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Sara Weir is the President of the National Down Syndrome Society (NDSS), which is the organization that spearheads and financially benefits from the Buddy Walks ®™ . NDSS claims to be the “leading human rights organization for all individuals with Down syndrome,” and yet in the face of the loss of Medicaid, they have been, for all intents and purposes, silent.

Silent, when the NDSS has promised to be at every table and stand up and fiercely advocate for people with Down syndrome and disabilities.

Sara Weir President of the NDSS

 

Silent, when The NDSS actually have the connections to affect powerful change right here, right now.

A Little Background on Medicaid:

  1. Medicaid is the federal partnership that provides states with money to help pay for healthcare AND programs that help people across the disability spectrum.
  2. A lot of the program funding has something to do with things the Down syndrome community deeply cares about: keeping our kids and their tribe out of institutions. Helping them work. Helping them be productive and integral members of our communities.
  3. If these cuts happen, our kids are likely to be stuck at home, without work supports. Without health care. Without help to reach their goals and dreams.

A Little Background on Sara Weir & NDSS

  1. The NDSS is The National Down Syndrome Society – they raise large amounts of money through their very popular Buddy Walks ®™ across the United States.
  2. That money is supposed to be used to fund the NDSS to help us when we need it.
  3. The NDSS has LOTS of Republican connections – in fact, Sara Weir, the President of NDSS, has a personal membership to the Capitol Hill Club, the exclusive Republican social club, in which she has frequent meetings on behalf of the NDSS.
  4. A strong stance against Medicaid cuts and caps, a strong stance against the new healthcare bill, signed by both Sara Weir and Robert Taishoff (the Chairman of NDSS), leading the public call against these cuts will be powerful.

So far, Sara Weir has not added her own name to any public statement on Medicaid made by the NDSS, nor has Robert Taishoff.

My fellow people with disabilities are placing their bodies literally on the line  against these cuts; parents of people with Down syndrome making videos that are going viral about what these Medicaid cuts are going to do to their families. We have columns and articles being written, we have parents, allies, advocates fighting tooth and nail against these proposed cuts that will be so devastating for people with disabilities in the United States of America.

But we are without direct connections to Mitch McConnell’s office or other power-players that Sara Weir, Rob Taishoff and the NDSS have. And the NDSS are not utilizing those connections or speaking up about it now.

In times of crisis, we look for who is MOST able to help in the fight.

Please. Join me in asking – no, demanding – that Sara Weir and the NDSS step up to take a strong stance against this devastating proposed piece of “healthcare” that will affect us all so drastically.

Join me in demanding that Sara Weir walk her talk about being at the table and “storming” the hill in defense of people with disabilities.

Join me in holding her accountable to do what we are paying her to do: we are paying her to help our kids and community stay safe, healthy and able to participate, through Medicaid and the continued Medicaid funding.

Join me in urging Sara Weir to use her intimate connections with Republicans  to halt this devastating proposed bill.

Her email address is: sweir@ndss.org

UPDATE:

I have posted all correspondence between Sara and myself HERE, along with form letter that she has sent to many blog readers when they write to her about these issues.

NDSS Board Members and emails that I have:

For More:

TrumpCare ToolKit

Information on WHAT TO DO NOW: Medicaid Will Be Gone Forever

On January 19, 2017 the National Down Syndrome Society (NDSS) made a statement on their public Facebook page reporting they had met with Betsy DeVos, the nominee for Secretary of Education. This meeting and this post happened in the absence of any prior statements decrying her nomination.

 

It perhaps goes without saying that DeVos’ nomination hearing was an abject disaster, making plain not only her absolute lack of qualifications to hold such a position but also her complete lack of preparation for the hearing itself. Her lack of qualifications alone should be cause for concern, but her comments on special education and the laws that govern it were particularly alarming.

 

So alarming that there has been enormous backlash from the disability community and parents alike, a situation creating unlikely allies even among staunchly politically divided individuals. So alarming that one would expect every organization that claims to represent the disability community to stand in firm opposition to her nomination.

