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I feared having a child with Down syndrome because of my outdated perceptions.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.

Toddler wearing a cap and button-down shirt

If you are interested in seeing if your state has a similar course, click here.

Follow this journey on News Anchor to Homemaker.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

Mom Calls Out Fashion Industry in Emotional Post About Son With Down Syndrome

Every kid deserves a chance to pursue their dreams. Louis Killick is a 6-year-old boy with Down syndrome from Surrey, England, who dreams of being a model. However, despite efforts by his mother, Anita Killick, Louis has been unable to break into the industry. Posted by Louis Killick model on Friday, January 1, 2016   Louis [...]

This Photo of Children With Down Syndrome Changed the Course of One Woman’s Life

A photoshoot of 11 children with Down syndrome changed one woman’s life forever. When photographer and kindergarten teacher Julie Willson decided to do a portrait series of children with Down syndrome last October, she never imagined the massive response it would get. Photo courtesy of Julie Willson / JuleD Photography Many media sites shared the [...]

This 22-Year-Old Professional Dancer With Down Syndrome Is Breaking Down Barriers

Hannah Sampson has been dancing since she was a child. Now, she makes a living doing it. The 22-year-old British woman with Down syndrome became involved as a part-time member of Stopgap, an integrated dance company consisting of dancers both with and without physical and cognitive disabilities. After a while Sampson was made full-time and now [...]

World Famous Model With Down Syndrome Rocks New York Fashion Week Again

She’s done it again. Madeline Stuart, the world’s most famous model with Down syndrome, made her second appearance on a New York Fashion Week (NYFW) runway. The 18-year-old Australian model walked the catwalk on Monday at the FTL Moda show at the Angel Orsensaz Foundation in Manhattan. She first rocked an etherial, winter-inspired look by Lulu te Gigi, complete [...]