Category Archives: Ethan’s Law

My #ADA25 Story and A Glass Half Full?

By: Stephanie Holland

25th Anniversary CakeThis week has been one of well-earned celebration and thoughtful reflection on the 25th anniversary of the passage of the Americans with Disabilities Act. So far I’ve been listening from the edges, reluctant to put my 2 cents in, but today I was inspired by two things: a White House event and an old opinion piece. I think I’ve finally got an appropriate mix of “jaded by history” and cautious optimism to write my own perspective with some kind of balance.

Yesterday I wrote a response piece about sharing a parent’s perspective on social media. Today I was excited to change gears and listen to some of today’s top disability advocates talk about their experiences. The honorees of the White House Champions of Change – Disability Advocates Across Generations did not disappoint.  Almost immediately after the speeches ended, I found Andrew Pulrang’s post to his column Disability Thinking called “I Was So Young.” Now, I’m ready

Continue reading My #ADA25 Story and A Glass Half Full?

Phoenix Recap – NDSC15

By: Stephanie Holland
This year the annual NDSC convention was held in sunny Phoenix, Arizona.  The 100+ degree weather made things outside of the conference venue a bit sticky, but inside everything was “cool.”  If I had to sum up my own experience this year I would use these three words: collaboration, friendship, and hope.
As you can see from the picture above, our table in the exhibit hall Stephanie Holland, Mardra Sikora, & Jennifer Smolkadid triple duty this year – Jennifer Smolka was gracious enough to
share her spot for 321 eLearning with The Road and Marianne from Joey’s Ups with Downs. We all w
ork together throughout the year on webinars and the 321 eConference, and at the NDSC gathering we got to work side by side.
Jennifer, Marianne, Mardra, and I got to be all together in person for the first time!

Continue reading Phoenix Recap – NDSC15

A Week of Milestones on the Road to #JusticeForEthan

#EthansLegacyFor two long years, Patti Saylor has advocated for change after the death of her precious Ethan. It has meant long hours, countless miles of travel and hours in meetings. The emotional toll of reliving that terrible evening over and over as she raises awareness and tries to ensure that something like this never happens again is unfathomable.
The Down syndrome and disability communities have been behind her, helping when and where we could, but for Patti and her family, this has been a very personal journey. There is good news however! This has been a week of breakthroughs worth celebrating! Today, I want to take a moment and update our community on some of the phenomenal progress that has been made, and celebrate Patti, the Saylor/Richmond families, and the thousands of people who have been touched in some way by #EthansLegacy.

Continue reading A Week of Milestones on the Road to #JusticeForEthan

Justice for All

By: Eliana Peck and Stephanie Holland 

Justice on The Road We've SharedJustice is something of a hot topic lately.  News reports of another person with a disability being mistreated or lost in the system seem to appear daily. One organization that focuses solely on finding justice for our loved ones is the National Center on Criminal Justice & Disability (NCCJD).

Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers. 
~ David Perry – The Atlantic

Why do police keep seeing a person’s disability as a provocation? Cops keep wrongfully killing the intellectually or psychiatrically impaired. ~  Harold Braswell – Washington Post

We asked the The Arc NCCJD to tell us a bit about what they do, and how it relates to a cause near and dear to us here on The Road – #JusticeForEthan.  Our thanks goes to Eliana Peck and the rest of the staff at NCCJD for what they do and for taking the time to write this post!

Continue reading Justice for All

GrassRoots Advocacy

By: Edward Rhodes & Stephanie Holland
Today we look at grassroots advocacy and what can happen when – as Margaret Mead said and fictional President Bartlett borrowed- a small group of people become committed to change.
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
~Margaret Mead


Our guest blogger today, put down his camera long enough to write about the process of making “Justice For Ethan –  The Movie” and what he sees as #EthansLegacy.


Continue reading GrassRoots Advocacy

Our Day in Annapolis

By Stephanie Holland
Annapolis, MDIt was a proud moment for Ethan’s family and all those who have worked in the #JusticeForEthan movement. Watching the Maryland Senate Finance Committee discuss the creation of a groundbreaking approach to training those in the public sector, including law enforcement and first responders, I could feel the empathy and resolve that filled the room.

