“What Matters to Me”

What Matters to Me?

By: Christine Hayes, mom to Rory

I’ve been thinking this morning about what I really wish people knew about Down syndrome. I’m lucky to be surrounded by other families with kids with Down syndrome, so many diligently sharing facts, anecdotes, things that others may not realize. And I’m going to continue to share their words as they allow me, because what they have to say matters.

Then I thought, well, what matters to me? A whole lot more than I can put in one post, for sure. But I’m going to start with this:

People with Down syndrome do not have to reach anyone’s expectations in life but their own. People with Down syndrome do not need to conform to society’s standard of “normal” to matter. No one gets to decide if their lives are meaningful but them. There isn’t greater worth in someone’s life if they’re deemed as “high functioning” (a terrible term) by society. Honestly, deciding how well someone functions in life is often ableist. Most people make such statements based on their own values & experiences, not considering that different experiences are just as valuable.

Our society has a fairly narrow view of what is considered acceptable, about whose life is worthwhile. People with DS are discriminated against regularly, and sometimes discrimination comes under the guise of support. That may mean you think people with Down syndrome are great, & you’ll support them, as long as they can hold a job. Or thinking people with DS deserve to be treated like humans, as long as they can keep up with their typically developing peers. Comments like, “She doesn’t look ‘that’ Downs-y,” aren’t actually compliments. It’s all about fitting people with Down syndrome into this mold of what’s respectable, arrogantly deciding whether they’re deserving of life, or decent treatment.

So many decisions and judgments society makes on behalf of people with Down syndrome are based on the assumption that they know better than actual individuals with DS. Presuming that people with DS are incapable, instead of presuming competence. Believing that people with Down syndrome live terrible lives, all while a study of individuals with Down syndrome reports that 99% of them are happy with their lives. Those are pretty good odds for having a happy life in my book. And while I’m sure their lives aren’t always happy, just as typically developing folks’ lives aren’t, those are pretty good odds of living a happy life.