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.

Facing Mother's Day Without Her Son, Ethan Saylor's Mom Shares Memories

This Mother's Day while most moms are having a good time being spoiled, Patti Richmond will be missing her son Ethan Saylor. Ethan, a young man with Down syndrome, was killed on January 12 during an altercation with three off-duty Frederick, MD police officers moonlighting as mall cops because he didn't want to leave a movie theater after the show was over.

Not only does Patti not have her son, but she also does not have justice for his homicide. There are many unanswered questions that an initial and internal investigation swept under the rug, preferring a narrative that blamed Ethan's Ds for his death.

As a Mother's Day gift to this grieving mom, would you add your name to the petition asking the Maryland Attorney General to ask for an independent investigation into the circumstances that led to her son's death?


Read on to share in a personal Mother's Day memory written by Ethan's mother.

Remembering My Ethan on Mother's Day

I miss Ethan so much each and every day since he was taken from us. My other children, Emma and Adam, surround me with their love. We comfort each other, we cry together, we laugh together, we speak "Ethan speak" together. I know I am blessed... blessed to have been Ethan's mother and to have two wonderful young adult children to hold me up and love me every day, not just one special day a year.

When I think about the upcoming Mother's Day, I can't help but remember the antics of Mother's Day 2012. Each family lucky enough to have a character with an extra chromosome has a collection of treasured stories to tell. At our house we call them Ethan stories or Ethanisms. Last Mother's Day was a gem...

We had just moved into our new home. With an in-law suite for Ethan, the house was large enough to accommodate his support staff, my other children, a home office, two cats and our new dog. We were planning to entertain two of Ethan's favorite people in the whole world, his Grandma and Granddaddy. I awoke that Saturday morning with chest pain that persisted through cleaning the house and running errands. Even though I felt sure it was acid reflux brought on by the stress of the move, I reluctantly took myself to the Frederick Memorial emergency room.

Frederick Memorial hospital, home of the birthing center where years earlier midwife Marge helped bring my three beautiful babies into the world. FMH, where I trained to become a nurse when Ethan was a baby. As I waited for tests in that familiar hospital, I never imagined that just eight months later it would be the last place I would lay eyes on my first born child, my Ethan.



Turns out, testing proved it was a GI thing but not before I spent three days in the hospital including Mother's Day. My kids brought me flowers, cards, and goodies, and visited for a while. Of course Ethan came to visit and refused to leave me. He was steadfast and determined to spend the whole day with me. I knew he was anxious, afraid of the unknown and just needed to be with his mom. I was physically fine, bored awaiting tests, so it was wonderful to have Ethan there with me to pass the time.

While I was dozing off... in true Ethan fashion, he slipped in to the bathroom in my room without me or his staff person noticing. Once inside, he locked the door. Ethan's routine often included a shower after doing his business and soon we heard the shower water running.

That's when it happened... Ethan burst into his best shower voice and serenaded us all for the next 20 minutes. Ethan was a praying man. He talked regularly to the Lord and on this day he took this time to make his prayers for my health be heard. He sang his prayers to God (and the entire 2nd floor cardiac wing), "Please have mercy on my mom's soul and please don't let my mom to die, cuz I love her so much."

His young staffer and I couldn't stop laughing... yet tears filled my eyes as I witnessed his innocence, his sweet love for me and his life with me. He was completely at home in the hospital of his birth singing to God in the shower. He finally emerged from the bathroom with a grin from ear to ear.

Things like this happened day-to- day in my life with Ethan. He was the light of our life. He brought us great delight and it is that delight we miss the most. We are all so very sad there will be no new Ethan stories, no Uncle Ethan stories. On this Mother's Day and every day, we cling to our memories.

So this Sunday, this first Mother's Day without my son, I might just have to take a spin through the FMH parking lot, sing out loud his favorite Bob Marley tune and thank the Lord for my Ethan, for his life that brought us the stories and hours of delight.

Happy Mother's Day my dear friends, may you have many, many more with your beautiful children.

