Call To Action: Frederick County Sheriff Department Accreditation Committee

The Frederick County Sheriff's Department is up for an accreditation review with CALEA, a national law enforcement accreditation group. There has been a public call for letters and phone calls from the community. It is time to let Sheriff Jenkins know that we have not forgotten what happened to Ethan Saylor. Tell the committee what happened and let them know that we want justice for Ethan.


Commission on Accreditation for Law
Enforcement Agencies, Inc. (CALEA)
13575 Heathcote Boulevard Suite 320
Gainesville, Virginia, 20155

Dear Assessment Team,

In advance of your audit of the Frederick County Sheriff's Office, I write to highlight my concern regarding that office's handling of Robert Ethan Saylor's homicide at the hands of three off-duty Frederick County deputies.

On January 12, 2013, Mr. Saylor re-entered a movie theater without purchasing another ticket for a showing of Zero Dark Thirty. Sheriff's deputies Lt. Scott Jewell, Sgt. Rich Rochford and Deputy First Class James Harris were moonlighting as mall security that night and were called as such to attend to the situation. The three attempted to forcibly remove Mr.Saylor from the theater; confusion ensued as the guards dragged Mr. Saylor out of his seat. Soon thereafter, Saylor's companion returned to the theater and pleaded with the guards to let her take Mr. Saylor home.

The guards declined. Instead, they continued to apply force against Mr. Saylor, using three sets of handcuffs linked together to pin his arms behind his back. Mr. Saylor ended up face down on the ground, presumably where his larynx became crushed. Mr. Saylor then died of asphyxiation, all over the price of a movie ticket.

Following this homicide, neither the sheriff nor the local prosecutor found any conflict of interest investigating the case, regardless of the fact that the security guards were also deputies of the investigating office. Instead, they kept the matter in the county instead of using outside resources. The locally run grand jury failed to indict the deputies of the use of excessive force. Instead they blamed Saylor's death on his Down syndrome rather than scrutinizing the actions of the three off-duty and seasoned deputies.

Sheriff Jenkins has publicly commented on the problems of moonlighting officers. In the Maryland Community News Online Gazette, he was quoted as saying "“When [deputies] take an [enforcement] action on someone, they immediately fall back into law-enforcement status,” he said. “I’ve said all along that I don’t think law enforcement should be in competition with private security.” Despite his apparent concern about the ethics of such secondary work, Sheriff Jenkins still choose to not call for an independent investigation.

The Frederick County Sheriff's Office's handling of Saylor's homicide calls into question the office's commitment to professional excellence. It is of grave concern that three off-duty deputies, including two of high rank, saw fit to manhandle a young man over the price of a movie ticket to the point of death. Of even further concern is Sheriff Jenkins's decision to keep the matter in house rather than declare a conflict of interest. Such action gives rise to the unfortunate appearance that the Frederick County Sheriff's Office was solely interested in protecting its three officers rather than engaging in a transparent investigation of Saylor's homicide.

Thank you for your time and attention to this matter,

[Your name goes here]

Press Release - Activists Mobilize to Demand Justice for Robert ‘Ethan’ Saylor

For Immediate Release

May 1, 2013

Activists Mobilize to Demand Justice for Robert ‘Ethan’ Saylor

Fredrick, MD — Down Syndrome Uprising (DSU) and T21 Brigade have joined forces this week to call on Maryland’s Governor Martin O’Malley and Attorney General Douglas F. Gansler, to demand an independent investigation into the homicide of Robert ‘Ethan’ Saylor that occurred on January 12, 2013.

Citing the failure of the local State’s Attorney Charlie Smith to prosecute the homicide of Mr. Saylor, activists express concern over the possibility of local law enforcement protecting its own. Smith presented the grand jury with information about the case derived from an investigation conducted by the same agency that employs the police officers involved in Mr. Saylor's death.

