We’re well into Down Syndrome Awareness Month and are thrilled to celebrate with you! Your feeds and stories should be swamped by now with facts about Down syndrome and others’ personal stories about having or loving someone who has Down syndrome.
I’m not here to do that this time around.
Instead, what if I told you that disability is not quantifiable? What if I told you that the scale by which we measure fellow human beings with medically constructed terminology like “severe” and “low functioning”—even the IQ scale we all know so well—was borne of a time when our society proudly practiced eugenics, sterilizing men and women with disabilities against their wills, denying newborn babies lifesaving interventions? Would you want to subject yourself to such antiquated and lingering views when you found out that right now, in real time, our society was advancing beyond that?
For as long as we have been a nation, people with disabilities have been held to a different standard because they do not meet the normative criteria dictated through an able-bodied lens. We have legislative benchmarks protecting people with disabilities dating back to 1973, yet in January of this year New Jersey was ranked the number one most restrictive state in the entire United States for special education. If children with Down syndrome continue to be denied their right to be educated in general education classrooms, despite the resulting evidence-based research for improved life outcomes for them and their classmates, we will continue spinning our wheels in education and employment, wondering why the efforts behind our DEI initiatives aren’t paying off.
It’s clear that U.S. civil rights laws only set the stage for equality, so I appeal to this group of some of the fiercest loving humans on the planet—MOMS—to take your already rolled up sleeves and normalize difference for the beautiful children you are raising in your homes. Normalize communication delays. Normalize impeded speech. Normalize learning differences. Normalize mobility differences. Normalize a range of job prospects. Normalize intellectual and developmental disability, including Down syndrome.
And let’s let go of pity. Pity is gross. Love is better.
If you or your child hasn’t crossed paths yet with someone who has Down syndrome, there are many self-advocates who have granted access to their personal lives on TV and in social media, and I encourage you to follow them. If you are interested in parent perspective, talk to parents, but if you want to learn about people with Down syndrome, talk to people with Down syndrome. You’ll be glad you did, I promise.
Happy Down Syndrome Awareness Month, from our family to yours. :)
* Self-advocates to follow on Instagram *
Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with an upper limb difference, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com.