 

Enter NDSS, the self-proclaimed “leading human rights organization” for individuals with Down syndrome. Instead of rallying its community of individuals with Down syndrome and their families, instead of giving us action steps to protest this nomination, instead of releasing a public statement condemning DeVos’ proposed trampling of civil rights, they met with Ms. DeVos and released a cheerful statement.

 

NDSS claims to be an organization that does not endorse candidates or nominees and inferred that to pass on the opportunity to meet with Ms. DeVos at this time would have been politically detrimental.

 

No other disability-related organization has met with Ms. DeVos as of yet, but it is reasonable to assume most will eventually work with her if she is, in fact, confirmed. This meeting was in no way politically necessary to ensure a working relationship with Ms. DeVos during her presumed tenure as Secretary of Education. Rather, this meeting and their praise of Ms. DeVos read merely as an endorsement of not only Ms. DeVos but also of her dangerous policies.

 

Timing is everything, and on this, NDSS got the timing horribly, embarrassingly wrong. NDSS made a political maneuver to place itself in a position of favor, but in doing so gave DeVos’ supporters an endorsement and a cheerful photo opportunity to use as an example of how the disability community supports her nomination.

 

NDSS went on to “applaud her commitment to special need families,” and stated that DeVos spoke of her “strong support and record fighting for special needs families.” This from a woman who days earlier, under oath, stated she planned to leave IDEA to the states and seemed confused as to what IDEA stands for or does for the disability community.

 

As the “leading human rights organization” for Down syndrome, we must hold NDSS to a much higher standard than a politically advantageous photo opportunity. That place of honor in this community comes with it a great deal of responsibility and, by necessity, the need for making moves that may not “feel good” but are ultimately right. It means skipping photo ops for hard hitting questions, it means rallying a community to action, and it means speaking truth to power: DeVos has no place anywhere near the Department of Education and this community will not stand for it.

 

Holding our advocacy organizations accountable for their actions can be daunting, and I feel it challenges our deeply held belief that we must sometimes go along to get along. We do it all the time in classrooms, IEP meetings, community events. After a while, we understand we cannot go in to every situation with our armor on if we want a net positive outcome down the road.

 

I’m telling you now that this is one time we must have our armor on. We must push back. NDSS is one of our direct lines of communication with the complex governing system up there on that hill. We must hold them accountable and be assured that they will fight for people with Down syndrome, even if that conversation is uncomfortable and doesn’t leave everyone smiling at the end.

 

Ms. DeVos is without doubt a danger to the civil rights of the community NDSS claims to represent. This goes beyond a mere difference in political opinion or varying ideas of how best to educate our children. There are ways to disagree with her nomination and ways to advocate that do not involve losing all political capital. It involves chipping away at that glossy exterior, though, that seems to accompany most things regarding Down syndrome “awareness.” It involves holding those that govern us accountable for their actions and letting them know that our community’s rights are not for sale.

 

I implore NDSS to step up and lead as we enter uncertain political times, to model for us effective political resistance when our community’s civil rights are at stake. As our human rights organization, it’s time to move past the photo opportunity.

About the Author of This Post

Melissa Stoltz is a writer, reader, policy wonk and mother of two. When she isn’t writing, you can find her watching episodes of Star Trek: TNG and knitting.

You can find her at her blog, Garden of My Heart

When we first received our son’s Down syndrome diagnosis in August of 2011, we were devastated, terrified and lost.

During a routine anatomy scan, the technician noticed an abnormality in our son’s heart, so we were sent for an immediate fetal echo. It was then confirmed that he had two separate congenital heart defects (ASD & VSD).  We were encouraged by the pediatric cardiologist to have an amnio if we wanted to know for sure if our son had Down syndrome. Down syndrome, I thought? How? All of my blood tests, nuchal screening, sonograms had been well within the ‘normal’ range. It was impossible? Wasn’t it? We decided to have the amnio. Within a 24-hour period, we learned that we would be having a son to add to our family full of daughters, that he would need open heart surgery sometime within his first six-months of life and that he would be born with Down syndrome.

