www.baltimoresun.com/news/opinion/oped/bs-ed-down-syndrome-20130621,0,2091487.story

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Ethan Saylor's death a tragedy that must not be repeated

Killing of man with Down syndrome shows need for better-trained police, more education and compassion in society

By Elizabeth Zogby

6:00 AM EDT, June 24, 2013

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On Jan. 12, Robert Ethan Saylor, a 26-year-old man with Down syndrome, died at the Regal Westview movie theater in Frederick. I did not know Mr. Saylor or his family, but I can't get his tragic death off my mind.

Mr. Saylor liked the movie he saw, "Zero Dark Thirty" — he liked it so much that he wanted to watch it again. While his support staff person went to retrieve the car, Mr. Saylor returned to his seat in the theater. When he told the moonlighting sheriff's deputies providing security that he wanted to stay and watch the movie again, and refused to get up, the officers tried to physically remove him. Restrained face-down and handcuffed, Mr. Saylor died from asphyxiation caused by a crushed larynx. After an internal investigation, with little or no information released to the public or the Saylor family, the officers were cleared of any wrongdoing and are back on full duty.

I live about 50 miles from the theater where Mr. Saylor died, in Baltimore City, with my husband and three children, including my 21/2-year-old daughter, named Hope, who has Down syndrome. The national Down syndrome community is asking for an independent investigation of this incident and that the results of that inquiry be made public. In the near term, both Mr. Saylor's family and our community need justice and accountability.

But in the longer term, I need more than that. This tragedy not only took a beloved son away from his family but also has struck a chord of fear in many families across the country. Those of us who have a loved one with Down syndrome need reassurance that those sworn to protect us will not be guilty of victimizing our most vulnerable fellow citizens because of communication challenges, misunderstandings or a simple lack of patience. In the longer term, we need education and compassion.

Down syndrome is the most frequently occurring chromosomal disorder and the leading cause of intellectual and developmental delay in the United States. The Centers for Disease Control and Prevention estimates the frequency of Down syndrome is 1 in 691 live births. In recent years there has been a drastic increase in the lifespan of people with Down syndrome, with a current average of about 60 years, because of incredible advances in the provision of health care and early intervention services. Many of these advances are the result of research done here in Maryland — for example, by Dr. George Capone at the Kennedy Krieger Institute's world-class Down Syndrome Clinic and Research Center, and Libby Kumin and her colleagues at Loyola University's speech clinic in Columbia.

My daughter Hope has had the tremendous benefit of having access to these experts, as well as a cadre of excellent therapists provided by Baltimore's Infants and Toddlers Program. She is already a well-known and cherished member of her community, and I look forward to her full inclusion in the Baltimore City public charter school my older children attend, City Neighbors Charter School.

My oldest turns 11 this summer, and her march toward independence continues apace. Sleep-away camp, walking alone to a friend's house — and last week she went into the grocery store by herself while I sat in the car with her sleeping sister. As I watched the sliding doors close behind her, I felt that familiar mixture of pride and fear that parents experience as we watch our children grow. One day it will be Hope's turn — for school, for camp, to go to the store independently, for work, the bus, college. How will my husband and I face the fear that will threaten to overtake the pride? I need to be able to bring the car around in the movie theater parking lot without having to worry that her stubbornness might be misinterpreted as unlawfulness, that her shyness and refusal to speak to strangers be seen as insolence. I need to trust in the kindness of strangers, the good intentions of my fellow citizens, and certainly in the compassion, good judgment and basic knowledge of law enforcement.

Hope and so many other children who have Down syndrome are going to be integral parts of their communities for decades, having benefited from advances in health care, early intervention and community inclusion unimagined a few short decades ago. But it is critical that our leaders, teachers, local business owners, neighbors — and certainly our police officers — have real knowledge of this community, their challenges and strengths, their supports and needs, and where to go for help when they are unsure of what to do next. Handcuffs, physical restraint, lack of patience, loud voices, aggression, intimidation — these responses were doomed to fail, and they led to the ultimate tragedy for Mr. Saylor and his family.

We must make sure that this tragedy is never repeated. We must have justice for Ethan Saylor. And we must reassure the thousands of people here in Maryland who have Down syndrome or have a loved one with Down syndrome that such careless actions will not be tolerated.

Elizabeth Zogby lives in Baltimore. Her email is katzogby@verizon.net.