Tag Archives: children with disabiltiies

Guest Post: Matchstick Girl

Amy Gravino is a certified college coach for individuals with Asperger’s Syndrome, and is diagnosed as having AS herself. She is currently attending graduate school at Caldwell College in Caldwell, NJ, where she is working to obtain her Masters degree in Applied Behavior Analysis. Amy is also authoring the book, “The Naughty Autie,” which chronicles her experiences with dating, relationships, and sexuality as a woman on the autism spectrum. (For more information, please visit www.amygravino.com.)

Editor’s Content Note: This post discusses being locked in a closet, and may trigger a claustrophobic reaction.

It all starts with a doorknob.

The palm of my hand wraps around cool metal. Smooth and solid against my skin, gaining me entrance to my place of peace. I can hear the other children’s voices somewhere distant, far away on the Big Toy. They play outside, running over hot blacktop, skin freckling in the sun.  But I am in here, in the dark.

I move into the closet slowly, acutely aware of my Velcroed sneakers touching the tiled floor, one step at a time.  The shoes are too tight, and my feet are throbbing and cramped. They’re trapped, along with the rest of me.  My muscles are tense and twisted in preparation for the onslaught of adolescence soon to come.  I’m in the middle of the closet now, standing right below the light bulb. Without hesitation, I sink to the floor and arrange myself in a cross-legged position.  I have no concept or inkling that any of what I am doing is not normal.  I don’t even think that anyone notices me retreating in here day after day. I’m a matchstick girl—legs spindly and awkward, all too sensitive, waiting to be set alight by the outside world.

I try to breathe, for what seems like the first time all day. Tiny hisses of air pass through my clenched teeth, which are aching behind omnipresent metal braces. I can feel the blood rushing through my gums to the enamel, and back again.  So much awareness, and yet it is this same awareness that fails me when I try to interact with my peers.

Thoughts of past and present social failings dart through my mind, each delivering a momentary but painful sting: a student’s science project in Mrs. St. Pierre’s classroom two years ago.  A flood of red, followed by a loud rumble and a hiss from a homemade volcano sends me running out of the room screaming.  Gym class two days earlier: a silent mantra—I will hit the ball this time, I will hit the ball this time. And I did—with my face, courtesy of an intentionally too-hard lob from the other side of the net.  Home Economics, one year ago. Untrained hands move clumsily, twitching from the sewing machine’s vibrations.  I’m bent too far over, and it’s only seconds later when a mousey brown strip of my Rapunzel-esque hair catches beneath the needle.  My classmates stand nearby, taking in the spectacle, making no move to help me.  While I shriek, they laugh.

The emotions that poured out of me in each of these situations come back to me now, as powerful as they were when I first felt them.  I become so lost in my anything-but-pleasant reverie that I do not notice the closet door slowly shutting behind me.  The sudden click of the lock jolts me upright.

“Haha, you’re locked in the closet!” one voice jeers.

“You’re not allowed to come out!” another joins in.

Two girls. Ella Ringway and Kelly Rockpoint. I recognize them immediately. Why are they doing this? What did I do wrong? I grab the doorknob and it turns, but the door won’t open. A swell of panic rises in my chest.

“Please, let me out! Please!” I cry.  But the taunting continues.  With all the might my miniscule form can muster, I push against the door, but their backs are up against it on the other side, and I feel the weight of their bodies countering my efforts.

“Come on, you guys! Let me out of here!” I again implore. But they ignore me, and I can hear them laughing at my expense. My safe haven is now a prison, and I cannot escape.

Eventually, Mrs. Plotz, the math teacher whose closet I am trapped in, arrives, and sets me free, shooing Ella and Kelly to their desks so that class can begin. I emerge from the closet as slowly as I went into it, nerves destroyed and heart scarred from my ordeal. My sadness and anger are barely concealed as I find myself forced to complete long-division problems with my former captors.

You call this justice? Does the Geneva Convention mean nothing to you people? I wonder while fuming silently.

But this was middle school, and there was no justice to be found. Not for anyone, but especially not for me. This continued all through high school, unrelenting, unending. I was, I thought, trapped in an invisible closet, one of my own making, unable to connect to anyone or anything. It is only years later that I now see how they were the ones truly in the dark.

This precise memory—of the closet, of being locked in by my peers—has not passed through the fore of my mind in a long time.  It had no reason to until last year, when I received a message on Myspace from Ella herself. I was surprised more than anything else, and did not know what to expect when I started to read it.  What could she possibly have to say to me? We had neither seen nor spoken to each other since graduation, and I couldn’t imagine why she would have a need to write to me.  It was only after I’d read the entire message that I realized she had apologized for how she’d treated me. She said she wished she’d known more about Asperger’s syndrome at the time, and that maybe if she had, she would have acted differently.  But the would-haves and could-haves meant nothing to me.  What did mean something was that, out of all the people who’d tormented me back then, Ella was the only one who had the courage to come out and apologize for it.

Sometimes I can still feel the closet around me.  The odor of mildew and old math books collecting dust is as strong in my mind now as it was then, but other smells now provoke other memories. They are locked up tight, while I sit in front of the door to keep them from getting out.

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Recommended Reading for 13 August, 2010

You know, if you’re into the Gregorian calendar (also, Friday 13th! Spooky!). Why hello there, gentle reader! This is my first Recommended Reading. This is very exciting for us all. While this should be a time of celebration, be cautioned: comments sections on mainstream media sites (and it’s all MSM articles in this edition of RR!) tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

A group of people lying in a circle on the grass, hands stretching towards and touching in the middle. There are three wheelchairs scattered about nearby, and some rope on the ground. Rocks are just visible to the bottom of the shot. The photo was taken from the top of a flying fox.

