You know one thing that Trayvon Martin has that Ethan doesn’t?

In addition to full support from within his own racial community, he has the full support of allies and advocates for racial equality and diversity.

Ethan doesn’t have that.

Ethan does have the full support of the disability community – but he does not have the full support of allies and advocates for Down syndrome.

Allies and advocates for Trayvon’s case are not saying, “yeeeeeeeeeeeeeeeeaaaaaaaaaaaaaaaaah, well, mayyyyyyyyyyyybe he shouldn’t have worn that hoodie quite so low, I mean they have a point there, he really did look kind of suspicious!”

They are not saying, “you know, my cousin/sister/brother/nephew who is really dark skinned? yeah… he gets pretty aggressive and so, well, I can understand this happening…”

They are not saying, “skittles? oh those are full of sugar! and so is sweet tea! all that sugar must have caused him to just explode when threatened with his life…. so I don’t know… yeah… maybe they have a point there? who knows… hmm… LET’S HAVE A TRAINING SESSION!

Nope, they sure aren’t, folks. The allies and advocates for racial equality and for diversity are simultaneously heartbroken and spitting mad.

But there is no question within that community that Trayvon’s killer was in the wrong, that his killer was a psycho nutbag that needs to be locked away, not just for justice, but for the future safety of all. Because, as it has been said, letting Zimmerman get away with this is “rewarding sick aggression without cause.”

But you know what? Ethan doesn’t even have that level of universal outrage.

Plenty of people who are allies and advocates by and for Down syndrome equality and for diversity have shoo-shawwed and hem-hawwed Ethan’s murder, talking their way around the fact that 3 security guards held down this man and brutally killed him.

That is to say, Ethan doesn’t even have the full support of people who are supposed to be ON HIS SIDE.

What can you do?

1. Emma Saylor, Ethan’s sister, has started a Facebook page, #justiceforethan. Please join

2. If you are attending the NDSC next week, please connect with Emma and with Ethan’s mother, Patti. There will be sessions and groups brainstorming what the next steps should be, and information.

3. Write  Maryland Governor Martin O’Malley as he has the authority to  open an investigation. Call scripts with talking points, email templates, etc and more information are here.

4. Social media for Governor O’Malley: Twitter: @GovernorOMalley * Facebook: https://www.facebook.com/MDGov

5. Donate:  Send a PayPal donation to EthanSaylorFund@gmail.com.  you do not need a paypal account; it’s a gift


I won’t be at the NDSC but I will be waiting here and tuning into the Facebook page for more information and to see how I can also help.

Stay tuned.





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.


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.


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.”



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?



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.



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.



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?



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?



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.



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


For More Information:

What Happened

Timely Tweets

Don’t get me wrong here, okay?

I like training. After all, as a former professional trainer, it was my bread and butter for more than a decade.

I like them. I like that they can be fun, I like the learning, I like that they are usually bite-sized and digestible so not terribly unpopular with the people that have to go to them, you know, for work. Most all jobs, after all,  mandate one type of training or another at some point – anything from sexual harassment, to learning another language; from “communication in the workplace”, to dealing with stress or grief… or yeah,  disability.

As far as disability trainings are concerned, they come in lots of packages, from things related to disability etiquette, people first language, how to get along with your colleague who has a disability… and so on. You name it. From the absurd to the incredibly practical, it’s out there. Your pick.

So. Who picks? And who delivers? What’s it all about?

I’m going to be really upfront here.

The picking and choosing of who delivers a training is usually based on reputation and contacts. Every single one of my choicest training jobs back when I was a trainer was because of who I knew. And honestly, that’s completely normal.
People like to hire who they know and like.

There is usually good money involved. Training  jobs are usually desirable. Most places, especially state/government agencies, have a certain number of dollars set up in their yearly budgets that must go to training. Since they usually have a set amount of money that must go to training, they can end up scrambling to come up with a training that looks like they have done well and good. They often pay more than they should and don’t quibble over seat prices – after all, it’s in the budget and the budget needs to be spent else Accounting might think they have too much and take it away.

