What’s the point of Down syndrome awareness?

From George Takei's Facebook Page, 10/6/13

From George Takei’s Facebook Page, 10/6/13

October is National Down Syndrome Awareness Month. But, what’s the point of raising awareness about Down syndrome?

Each February is National Black History Month. Some wonder why block off a kind of history based on race. There’s not a White History Month–why separate out “Black History”? This criticism is grounded in the view that by separating out “Black history” it can actually undermine the ultimate goal of realizing equality among the races.

I must confess to being sympathetic to the point as applied to Down syndrome awareness month. It is wonderful to read of high schoolers voting their friends with Down syndrome homecoming king or queen. However, while it seems more and more the students are honoring their friend because they are a nice person and well-liked, the reporting is because the student has Down syndrome–you don’t see news stories of every other homecoming king or queen who only has 46 chromosomes, do you?

This selecting of Down syndrome as something different can seem to undermine the whole point of Down syndrome awareness, which seeks to make clear that people with Down syndrome are just people, entitled to the same equal respect as anyone else.

But we have these Awareness months and events and news features because, unfortunately, we still have yet to live up to the creed that “all are created equal.” We have Black History Month because some would argue every other month still is White History Month. Balance is needed to complete the historical story we have been telling ourselves, which for most of history did not include African-Americans in telling that history.

Similarly, we have Down Syndrome Awareness Month because not only have people with Down syndrome not been included in the telling of our shared experience, for most of our history they have been purposefully excluded, segregated, and hidden from society. This exclusion nurtured ignorance about Down syndrome, and ignorance begets fear. The awareness is needed to enlighten and eliminate this fear.

In the span of 24 hours, I read the following news reports which demonstrate the continued need for raising Down syndrome awareness.

In August, a conference was held in Boston on the Advances in Prenatal Molecular Diagnostics. I know, you regret missing it. At the conference,  Joe Leigh Simpson, Senior Vice President for Research and Global Programs at the March of Dimes, had this to say about why Down syndrome was the focus of prenatal testing:

Cell-free DNA tests for selected trisomies is dominating the conversation, Simpson said. It warns parents about Down’s Syndrome, a condition that they recognize and fear. “When we get to deletion syndromes that have a numerical and alphabetical name sixteen feet long, and it’s totally archaic,” he said. “We’ve got to start with something that the public realizes is bad.”

“Warns parents;” “a condition that they recognize and fear;” “We’ve got to start with something that the public realizes is bad”? When I read quotes like this, I wonder if the speaker knows someone with Down syndrome or even appreciates that they are talking about a condition that millions around the globe are living with? I give them the benefit of the doubt that they are ignorant, which is why awareness is needed.

Another instance where awareness was needed was a school in Florida where the principal dragged a student with Down syndrome 30 feet, over two doorway thresholds, causing bruises and cuts. The principal says the bodily harm she caused her student was “unfortunate and unintentional.” But is it no doubt also the result of being “uninformed and unaware”?

These instances of abuse and ignorance are contrasted with the positive news that began Good Morning America.

Pop singer, Katy Perry is holding a contest where high schools send in videos to win an in-school concert. Verrado High School submitted a video of Perry’s song “Roar” featuring Megan, a cheerleader who happens to have Down syndrome. Here’s the video itself:

Watching this, it does not appear that these students recognize their classmate having Down syndrome as someone to be feared. The students cheering in the stands do not appear to be a “public that realizes Megan is bad.” And, it seems inconceivable that Megan would be dragged by the Verrado High School principal.

Rather, the video and these students represent the value of becoming aware of a condition that historically has been avoided by society. As a recent study found:

A study of 1520 children ages 7 to 16 found that those who regularly interacted with people with disabilities generally had better attitudes toward people with special needs. They were less fearful of them, too, and more empathetic. Even just observing other people interact with those who had special needs, or observing their friendships, improved children’s attitudes.

Note that: becoming aware of a disability generally results in better attitudes towards those with the disability and improves the attitudes of those simply seeing people interacting with a member of society that has been historically discriminated against.

George Takei, Mr. Sulu of Star Trek fame, perhaps puts the point of raising Down syndrome awareness most succinctly in a widely-circulated Facebook post featuring the photo above:

Being human means learning to see the common humanity in us all.

Down syndrome awareness provides that learning to see the common humanity of those with Down syndrome. And with the advances in prenatal testing, and the opinions of those in medical leadership positions, it is needed now more than ever.

Comments

  1. Dear Mark,
    I am so grateful for you.. you make me laugh and smile and cry. Thank you for doing something I can’t do…be so smart and articulate about this issue….

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