There is a special beauty in celebrating the Down syndrome community just as spring is surfacing here in northern New Jersey. Our bulbs are sprouting through last year’s unkempt mulch, and today as I was driving through Wyckoff on my way home, I noticed the leaves on some weeping willows blooming, readying to kiss the water that rests tantalizingly beneath them. It’s not much, but we don’t need much in order to see the potential. Spring will spring, the northeast will warm up, and pretty soon we will see more daylight hours than not. So many good things are to come!
March 21st, or 3/21, marks World Down Syndrome Day, a date representing the three copies of the 21st chromosome, and this year’s theme is “Improve Our Support Systems.” I was intrigued when I looked this up, at first thinking, “Well duh, yeah, where’s my village?!” and wondering where this all fits on the world stage of governments that operate in very different ways, not to mention within our own country where supports differ from state to state. And even among our local community, varying needs lead to varying levels of satisfaction with what we have access to, from education to social opportunities to medical care, and more.
The National Down Syndrome Society launched an advocacy campaign this month targeting systems, large and small, that require disability input. The campaign, “No Decision Without Us”—which I will warn you comes with an irretrievable earworm of a tune —is an update to the “Nothing About Us Without Us” slogan that many in the disability community have embraced. The refrain goes, “I want to be where the decisions are made,” while each scene follows self-advocates through personal choices (what a teenage girl will wear to a family wedding), into the community (the design of a new public transportation building), within public spaces (hospital, school, airport), and demanding a voice toward policy changes (legal system).
Regardless of what we believe and in which direction we are determined to travel, a thread that ties us all together is that we will never settle for just good enough.
What Is Down Syndrome Anyway?
Down syndrome was named for researcher John Langdon Down, who in the mid-1800s identified the characteristics of Down syndrome as distinct from other disabilities. Typically developing individuals have 46 chromosomes—two copies of each of the 23 chromosomes. The majority of people with Down syndrome have a type called Trisomy 21, which is a full extra copy of the 21st chromosome in every cell of the body, while 3-4% have a type called Translocation and 1-2% have a type called Mosaicism. Translocation is the only inheritable type of Down syndrome, which means that the majority occurred spontaneously with no known cause.
What Is Advocacy?
Advocacy can be done anywhere at any time by anyone! Some people create entire professional careers around advocacy, but what makes the difference between a good one and a great one is passion and knowledge. Here are a few types of advocates we find in the Down syndrome community:
Self-advocate:
Someone who advocates for their own needs and rights. In this case, a person with a disability who speaks up about unmet needs or unrealized rights and guides others toward a necessary solution.
Individual advocate:
A family member who advocates for the needs or rights of someone with a disability, such as parents at the Individualized Education Program or 504 meetings at school. Professionals can also serve as individual advocates, from staff such as case managers to privately hired specialists who have a strong understanding of an individual’s rights under the law.
Systemic advocate:
This is someone who isn’t simply willing to work within existing systems but who sees a need for expansion and growth. They work with others to collect data and change laws.
How Can Someone Support the Down Syndrome Community?
A really fun way to support the community is to support the individuals who comprise the community! Here are some self-advocate-run businesses selling everything from clothing to candles to artwork, treats, and more. Locally, you can visit businesses that support the advancement of people with intellectual/developmental disabilities by increasing opportunities to work and lead fulfilling adult lives, such as Just a Taste of New Jersey in Fair Lawn, Ethan and the Bean in Little Falls, and The General Store in Montclair.
What Am I Reading?
This month we are swimming in books about Down syndrome! Some favorites for the little ones:
“Different: A Great Thing to Be!” by Heather Avis
“I Am a Masterpiece!” by Mia Armstrong
And some for the big ones:
“More Alike Than Different” by David Egan
“Entwined: Sisters and Secrets in the Silent World of Artist Judith Scott” by Joyce Scott
What Am I Watching?
“Patrice: The Movie” is a documentary that covers a problem referred to as the “marriage penalty,” where the assets of an adult who collects Social Security Income (SSI) are capped at $2,000 and should they marry another adult who collects SSI under the same restrictions, they can only hold a combined total of $3,000 in assets. Reintroduced in this 119th Congress is the “Marriage Equality for Disabled Adults Act,” which would raise combined assets without the risk of two legally married adults losing their disability benefits.
Also, we can all tune in to the 14th World Down Syndrome Day Conference on UN Web TV between 10am-5pm EDT on Friday, March 21, 2025. Click here to check it out.
What Am I Listening To?
My two favorite podcasts that are tailored to, or at least skewed toward, the Down syndrome community are both back on air with new episodes after long winter hiatuses. The Lucky Few Podcast and The Extra Lucky Podcast can be found wherever you listen to your podcasts!
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 upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.
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