Wednesday, May 29, 2013

Open Letter to the National Down Syndrome Society (NDSS)

NDSS began the Buddy Walk in 1995 to spread its mission of promoting the "value, acceptance and inclusion of people with Down syndrome at the local level." In 2012, nearly 300,000 people participated in a Buddy Walk across the United States, and over $11 million was raised in the process. Local affiliates are expected (and contractually obliged) to give a certain percentage of earnings to the NDSS, as payment for utilizing the Buddy Walk name (trademarked) and framework.  Ethan Saylor, a young man with Down syndrome, died at the hands of sheriff's deputies in Maryland after refusing to leave a movie theater in January of this year, and NDSS ("The National Advocate for People with Down Syndrome Since 1979") has been criticized for its lackluster response in the aftermath of his homicide.  NDSS would like to separate the "joys of the Buddy Walk" from the "Ethan Saylor tragedy," while advocates for Down syndrome all over the world are left questioning the commitment of the NDSS to its mission. The Buddy Walk is the largest fundraiser for the NDSS. 

May 29, 2013

An Open Letter to the National Down Syndrome Society
(Why My Family Won't be Participating in This Year's Buddy Walk)

Last year, my family raised nearly $10,000 for our local Down syndrome group's Buddy Walk (our fundraising effort was so large that I was recently contacted to help field test this year’s newly improved Buddy Walk website).  Unfortunately, I cannot in good conscience participate in this year's Buddy Walk efforts after your failure to meaningfully advocate for justice in the aftermath of Ethan Saylor's homicide.

Two years ago when our family received news we would have a child with Down syndrome, I turned to you, the National Down Syndrome Society, for guidance and assurance.

Your mission statement served as a beacon of hope in a time full of unknowns:

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

We were inspired by this message—and by our young son with Down syndrome—and became very involved in our local Down syndrome community.  We began revving up the troops for our first ever Buddy Walk. The 2012 Buddy Walk was our first experience as part of a much larger community.  We raised so much money that I received a gold star in recognition of my fundraising efforts. I thought, “A gold star!  I got a gold star for Carter!” The day was magical, and everything I'd hoped it would be.

The faith I had in your organization quickly faded in the wake of your late and limited response to Ethan Saylor’s homicide, a true test of your commitment to your advocacy on behalf of those with Down syndrome.  When I learned of Ethan's death, I wanted desperately to contribute in any small way I could to help his family find justice.  I knew that would not happen without an independent investigation into his death, and assumed the NDSS would take a leadership role to ensure this case got the attention and outcome the Saylor’s deserve.  Sadly, the NDSS response was not only deplorably late, but efforts to secure an independent investigation for the Saylor family were absent or minimal. 

The first statement released by F.R.I.E.N.D.S (and supported by NDSS) did not come until six weeks after Ethan's death, and emphasized that F.R.I.E.N.D.S are “strong supporters of the Frederick County Sheriff’s Office.”  Subsequent statements by NDSS stated that the organization was “determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again,” but this determination came at the cost of any effort to secure an independent investigation.  In addition, later press releases had erroneous information, called for no action from the Ds community (asking the community to please not attempt to contact the Department of Justice) and failed to adhere to a language of inclusion and respect I would expect from such a large, respected advocacy group.

Recently, it has come to light that Ethan suffered unexplained injuries before his death (a crushed larynx, suggesting the use of force), yet there have been no new or renewed calls for justice and an independent investigation.

I enjoy reading the “My Great Story” pieces on the NDSS website, but not all stories about individuals with Down syndrome are “feel good stories" or have happy endings. Does that make them less deserving of coverage from our national organizations and national news organizations? I would argue these stories are more important, and where our collective attention should be focused.  We should all focus on righting the wrongs that befall people with intellectual disabilities every single day. Certainly the homicide of a young man with Down syndrome, who went to the movies and died while crying out for his mother, deserves our attention.

Last week, I received an email from the NDSS asking my help in beta-testing the newly improved Buddy Walk site for this year. In response, I wrote:
“Thank you for including me on this distribution. However, I am very conflicted about participating in this year's walk. I am very disappointed in the way the NDSS and the NDSC has handled the Ethan Saylor tragedy. There has been no community mobilization around the death of this young man. The silence of our national organizations is so disappointing to me that I honestly haven't decided if we can, in good conscience, participate this year.”
I received the following in return: 
“I totally understand where you are coming from and would never try to convince you to do something if it doesn’t feel right. You know I would love to see your family’s gorgeous faces, but only if they are smiling and feeling in solidarity with what we represent as a national advocate. I would very much like to separate the joys of the Buddy Walk program and the Ethan Saylor tragedy.I am sorry you feel this way about NDSS. I am really proud of the efforts of my colleagues that have been at the center of all of the conversations and have worked really hard to keep all of our communications about the topic balanced and professional.  Please take as much time as you need to think about it. Registration will remain open until event day.”
This felt like a clear message that we are not welcome at the Buddy Walk unless we are “smiling and feeling in solidarity” with what the NDSS represents as a national advocate.  I’m clearly disappointed in the lack of leadership from our self-described “national advocate for people with Down syndrome” and am not able to separate the “joys of the Buddy Walk program” from the Ethan Saylor homicide.  Having slept on it, I believe I’ve had all the time I need.

This year, my family will not be walking in the NYC Buddy Walk. I cannot, in good conscience, support the NDSS as the same organization I thought it was a year ago. I hope to rejoin the Buddy Walk next year, and I hope that something changes between now and then. I hope you start living your mission:

“The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.”

In sadness,

Stacey Calcano

*For more details on Stacey's personal experience--as well as for specific links and a timeframe for the NDSS response on the Ethan Saylor case, please read "My Not-So-Great Story" here.


  1. How sad this young parent had to deal with this, If the NDSS isn't going to be a group of true advocacy then the least you would think they could be is one of support. They failed on both accounts.

  2. This is absolutely perfect. Right on! And I am smiling through tears.

  3. Stacey, I hear your pain. I too have been disappointed by our local DSA chapter & have shifted my fundraising efforts to our local Down Syndrome Clinic as I see & experience how important they are to parents of all ages of our kids, providing a large panel of caring specialists who lovingly support our families with their knowledgeable information and reassurance! I hope you can find more reliable community somewhere similar!

  4. I couldn't agree more. The local and national groups failed their own people. Tragic and pathetic.


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