One of my biggest fears is what will happen after I’m gone. One day, my husband and I will die, and — God willing — our children will survive us. But what about my son with Down syndrome? What will happen to him then?
Our world is not built to include people like him. From the moment he was born, he was excluded.
Different.
Other.
10 years later, and we’ve gotten used to constant battles in school. A kid with Down syndrome typically isn’t welcome in a mainstream classroom, no matter what the ADA says. Parents like me, we have to fight tooth and nail for every inch of inclusion, because the status quo for so long has been to shunt kids with Down syndrome, and other disabilities, into a “special ed” classroom. Because clearly, a kid with developmental delays can’t be capable of learning like so-called “normal” kids, right?
READ: Developmental Disabilities Awareness Month: What I Wish Other Moms Knew
Let’s say we flash-forward another 10 years, and now, my son is out of school. But what then? Did you know it is perfectly legal to pay someone literally pennies per hour, just because they have a disability like Down syndrome? They can be doing the exact same job as an able-bodied peer, but because they have an extra chromosome, they apparently don’t deserve to make a decent wage — let alone a wage they can live off of. And this isn’t a rare issue; it’s systemic. An estimated 70% of people with disabilities are underemployed, and they are twice as likely to live in poverty.
No inclusion at birth, no inclusion at school, no inclusion in the workplace.
This year’s theme for World Down Syndrome Day is “With Us, Not For Us.” It’s a simple phrase with a deep meaning: and that’s the reminder that people with Down syndrome are human beings, just like everyone else. They have rights, just like everyone else — not to mention feelings, goals, dreams, fears. No matter their abilities, every person deserves to be given the same opportunities, but that right is one people with disabilities are routinely robbed of.
As Down Syndrome International explained, The United Nations Convention on the Rights of Persons with Disabilities calls for all people to have the freedom to make their own choices, to participate fully, effectively, and meaningfully in their communities and societies. Yet people are still, in the year 2023, being excluded. And the decisions that affect people with disabilities are all-too-often made without them. A person with Down syndrome is perfectly capable of advocating for themselves, yet no one can be bothered to even ask.
It’s time to do more. It’s time to fight back. Today, sign up to make a difference, and help fight for the rights and inclusion of people with Down syndrome all over the world.