Smith’s statement, following a grand jury hearing, that Saylor was "compromised by his Down's Syndrome [sic]," shifted the blame for Saylor's death onto his genetic condition rather than the improper restraint technique used on him after he refused to leave Regal Cinemas Westview Stadium 16 in Frederick City, Maryland once the movie ended. 26 year old Saylor was restrained face down with his arms behind his back causing him to suffer positional asphyxia. His death was ruled a homicide by the medical examiner.

Down Syndrome Uprising (DSU) and T21 Brigade, two grassroots activist groups, are working in tandem as The Down Syndrome Collective to redress the violation of Ethan Saylor’s civil rights that caused his death. “What has happened to date in investigating how a man died alone, crying out for help on the floor of a movie theater has been a sham. Only an independent investigation can honestly answer the manner of his death” says Taina Karru-Olsen, from DSU.

Jennifer Campbell of T21 Brigade explains, “Parent advocates have joined together seeking justice. We are keenly aware that Ethan Saylor could be any of our children, and are demanding an investigation that does not blame Down syndrome for a homicide.”

About The Down Syndrome Collective, T21 Brigade, and Down Syndrome Uprising

The Down Syndrome Collective is comprised of about 2000 members from both DSU and T21 Brigade, working to demand equal human rights for people with Down syndrome.

Established in 2009 as the Oz Squad, T21 Brigade is responsible for the removal or retraction of offensive material related to Down syndrome from a variety of online and print sources.
T21 Brigade Facebook page
T21 Brigade Blog

Down Syndrome Uprising (DSU) has over 1,000 members and is a grassroots online activism initiative that serves as a communication hub for a unified, global community of Down syndrome activists. Formed in January, 2013, DSU is organized by six mothers of children with Down syndrome living in four countries.
Facebook page: (https://www.facebook.com/DownSyndromeUprising)
Blog (http://downsyndromeuprising.blogspot.com/)

Media Inquiries

Sandra Lynn
T21 Brigade
(518) 496-6932
ds.mama at yahoo dot com

Taina Karru-Olsen
Down Syndrome Uprising
(425) 246-4530
Downsyndromeuprising at outlook dot com

Concerned parent writes NDSS and NDSC

This letter was sent to us by a concerned dad. It follows up on a question he asked during the NDSS, NDSC and FRIENDS Town Hall call on Tuesday. We think he makes some excellent points. We hope that NDSS and NDSC read this letter carefully. 

Dear Mr. Colman and Ms. Goodman,

I write to follow up on yesterday's town hall conference call.  First, I want to thank you for hosting the event.  I appreciate the effort at community outreach.

At the meeting, I expressed my view that Maryland state officials should be the focus of our demand for an independent investigation rather than the federal government.  Today I wish to follow up on that topic.

As we discussed, it is encouraging that the United States Department of Justice ("DOJ") has reached out to your organizations.  Like you, I remain hopeful that someone inside the DOJ will initiate an impartial investigation of the Saylor homicide free of the personal entanglements that derailed the matter at the local level.

I am, however, concerned about over-reliance on federal action.  To begin, as we discussed, the federal actors you are in touch with have relatively narrow mandates limited to civil rights, disability rights, and overlap between the two.  Yet for the reasons we discussed, this case---while presenting a fairly clear-cut case of excessive force---may not reflect the willful deprivation of Mr. Saylor's rights due to his status as a legally protected minority.  Similarly, I am concerned that a claim that the off-duty deputies violated Mr. Saylor's civil rights may be complicated by the fact that the men were acting in a private capacity on the night in question.

More fundamentally, I am concerned that over-reliance on "civil" and "disability" rights to establish the guards' culpability undermines the core narrative that our community should adopt and repeat: that because Ethan Saylor had Down syndrome, the off-duty deputies did not view him as worthy of basic human dignity, and they thus overreacted to an innocuous situation by killing him over the price of a movie ticket.  Viewed from this perspective, Mr. Saylor's death presents a violation of the basic human right to life.  By relying on the narrower statutory rights enforced by the DOJ, I fear that our community will lend credence to the off-duty deputies' narrative of innocence: that miscommunications and/or health problems stemming from Mr. Saylor's Down syndrome are to blame for the homicide rather than their own misconduct. 

