Do you know Jonathan Mooney? You need to. He’s awesome. I have heard him speak and I’ve read his book, “The Short Bus: A Journey Beyond Normal”. I was immediately drawn in by his deliberate use of the proverbial short bus. Instantly recognizable and virtually impossible to overcome as a stereotype, the “short bus” brings with it society’s negative constructs around special education and the derogatory slurs frequently assigned to children who have disabilities. Whether you are as immersed in the world of inclusion as I am or not, this is a book of outstanding depth and profound insights.
I was
most taken by chapter twelve, a chapter which focuses on Katie, a young woman
with Down syndrome. As a part of his quest to understand “normal”, Mooney explores
Katie’s desire to live an ordinary life, yet worries aloud that this may not be
possible in America. In conversation with Katie’s mother, Mooney learns of her
fear that Katie will always be poor as she “does not accept SSI or any other
aid from the federal government…If Katie accepted SSI, she could earn no more
than seventy dollars a month from a job; if she made more than that amount, she
would lose SSI money. To remain eligible for Medicare in Ohio, Katie could
accumulate no more than a thousand dollars’ worth of assets. So Katie can’t
even own a cheap, used car. [Her family] had been told not to include Katie in
their will, because this “wealth” would threaten her future ability to get SSI
and Medicaid.” I believe that this resonated so deeply for me due to the time I spent in Washington DC lobbying on behalf of
the ABLE
Act as a part of Jewish
Disability Advocacy Day. There are similar stories to Katie’s all over our
country.
Further,
as an advocate for inclusive education, I found it frustrating that “Katie’s
space in the community college, one of her best outlets for socialization, was
also evaporating. Because of a complicated legal loophole, she is not eligible
to receive special accommodations in her classes without identifying herself as
a student with a disability. But if she self-identifies as a student with Down Syndrome, she will be considered ineligible for financial aid and
accommodations because, based on an assumption of her “low IQ” she would be
considered to have no “abilities to benefit” from higher education.”
And so, given
all of this, Mooney earnestly asks Katie’s mother, “How do we help Katie?” By
way of reply, she simply laughs. “I understand where that question comes from –
I used to ask myself the same question. How can I help or fix Katie? But Katie
isn’t the one who needs to be fixed.”
And there
it is. There is the profound truth. When we spend our lives trying to “fix” our
children and our students; no matter how pure our intentions, we perpetuate a societal
concept of “normal” that views disability as broken. It is deep in our cultural
consciousness to view Katie and other people with disabilities through the lens
of what is wrong with them. We teach, we train, and we try our best to fix. But
our children aren’t broken.
Every child is perfect, created in God's image. Every child is a gift and has gifts to share. That’s it. It’s a simple truth. Our children aren’t broken.
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