When a Woman With an Intellectual Disability Taught Me Something a Doctor Couldn't

I often refer to my life before my son as “my former life.” My outlook, my mission and my profession have all come from being Karl’s mother. Karl has Down syndrome. I remember two distinct conversations that shaped our journey to where we are now. One when somebody said the wrong thing and the other when someone said the perfect thing.

After Karl was born and we were told that he had Down syndrome, my OB-GYN came into the room to comfort me. He meant well. He told me Karl could have a good life. He said a boy in his neighborhood who also had Down syndrome worked at the grocery store bagging groceries.

Oh my gosh! My kid wasn’t going to bag groceries. That wasn’t our plan. Why would I think that was an acceptable goal for him? Was this really how people would perceive him? I knew I was going to have to change some things. I didn’t want my son’s dreams or mine to be held back by people with this set of presumptions. I went on a mission that ended with me working as an advocate.

After working as an advocate for several years, I started feeling discouraged. It seemed like an uphill battle I might never win. Then I went to yet another conference. At dinner I sat across from a 30-something-year-old woman. I was lamenting that I didn’t know what to order, and she offered a suggestion. We struck up conversation. She explained that she was there as a self-advocate and that she was a person with intellectual disability. She said she spent the first 18 years of her life in an institution until a disability rights group got her out. She enjoyed telling me about her life, her apartment, her job. She told me she rides the city buses everywhere she needs to go. I told her how impressive that was to me; I’ve never been able to figure out bus schedules and would be terrified to attempt on my own. Her reply: “There are all kinds of things I can do. No one knew until somebody let me try.” BOOM! There it was, my new inspiration. Could I change the world? Probably not. But I could change somebody’s world, one somebody at a time. Especially my son’s, and that was enough.

And yes, the irony that someone with an intellectual disability had the perfect insight and that someone with a doctorate in medicine did not is not lost on me.

Hello, brave new world.

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