To say that it was a lot to process is an understatement. I quickly realized that we had a huge learning curve to overcome before the time came to meet our little guy. I wasn’t sure where to start, but I knew that random internet searches would likely cause more worry than comfort, so I started with the only organization I had, sort of, remembered hearing about, the NDSS.

The first thing I saw on their website was this statement:

 

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.

 

I thought, “Wow, an entire organization committed to the VALUE, ACCEPTANCE and INCLUSION of people just like our boy. Maybe this won’t be so hard after all.” I then clicked through the New & Expectant Parents section, Local Support, and Resource section. The knot in my stomach began to give a bit and I researched on. Over the course of the next 20 weeks, I learned that Down syndrome did not mean the end of our familial happiness, that it didn’t mean our son would remain a ‘forever child.’ The possibilities were endless and I became determined to give our son the same opportunities that we have strived to give our other children…the opportunity to reach his FULL potential.

 

The months following his birth were spent in and out of the hospital, fighting to keep him healthy, fighting to get him to gain weight in order to endure his impending surgery. Those seven weeks felt like years, both wanting his surgery to be over and wishing it wasn’t necessary in the first place.  Carter had his open heart surgery at the impossibly young age of 7 weeks and a week later was at home and thriving. It was time to start our life with our new bundle.

cs5

We became very involved in our local Ds community and starting revving up the troops for our first Buddy Walk. The Buddy Walk would be our first experience as part of a much larger community, our first opportunity to surround ourselves with people who understood what a gift we had been given, and our first opportunity to see what life ‘may’ look like years down the road. We were pumped. I recruited a team of friends and family to walk with us and I set my mind to fundraising. The response from everyone we knew was overwhelming.  It touched us all to know that so many people were rooting for us, for Carter. We were “Carter’s Crusaders.” The money kept pouring in and, before I knew it, it seemed that we had raised more money than I ever thought possible. In fact, we learned we’d raised so much money that there would be a gold star with my name on it the day of the event. I thought, “A gold star! I got a gold star for Carter!” The day was magical, amazing, and everything I had hoped it would be.

cs2

Fast forward to this year.

A few months ago. I read a story about a young man with Down syndrome in Maryland, who had gone to the movies with a caretaker to watch “Zero Dark Thirty” on January 12th of this year. His caretaker left him inside the theater to retrieve the car. He decided he wanted to the see the movie again so returned to a seat in the empty theater. An employee of the theater asked him to leave; he didn’t, so security was called—which happened to be three off-duty deputies with the local department—who physically removed the young man from his seat, handcuffed him behind his back, and threw him to ground, where he died. I literally had to read the story over and over again to process what I had just read…he died over a movie? How is that possible? How can that happen? It did, and that young man was Ethan Saylor.

 

I became obsessed with trying to contribute in any small way that I could in helping his family get justice. All they have been asking for is an independent investigation. Sounds logical, right? It’s exactly what I think any parent would want. I also immediately thought of the NDSS. I thought, they must know, they must be doing something to help this family. This case has everything to do with human value, the value of this man’s life (a man with a diagnosis of Down syndrome), human rights, the right of every person to feel safe at the movies, in a mall, everywhere.  Surely the group claiming to be the national advocate for people with Ds is speaking up, I thought.  I kept searching for a statement from the NDSS, a call for action a call for community mobilization. A month and a half later, I found something.

 

February 21 – The first thing I read on the NDSS website regarding the case:  a press release from F.R.I.E.N.D.S., the local Ds organization in Maryland that was founded by Ethan’s mother. I couldn’t get past this part of that statement: “We have been in the past, and will continue to be, strong supporters of the Frederick County Sheriff’s Office.” This release from F.R.I.E.N.D.S. went hand-in-hand with a statement from the NDSS: “NDSS stands with our affiliate in Frederick County, Maryland in their response to the tragic incident involving Robert Ethan Saylor.”

http://www.ndss.org/About-NDSS/Newsroom/News-Archive/Robert-Ethan-Saylor/

 

The next thing included this statement: “NDSS is determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again.” Wait, no mention of an independent investigation? Yes, we should work to ensure this never happens again, but it happened. Where is the call for justice for this family?