- Patti Richmond Saylor

Don't forget to wish Patti a happy Mother's Day by signing the petition.

On Mother's Day, Ethan's family will be participating in a vigil organized by an old time friend and fellow mother of a boy with Ds. Balloons will be released to honor Ethan's memory, at his favorite childhood park. Details about the event can be found at www.facebook.com/events/140249656159651

Open Letter to Congressman Van Hollen

May 7, 2013

Dear Congressman Van Hollen,

The Down Syndrome Collective, a group of over 2,000 advocates for the full inclusion and human rights of people with Down syndrome, urges you to secure an independent investigation into Robert Ethan Saylor's homicide. Nearly 4 months ago, Robert Ethan Saylor died at the hands of off-duty Frederick County Sheriff's deputies Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris. The local law enforcement community in Frederick has not brought justice to the Saylor family.

The refusal of the local State’s Attorney, Charlie Smith, to prosecute this homicide—instead using the veil of grand jury proceedings—gives rise to the unfortunate appearance of local law enforcement protecting its own. Smith’s statement following the grand jury hearing demonstrates his eagerness to adopt a narrative exonerating his law enforcement colleagues at the expense of a young homicide victim. By inaccurately stating that Saylor was "compromised by his Down's Syndrome [sic]," Smith has shifted the blame for Saylor's death onto his genetic condition rather than the improper restraint technique employed against him. Saylor was left face down and died of positional asphyxia, a known risk to all people. Most importantly, it remains unclear why Saylor was restrained at all over the cost of a movie ticket.

Almost exactly two years ago, you honored the 20th anniversary of the Americans with Disabilities Act, acknowledging the need for such legislation because “Americans with disabilities were too often denied the opportunity to fully participate and integrate into our society due to intolerance and unfair stereotypes.” Allowing blame for Saylor's death to be falsely placed on his genetic condition is an example of the same intolerance and unfair stereotyping you denounced. Only an independent investigation can reaffirm Saylor's equal rights as a human being.

Underscoring the need for an independent investigation is the revelation by local media that Saylor suffered a fracture to his throat, with bruising indicating he was still alive at the time of the injury. The article goes on to report, “Experts say it's hard to know how it happened without an investigative report to show what came into contact with Saylor's throat.” Therefore, an independent investigation is the first step towards ensuring justice for the Saylor family.

We ask you to hold the Frederick County law enforcement community to a higher standard of conduct. Without your action, an unarmed man will have died in Maryland's 8th district over the price of a movie ticket without so much as a meaningful investigation. Please reaffirm the right of every person in Maryland to live. Help secure an impartial investigation into Robert Ethan Saylor’s homicide.

Sincerely,

The Down Syndrome Collective

Open Letter to Maryland Governor O’Malley and Attorney General Gansler

Dear Governor O’Malley and Attorney General Gansler,

The Down Syndrome Collective is a group of over 2,000 parents, self-advocates, writers, artists, actors, teachers, healthcare professionals, and students who advocate for the full inclusion and human rights of people with Down syndrome. We call on you today to launch an independent investigation into Robert Ethan Saylor’s homicide at the hands of off-duty Frederick County Sheriff’s deputies Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris.

The failure of the local State’s Attorney, Charlie Smith, to prosecute this homicide—instead using the veil of grand jury proceedings—gives rise to the unfortunate appearance of local law enforcement protecting its own. We believe it falls on your offices, whether under Article 5, section 3(a)(2) of the Maryland Constitution or otherwise, to ensure that justice is done by conducting an independent investigation into Saylor’s homicide.

Smith’s statement following the grand jury hearing demonstrates his eagerness to adopt a narrative exonerating his law enforcement colleagues at the expense of a young homicide victim. By inaccurately stating that Saylor was "compromised by his Down's Syndrome [sic]," Smith has shifted the blame for Saylor's death onto his genetic condition rather than the improper restraint technique employed against him. Saylor was left face down and died of positional asphyxia, a known risk to all people. Most importantly, it remains unclear why Saylor was restrained at all over the cost of a movie ticket.

