Imagine a world where we didn’t need to have this month. Where a diagnosis of Down syndrome came with a big CONGRATULATIONS instead of I’m sorry and maybe you shouldn’t continue the pregnancy. Where the worth of people with Down syndrome was never questioned. Where they were supported and given all the therapies and medical care without an issue. Where they were fully included in school without a fight. Where their attendance at college was expected, not a surprise. Where they were employed in meaningful jobs and paid at least minimum wage for their work. Where seeing their faces in the media or on toys was commonplace.
It’s a beautiful dream, but unfortunately it isn’t our reality.
Right now, a Down syndrome diagnosis is usually delivered in a somber tone accompanied by a list of things that baby will never do. There are lots of I’m sorrys, and far too many discussions of termination. The worth of their very lives is questioned before they are even born. In today’s world, it is often a huge challenge to get necessary therapies and medical care. Parents are fighting with schools all over the world to get their child included in school with the necessary supports in place because too often the assumption is that a child with Down syndrome cannot learn with typical peers. Right now, there is not an expectation of people with Ds attending college. People are shocked that there are programs all over for people with intellectual disabilities and that they learn and thrive! In today’s world, people with Down syndrome can be paid $2 for doing the same job as a typical person who makes minimum wage. Right now there is a continual fight for representation in the media.
The world we live in is the reason why Down Syndrome Awareness Month is necessary. It is why there are so many of us parents who are shouting our kids’ worth to anybody who will listen. It isn’t that we need to make the world aware that people with Down syndrome exist. They already know. We need to make the world aware that a life with Down syndrome is worth living. That people with Ds are capable, diverse, complex people. That people with Ds go to college, run businesses, are incredible artists and models… the list goes on. That regardless of what they achieve in this life, they are human beings worthy of love and respect. That a diagnosis of Down syndrome should not lead doctors to press for termination.
I hope and pray that someday we live in a world where this month isn’t necessary. Where people with Down syndrome are celebrated, welcomed, and included every day. Until then, I’ll keep sharing and shouting.
Because my girl is worth it. And so are all of her chromosomally enhanced friends!