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Enough Down syndrome awareness, let’s talk acceptance

October is Down Syndrome Awareness Month, and what I’d really like to do is pour a bucket of ice water on national and global Down syndrome organizations to wake them up to the reality that we have to move past awareness.

With estimates that at least 250,000 Americans have Down syndrome, society knows the genetic condition exists. Besides, the national Down syndrome organizations’ campaigns to raise awareness seem to fall short. (For example, the slogan, “More alike than different” repeats the negative perception that people with Down syndrome are different from everyone else. Another campaign wants you to wear mismatched socks to show your solidarity for people with Down syndrome.)

Today, as a parent, I call on the national and global Down syndrome organizations to pour their efforts into what should happen after everyone is aware of Down syndrome.

How can schools, businesses and employers work to effectively accept and include our loved ones with Down syndrome? How can we help people with Down syndrome live their lives to the fullest?

Really, my dream is inclusion. I don’t want my 4-year-old son, who has just one more chromosome than the next kid, to be “accepted.” I want him included. I want him embraced as someone with strengths and weaknesses.

Let Charlie show you his talents and capabilities, then let’s work as a community to help overcome his challenges. You know, like the next kid.

Like your kid.

What does successful acceptance and inclusion look like? Schools like the IDEAL School in Manhattan are succeeding, so who’s collecting the data and gleaning and sharing best practices? Businesses like Lowe’s home improvement employ people with intellectual disabilities not just to check a box for their social responsibility report but because they recognize people with disabilities contribute. What made those businesses get it?

Acceptance and inclusion are working out there. We need more.

We need national and global Down syndrome organizations to hear their constituents (parents and people with Down syndrome who want to learn, work and contribute), collaborate and effect change.

To just begin a wish list, I sought advice from individuals with experience in education and employment policy, and parents just like me. What can we legitimately ask our national representatives to do? Below are mere morsels of a smorgasbord of requests.

  • Collaborate with Congress and the U.S. Department of Education on all education laws, regulations and policies that affect students with disabilities (e.g., IDEA, ESEA, Higher Education Act).
  • Identify the best education and inclusion experts and create a strategy to educate society on what effective inclusion means. Then give your constituents the tactics to recreate others’ success.
  • Recruit experts in postsecondary education for people with intellectual disabilities to help craft and replicate the educational infrastructure people with Down syndrome need to contribute.
  • Provide materials with tips for families on advocating for their own children on a variety of education topics, from that first IEP to the transition from education to workforce. Not just a one-pager of to-dos but templates and real-life examples. Lifelines.
  • Advocate for modernizing systems that give people with Down syndrome disincentives to work (e.g., Medicaid, Social Security).
  • Corral the passion and skills of your constituents. Earn our trust. We need to know you represent us. We need to know you hear us before murmurs become shouts.

After Ethan Saylor, who had Down syndrome, died at the hands of uneducated security guards and while calling for his mother, horrified parents worldwide mobilized a grassroots campaign to spur our national Down syndrome organizations into action. It wasn’t pretty. Egos were bruised and harsh words were exchanged. But it worked.

Imagine if we had been working together all along?

More about special needs advocacy

Down syndrome: Is awareness overdone and action overdue?
Don’t make excuses to exclude my child from your sport
Don’t tell me I should have aborted my child with Down syndrome

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