Enough. Robert Ethan Saylor was a young man with Down syndrome who never should have died in a movie theater, face-down and in restraints. His death should be the tipping point for Down syndrome advocacy groups to put aside differences and unite.

Did Mr. Saylor die because off-duty sheriff's deputies, moonlighting as theater security, lacked training and good sense to de-escalate the situation? We can't be sure, because the only investigation conducted to date was by the officers' own department.

Could another person with Down syndrome die this way again? Of course.

Are people upset? Of course. I'm petrified. I picture my son and his extra chromosome in that theater.

Are people blogging and tweeting and creating Change.org petitions? Of course — it's what we know.

Here's the problem...

None of us is loud enough individuallyto effect the change needed to protect approximately 400,000 Americans living with Down syndrome.

None of us is loud enough individually to effect the change needed to protect approximately 400,000 Americans living with Down syndrome, the most common genetic condition that still gets miniscule funding from the National Institutes of Health.

Tragically, the many organizations representing the Down syndrome community have not yet demonstrated the ability to unite and collaborate for the good of individuals with Down syndrome.

I was encouraged to learn that the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) had attended a meeting with the U.S. Department of Justice (DOJ)'s Community Relations Service. I brushed aside the logistical fact that DOJ had reached out to F.R.I.E.N.D.S., the local Down syndrome organization in Frederick County, Maryland, which then invited NDSC and NDSS.

After all, how the meeting happened wasn't important.

Then each organization departed the meeting and, like children staking claims on a playground, each issued its own, separate press release. Logistics again?

Enough.

Disjointed advocacy

As Americans, we lament Congressional stalemates because its members are too busy sniping and politicking — but at least we have the power to vote leaders in and out.

In the Down syndrome community, we need a united, cohesive advocacy campaign run like a business. (P.S. Advocacy means awareness and action.) 

Make no mistake, Down syndrome organizations: You are in the business of making the world better for my child and the 400,000 other Americans living with Down syndrome. Your job is to advocate for their human rights.

Disagreements must fall by the wayside like raindrops rolling off the umbrella we all stand beneath: the blue and yellow umbrella called Down syndrome.

My son is your constituent. His sister is your constituent. I am your constituent. And right now, you risk failing us if you cannot unite and put the past behind you.

What is the past? Does anyone have a true, unabridged history of Down syndrome advocacy in America? So many parents, so much passion… and too many disagreements, fractures, spin-offs and stalled progress.

Emotion cannot drive decision-making in this business. Disagreements must fall by the wayside like raindrops rolling off the umbrella we all stand beneath: the blue and yellow umbrella called Down syndrome.

Speak up! Speak out!

My passion to do whatever I can to prevent this from happening to my son and the sons of every other mother… knows no bounds.

My megaphone may be thimble-sized, but my passion to do whatever I can to prevent this from happening to my son and the sons of every other mother… well, that passion knows no bounds.

Many are poised with me, waiting for leadership and direction to start the swell that can change the world. As I stand with my thimble, I pull along several other parents trying to rally the movement we desperately need.

Together we speak out with one message: Enough. We will not let our children be next.

More Parent's voices^


Read more about Down syndrome advocacy

Down syndrome advocates call for justice, training
Down syndrome: Is awareness overdone and action overdue?
Why Ann Coulter doesn't matter, but words do

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