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I shared that my education about disability began in college, and in many ways (officially) it did.
Pursuing a SPED major briefly meant that I would learn about the hard and fast rule taught by nondisabled professors:
Person-First Language was only way to go. I was twenty and knew nothing about my history as a disabled person. Being surrounded by ableism my entire life meant that anything that centered my personhood sounded good to me. I learned about the ADA for the first time. The Capitol Crawl. All these things, as a disabled person, you'd think I would have known by then...
But it got me thinking...
What was the first thing I learned about disability, period?
What were the first messages I got about disability?
Well, those came way before age 20...
***
At home, the messages I got started early:
My trauma did not matter. This was the earliest message I got, starting at age 2. It quickly became apparent that my feelings were of little importance to those around me.
I went through traumatic trach changes daily until I was five years old. Each time I would apparently panic and struggle to breathe, coughing. But I would be told, "Don't cough," (because that would cause the hole in my neck to spasm closed.)
I have no memory of these, despite how many of them there were, but I remain highly sensitive to anything involving trauma to the neck, or any facial orifice.
***
My body was inherently wrong.
I first shared this moment in a Fosters recap back in 2018:
"You have a square head!"
"No..." (I'm running shapes in my mind. Heads are round like circles. A square has four sides and four points. He's wrong. Must've forgot his shapes. But why is he laughing?)
"Yes, it is. Look," he puts his hands, not careful, on both sides of my head by my ears. Then on the front and back. "It has four sides just like a square. I'll call you Square Head."
He pulls my shirt down over my head, rough. Because my Square Head can't fit through the Circle Hole. He has to pull hard. It feels like the hole is too small. But that's not what's wrong.
My head is wrong.
I feel it go all inside me. All the wrong. I wish my head was a circle. But I can't make it change.
It feels like I am bad.
Every time he calls me Square Head, the feeling grows bigger and bigger.
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| [Me at 3 years old, smiling a big, happy CP smile] |
Strangely, none of his reasons include that I spent the first year of my life hospitalized (and therefore lying down a lot) and that affected my head shape...
It did not stop at my head.
Every single thing was constantly critiqued - even at 3 years old, 4 years old.
"Sit right," I was told, daily, and I was picked up roughly from my natural W-sit and placed on my butt. From a seated position I had no choice but to use my hands for balance, so I could not play.
"Smile nice," I was told, when my CP showed too clearly in pictures I posed for.
Even my sleeping was critiqued (which I'll get into in a future blog post.)
Related: The Bed Thing
***
Sesame Street was one place in the whole world that I belonged.
My one saving grace at this early age was Linda Bove.
My one saving grace at this early age was Linda Bove.
I watched Sesame Street every single day and I saw a place where someone who was different was seamlessly accepted and adapted for. Linda couldn't hear. I couldn't walk. But watching Sesame Street for an hour a day, we both belonged somewhere.
Follow That Bird came out when I was 4 years old. And it was the media representation I had always needed. It began in a way that tiny me was thrilled with, Oscar the Grouch telling the audience that "for The Grouch Anthem, you stay sitting down!"
I got to see Linda, not only included on the search for Big Bird, but playing a key role in the end of the film. I got to feel the love of a place that welcomed everyone, no matter if they were Bert and Ernie, or a cow, or kids, Deaf or hearing, disabled or walking.
Thank God for media representation. Truly. I don't know where I'd be without it.
Because the truth is, though I grew up disabled, I was inundated with ableism from the time I can remember. I never fit in.
The messages I got about disability were either nonexistent, or exclusively bad.
Is it any wonder, then, that I clung so hard to Follow That Bird and Sesame Street, as a place where I could belong?
***
When I was in my early teens I sat through the lessons of older friends; or they would bring those lessons to me. DIsability voices were covered through educational organs; usually stories of inclusion or of integration (1985-90 was a really big time for this).
ReplyDeleteThe first thing I learnt was about the Warnock Report in 1988, and that was from a politician.
If the school has disability voice on the same ground as youth and student voice more generally.
There were subcommittees within Council and Clubs which showed directly and indirectly that we mattered.
Probably members and families with other communities and activities.
OCtober 1992 was probably Guide Dog Day or White Cane Safety Day and we students went in partnership around the school and learnt about orientation and mobility. Also there was sandwich making and we learnt about the training.
I also learnt a lot about how organisations and advocates had to adapt during the early-1990s recession. THose lessons - positive and negative - particularly in areas of recreation and vocation - have stayed with me.
Helen Keller and tactile sign - I had already a start with my grandmothers. I do not know if we have discussed in depth with Annie Sullivan.
THinking too of Edouard Seguin - who I encountered in 1997 - and Maria Montessori. There are good accessible lessons about paper craft - and my own art and craft was discussed in an inclusive way.
Seguin covered and coloured my own education.
And there is a lady called Beata who wrote a paper about disability, defectology and education in Communist Pola d (1956-1990).
EWa does good articles about Deaf education in second and other languages. So these women took up my learnings over the past three months.
Again we learnt about local activists and advocates. That learning is very valuable especially if there are ongoing relationships.
Creation of a community and business directory. like jobs, this covers about 20% of the opportunities!
Interesting!
DeleteTonia, as a parent of a 5 year old with right hemiplegia, is there any version of " 'Sit right,' I was told, daily, and I was picked up roughly from my natural W-sit and placed on my butt." that would be supportive and helpful? I don't think I will ever fully "get" what my son experiences but your perspective helps... thank you!
ReplyDeleteThere are SO many other options than physically handling your child.
Delete1) You can just let him play / let him be a kid. W-sitting is natural for kids with CP. Because it provides a stable base for us to feel comfortable and confident while we play. Sitting on our butts is more difficult (because having our legs out in front of us / crossed throws off our balance (especially when spasticity unexpectedly kicks in.)
2) Give him an alternative to W-sitting. (A supportive chair with a good back, that he won't slide out of.) Then make sure his toys are nearby and he has LOTS of space to play. (Do you have a big table? Or is there a chair low to the floor that he can use?)
You may have to think outside the box a bit, but the key to remember is that how he's sitting? That's sooo natural for a kid with CP. He's doing what comes naturally to him.
Present alternatives if you have them, in a matter of fact supportive way. Otherwise, just let him play and be a kid.
Thank you! I will present him choices that he can choose to act on (or not!)-- seems totally obvious now :)
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