Okay, are you still with me?

Good. Let’s take a little look at the Ethan Saylor case.

What’s happening now is the NDSS/NDSC is pushing training all over the freaking map. They whimper “independent investigation” as they pummel “TRAINING!”

Training is the easy, feel-good approach to this.

Training will also bring money to NDSS/NDSC –

Why? Because who else is in place to deliver those trainings once it’s mandated that the police need them? (and on that, please read this post   then this post ). The NATIONAL DOWN SYNDROME SOCIETY! THE NATIONAL DOWN SYNDROME CONGRESS!

There is money involved here, people. Those Nationals get MONEY when they get the training ticket passed through. They will get lots and lots of money pouring into their coffers from the state and government, money that will say “TRAINING” on it, and those trainings can be handled pretty much any way they want.

This is honestly so repulsive and disgusting to me that when all of this connected in my head, bile rose.


Training makes money. Those Nationals are pushing for what is going to make them money.

Training is also easy – everyone wants it because they think that it’s going to make a real difference a person’s outlook on life in a session or two.

But I’ll tell you this: it makes precious none, no difference at all. You can be the best trainer in the world (and I was a pretty good one, if I say so myself) but when people walk into that room, there is no way on earth your 45 minutes or 1-day session with them is going to trump 30+ years of life.

It’s just not.

The real training is always going to start from the home and from yourself. Want your kids to be fair and treat others with courtesy, compassion and respect? They you have to treat people that way because your kids are watching you and that’s the real training that is going on in the world.

That’s the long-term view on it and it’s also the logical truth, but you can’t say, “okay, let’s all treat each other the way we know we should” and let that be the end and all when Ethan Saylor was killed. You can’t say that when Ethan Saylor was held down and suffocated to death.


This is what I want to know: if those 3 officers that killed him were met with justice, wouldn’t that provide the best type of “training” possible? It would set an example that would ring loud and shine brightly across this country.

But we can’t even say what type of justice that would be because the independent investigation hasn’t even happened.

And why is that?

Oh right. Because the organizations with the real power and ability to call for that – the NDSS and NDSC – are only pushing for TRAINING.

The one piece in any of this that stands the chance to earn them a buck or three.

On the back of Ethan Saylor.


What you can do:

Please join advocates from across the country in a town hall meeting on Tuesday, April 23 at 12:00 pm ET for an update from NDSC and NDSS on their progress in the Ethan Saylor case.

According to NDSC and NDSS, “Participants will hear more and have the opportunity to voice questions.”

Join the meeting at noon on Tuesday by dialing 877-410-5657 and enter the passcode 69126.


Tweet: #justiceforethan (tweetsheet is here; twitter handles are here), we are tweeting throughout the week but with a concentration on Thursdays until there is #justiceforethan: an independent investigation

Call the Department of Justice – (202) 307-5138

Tell them that you would like an independent investigation on the Robert “Ethan” Saylor case

change.org petition calling for an independent investigation: https://www.change.org/petitions/justice-for-robert-saylor


please read more posts as well as add your own if you have one/know of one:

The T21 Writer’s Alliance

More To Read:

A Step Backwards for Down syndrome Advocacy, by Down Wit Dat

What Happened, by Melissa Stoltz

An Open Letter to NDSS & NDSC, by Melissa Stoltz

Ethan Saylor Homicide, by Bobby’s Mama (full of excellent questions)

photo 3



A young man was killed almost 3 months ago. His death was ruled a homicide. The perpetrators got off with a hand tap because the man had Down syndrome.

This is what we know.

A man was killed.

His death was ruled a homicide.

The perpetrators got off with a hand tap because the man had Down syndrome.

Now replace “Down syndrome” with any other word.

