Our Land: Justice For Ethan and Sharing Grief with Strangers

Today’s Our Land author isn’t somebody that I knew prior to her submitting today’s story but I’m so glad that I know her now. Stephanie’s heart and advocacy is nothing short of miraculous and her dedication to raising awareness in the special needs community is what Our Land is about.

Our Land: #Justice For Ethan and Sharing Grief with Strangers – Stephanie Holland

On January 12, 2013, tragedy struck in my world.  As I sat scrolling through the Facebook posts of the next day, two familiar faces popped up in my news feed.  It was a picture of two children I had known many years ago.  My heart smiled from the memories evoked by the photo; my mind froze when I read the caption:

“Ethan was one of my best friends when I was younger…..he sadly passed away this weekend and will be missed.” — with Patti Richmond and Ethan Saylor. (January 13, 2013)

I literally could not believe my eyes.  I raced to find a way to discredit the information.  It simply wasn’t true – or so I hoped.  I searched the Facebook walls of each of Ethan’s immediate family members that I had known for over 20 years.  Finally, I sent a text message to one of my dearest friends, Ethan’s Aunt Terri:  “What happened? ☹”  was all I could manage. Within minutes the phone rang.  Through tears I could hear Terri’s shattered voice say “Steph, he’s gone.”

During the days and weeks that followed, pieces of the story began to present themselves.  Some of them came from conversations with family, but for the most part I spent every waking minute scouring the internet for clues from the news media.

The headlines told the story to the world:

 

The family and those close to them were heartbroken.  The rest of the Down syndrome community was scared and angry.  Everyone expressed their grief in different ways.  Some railed against police brutality.  Some bemoaned the continued discrimination against people who have intellectual and developmental disabilities.  We looked for any and every avenue to get the story out to the general public, with little success.  Parents contacted their local news agencies across the country, begging them to cover the story and provoke local law enforcement to respond by discussing training and protocol in their area.  Blogs were posted on a regular basis – one father even created his own movement.  Another Dad concentrated on what he called the “cult of compliance” in law enforcement – a story that continues to have national relevance. 

Over 34,000 people signed a petition written by Ethan’s sister calling for an independent investigation and improved police training. 

People came together via social media to show their support for Ethan’s family.  The outpouring of love, grief, anger, and fear was the impetus for action.  Once Ethan’s Mom, Patti, was able to process her initial feelings and begin to get past the incredible shock, she focused on advocacy.  The voices of other parents gave her strength to ask for help from our national organizations.  The groups responded and got involved.  Patti reached out on a local and national level, even testifying in front of a Senate committee. 

As someone who knew Ethan and his family, it was bittersweet to watch.  I loved that people were trying to help in whatever way they could: writing letters, making phone calls, posting and sharing online.  I was also furious at the lack of national media attention.  The story barely made it out of the metropolitan DC/Baltimore/Virginia area.  Advocates wrote to celebrities who had a family member with Down syndrome, hoping a personal connection would convince them to get involved.  No one responded.  So many questions remained after the official report (which took months) and the sheriff’s office that was involved refused to make any public statements.  The silence was defining. 

A year later I decided that I could not let the circle of support that was created during #JusticeForEthan just fade away.  I invited two of the other Moms I had met through their advocacy for Ethan to join me in creating a new community for parents of adults who have Down syndrome.  It was painfully obvious over the previous 12 months that there was no venue for connecting our voices about issues that mattered to us.  They instantly agreed to join me and The Road We’ve Shared was created in Ethan’s honor. 

The truest and most emotional testimony to Ethan’s legacy came when I traveled to Indianapolis for the National Down Syndrome Congress yearly convention.  I had been a regular participant when my son, (who is two weeks younger than Ethan and born in the same hospital, delivered by the same midwife) was young.  Life took over and I hadn’t been able to attend for many years.   This year it seemed imperative for me to go to support my friend Patti and in to introduce our new community to a wider audience.

It was one of the most emotional experiences I have ever had.  Some of it was to be expected, and I had prepared myself.  Some of it caught me completely off guard. 

The gathering of so many people who have an extra chromosome is awe inspiring for parents.  During those precious hours “people watching” takes on a new meaning. 

After the first half-hour my teeth actually hurt from smiling so much.  I simply can not explain the emotions involved with seeing so many beautiful faces, of every age, gathered in one place.

There were presentations of amazing achievements by people who have Down syndrome and their families.  So much new information and training, discussions, formal and informal, that I was completely engulfed by the experience. 

Then, I saw Patti.  I had prepared myself for seeing her in this environment again.  The last conference like this that we attended together was under completely different circumstances.  I knew it would affect me, but I was determined to be there for her – to be a familiar face that she could count on for support.  I anticipated a great deal of tears to be shed at the film debut.  The director was there and he could help explain the process of making Justice For Ethan – the documentary.  The National Down Syndrome Congress was also giving Patti an award for her advocacy.  That would take place in dining hall full of people.  Hopefully I could keep it together in that kind of environment.

What I didn’t expect was the outpouring of emotion in the hallways of hotel that housed the convention.  Everywhere Patti went she was greeted by strangers who recognized her from pictures in the news or the #JusticeForEthan buttons that we both wore.  Some asked me questions like “What’s new with his case?,” but there were some who struggled to find the words they wanted to say. 

“Are you…?” was sometimes all they could muster before the tears came flowing down their faces. 

Patti graciously met all of their requests. “Can I give you a hug?” was frequently heard.

Mothers with babies in strollers, men with their adult children by their sides, advocates and professionals from all walks of life melted in her presence.

Throughout it all, Patti was amazing.  When I’d ask if she was okay, she’d say “They haven’t had the time to process it like I have” or “I know it’s overwhelming.” 

She took it all in her stride until she met a young man in the exhibit hall that had an uncanny resemblance to Ethan.  His physical features and mannerisms reminded her so much of why she was there it took her breath away.  She told me “I warned his parents that if he turns up missing, he’s with me.”  They understood and allowed her to grieve with them.

It was 72 hours of shared grief like I had never experienced before. 

Laughter and fond memories made appearances too – usually late at night in the quiet of our hotel room.

Throughout the past 21 months I’ve seen the power of empathy in action. 

Ethan never leaves my thoughts and prayers.  I know I’m not alone in this.  What was easily the worst experience imaginable for any family has inspired others.  Patti continues to have good and bad days.  Every so often she’ll post a brief message to her friends and family – the numbers of which have multiplied exponentially – and remember Ethan or express her pain.  Whenever this happens, the support she gets is amazing.  Some names I recognize as acquaintances from my home town where Ethan grew up.   Many come from people who were strangers until that day.  Those are the voices that make me grateful to live in “Our Land.”

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Stephanie is Josh’s mom, and has a MA in Critical disability studies from York, University in Toronto.  She’s blogs at WalkersvilleMom and is the founder of The Road We’ve Shared  – an online community by and for parents and caregivers of adults who have Down syndrome. Connect with her on Twitter or Twitter Road We’ve Shared, Instagram (@theroadweveshared), Pinterest, and Facebook at Walkersville Mom Blog or The Road We’ve Shared.