http://www.ndss.org/About-NDSS/Newsroom/News-Archive/NDSS-Takes-Multiple-Actions-to-Prevent-Tragedies-Such-as-the-Death-of-Robert-Ethan-Saylor-from-Occurring-in-the-Future/

 

March 27 – “The ultimate goal of this collaborative effort will be to create a training program that can be easily accessed and flexible enough that all law enforcement and first responders nationwide can participate,” says NDSS President Jon Colman.” STILL no community mobilization, still no push for an independent investigation.

http://www.ndss.org/About-NDSS/Newsroom/News-Archive/Meeting-with-US-Department-of-Justice-/

 

April 10 – Finally, a letter to the Superintendent of the Maryland State Police asking for an independent investigation. BUT, still no call for community mobilization.

http://www.ndss.org/About-NDSS/Newsroom/Recent-News/An-Update-on-NDSS-Actions-in-Response-to-the-Death-of-Robert-Ethan-Saylor/Letter-to-the-Department-of-Maryland-State-Police-in-Response-to-the-Death-of-Robert-Ethan-Saylor/

 

April 23 – an Action Alert was sent with the contact information for someone in the DOJ – the incorrect information for that person.

 

April 24 – “Subsequent to our alert on Tuesday, April 23rd, we learned that the DOJ has heard the concerns of NDSS, NDSC, and our constituency. DOJ remains deeply concerned about the situation. We are confident that our efforts will yield a positive outcome, therefore, we no longer need emails and calls directed toward the DOJ’s Office of Civil Rights. We will keep you posted with updates and when timely advocacy is needed.” Wait, what? Now we’re being asked to stop trying to contact the DOJ because “they have heard our concerns” when the contact information we were given went nowhere? How is it, that in one day, without our messages reaching anyone at the DOJ, they heard “our concerns”?  I’m curious, does the NAACP send out calls for NO ACTION updates on issues that affect the community? Does GLAAD?  Does AUTISM SPEAKS?

http://myemail.constantcontact.com/Ethan-Saylor-Update-from-NDSC-and-NDSS.html?soid=1101343243561&aid=7P34VF0zbck

 

End of April – “Our statement focused on the need for training of law enforcement personnel to be able to diffuse situations in which they come in contact with an individual with a disability, who may not respond in a way that the personnel are familiar with or have seen before.” Wait, where’s the piece about an independent investigation?

http://www.ndss.org/About-NDSS/Newsroom/Recent-News/An-Update-on-NDSS-Actions-in-Response-to-the-Death-of-Robert-Ethan-Saylor/

 

Ethan’s story still has not been picked up by major news organizations.

Even after the story came out on April 30 that he suffered unexplained injuries:

The autopsy revealed Saylor had bruises and abrasions on his face and body. And another injury: a fracture to cartilage in Saylor’s throat. Experts say it’s an unusual injury to see in a choking case. A forensic pathologist not familiar with case says the injury happens from some kind of force.

http://your4state.com/fulltext/?nxd_id=306392

 

I enjoy reading the “My Great Story” pieces on the NDSS website.  I enjoy reading the news stories about the families that are fighting so that their daughter can be a cheerleader, or stories of teens with Down syndrome being crowned prom king or queen.

 

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 outlets? I would argue these stories are MORE important, and where our collective attention within the community should be focused—on righting the wrongs that befall people with intellectual disabilities EVERY SINGLE DAY. Certainly the HOMICIDE of a young man, who went to the movies and died while crying out for his mother, deserves our attention. Certainly we can all spare a few minutes of our time to reach out and help get justice for Ethan: http://hacklesupgiddyup.wordpress.com/2013/05/21/justiceforethan-whatcanido/

 

Yesterday I received an email from the NDSS asking my help in beta-testing their 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 back:

 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.

I can’t “separate the joys of the Buddy Walk program and the Ethan Saylor tragedy”—and frankly, the suggestion is just one more example of NDSS being out of touch. Communications “about the topic” (Ethan’s death) have not been balanced and professional from an organization which seeks to be the national leader in serving individuals with Down syndrome.  Is it balanced and professional to not demand justice for this family?