  • The perpetrators got off with a hand tap because the man was black.
  • The perpetrators got off with a hand tap because the man was Asian.
  • The perpetrators got off with a hand tap because the man was obese.
  • The perpetrators got off with a hand tap because the man had a bone marrow disease.
  • The perpetrators got off with a hand tap because the man was Deaf.
  • The perpetrators got off with a hand tap because the man used a prosthesis.
  • The perpetrators got off with a hand tap because the man had testicular cancer.
  • The perpetrators got off with a hand tap because the man had blonde hair.

is this becoming clear?

The man was killed. Robert Ethan Saylor was killed.


His death was ruled a homicide.


And rather than looking at the actions of the men who killed him, rather than taking a good hard look at what they did to force death upon Robert Ethan Saylor, they are holding up DOWN SYNDROME, this man’s extra chromosome, and saying  that IT, and not THEY, are the culprit.

This is about human rights, people.

Ethan Saylor had the right to live.

We need to care about this. Ethan was one of our own; he was a member of the community with disability,  he was a loved human being who deserved so, so much more.

Show that you care.

Show that you want justice for him.

Call for an independent investigation. Tell the Department of Justice that YOU ARE THE COMMUNITY and you WILL BE HEARD; demand justice.

Friday, April 12th marks 3 months since he was killed.

We will be striving to reach journalists, celebrities, media personalities and more through twitter – people who have loud, huge voices that can help us call out across the masses. We will be asking for justice for ethan: #justiceforethan.


He will, so long as we all unite and demand that it happen.

What to do:

SIGN and share the change.org petition that was started by Ethan’s mother. HERE IT IS. There are a lot of petitions out there, please be sure this is the one that you have signed and shared

 JOIN the #justiceforethan twitter campaign. Our plan is to get the attention of those who have louder voices that can reach across the masses and get action. We are going to have tweeting parties (tune in for details), but you do not have to wait for the party: get started tweeting and don’t stop! (see “Twitter Handles” and “Timely Tweets” below)

Twitter 101: for those of  you that are new to twitter: your handy directory on terms and how-to utilize twitter

Twitter Handles: the direct handles on people that are likely to be sympathetic to this campaign, allies/champions

Timely Tweets: Have a hard time coming up with something to say? A collection of useful twitter-ready tweets has been crafted for your use by Melissa Stoltz! http://wp.me/P2ZfJC-23i

  • “Join us in our push for #justiceforethan”
  • “Love someone with Down syndrome? Join us in our push for #justiceforethan”
  • “Disability rights are human rights. #justiceforethan”
  • “Death ruled homicide, cops walk free. We need #justiceforethan”
  • “Down syndrome isn’t a cause of death. #justiceforethan”
  • “No one should die over a movie ticket. #justiceforethan”

Shortlink for neutral post by Melissa Stoltz on what happened: http://wp.me/P2ZfJC-23c – use this link for tweets, especially to media

The button: Share the button, put it on your blog/site, update your facebook status photo – get the word OUT!






Call the Department of Justice – (202) 307-5138

Tell them that you would like an independent investigation on the Robert “Ethan” Saylor case

change.org petition calling for an independent investigation: https://www.change.org/petitions/justice-for-robert-saylor

4/10 UPDATE: #justiceforethan

Twitter Rally: THURSDAY, April 11th, 9pm EST, 8pm CST, 7pm MST, 6pm PST. Have your Twitter Handle sheet ready along with your TweetSheet (if you need it). When the clock hits your respective timezone, log into Twitter. Start tweeting.

This is the thing: it doesn’t matter how many followers you have. It doesn’t matter at all. What matters is the sheer volume of tweets we can send to the people listed, and the number of times we can raise the hashtag #justiceforethan. If you have a lot of followers, that’s cool – the people who follow you may choose to join – but it’s not necessary, so don’t worry if it’s just you and your best friend. That’s fine.

Vigil: On the evening marking nearly 3 months since Ethan lost his life, join us in remembering his life and in marking in our hearts the injustice done to Ethan. Take a moment to light a candle, eat some pizza and listen to Bob Marley (something Ethan loved doing). Thursday, April 11th.

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