The Road We've Shared

In our capitalist economy, our children with Down syndrome are seen by some as less than – not able to be “contributing” members of society.

So we fight.

We fight language in an effort to change perceptions. We fight against the “R” word because it demeans our loved one. We fight for person-first language in hopes that it will somehow convince people to care. We hope with all our being that saying our child is “a person who has Down syndrome” instead of “Down’s Syndrome child” will help society see the person before the label. Lately, we’ve even started using the phrase “happens to have Down syndrome,” perhaps hoping that people will see this person we love with all our hearts as we do – a human being – and not a drain on society at best, someone who should not have been born at worst.  We cling to phrases like “More alike than different,” because we feel the only way to create change is to convince society that people with Down syndrome aren’t so odd that they should be made fun of, or worse yet, ignored.

People who have an intellectual disability have always been on the bottom of the disability hierarchy.

“People talk about Kris like she’s not even there,” she exclaimed. “I mean, she’s not retarded- she just uses a chair!” – The Disability Hierarchy, by Kathie Snow.

So, it’s possible that we, people who have Down syndrome and their families, may feel unwanted in some disability community circles.  On the other end of the spectrum, some parents reject the notion that their child is disabled in any way, preferring terms like “differently abled.”

This conundrum is complicated even further by the fact that, we as parents, don’t really have the power to accept or deny a label for our children.  If I was to ask my son about how he identifies, his answer would include his full name, sometimes. Other times he claims a name that describes how he’s feeling – he’s asked to be called Michael Jackson, Mr. MJ, and a few other iconic names.  He’s more likely to identify as a “rock star” than any disability moniker even though he does know that he has Down syndrome. When it comes to politics, he knows who Barack Obama is, and recognizes the President on site. Other than that, he’s not bothered by the details.

So parents of people who have intellectual disabilities are in a difficult situation when it comes to claiming labels. Some of us claim membership in the Down syndrome community.  We have our own advocacy groups and a sense of belonging to something bigger than ourselves.

The problem, as I see it, is that many of us no longer choose to align ourselves with the larger community of disabled persons.  We still use terms like, high- or low-functioning. We save our advocacy energy for issues specific to people with Down syndrome, and often, specific to our own socio-economic or other status.

Some of our groups do reach out to other disability organizations – especially the autism community – when it comes to advocacy. That could be because a large portion of our population has a dual diagnosis – or it could just be good politics.

When disability advocate Lawrence Carter-Long started posting about claiming the disability label, I saw it as a call to political action, rather than a language preference.