I recently heard an educator label a former student as “low,” as in “low functioning.” We hear the terms low and high functioning quite often when describing neurodivergent individuals and those with developmental disabilities. But from what point are we measuring? And do our perspectives all originate from the same place?
As the mom of two children with visible disabilities—one with Down syndrome and one with a limb difference—you may take me at my word that our society judges from vastly different reference points. Varying perspectives lead to heated debates between those touched by disability and those with little exposure. These debates begin before birth, when parents expecting a child with a disability are challenged to question the value of their baby’s life in ways that are often cruel and unbearable. The debates continue in matters of inclusion, both in education and community activities. Then there are the unethical debates, which pertain to medical care, including treatment disparities, and outright discrimination, as with organ transplant eligibility.
During the pandemic, with limited opportunities for spontaneous socializing due to health and safety restrictions, we have all been forced to self-select into situations that feel personally worth the risk, such as work and school; due to group size restrictions, we have surrounded ourselves with those who are the most emotionally significant, including family and the closest of friends. By self-selecting, no matter how justified, we find ourselves in an echo chamber of our beliefs, where our surroundings mirror our own selves and don’t challenge the status quo.
World Down Syndrome Day takes place every year on March 21, symbolizing three copies of the twenty-first chromosome, which defines trisomy 21, or Down syndrome. Over the years we have found fun opportunities to spread awareness, including partaking in the National Down Syndrome Society “Race for 3.21,” upping the ante this year from a 3.21-mile challenge to a 32.1-mile challenge. But more serious conversations are taking place on the world stage. There is a movement in the United Kingdom to omit Down syndrome as a legal justification for third trimester abortions. A study pertaining to eugenics, which is essentially the weeding out of what is considered less desirable genetic traits, revealed just a few months ago that Down syndrome is being targeted for eradication throughout at least the United States and Western Europe. Our own 117th Congress has the opportunity to pass the Charlotte Woodward Organ Transplant Discrimination Act.
Many vital social causes have surfaced and resurfaced this past year, and the onus of such collective responsibility cannot be discounted. However, we have learned that no matter how much distance a person places between themselves and causes of social equity, by the very definition of society we are not exempt from these conversations or their outcomes.
There is no greater gift you can give this World Down Syndrome Day than to consider whether you have room to shift your perspective on what makes a person valuable and what you or your family can do with this privilege. Some places to start or to continue if you’ve already begun a journey:
Watch the Netflix documentary “Crip Camp” with older children.
Ask your middle or high schooler to volunteer at a special needs summer camp, such as Camp Sunshine.
Sprinkle into your younger child’s bookshelves stories that involve incidental diversity, which means the characters are diverse but the diversity is not the core of the book.
Make a donation to the National Down Syndrome Society, our nation’s leading human rights organization for individuals with Down syndrome.
The more exposure we have to disability, the more we will realize that people are just people, with similar minds and similar hearts. Thank you for celebrating World Down Syndrome Day with us again this year! We are sincerely grateful for you!
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 all of the goofiness in between at: At Her Own Pace