A Down syndrome blog post about Down syndrome and disability.
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 Anderson is only one, 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:
Around 90% of people who get a prenatal diagnosis of Down syndrome abort. This is because we still view people with Down syndrome by the things they can’t do.
This was me.
Although termination was not 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 prejudice 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.
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I feared having a child with Down syndrome because of my outdated perceptions.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, all together a bright light instead of vast darkness.
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A note to the readers: I thoroughly enjoyed the first session of Partners in Leadership course. I know it will make a huge difference in our family’s life.
In this first session :
-We talked about the history of how people have treated those with developmental disabilities.
-We discussed how right now people with developmental disabilities are largely treated as “clients” with a focus on community based services. Now we need to move from “clienthood” to citizenship—inclusion, focusing on people’s talents, treating people with developmental disabilities as fellow humans.
-We also discussed Person Centered Planning
If you are interested in seeing if your state has a similar course, click here.
