The State of Down Syndrome Today

Folks, it’s a double blog hop post today. I’m hopping with the T21 Traveling Afghan Project again, and a Special Needs and Disability blog hop hosted by With a Little Moxie.

I’m using the prompt from the traveling afghan project, and if you’re interested in my connection to disability (the prompt for the other blog hop), I invite you to read “The Day I Met Down Syndrome” and a piece I wrote over on another blog about my brother-in-law.

So, what’s the state of Down syndrome today? I find that to be an intriguing question, and I’m curious to hear what others have to say about this.

I think the Down syndrome community is better connected than ever. We have national, statewide, and local organizations. We have online message boards, blogs, and email listservs. We are empowered by our shared knowledge.

Our children have access to medical care from professionals who know what to look for. (Ok, this is definitely an area for improvement – but just having health guidelines is a huge step forward.) The treatments for the different health conditions that come with Down syndrome are time tested and effective. We are able to catch things more quickly and treat more effectively. When things don’t go so well, we can reach out to our networks and get fresh ideas to try, questions to ask our doctors, and support for the times there simply aren’t any good answers.

Our children go to playgroups, participate in sports, and attend school. They go to college, they work in their communities. They are active in the political arena. More and more, people with Down syndrome are integral members of their communities.

The community still faces challenges. Stereotypes about Down syndrome abound and there are still people in this world who feel our children are a burden. There is new diagnostic prenatal testing available, but it doesn’t always come with accurate, balanced information about life with Down syndrome. Schools aren’t always willing to make inclusion easy for our kids, and there are still people who stop and stare when you’re simply trying to buy a gallon of milk at the grocery store.

If I could challenge this community to do one thing, it would be to use its powerful voice to push for some meaningful change in our service or medical system. There are some true injustices going on all over our country. (If you’re from Illinois and want to advocate for something – check out this blog post on my advocacy blog.) I challenge the community to move beyond “our kids are beautiful,” and move on to “our beautiful kids deserve better than a lifetime of poverty due to Medicaid restrictions.” (Though that doesn’t have quite the same ring to it…)

It’s a monumental task, to be sure. I just keep thinking of how effective this community can be in raising its voice. I’ve seen some pretty impressive campaigns using Facebook alone – one such instance was the complete removal of an offensive book from Amazon in less than 48 hours. What would happen if all of us hopped on Facebook, our online communities, our blogs, our email – and advocated for something really big like a Katie Beckett/TEFRA waiver in all states? Or increased funding for Birth to 3? Or an end to subminimum wage? And what if we took this voice and reached out to our brothers and sisters in other disability communities, and we all worked together on something? I think we would surprise the heck out of a lot of elected officials, and I also think they would at least pause and listen.

Each kind of advocacy has its place. I am in no way saying that we should stop spreading the message that these are lives worth living. Heck, I’ve written at least a dozen “Down syndrome is beautiful” posts here on my own blog. Of course it’s a worthy message! I’m just throwing out there the idea that we could do even more with that message, even more with the incredible volume with which this community can speak.

But otherwise, I think the state of Down syndrome is good. Great. Growing, thriving, flourishing, shining.

And besides, with this sweet girl counted among its ranks, how could things go wrong?

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5 responses to this post.

  1. Posted by Erin on May 30, 2012 at 8:57 am

    Great post! I agree completely. I just wish I knew why more people weren’t advocating. My husband and I have tried to fire up local people, to no avail. When legislators hear the same voices over and over again (those of the small number of parents who actually advocate this way), I think they start to tune us out. If everyone who had a connection to a person with a disability spoke out, they would have no choice but to listen.

    Reply

  2. Absolutely. I think the problem is a lack of leadership. I sure hope you will become a leader in this movement and spearhead some of this change!

    Reply

  3. I am one of those “quiet” advocates. I stand up in my daughter’s daily life. I speak up when I see/hear/experience something I don’t agree with. I treat everyone the way I would like to be treated (or I try very hard to.) But I also have a problem.

    Within the Down syndrome community, we are SO quick to scream for equality. We are determined and dedicated to helping our children be treated like everyone else. We go out of our way to have them included…..but then we demand they be treated differently. We want MORE for them. We DO more for them.

    It’s as if we’re screaming for equality, yet demanding special considerations.

    And I KNOW why. The walks raise much needed funds for support. But where are the walks for typical kids? Where are the accolades for the countless siblings who, on occasion, get left behind?

    Wonderful post, as usual! Thank you so much for participating!

    http://www.dontlicktheferrets.com

    Reply

    • I couldn’t agree more. I think the hardest step toward inclusion is the final step – that inclusion really means just that. Kids given equal opportunities, and sometimes that means our kids don’t get picked for a team, just like other kids sometimes don’t get picked. (just one example)

      I, too, struggle with the “treat my kid the same but give him special treatment” outlook. Perhaps this will change as my daughter gets older and inclusion really is an issue for us (I find right now that two year olds are pretty inclusive people), but it’s definitely something I’ve been thinking about!

      Reply

  4. Nice to meet you! I think using our groups to gain social inclusion is a fine idea! It’s kind of like herding cats sometimes though 🙂

    Reply

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