“Please take as much time as you need to think about it. Registration will remain open until event day.” – 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 the NDSS starts living its 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.

Two out of three doesn’t cut it for me.

Stacey Calcano

cs3

For More Information:

What Happened

Timely Tweets

When we first received our son’s Down syndrome diagnosis in August of 2011, we were devastated, terrified and lost.

During a routine anatomy scan, the technician noticed an abnormality in our son’s heart, so we were sent for an immediate fetal echo. It was then confirmed that he had two separate congenital heart defects (ASD & VSD).  We were encouraged by the pediatric cardiologist to have an amnio if we wanted to know for sure if our son had Down syndrome. Down syndrome, I thought? How? All of my blood tests, nuchal screening, sonograms had been well within the ‘normal’ range. It was impossible? Wasn’t it? We decided to have the amnio. Within a 24-hour period, we learned that we would be having a son to add to our family full of daughters, that he would need open heart surgery sometime within his first six-months of life and that he would be born with Down syndrome.

To say that it was a lot to process is an understatement. I quickly realized that we had a huge learning curve to overcome before the time came to meet our little guy. I wasn’t sure where to start, but I knew that random internet searches would likely cause more worry than comfort, so I started with the only organization I had, sort of, remembered hearing about, the NDSS.

The first thing I saw on their website was this statement:
 

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.

 
I thought, “Wow, an entire organization committed to the VALUE, ACCEPTANCE and INCLUSION of people just like our boy. Maybe this won’t be so hard after all.” I then clicked through the New & Expectant Parents section, Local Support, and Resource section. The knot in my stomach began to give a bit and I researched on. Over the course of the next 20 weeks, I learned that Down syndrome did not mean the end of our familial happiness, that it didn’t mean our son would remain a ‘forever child.’ The possibilities were endless and I became determined to give our son the same opportunities that we have strived to give our other children…the opportunity to reach his FULL potential.
 
The months following his birth were spent in and out of the hospital, fighting to keep him healthy, fighting to get him to gain weight in order to endure his impending surgery. Those seven weeks felt like years, both wanting his surgery to be over and wishing it wasn’t necessary in the first place.  Carter had his open heart surgery at the impossibly young age of 7 weeks and a week later was at home and thriving. It was time to start our life with our new bundle.
cs5
We became very involved in our local Ds community and starting revving up the troops for our first Buddy Walk. The Buddy Walk would be our first experience as part of a much larger community, our first opportunity to surround ourselves with people who understood what a gift we had been given, and our first opportunity to see what life ‘may’ look like years down the road. We were pumped. I recruited a team of friends and family to walk with us and I set my mind to fundraising. The response from everyone we knew was overwhelming.  It touched us all to know that so many people were rooting for us, for Carter. We were “Carter’s Crusaders.” The money kept pouring in and, before I knew it, it seemed that we had raised more money than I ever thought possible. In fact, we learned we’d raised so much money that there would be a gold star with my name on it the day of the event. I thought, “A gold star! I got a gold star for Carter!” The day was magical, amazing, and everything I had hoped it would be.
cs2

Fast forward to this year.

A few months ago. I read a story about a young man with Down syndrome in Maryland, who had gone to the movies with a caretaker to watch “Zero Dark Thirty” on January 12th of this year. His caretaker left him inside the theater to retrieve the car. He decided he wanted to the see the movie again so returned to a seat in the empty theater. An employee of the theater asked him to leave; he didn’t, so security was called—which happened to be three off-duty deputies with the local department—who physically removed the young man from his seat, handcuffed him behind his back, and threw him to ground, where he died. I literally had to read the story over and over again to process what I had just read…he died over a movie? How is that possible? How can that happen? It did, and that young man was Ethan Saylor.
 
