When a Disability Course Taught Me a Hard Truth About Myself as a Parent
It started with an analogy.
Less than a century ago, most astronomers assumed the Milky Way was the only galaxy in the universe. As telescopes became more sophisticated, astronomers began to grasp the truth: the heavens are actually filled with countless galaxies, each containing billions of stars. It didn’t change the fact that those galaxies were always there, but it changed the way we viewed the universe forever.
This was the introduction to a class I never pictured myself as a student in — a disability course. I’m in Pilot Parents of Southern Arizona’s Partners in Leadership class of 2016. It’s a two-day-a-month course that spans over six months. Even though my son, Anderson, is only 1 year old, I thought I would learn about his rights and get a head start on how to work with schools.
What I didn’t expect to learn: a hard truth about myself.
After speaking about the (mostly horrifying) history of the treatment of people with developmental disabilities, the instructor said something to this effect: A large percentage of people who get a prenatal diagnosis of Down syndrome abort. I believe this is because we still view people with Down syndrome by the things they can’t do.
This was me. Although termination wasn’t a consideration for us, the major source of my grieving was based on the fact that my child would live his life with a disability. I equated disability with inability.
I still have a hard time saying it: my son has a disability. I felt guilty about this. Because maybe if I have a problem saying my son is disabled — that means I am still prejudiced against people with disabilities.
Here’s the Webster’s Dictionary definition of disability: a condition (such as an illness or an injury) that damages or limits a person’s physical or mental abilities.
The definition of this word, disability, only focuses on limits. On what he can’t do. When I look at Anderson, I see an infectious smile accompanied by an ever-present chuckle. I see my blue eyes and his father’s overly expressive brow. And I see Down syndrome. But with his extra chromosome — I see opportunity amongst the challenges.
Anderson has the opportunity to change the current paradigm surrounding Down syndrome and yes, the disability community, not by the things he can’t do — but what he can.
I feared having a child with Down syndrome because of my outdated perceptions. My perceptions have been shaped by history, teachings and my own ignorance. It’s time to re-train my brain and my heart. I’ll let advocates, parents who have gone before me and Anderson be my guide.
I feel as if I just got the most expensive telescope on the market. Instead of looking at Down syndrome as something to “overcome,” I see it as a star among Anderson’s own personal galaxy. The star can’t be glazed over. Instead we must appreciate its complexity — powerful, sometimes unpredictable, altogether a bright light.
If you are interested in seeing if your state has a similar course, click here.
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