For these reasons, I believe Mr. Saylor's case is best cast as a violation of state criminal law, and that it falls primarily on the higher Maryland authorities to see that justice is served.  On this point, the Trayvon Martin case from Florida serves as a useful point of comparison.  There, as here, the killer overreacted to an innocuous situation based on his personal prejudices against the victim, i.e., that Mr. Martin (a young black man) was not worthy of basic human respect.  Similarly, there, as here, local law enforcement placed its stamp of approval on the killer's misconduct by failing to seek criminal justice.

There, however, unlike here, a massive outpouring of public outrage---fueled in large part by national advocacy groups such as the NAACP---forced the governor's hand to appoint a special prosecutor, who ultimately brought criminal charges against George Zimmerman. 

That, I believe, is where your organizations come in.  Governors and attorneys general are inherently political creatures, a circumstance that cuts in both directions.  On the one hand, politicians frequently have their eyes on re-election and/or higher office, and are thus reluctant to ruffle the feathers of law enforcement, whose support they believe they will need to advance their own careers.  On the other hand, politicians will respond to public pressure when they believe it is in their best interest to do so.

As the Trayvon Martin case demonstrates, large national advocacy groups such as yours have the prestige, platform, and resources to galvanize their constituencies (and others similarly situated) to compel action at the high levels of state government.  I thus urge you to focus your attention on the Governor and Attorney General of Maryland, as well as any other appropriate high-level officials, to launch an impartial investigation of Ethan Saylor's homicide in addition to any action that the federal government may (or may not) take.

Yesterday you reaffirmed your commitment to demanding an impartial investigation.  I take you at your word.  Please do everything within your power---including contacting the appropriate authorities, organizing marches and rallies, coordinating social media efforts, and so on---to grab the attention of the appropriate state officials before it's too late.  I believe this action is a moral imperative of your respective offices, and that only you have the ability to coordinate the large-scale efforts necessary to ensure Justice for Ethan.

Please feel free to contact me any time regarding this matter.  Thank you.

A Step Backwards for Down syndrome Advocacy

I've been out of the loop for a bit.  As most of you know, recently my son had open heart surgery to repair his AVSD.  I haven't been around in the online scene as of late which has been troubling me.

What's troubled me more is a current shift in thinking, especially when it comes to the events following the death of Ethan Saylor.  I was saddened to come back from my hospital hiatus to see that not only some advocates, but even some of the major organizations are pushing towards "Down syndrome specific training" for police and first responders.

I'm not going to beat around the bush: I think this is really a misguided application of energy.  One in fact, that may undo years of hard won advances with Down syndrome advocacy.  There are a few reasons for this, some of which I'm sure haven't been considered by those who are pushing for it.

Firstly, who decides what subjects are taught or what aspects of Down syndrome will be highlighted in this training?  What does this proposed training involve?  Not too long ago, the community was rocked by a supposed "nursing" site posting an old image caricature of an infant with Down syndrome.  Many of the "conditions" presented were irrelevant, occur in the greater population at random and have no bearing on quality of life.  What will affect a person with DS life are things like heart disease, which the general population also has and in much greater numbers.  There are umpteen studies showing that positional asphyxiation is a reality.  Law enforcement and any person using restraint (including us psych folk) are well aware of this.  Every single document, every single video that I have come across in my search clearly outlines the danger of positional asphyxiation.  A person with DS is in danger of dying when restrained face down on the ground, yes.  So is everyone else.  Except in Maryland, apparently.  The reality is, these deputies knew the dangers and chose to ignore them, or quite frankly, simply didn't care.

Secondly, who is qualified to teach 'Down syndrome specific training'?  Physicians?  Lawyers?  Other law enforcement?  The National "Advocacy" Organizations?  Training also needs constant updating and re-certification.  Who designs these courses, who are the supposed experts here?   Who accredits them?  From what sources does their information come from?  If you remove the money from the equation (as people will have to be paid to come up with this course material, train the target audience, maintain the certification and audit those with the training), who really benefits from this training?  The officers, who will look at it as one more thing to endure to get their superiors off their case for one more year?  With that in mind, will these strategies really get incorporated into everyday use?