I became obsessed with trying to contribute in any small way that I could in helping his family get justice. All they have been asking for is an independent investigation. Sounds logical, right? It’s exactly what I think any parent would want. I also immediately thought of the NDSS. I thought, they must know, they must be doing something to help this family. This case has everything to do with human value, the value of this man’s life (a man with a diagnosis of Down syndrome), human rights, the right of every person to feel safe at the movies, in a mall, everywhere.  Surely the group claiming to be the national advocate for people with Ds is speaking up, I thought.  I kept searching for a statement from the NDSS, a call for action a call for community mobilization. A month and a half later, I found something.
 
February 21 – The first thing I read on the NDSS website regarding the case:  a press release from F.R.I.E.N.D.S., the local Ds organization in Maryland that was founded by Ethan’s mother. I couldn’t get past this part of that statement: “We have been in the past, and will continue to be, strong supporters of the Frederick County Sheriff’s Office.” This release from F.R.I.E.N.D.S. went hand-in-hand with a statement from the NDSS: “NDSS stands with our affiliate in Frederick County, Maryland in their response to the tragic incident involving Robert Ethan Saylor.”
http://www.ndss.org/About-NDSS/Newsroom/News-Archive/Robert-Ethan-Saylor/
 
The next thing included this statement: “NDSS is determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again.” Wait, no mention of an independent investigation? Yes, we should work to ensure this never happens again, but it happened. Where is the call for justice for this family?
http://www.ndss.org/About-NDSS/Newsroom/News-Archive/NDSS-Takes-Multiple-Actions-to-Prevent-Tragedies-Such-as-the-Death-of-Robert-Ethan-Saylor-from-Occurring-in-the-Future/
 
March 27 – “The ultimate goal of this collaborative effort will be to create a training program that can be easily accessed and flexible enough that all law enforcement and first responders nationwide can participate,” says NDSS President Jon Colman.” STILL no community mobilization, still no push for an independent investigation.
http://www.ndss.org/About-NDSS/Newsroom/News-Archive/Meeting-with-US-Department-of-Justice-/
 
April 10 – Finally, a letter to the Superintendent of the Maryland State Police asking for an independent investigation. BUT, still no call for community mobilization.
http://www.ndss.org/About-NDSS/Newsroom/Recent-News/An-Update-on-NDSS-Actions-in-Response-to-the-Death-of-Robert-Ethan-Saylor/Letter-to-the-Department-of-Maryland-State-Police-in-Response-to-the-Death-of-Robert-Ethan-Saylor/
 
April 23 – an Action Alert was sent with the contact information for someone in the DOJ – the incorrect information for that person.
 
April 24 – “Subsequent to our alert on Tuesday, April 23rd, we learned that the DOJ has heard the concerns of NDSS, NDSC, and our constituency. DOJ remains deeply concerned about the situation. We are confident that our efforts will yield a positive outcome, therefore, we no longer need emails and calls directed toward the DOJ’s Office of Civil Rights. We will keep you posted with updates and when timely advocacy is needed.” Wait, what? Now we’re being asked to stop trying to contact the DOJ because “they have heard our concerns” when the contact information we were given went nowhere? How is it, that in one day, without our messages reaching anyone at the DOJ, they heard “our concerns”?  I’m curious, does the NAACP send out calls for NO ACTION updates on issues that affect the community? Does GLAAD?  Does AUTISM SPEAKS?
http://myemail.constantcontact.com/Ethan-Saylor-Update-from-NDSC-and-NDSS.html?soid=1101343243561&aid=7P34VF0zbck
 
End of April – “Our statement focused on the need for training of law enforcement personnel to be able to diffuse situations in which they come in contact with an individual with a disability, who may not respond in a way that the personnel are familiar with or have seen before.” Wait, where’s the piece about an independent investigation?
http://www.ndss.org/About-NDSS/Newsroom/Recent-News/An-Update-on-NDSS-Actions-in-Response-to-the-Death-of-Robert-Ethan-Saylor/
 

Ethan’s story still has not been picked up by major news organizations.

