"Then there's the real kind of invisibility, the kind familiar to the poor or the disadvantaged. And most of all, the invisibility of disability, which manifests itself in a million different ways: the school board meeting where money is allocated to high profile programs like athletics while special education fights for inadequate resources; public discourse on special needs issues in which persons with disabilities are excluded from the discussion; conversations about persons with disabilities, in which they are spoken about as if they're an abstraction, there but somehow not there."
Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
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February 26, 2013
The Invisibility of Exceptional Children
Today, at the 504:
February 25, 2013
Autonomy is a Kind of Monster, Too
Today, at Support for Special Needs:
"Schuyler's differences are significant. Her life will be similarly different, and I anticipate it will require her to do so from our home, at least initially. Until she finds her own Island of Misfit Toys, she will always have a home with us. Her chinchillas will be here, so I suspect she'll be okay with that for a while."
February 18, 2013
Alone on a Crowded Sea
Today, at Support for Special Needs:
"I once believed that a larger sense of community would benefit us all, that the rising tide raises all the boats, etc. I don't think I believe that anymore, not entirely. The Internet makes it feel like there are a lot of us in the same boat, but perhaps it's more like there are a great many little boats bobbing around in the same dark sea. And perhaps that's the best we can hope for. Tend your little boat, and find the friends with who you can tie onto for a time and help each other."
February 11, 2013
A Break from Passing
Today at Support for Special Needs:
"So Schuyler learns to pass, and I try to show her that she doesn't need to while at the same time helping her to construct this Potemkin village of outward normalcy as best as I can. It's complicated; I feel guilt when I assist her in building the mask, but I also sometimes wonder if by encouraging her to embrace her difference I'm not setting her on a path that, better or not, may very well contain more pain, more disappointment. Schuyler's own wishes are much clearer; she wants to be like everyone else. She all too frequently expresses the heartbreaking sentiment that she wants to talk like everyone else. When we do her homework or study for her tests, especially for the mainstream classes she attends, I can feel her frustration at not quite getting the things that she must be aware come so easily to her neurotypical classmates."
February 4, 2013
Sometimes We Celebrate
This morning, over at Support for Special Needs:
"Sometimes we don’t ask too many questions. Sometimes we don’t pick apart the decisions made by the people in her life, or try to look too deeply into those processes. Sometimes we don’t need to hear how a judge might make a choice based on something besides technical perfection or demonstration of proficiency, but instead on something larger, more powerful, and less subjective. We don’t need to know what moved someone to do a kind thing for Schuyler, or to try to measure the exact thing that a positive mark might be recognizing. People make fun of the “A for effort” without realizing that sometimes, the effort is the thing. It’s not the often-mocked “everyone’s a winner” approach. It’s more an acknowledgement that for some, the effort really is Herculean, and the fruits of that effort deserve accolades."
Congratulations to Schuyler, my very own Division I award-winning Valkyrie ninja marimba warrior. |
February 2, 2013
The Difference
Over at The 504:
"Like most special needs parents, when I spend time with the parents of neurotypical children, I become hyperaware of the differences."