Thirdly, and most importantly is the glaringly obvious thing that people are missing:

By advocating for Down syndrome specific training, you are further marginalizing those with DS as the "other", as "different" and setting them outside the rest of society.

By stating that people with DS--a population that is as diverse as the greater population it is derived from in the first place--need "special considerations" when being talked to by a police officer, EMS, Firefighter or whoever else you want to extend such "training" to, you are predetermining.  You are profiling, you are prejudging.  People do not fit into neat little boxes.  For example, you cannot deal with every mentally ill person that you encounter identically as there is a pantheon of symptoms and an equal amount of ways that communication can break down. The differences are just as numerous and the analogy holds when you are looking at people with developmental delays.  Every single person is different;  in terms of DS, the extra chromosome can express itself in a multitude of ways.  Some will have sensory issues, most won't.  Most will have heart issues, some won't.  Making blanket statements about anyone, be they developmentally delayed, mentally ill, of a specific ethnicity, or any other difference that sets "them" apart from "us", is dangerous, marginalizing and opens the door for so much abuse. Relying on gross generalizations in times of crisis is poor preparation and serves and protects no one.

I have a great respect for all law enforcement, not just the officers that I cross paths with in my line of work.  I refuse to see police as mindless killing machines who need to be distinctly told not to do something so that all of us can stay safe. The ones in my community certainly aren't, at least not any more.  Back in the bad old days... well, I could tell you stories growing up in this region.  There is a certain level of education that is required to get in now.  There is a certain level of community involvement that is required, you have to be a very well rounded person to be considered, to represent a diverse population safely and with compassion.  That isn't something that is taught or possibly can be taught, it is recruited for.

We need real world solutions, not special training, to keep people like my son from dying at the hands of those who are sworn to serve and protect him and the rest of my family.

With that in mind, allow me to humbly offer the following:

1)  Recognize that a Sheriff is an elected official not simply the "top cop", who can quite easily become as corrupted as any other elected official.  Know your candidates and find out their track record prior to them obtaining office.  Cast your votes accordingly.

2)  Abolish "moonlighting".  The deputies who were responsible for the death of Ethan Saylor were moonlighting as mall security, a job that (if our friends in mall security will forgive me) is well below their level of training.

Let me give you an example.  As an RN, I am not allowed to work as a Personal Support Worker if I find myself strapped for cash.  There is a reason for that:  I have a certain skill set, a scope of practice and a specific license.  If I were able to take a job below that scope of practice, yet in the same field, it would blur a lot of lines.  If I was tending to an elderly client who suddenly developed symptoms that I recognized because I was an RN, I couldn't pretend it wasn't happening because "a PSW wouldn't know that".  By the same token, if I used interventions that I know from being an RN, I would not be able to legally justify/use them due to my current employment as a PSW.  The lines are too blurry, the jurisdictions too different.  I can't be one thing and pretend not to be a couple days a week to work a job with a lower skill set, if only to protect my license and my main livelihood.  You shouldn't have active paramilitary personnel working as mall security either.  When the three men were called to the scene, they were acting as mall security.  Somewhere in there, they decided they were deputies again.  Regardless, they sure became deputies again (and invoked all rights and privileges as such) once Ethan was dead.

If I need a little extra cash, I pick up overtime.  The police in my area work along the same lines.  There are also a lot of paid duty opportunities for police as well.  This is why here, you find uniformed officers at ball games, outside construction sites, doing patient watches in hospitals and at the liquor store at Christmas.  During such, they are expected to fulfill the responsibilities that their uniform dictates.  If malls and whatnot expect a certain level of security, they pay for it.  Offer the police a little respect and pay them properly to perform their duties as police officers.  They earned it. Allowing active, trained officers to take lesser skilled jobs in a related field is simply asking for trouble and opens the door for tragedy, as it did in Maryland.