Ethan Saylor Center for Self-Advocates as Educators

Thanks to NDSS President Sara Weir for posting this group picture on her new blog!

Continue reading Our Day in Annapolis

WWMLKD? – Civil Rights and Down Syndrome

If he was here, what would Dr. Martin Luther King Jr. say and do about the current issues in our community?
Today, as we celebrate Dr.King’s impact on our world, it’s a good time to reflect on our advocacy in the disability community.  Most would agree that MLK would have something to say about the rallies and demonstrations around race and policing.  Would he branch out and extend his hand to include the disability community in his work?  I think he would.  While some question, and even criticize efforts to widen the discussion of improved policing to include other disenfranchised groups, I believe Dr. King would be among the first to emphasize that #AllLivesMatter.

Continue reading WWMLKD? – Civil Rights and Down Syndrome

Md Commission on Inclusion – Ethan Saylor’s Legacy is About Much More than Training

This is one time that I am happy to be proven wrong!  There was a great deal of “spirited debate” about Governor O’Malley’s response to Emma’s petition on  Some of us were disappointed that he only committed to one of the two requests: training, but not an independent investigation.  Some thought “training” was meant to placate a grieving family – a political move more than a real solution.  Some even thought training would be dangerous and serve to further stigmatize our loved ones.

The Right Leadership

Tim Shriver

I for one, was more hopeful about the Commission once I heard who was going to be at the helm.  If anyone could take the opportunity and make the best of it – it was Tim Shriver.

Behind the Headlines

Continue reading Md Commission on Inclusion – Ethan Saylor’s Legacy is About Much More than Training

Why We Are Still Talking About Ethan Saylor

Many of our community, when we hear the name Ethan Saylor, get a battle weary sensation tingling under the skin, and an ache that surrounds our heart. So much for “justice” and all that that implies…I know. I get it. However, I’m going to ask that you continue to read and keep talking about Ethan and I’ll tell you why.

Remembering Ethan Saylor

First, because change cannot come if people give up asking for it. Ethan’s life was too high a price to pay. Before the name Ethan Saylor came into my vision, I had no idea how unjust the system is when it comes to police accountability and inquiries. With all of the recent grand jury scrutinization, it is important that we keep talking about the need for independent investigations and how the death of Ethan Saylor at the hands of three off duty officers is not something to be swept under the rug; his life had value and those who stole him from his family and his community should be held accountable.

#JusticeForEthan must remind and rally us to hold officers accountable as we move forward. I wish I knew how to do this more concretely, but I hope if we keep talking about it we’ll find someone who can make this change. Have you read about Michael Bell and what his father has learned and done since his son was killed by police?  Change doesn’t happen in silence. Well, actually, some change does happen in silence, and it is the scariest. We cannot allow silent changes, we have to be a part of the noise. David Perry speaks to the cult of compliance , his determination to voice on this subject ranges across platforms. Ethan’s life has been one of many, too many, to be lost without consequence.  

Continue reading Why We Are Still Talking About Ethan Saylor

2 Years Later – we Will Not Forget! #JusticeForEthan #MommyItHurt

New Light

It’s been nearly two years since one of our own perished on the floor of his local movie theater.

As the world joins the discussion about police interactions with the public, new attention has been given to our personal struggle.  Ethan’s case has been compared to that of Eric Garner, the man who was choked to death by police on Staten Island.

A recent NY Times article:

Mr. Garner’s death recalls a similar tragedy involving a less familiar name: Robert Ethan Saylor, a 26-year-old man with Down syndrome who was killed last year in a struggle with three off-duty county sheriff’s deputies at a movie theater in Frederick County, Md. Mr. Saylor was overweight. The officers who killed him were just as inept as Officer Pantaleo and his gang, though with one key difference: When they realized that Mr. Saylor was in distress, they tried to save him. Still, their efforts came too late, because mere moments in a facedown arrest can be deadly.

Yesterday, a video was uploaded to You Tube and tweeted with the #JusticeForEthan hashtag.
The scenes with an animated representation of the struggle between Ethan and the deputies is difficult to watch, but the two minute+ video contains a good synopsis of the facts as we know them.

Continue reading 2 Years Later – we Will Not Forget! #JusticeForEthan #MommyItHurt