I called my 14 year old daughter with Down syndrome into the room, “Macy, did you know there is a Down syndrome awareness event at your school tomorrow?”
She sat next to me on the couch and I showed her the announcement in the form of a poster with the words, “Down Syndrome Awareness Month” painted in blue and yellow poster paint which had been shared on her middle school’s ASB Instagram page. I read the caption outloud to her; “Join us tomorrow, Oct. 21st at both lunches to help spread awareness and show your support during Down Syndrome awareness month. Get information, stickers, and handmade braided bracelets to wear in support of DS awareness during both lunches while supplies last.”
“Macy, did you know about this event?”
“No.”
“Have you helped make bracelets for this event?”
“No.”
“Has anyone talked to you about this event?”
“No.”
I found this to be problematic so I dug a little deeper. What I learned was that an awareness day for people with Down syndrome had been planned without a single person with Down syndrome involved in the planning, preparation or execution of the event. I’m going to say that again: an awareness day for people with Down syndrome had been planned without a single person with Down syndrome involved in the planning, preparation or execution of the event. In the year 2023 I found this very hard to believe. Imagine something like this happening with any other marginalized people group! We’d have ourselves a national news story.
I knew I only had part of the story so with curiosity I reached out to the staff member who had initiated and overseen the event. I was familiar with her because we are both moms to kids with Down syndrome. Her daughter with Down syndrome was three or four years old at the time. She shared with me that right before lunch started they had invited the students with Down syndrome to help pass out the bracelets but none of them wanted to. I was not surprised by this. A last minute invitation by a person you do not know to participate in an event about you that you know nothing about will most likely result in a strong ‘no’! I brought up the idea that to invite the students with Down syndrome at the last minute to participate in something they have no prior knowledge nor information about is to tokenize them at best. Unfortunately the event took place, without a single person with Down syndrome included. My concerns were dismissed as I was told the event went well, that the students seemed engaged, had a lot of questions and they ran out of bracelets. “Every activity helps,” is what I was told.
There was a time in my early years as an advocate when I would have thought the same thing. A time when I wasn’t listening to the voices of disabled advocates. A time in my advocacy when I couldn’t see how the execution of a “Down Syndrome Awareness Event” like this risked perpetuating the harmful narratives about Down syndrome that an awareness event could and should help dismantle.
You can’t know what you don’t know. Which is why the conversation is crucial.
No one involved in this event, students, teachers and other adults alike, were challenged to think past their good deeds to the impact it might have on the students at the school. It’s as though society has made it easy and preferred, to hop in a bubble with like-minded people and make decisions for others while skipping over the conversation about recognizing our unconscious bias and the harm done to our collective humanity when we don’t do the hard work of knowing better and doing better.
Fast forward to today. It’s the last month of school. I dropped my daughter, a student with Down syndrome who has been part of this school community for two years, off at school and watched her walk up to a crowd of students hanging out and waiting for the bell to ring. Because of the directness and ease in which she approached the group I assumed she knew them and they knew her. I sat in the car and watched as Macy tried to insert herself into the group while mostly being ignored.
I cringed.
I watched my daughter standing alone just outside their circle and doing “self talk”, while she acted out the interaction she wished had taken place.
My heart broke.
Then I watched as the girls finally acknowledged Macy only to point at the boys and encourage Macy to shake her booty at them. Which she did while everyone laughed. I jumped out of the car, not even knowing what I would do but knowing I couldn’t just sit there and watch, just as the bell rang and all the students scattered to class.
I cried.
Recently, I shared on my Instagram page about Inspiration Porn and stated “I will not be celebrating a non-disabled person asking a disabled person to prom.” Whew, this got some reactions! This post was met with a lot of “yes!” and “amen!” and with a lot of, “I couldn’t disagree more!”, “Posting this is so harmful and hurtful for our kids with disabilities!” and “you are wrong!” just to list some of the kinder opposition. The main pushback I have been thinking through is the idea that because we live in a world where our kids with disabilities continue to be overlooked and excluded, any of these “acts of kindness” as long as they are well-intended are inspirational and should be shared because it leads as an example for other kids to also be inclusive.
I hear this. I’m thinking on this.
I’m also thinking about how kind and well-intended both adults and students were behind the “Down Syndrome Awareness Event” that took place at school last October. How natural and easy it was to fail to see the full humanity in a person with Down syndrome to the extent of excluding them from the event. And when I called out this concern it was dismissed and met with a defensive posture. I can’t help but make the connection to the end of the school year watching my daughter, who is longing for connection and belonging at school, be made the butt of a joke. The thing about it all is I bet none of those kids had mean or bad intentions. There’s a good chance they were wearing a blue and yellow bracelet last October and that they say “hi” to Macy in the halls and maybe they’ve even taken the time to invite her to join them at lunch. Macy was drawn to them for a reason. This group of students were not strangers to her. And I really do believe if we got all 15 or so of those kids in a room and gave them the opportunity to have a conversation about their unintentional bias towards people with Down syndrome and disabilities at large, and how that may influence their actions in using Macy for their entertainment, and how wearing a blue and yellow bracelet, giving out high-fives and being considered kind because you interact with a person with Down syndrome is entry level to being a good-human. I believe if we had that conversation they would want to hear it and learn.
I think the young people at the schools, saying “hi” to Macy or inviting kids with disabilities to prom are the very humans in our world who are going to help foster future spaces of belonging for my kids with Down syndrome and for that very reason they deserve to have conversations in which their intentions are questioned so they can learn and grow and become better versions of themselves. But if we don’t have that conversation then I worry we end up with kids being told how good and kind they are for wearing blue and yellow bracelets, and saying “hi” to a kid with Down syndrome all while being unable to see the harm in making a kid with Down syndrome a tool to be used for their entertainment.
What I’m realizing in this 15th year of parenting Macy is she deserves so much more than another kid’s act of kindness. What she deserves is belonging. What she deserves is to be viewed as a full and complete human, with Down syndrome, with differences and with a unique way of engaging with the world. What she deserves is to be included and embraced and invited into a circle of kids hanging out in the mornings at her middle school. What she deserves is for her peers to view her as an asset to their lives and to invite her into genuine friendship. What she deserves is for us to have a conversation about the harm that could unintentionally be caused when we don’t teach our young people, and ourselves for that matter, about the risk of perpetuating ableism when we don’t ask ourselves what the impact of our kind acts and good intentions may be. I also think our young people deserve more than accolades when they are kind and inclusive of their disabled peers. I believe young people deserve to have the conversation about unconscious bias and what that means for them. They deserve to be challenged to think about the impact of the decisions they make and to be guided and taught how to see the full humanity in every person.
How can we create spaces of belonging if we leave out the hard conversations about why we are not there yet and what needs to change in ourselves in order to get there?
In closing I’ll say this: There’s a lot I don’t know. A lot. There is so much room for growth in my advocacy journey. Along the way I’ve made it a habit to ask myself these three questions. Maybe you’ll find them helpful too:
Am I listening to and following the lead of disabled advocates?
Do I see the full humanity in the person I am advocating for?
What unconscious bias have I not dealt with and how will that impact the outcome of my advocacy?
Here’s to continuing the conversaton. Thanks for join me.