Open Letter to NDSC

On October 16, you sent an email to your membership asking “Are We ‘Aware’ Enough Already?” and provided a somewhat flip answer to the question. I’m not sure if your email was in response to some of the excellent blog posts written about the need to move beyond awareness (at least one of which has gotten national attention), a response to individual emails or calls, or just a coincidence, but your email disappointed me. There is a portion of your constituency that hungers for something beyond a glossy photo campaign and has been asking for a while now to get around to doing some good, hard work on advocacy issues.

You are an advocacy organization. That’s not something we decided for you. It’s in your mission statement. In fact, nowhere in your mission statement do you mention being an “awareness” organization.

In your email, you offer four common scenarios why awareness is still important: a mom receiving a diagnosis, a grandparent not sure what to do, a teacher putting up barriers to inclusion, and a doctor recommending termination. I agree that these are areas where work needs to be done.

All four of your examples are areas where there is a glaringly obvious need for advocacy. Boots-on-the-ground, down and dirty work. Short term plans that add up to long term goals.

Local communities and individual families do amazing work with awareness. As you said yourself in the email, just living our lives is a form of awareness. We hold walks, fundraising dinners, parties, and more. We wear our Down syndrome tshirts with pride and we live our lives out loud.

But what we need is leadership on the national level for the big picture issues. “Awareness” doesn’t get our children into the classroom. “Awareness” doesn’t pass state and national legislation. “Awareness” doesn’t enter the medical college where future doctors learn about Down syndrome. But advocacy does.

And while I don’t deny awareness is important and has a place in the overall conversation, it also has the potential to distract us from acceptance, inclusion, and advocacy. It feels great to participate in a fundraising walk. It feels awesome to watch someone come to a new understanding of Down syndrome after interacting with your child. But we increasingly let Facebook likes stand in for lasting change. We accept the smile and we share the next adorable picture but forget to ask for a change in school policy or a vote on legislation. We spin our wheels on awareness. We look to our national leaders to show us how to take the next steps. We look to you for guidance and encouragement.

You represent all of your constituents, not just those who wish to continue with awareness alone. You are a national face of Down syndrome. Some of us want more from you than beautiful pictures and “More Alike Than Different” campaigns. Some of us expect you to fulfill your mission statement. When we ask when we get to work on the big stuff, the answer should be “let’s do this together” and not a flip email, a pat on the head and advice to “keep doing what we’re doing.”

The internet has provided a very powerful tool for our community. We are connected in ways we have never seen before through social media, blogs, Skype…the list goes on. I challenge you to live up to your mission statement. Harness our collective time, energy, and enthusiasm and set us on a task together. Imagine what we could accomplish if we took this month to focus together on a goal beyond awareness. Imagine what we could accomplish if we gathered our self-advocates, bloggers, families, and friends and pushed together. Sang in unison (or at least harmony). Walked in a Buddy Walk then went home and called our senator on a specific legislative issue. Wore our Down syndrome awareness tshirt while we spoke with employers in the community about the possibility of integrated employment.

Instead of brushing aside those of us who long to tackle the big issues as a community, bring us together and let us loose on the issues.

We just might surprise you.


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