A mother fights for reform after her son with Down syndrome was killed by police

Content warning: This story contains themes of ableism and police brutality that readers may find disturbing

Working with individuals who have intellectual and developmental disabilities is a key aspect of a job in law enforcement. Yet, members of the police force often interact with such individuals in high-stress situations with little to no training. Patti Saylor, the mother of a 26-year-old man with Down syndrome who died on the floor of a movie theater at the hands of three off-duty sheriff deputies, is painfully familiar with the repercussions of such negligent training. Since the death of her son Ethan in 2013, Saylor has been fighting to prevent another such tragedy by changing the way law enforcement trains personnel.

According to Scary Mommy, in January 2013, Ethan went to see the movie Zero Dark Thirty at a mall in Frederick County, Maryland; a location he had visited hundreds of times before. This time, however, he did not want to leave when the movie was finished and instead wanted to watch it again. His aide, Mary Crosby, decided to give him a moment to himself and went outside to pull the vehicle to the front entrance. When she got back, Crosby discovered that Ethan had gone back into the movie without purchasing a second ticket and tried explaining to the theater’s manager that it would be best if they let her and Saylor—who was on her way to the theater—handle the situation.

Ignoring her plea, the manager called security and three off-duty sheriff deputies working as security guards stepped into the movie to retrieve Ethan. They found him sitting silently in the same seat he had sat in during the first showing and told him that he had to either leave or purchase a ticket, failing which he would be placed under arrest. "He didn't cooperate, of course," Saylor told NPR. "He didn't want to leave. At that point, I believe, he wouldn't know what was going on."

A civil lawsuit filed by Ethan's parents states that he had "physical and facial features common to individuals with Down syndrome, and was easily recognizable as someone with this disability." Furthermore, Crosby had informed one of the deputies about Ethan's disability and asked "that they just 'wait out'" his refusal to leave the theater. She also warned them that he "would 'freak out' if he was touched and that he would resist being forcibly ejected." Despite her warnings, the suit states, "two of the three deputies grabbed Mr. Saylor, one by each arm, and tried to drag him from the theater while telling him he was going to jail."

"As they neared the rear of the theater with the struggle underway the Deputies handcuffed Mr. Saylor with his hands behind his back. Mr. Saylor was heard to scream 'mommy, mommy' and say 'it hurts.' At the back of the theater, Mr. Saylor – handcuffed and held by the deputies – ended up on the floor with at least one deputy on top of him," it continues. "As the deputies manhandled Mr. Saylor, they fractured his larynx making it difficult for him to breathe. Because this was apparent, the deputies rolled him to his side, removed his handcuffs, and called emergency medical technicians. It was too late – Mr. Saylor suffocated."

By the time medical personnel arrived, Ethan had stopped breathing. He was later pronounced dead at a local hospital and his death—from asphyxia—was ruled a homicide. The deputies involved were cleared of criminal charges by a Frederick County grand jury. Ever since, Saylor has been fighting for reforms in the way law enforcement personnel are trained to deal with individuals who have intellectual and developmental disabilities. "Some officers have [less education] and receive maybe an eight-hour course on mental health. And that's about it," Elizabeth Rozziaky, a board-certified analyst with Center for Autism and Related Disorders, told Healthline. "They often get way more training on how to physically manage an individual."

Saylor believes families like hers have a unique perspective on the matter given their first-hand experience. "We know something the police don't know. I felt like we needed to teach them, and then hold them accountable," she said. Two years after Ethan's death, in 2015, Maryland established the Ethan Saylor Alliance, which involves persons with intellectual and developmental disabilities in the course of police training. They hired ten adults with a spectrum of disabilities to role-play common high-stress scenarios with police officers based on a training program developed by Loyola University Maryland professors Lisa Schoenbrodt and Leah Saal.

Today, Maryland is a leader among states in training law enforcement on how to respond to people with intellectual and developmental disabilities. "So many police officers have asked me, what should they have done? And I said, 'Well, you've got to use your bag of tricks,'" said Saylor. In Ethan's case, "if you really wanted him to leave, you may have said, 'let's go on out here and get a snack while we wait for your mother,'" she added. "There's no magic pixie dust. It is a relationship."