Author’s Note: As a mother of a 6-year-old with Down syndrome, I have considered this post carefully and tried to temper it with my desire to encourage and support others in the Down syndrome community. If I have failed and caused pain or antagonism, I ask for grace as I try continually to parent best a child with a disability and share him with the world.
I came across the news story of Robert Ethan Saylor back in January. You can read about him here: http://www.huffingtonpost.com/2013/03/26/robert-ethan-saylor_n_2958777.html. Have you seen the story? Robert Ethan Saylor was the adult with Down syndrome who died after struggling with and being handcuffed by police officers in a Baltimore movie theater. He had finished watching Zero Dark Thirty and was left alone in the theater while his caregiver went to fetch the car. During that time, management asked the man to leave, he refused, and police officers moonlighting as mall security guards were called and responded to the scene. Robert got angry, cursed at them, a struggle ensued, and he wound up in a heap on the floor with the police officers who subsequently handcuffed him. He died from asphyxiation, complicated by serious heart issues related to his Down syndrome.
My heartfelt condolences go out to the Saylor family, and I am greatly saddened that this world has lost another precious person with Down syndrome.
Saylor family lawyer Joseph B. Espo had this to say accusing the police officers of misconduct, “One of the options they had was to simply tell the theater manager, `We’re just simply not going to deal with this.’ They should have and could have just walked away,” he said.”
His point is that because Saylor had Down syndrome, his right to behave antisocially trumped the officers’ duty to do their job. Their job was in this case to enforce the rules of the movie theater. But Espo says, “They should have and could have just walked away.”
Hmm. Why? Why? If I was the one in the movie theater and the officers said, “We’re just simply not going to deal with this,” we would call them lazy, cowardly and insubordinate, right?
A huge part of the Down syndrome community is outraged and is calling for specialized police training specifically aimed at how to handle people with Down syndrome. Recently there has been a similar push for the same kind of training for police officers handling people with autism.
So let me get this right:
1. People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.
2. People with Down syndrome and other disabilities deserve to have the same opportunities as everybody else, regardless of the cost to society.
3. We should accept people with disabilities just like they are and stop trying to “fix” them. This is an argument I hear a lot regarding people with autism.
Which brings me back to statement number 1.
People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.
Everybody else? If “everybody else” refused to leave a theater after a movie was over, “everybody else” would be asked to leave, told to leave and if they didn’t leave, they would likely be handcuffed. Robert Ethan Saylor was treated just like everybody else.
The medical examiner’s report includes the fact that Saylor had a reported medical history of anger issues, especially when confronted or touched. Combine that with the fact that he weighed close to 300 pounds. Add in his cognitive delay which is part of Down syndrome.
So you have a very large man with Down syndrome with significant anger issues left alone in a public place, and his death is on the officers’ heads because they had to restrain him and that restraint led to his death?
Have you ever seen a teenage boy or young adult with Down syndrome when they are angry? I witnessed this at a Best Buy recently. A teenager with Down syndrome was swiping things off of the shelves on to the floor and yelling. The father had to throw the boy over his shoulder and leave the store. He was not anywhere near 300 pounds, and it was still terrifying.
Part of the battle cry is that because of Saylor’s obvious Down syndrome, he basically should have been left alone and not expected to abide by the rules.
If it was me, I should have been arrested, but because Saylor has a developmental disability, he should have been excused.
Hmm. Back to point 1.
People with Down syndrome and other disabilities like autism deserve to be treated just like everybody else.
Oh, and then there’s point 3.
We should accept people with disabilities just like they are and stop trying to “fix” them.
Saylor’s obesity and anger management issues probably are in large part due to that point #3. He was probably allowed to eat as he pleased and act out most of his life because “it’s the Down syndrome.” (insert autism, deafness, PPD, ADHD, ADD, bipolar disorder, communication disorder in the blank as appropriate.)
I have had the blessing lately of helping out in a preschool environment once a week. In just four months time, I have witnessed two children, completely unrelated, going from happy, outgoing, well-adjusted 3- and 4-year-olds to two children who completely space out on occasion, stimming, spinning, avoiding eye contact, humming as a calming mechanism, etc . and my guess is they are on their way to autism. Why? Because for these precious children, the environment they are in is completely overwhelming and overstimmulating. Because of their personalities and the unique way God made them, they are not ready for the crazy environment of preschool that they are being thrown into. I have sat both of these children off to the side with me and talked to them quietly and sensitively and they have responded positively. Is sheltering and delayed mass socialization the solution for every kid with autism? No, of course not. But we are losing our children left and right to diagnoses, and at least some of them can be prevented or treated organically. I think moms instinctively know this, but our culture has made it tantamount to a crime to even suggest that a parent might be able to do something to help better the behavior and social skills of their child.
That’s what occupational therapists, physical therapists, speech therapists, applied behavior analysts are for is what we’re told.
Since when do we need a paid professional to equip our children for the world around them?
Since when? Since moms and dads decided it’s more important to have two incomes than to raise the children they brought into the world.
Since the media and special interest groups have made it unconscionable to try to “fix” our children.
Since we as a culture have valued individuality above all us, even when one person’s right to be an individual and not be “fixed” robs everybody else of the opportunity to make and maintain rules and order.
Why should Robert Ethan Saylor or anybody else for that matter have the right to sit in a movie theater long after everybody else has left and I not have that same right?
My solution is this:
Can we give business owners, school principals, teachers, parents, Sunday school leaders, pastors, police officers and movie theaters the right to make the rules and to enforce them, and if your child is somehow unable to comply, can we put the burden on you to bridge the gap unless these people themselves want to bless you by bridging the gap for you? Actually that used to be the standard, but somehow in the past 10 or 15 years, that standard and those rights have been slowly eroding.
Can we leave teachers alone and let them teach our children who can learn easily alongside everybody else and give the kids with special needs the aids they need, one on one if necessary, so that they can either also learn alongside everybody else or go off to work in an environment they can learn in? Can people who are designated guardians or caretakers take responsibility for their charges’ behavior and do whatever is necessary to ensure they comply to the same rules everybody else is following whenever possible?
I am so, so thankful for the grace and support Noah’s team gives him. We have Sunday school teachers, AWANAS leaders, gym teachers, neighbors and family members who are willing to go a little slower, be a little more forgiving, give a lot more grace and share more encouragement with Noah. But God forbid I should ever demand it from anybody. All of these people have graciously given it freely and when I expressed concern about undue burden, they have done more reassuring than I could have asked for.
To the police officers and movie theater management involved in this case, I support you for doing your job and for having the right to enforce reasonable rules.
To the Saylor family, I am sorry for your loss – the loss to your family, the loss to your community, the loss to your world and mine.
