember seeing Grandpa attach the things.  All I remember is seeing my big wheel, suddenly sporting yellow-painted, wood block pedals with black and orange straps to secure my feet.

It made the bike even cooler, in my opinion, because now, I could ride it myself!

I can't tell you how many hours I spent on that thing.  How good I felt being able to pedal up and down the sidewalk by myself.

I did feel like a real grown-up riding a real motorcycle.  The fire sticker made me feel extra tough.  But it was Grandpa's pedals that made me feel free.

Thanks to him, riding a bike felt just like riding a bike.


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Monday, April 4, 2016

How a Parent's Response to Ableism Can Impact Their Child

I don't remember every detail.

I was around ten years old.  I had stayed after school to participate in an art-related activity.  My mom was with me.  Some of the activities were parent-child focused, so it was not strange that she was there with me that day.

It was fairly crowded, with parents and children, and I would always clam up when my social world at school and my family's world at home collided.  I was not familiar with any of the other kids.  I knew I stuck out, being the only student there with a walker, and so, I kept my focus on my project and spoke very little and very softly.

When the time came to leave, my mom was helping me put my jacket on.  With the prospect of leaving the room so close at hand, I became more comfortable and spoke at my usual volume.  A younger boy overheard me.  His eyes got wide and he said to my mom, in shock:

"She can talk?"

I was so embarrassed.  I was embarrassed by the child's question, by his incredulity, and that my mom had to hear it, too.  I was used to people's comments but it was extra humiliating if they were made in front of family.

I shut my mouth.  I had no idea what to say.  (Not that it mattered, as the boy's comment was directed at my mom, not at me at all.)

My mom, though, stayed admirably calm.  She continued helping me with my coat, and said to him, "Yes, she can talk.  She uses a walker to get around, but other than that, she is just like you."

I wished the whole instance could have been erased from both of our memories.  I did my best to put it out of my mind until later that evening, when family gathered at our house - maybe to celebrate a birthday - as I said details are foggy.

I was looking elsewhere, but tuned into when my mom brought up the comment by the little boy to another family member.

"He asked if she could talk," Mom said.  "I guess she'd been quiet or he hadn't heard her talking earlier."

I listened carefully, but didn't turn my head.  I wanted to know what Mom really thought about this.  Was she embarrassed?  Did she wish we hadn't done the after school project together?  Or maybe that she had taken another one of my siblings instead of me?

Mom continued recounting the moment: "I wanted to take him by the collar and shake him.  I wanted to tell him, 'Of course she can talk!'"

I cannot tell you how good this was for my soul, for my confidence.  The combination of my mom modeling for me how to deal with naive questions and knowing that she was angry on my behalf let me know, unequivocally, that she valued me.  That she loved me the way I was.

Hearing a parent's anger on their behalf may not be beneficial for every child.  I know, for me, that anger expressed in the moment would have been very hard to deal with.  I'm sure my mom knew this.  And, as the parent of four kids (at the time) she knew that we learn how to respond to things based on how adults around us react.  She stayed calm and rational for that boy's sake, letting him know, through her reaction, that it was okay to interact with me.

But I also loved knowing that my mom was indignant on my behalf.  That it was not just me, who felt that moments like these, and comments like these, were unfair.  That they were wrong.  I needed to know that they hurt her, too.  And while I knew she had spent my whole life fighting for me to have what I needed and deserved, to watch her do it, really cemented something in my ten-year-old psyche.

Just the year before, I had dealt with these kinds of comments and worse, every single day.  From teachers and students alike, who did not know how to integrate a student with Cerebral Palsy into the classroom.  My self esteem took hit after hit after hit, for nine long months.  Even then, Mom was there.  She taught me how to speak up for myself.

And in these brief moments a year later, my mom laid so much of the groundwork that made me who I am today.  She taught me how to address hurtful remarks respectfully, and she taught me it's okay to be angry about things that really matter.  That words do hurt.

...Thankfully, when they come from my mom, they also do a lot of healing.


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