Photo by Louise Dawson. From the photo’s Flickr page: ‘Participants in this Outward Bound group, with a variety of physical disabilities, had just tackled a ropes challenge course as part of a 9 day program.’ The photo was taken in November 1996.

IRIN Africa (from the UN Office for the Coordination of Humanitarian Affairs): SENEGAL: Children with disability – when stigma means abandonment. Warning for some highly unpleasant treatment of disabled children.

The shame attached to mental and neurological disorders is a strong force, said Dakar hairdresser Ibrahim Gueye, the father of a child with a severe learning disability.

“In Senegalese society it is quite difficult to have a child with a mental disorder. The prevailing belief is that it is a curse; it is difficult to get family and friends to accept such a child.”

In the District of Columbia in the USA, from the Washington Post: Independent administrator to oversee D.C. compliance in disability lawsuit:

The fight over appointing an administrator is the latest chapter in the Evans lawsuit, which was filed in 1976 over the District’s abysmal care of people with developmental disabilities.

That’s right, the case has been going for thirty-four years.

From the Ghana News Agency, 50% of Brazilian buses for persons with disabilities:

Vice President John Dramani Mahama on Wednesday announced that 50 per cent of buses expected from Brazil would be friendly to persons with disabilities.

[…]

He said the constitution of the National Council on persons with disabilities was the beginning of the educational programmes that would help to redress their challenges as public institutions noting that the transport system still lacked facilities for them.

In the UK, from the Guardian, Why the next Paralympics will be the greatest ever by Ade Adepitan, Paralympian and TV presenter.

The news that Channel 4 is going to spend millions on the London 2012 Paralympics and give it 150 hours of coverage is a landmark moment. The BBC did a fantastic job of increasing the Paralympics’ profile, but it usually ended up on BBC2 – second fiddle to the Olympics. I only found out about the Paralympics when I was 14 – before then I didn’t know it was possible for someone in a wheelchair to compete in a global sports event.

In the Canadian town of Cobourg, at Northumberland News, Electronic voting a win for disability groups:

The system ensures security by sending each registered voter a pin number by mail; that number can then be used to access the electronic ballot either online or on the telephone.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading[@]disabledfeminists[.]com.

Recommended Reading for May 18, 2010

Pharaoh Katt at Something More Than Sides: I Dreamed That I Was Normal

I dreamed the world made sense,
That people never tried
To delve into my psyche and redefine my mind.

Gauntlet at Tumblr: Janet Street-Porter shares her thoughts on depression…

I think maybe what we are seeing here, is women who have a powerful voice in the media through their personal fame or newspaper column, sharing their experience in a way that will hopefully help to normalise the experience of mental health problems and help reduce stigma.

telesilla: 3W4DW — Day ???

I don’t need to explain to anyone why I’m on government assistance, because you know what? It’s none of anyone’s damn business.

Brendan Borrell (Los Angeles Times): Pro/Con: Time to reexamine bipolar diagnosis in children?

In a draft of the next edition of the Diagnostic and Statistical Manual of Mental Disorders — the American Psychiatric Association’s bible — a new label, temper dysregulation disorder with dysphoria, is proposed for these behaviors instead. Unlike bipolar disorder, the new label doesn’t specify that the disorder is a lifelong condition.

Seven reactions to reviews of Rachel Axler’s “Smudge”

On-stage scene from the play. A man and woman stand looking into a pram, the woman with a many-limbed plush toy. The pram has a wild series of tubes and wires snaking out of it.

I’ve been shaking my head over the press for Rachel Axler’s new hipster-ableist play, Smudge. Here’s a lightning tour, with my response

s at the end. Emphases are mine.

In ‘Smudge,’ Baby’s disabled, and mom’s not much better, from Newsday:

Most couples look at the sonogram of their impending baby to see whether it’s a boy or a girl. But when Colby and her husband, Nick, scrutinize the picture of the life in her womb for an answer to the “what is it?” question, they are appalled to realize that they mean it. Literally.

Rachel Axler’s “Smudge,” the very dark 90-minute comedy at the Women’s Project, aims to be part horror movie, part domestic relationship drama. Their baby, a girl, arrives unbearably deformed, with no limbs and one big eye. Nick (Greg Keller) bonds with the unseen character in the pram encircled with tubes, and names her Cassandra. Colby (Cassie Beck, in another of her achingly honest performances) attempts to protect herself from the agony through brutal humor, maniacally snipping the arms off baby clothes and taunting the “smudge” until “it” miraculously responds. Or does it? […]

BOTTOM LINE The unthinkable, faced with wit but not enough depth

More, from Variety:

Title comes from the first word that comes to mind when Colby (Cassie Beck) gets a glimpse of her infant daughter, grotesquely described as having no arms or legs, an undeveloped skeletal structure and only one (beautiful, luminous blue-green) eye in her misshapen head.

More, from Time Out New York:

She is nearly indescribably deformed: a purple-grey mass of flesh and hair, with a single, disconcertingly beautiful Caribbean Sea–colored eye. Her horrified mother, Colby (Beck), describes the child as looking “Sort of like a jellyfish. Sort of like something that’s been erased.”

More, from SF Examiner:

Continue reading Seven reactions to reviews of Rachel Axler’s “Smudge”