What if my child with Down syndrome can't

“I just feel kind of lied to when people say that people with DS can get married or go to college, etc.”. A mom who listens to the The Lucky Few Podcast wrote as she reached out to share her frustrations with progress, or lack thereof, of her son with Down syndrome. I could feel the desperation, disappointment and heartache in her message and it took me back to those first months and years raising Macyn when I had similar thoughts and feelings as I watched other kids with Down syndrome complete tasks and reach milestones that Macyn continually missed. Sure people with Down syndrome can get married or go to college, etc. But what about the kid with Down syndrome who doesn’t achieve the things so widely expected and celebrated in our society? What happens when our kid with Down syndrome can’t?  Look, I am all about celebrating the amazing things people with Down syndrome are doing around the world. And it’s really important for the world to see and celebrate it too. Still, in our efforts to convince the world that people with Down syndrome deserve to live in it, I fear we, the Down syndrome community, have done so without undoing the ableist ideas in our own lives. 

Allow me to expand. I believe the feelings of sadness and devastation met with a Down syndrome diagnosis has a lot to do with ableist thinking. A way of thinking which says Down syndrome is bad because disability is bad. This messaging is woven into the foundation of our medical, social and societal thinking and ways of being. So it’s not surprising when we learn about a baby with a Down syndrome diagnosis we go in search of some goodness and hope. Often this looks like hopping online in search of videos and articles about people with Down syndrome. Or maybe even getting plugged into the Down syndrome community where we find messages of hope, goodness and light. This hope, goodness and light often comes to us in the form of, “look at what people with Down syndrome can do!” attached to videos of a person with Down syndrome reading, happily attending social gatherings with peers, graduating high school, attending college, getting a job, finding love. Then there are the stories which make their way into the headlines about people with Down syndrome who compete in ironman races, start and run successful businesses, lobby in DC, and star in major motion pictures and on television shows. As we learn about a baby with Down syndrome we grab at these stories circulating around the globe and instead of saying, “your baby with Down syndrome is good and worthy of life and love.” with a period at the end, we say, “sure your baby has Down syndrome but they too will be worthy of life and love because look what they can do and become!” Somehow in our efforts to say to the world, “people with Down syndrome are amazing and worthy of a space in this world!,” we’ve missed the “period, full stop.” and managed to move forward in our love for and celebration of people with Down syndrome based on what they can or will do and especially so when what they are able to do makes them most like people without Down syndrome.