“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.
When my daughter Macyn was five years old I sat in a class for parents learning ways to academically support our child with Down syndrome. The woman moderating the class, who had a son with Down syndrome the same age as my daughter, at one point stated, “isn’t that why we do all this for our kids, so they can be more like their typical peers?” Her statement gave me pause, creating a moment for me to stop and ask myself who I want my daughter with Down syndrome to be. The answer? I want her to be her best self. Her best self as a person with Down syndrome. There is no way to separate Macyn from Down syndrome and even if there was I wouldn’t want to. I love who she is with Down syndrome.
Macyn is now 14 years old. For the past 14 years I have been unraveling the ableism in my own life. Picking the pieces of ignorant, judgmental, fearful shrapnel set on convincing us there is a best way to be human, from my heart, mind and soul. Just because I have a child with Down syndrome doesn’t automatically undo my ableist ways of thinking and living. Instead, Macyn has been an invitation for me. Down syndrome has been an invitation to step away from society’s ideas about what gives a human value and worth so I could more clearly see the intrinsic value and worth in her, and in so doing seeing it in everyone, including myself.
The fact is, there is so much my daughter with Down syndrome can’t do, especially when compared to her peers with Down syndrome. She can’t read a book or count past 50. She doesn’t get invited to hang out with friends and she can’t easily fit in with her peers in social settings. She can’t be left home alone or care for herself like most 14 year olds. And while I don’t want to place limits on her, I can also guess it is unlikely she’ll go to college, live alone, or start a business. Yes, maybe someday she will do all of those things, but that’s not the point. The point here is none of them give her value or make her a person worth knowing, celebrating and loving. There are so many tasks society has tied to our value and worth, that Macyn can’t do. But what she can do is show up in this world unapologetically as herself, as a person with Down syndrome. She can see your value and worth and embrace and love you exactly as you are. Her life is an invitation to question the harmful ideologies of this “do more - be more - made for more” hustle culture which has us constantly tripping over comparison, feeling miserable about ourselves and cynical about each other. In other words, she is doing so much good for the health of our collective humanity by being nothing more than a kid with Down syndrome.
Last night after getting ready for bed, Macyn walked into the kitchen in her pjs. She came up to me, said, “I love you mom!”, and gave me a hug. She’s not very tall and the top of her head doesn’t even reach the chin on my 5’10” frame. So I got down on my knees, eye to eye with my girl and wrapped my arms around her. Once again I found myself holding on tightly to some kind of sacred magic and she took my breath away. Not because of anything she did, but just because of who she is.
Reflecting back on the message from the podcast listener who reached out, “I just kinda feel lied to…”. You feel that way because you have been lied to. But I would challenge the way in which we see it. The lie is not found in what we’ve been told our child with Down syndrome should be able to do someday or that there is a best way to have Down syndrome. Yes, those ideas are extremely harmful, yet the lie is a bigger, a more impactful and harmful lie than that. The lie is that your son has to do/be anything more in order to be seen as valuable and worthy. It’s a lie not only believed about people with Down syndrome but one being fed to people everywhere.
The kicker is, our loved ones with Down syndrome hold the key to the way out of this harmful thinking, offering us an invitation to step towards the truth.
An invitation to begin to undo ableism and superiority thinking in our own hearts, minds, and souls so that someday we will be able to see the value and worth in our kids with Down syndrome, each other, and ourselves just as we are…period, full stop. Our loved ones with Down syndrome have invited all of us into this sacred journey. When will we accept?