Even after the story came out on April 30 that he suffered unexplained injuries:

The autopsy revealed Saylor had bruises and abrasions on his face and body. And another injury: a fracture to cartilage in Saylor’s throat. Experts say it’s an unusual injury to see in a choking case. A forensic pathologist not familiar with case says the injury happens from some kind of force.

http://your4state.com/fulltext/?nxd_id=306392
 
I enjoy reading the “My Great Story” pieces on the NDSS website.  I enjoy reading the news stories about the families that are fighting so that their daughter can be a cheerleader, or stories of teens with Down syndrome being crowned prom king or queen.
 
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 outlets? I would argue these stories are MORE important, and where our collective attention within the community should be focused—on righting the wrongs that befall people with intellectual disabilities EVERY SINGLE DAY. Certainly the HOMICIDE of a young man, who went to the movies and died while crying out for his mother, deserves our attention. Certainly we can all spare a few minutes of our time to reach out and help get justice for Ethan: http://hacklesupgiddyup.wordpress.com/2013/05/21/justiceforethan-whatcanido/
 
Yesterday I received an email from the NDSS asking my help in beta-testing their 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 back:

 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.

I can’t “separate the joys of the Buddy Walk program and the Ethan Saylor tragedy”—and frankly, the suggestion is just one more example of NDSS being out of touch. Communications “about the topic” (Ethan’s death) have not been balanced and professional from an organization which seeks to be the national leader in serving individuals with Down syndrome.  Is it balanced and professional to not demand justice for this family?
“Please take as much time as you need to think about it. Registration will remain open until event day.” – 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 the NDSS starts living its 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.

Two out of three doesn’t cut it for me.

Stacey Calcano
cs3
For More Information:
What Happened
Timely Tweets

I have no doubt that this post is going to make me seem like a great queen bitch, but yesterday was Martin Luther King Jr Day, and as he so famously said, “our lives begin to be over the day the we are silent about things that matter.”
 
One thing that matters a lot to me is accountability.
 
Blogger Kelle Hampton is raising money in honour of her daughter Nella. In case you are not familiar with any of this, her daughter Nella is the small person whose birth surprise gift of an extra chromosome rocked Kelle’s world and sprung from her the famous birth story. Well, it seems that Kelle raises $100,000 for each year that Nella has been brightening the planet: when she was one year old, it was $100,000, 2 was $200,000. This year she is 3, so yeah, that means $300,000.
 
Every penny of the money is given to the NDSS, the National Down Syndrome Society.
 
This is the part where I start squinting.
 
You see, Kelle created a great little clip of a video. Well, to be honest, it just seems like it was great – it didn’t have captions and I couldn’t hear a lot of it because of the music. The music was fun and the rest of the video seemed really spot-on; I liked all of the people with Down syndrome speaking for themselves. I do wish I didn’t have to rely on lip reading to get what I did of what they said, but there you have it.
 
Anyway, the video is here, In the text after the clip, she goes on to talk about how she’s trying to “raise awareness” and “create opportunities” for people with Down syndrome with all the money that is being raised.
 
“Raising awareness” and “create opportunities” – two fantastic little phrases that can be so vague and yet sound so great.
 
Hey, let’s “raise awareness!” Let’s raise a whole bunch of money and “create opportunties”!! – only, if you follow the links to the NDSS site, there isn’t any mention at all of how the money is actually used or any type of accountability whatsoever.
 
It’s like this happy pit. You can throw your money in, “$5 for every time you thoughtlessly used the “r” word”, as one woman commented on instagram. You can do it to feel good, feel better about yourself, about “opportunities” for people with intellectual disabilities. Give your ten bucks, you care, you are a good person.
 
Right?
 
And NDSS is that bastion of greatness, right?
 
It might be so and it might be that I’m a horrible, terrible, no-good person to even be asking these questions, but I would dearly love to see a little transparency in this. I’d like the NDSS to have a spreadsheet showing how they used every dollar that was donated in the name of Nella, and prove how those dollars actually have “created opportunities” for people with Down syndrome.
 
Don’t get me wrong: I want those opportunities. I want that awareness. I want the happy and I want the full money pit for people with Down syndrome. Maybe that’s where these questions are coming from – I want something from the NDSS proving that they really are using it for the reason people are giving it.
 

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