Underscoring the need for an independent investigation is the revelation by local media today that Saylor suffered a fracture to his throat, with bruising indicating he was still alive at the time of the injury. The article goes on to report, "Experts say it's hard to know how it happened without an investigative report to show what came into contact with Saylor's throat." Your offices are the only entities able to conduct an appropriate investigation recommended by these experts.

By way of comparison, when Johannes Mehserle killed Oscar Grant in Oakland, California, the local district attorney had the courage to prosecute the case. When George Zimmerman killed Trayvon Martin in Florida, by contrast, it fell on the governor to appoint a special prosecutor after it became clear that local law enforcement had fallen down on the job.

We ask you, protectors of the public, to hold the Frederick County law enforcement community to a higher standard of conduct. Without your action, an unarmed man will have died in your state over the price of a movie ticket without so much as a meaningful investigation. Please reaffirm the right of every person in Maryland to live. Order an impartial investigation into Robert Ethan Saylor’s homicide.

Sincerely,

The Down Syndrome Collective

For Immediate Release

May 1, 2013

Activists Mobilize to Demand Justice for Robert ‘Ethan’ Saylor

Fredrick, MD — Down Syndrome Uprising (DSU) and T21 Brigade have joined forces this week to call on Maryland’s Governor Martin O’Malley and Attorney General Douglas F. Gansler, to demand an independent investigation into the homicide of Robert ‘Ethan’ Saylor that occurred on January 12, 2013.

Citing the failure of the local State’s Attorney Charlie Smith to prosecute the homicide of Mr. Saylor, activists express concern over the possibility of local law enforcement protecting its own. Smith presented the grand jury with information about the case derived from an investigation conducted by the same agency that employs the police officers involved in Mr. Saylor's death.

Smith’s statement, following a grand jury hearing, that Saylor was "compromised by his Down's Syndrome [sic]," shifted the blame for Saylor's death onto his genetic condition rather than the improper restraint technique used on him after he refused to leave Regal Cinemas Westview Stadium 16 in Frederick City, Maryland once the movie ended. 26 year old Saylor was restrained face down with his arms behind his back causing him to suffer positional asphyxia. His death was ruled a homicide by the medical examiner.

Down Syndrome Uprising (DSU) and T21 Brigade, two grassroots activist groups, are working in tandem as The Down Syndrome Collective to redress the violation of Ethan Saylor’s civil rights that caused his death. “What has happened to date in investigating how a man died alone, crying out for help on the floor of a movie theater has been a sham. Only an independent investigation can honestly answer the manner of his death” says Taina Karru-Olsen, from DSU.

Jennifer Campbell of T21 Brigade explains, “Parent advocates have joined together seeking justice. We are keenly aware that Ethan Saylor could be any of our children, and are demanding an investigation that does not blame Down syndrome for a homicide.”

About The Down Syndrome Collective, T21 Brigade, and Down Syndrome Uprising

The Down Syndrome Collective is comprised of about 2000 members from both DSU and T21 Brigade, working to demand equal human rights for people with Down syndrome.

Established in 2009 as the Oz Squad, T21 Brigade is responsible for the removal or retraction of offensive material related to Down syndrome from a variety of online and print sources.
T21 Brigade Facebook page
T21 Brigade Blog

Down Syndrome Uprising (DSU) has over 1,000 members and is a grassroots online activism initiative that serves as a communication hub for a unified, global community of Down syndrome activists. Formed in January, 2013, DSU is organized by six mothers of children with Down syndrome living in four countries.
Facebook page: (https://www.facebook.com/DownSyndromeUprising)
Blog (http://downsyndromeuprising.blogspot.com/)

Media Inquiries

Sandra Lynn
T21 Brigade
(518) 496-6932
ds.mama at yahoo dot com

Taina Karru-Olsen
Down Syndrome Uprising
(425) 246-4530
Downsyndromeuprising at outlook dot com