3)  Recognize that compassion cannot be taught or encouraged in those that aren't receptive.  Recruit accordingly.  There are some that go into policing that are angry, have deep set prejudices and too easily cross the line.  We all know stories of this, of cops that take it too far.  Take this guy or this guy, or this guy.  But, for every horror story, I'm betting there are 10 great officers (both men and women) who actually do care about the community they serve.  You need more of them in the field, not just in front of the camera when the politicians feel it's appropriate.  It is possible to have a general sensitivity towards various cultures and groups and still be able to control a situation (and ultimately ones self).  It's been put forth by one blogger that we live an ugly world and if there was more compassion we would not need police or even soldiers as there would be no war.  I'm not talking about achieving Utopia here; sometimes force is a necessary evil.  However, I guess I'm a bit spoiled coming from Canada.  We don't have legions and legions of soldiers.  The ones we do have are respected across the globe for their compassion and known as "The World's Peacekeepers".  It is possible to be both.  The police in my community at least, certainly reflect this.

The idea of "Down syndrome specific training" is ridiculous, insulting and might very well put our advocacy efforts back decades.  You cannot train for such a diverse population, as people with Down syndrome exist in every ethnic, socioeconomic and religious background, not just white, middle class, Christian ones.   Those are the factors that dictate how a person with Down syndrome receives care, is viewed in the community, is treated in their own family and even how the person themselves view law enforcement and first responders.  It is these factors that will shape how a person with Down syndrome will react in a a given situation, not their chromosomes. The idea that my son, who will grow up respecting law enforcement--just like Ethan did--could die of  "Down syndrome" and "heart issues" at the hands of law enforcement--just like Ethan did--shakes me to the core. There are a lot of comparisons that I cannot help to make between Ethan and Wyatt; Ethan's Mom is a well known DS advocate too.  The idea that sweeping generalizations, by the medical community and by law enforcement, may very well rule my son's future life and death, makes me angry.  We cannot hope to change the public perception of people with DS to one of complete inclusion by making people with DS the "other" to the very people that are supposed to take care of them.  There is no magic list of "things that you need to know when 'dealing' with a developmentally delayed person" other than you are talking to a human being with thoughts, feelings, desires and needs.

Just like everyone else.  I cannot stress that enough it seems; that particular point cannot be lost.

[Originally appeared on Down Wit Dat]  

Dream

"The whirlwinds of revolt will continue to shake the foundations of our nation 

until the bright day of justice emerges."
-- Rev. Dr. Martin Luther King, Jr.

Today is April 4th.

Forty five years ago today, a man named Martin Luther King Jr. was shot to death for speaking out about injustice, about poverty, about the denial of basic human rights and dignity.  His words, his actions shone a light into the darkest corners of prejudice and hatred.  

Eighty-two days ago, a man named Robert 'Ethan' Saylor died face down on a floor in a Maryland movie theater.  He died of positional asphyxiation after being handcuffed by three off-duty deputies who were moonlighting as security guards at the mall next to the theater.

His death too, has been ruled a homicide.

Ethan was not a civil rights leader.  He was a man who will always be defined by his Down syndrome.  His death is exactly what Dr. King was talking about.

It seems to be an easy thing, dismissing this man's death.  He had a developmental delay.  He looked differently, spoke differently.  Interpreted the world around him differently perhaps.  Took a little longer to respond to things than you or I probably.  The different.  The other.

Ethan died because he had Down syndrome.  Not that his chromosome killed him, or that his health issues, probably treated less aggressively due to his having Down syndrome, caught up with him quietly in his sleep.  He died because he did not live up to the stereotype of a happy, smiling, hugging man with DS.   He died, handcuffed by three sets of linked cuffs, in a 'hogtie' position, on the filthy floor of a theater.

"...a promise that all men...would be guaranteed the unalienable rights of life, liberty, and the pursuit of happiness"

There is a lot of anger in the various DS "communities" out there.  As parents, we often try and shield our kids and ourselves from the ugliness that is out there.  We involve ourselves in our chosen groups and turn our focus inward.  We get complacent, insular... and often forget how terrible those who were different had it in the past. We forget how hateful society really can be.

With Ethan's death, our innocence has been lost. 

It is painfully clear that this can happen anywhere at any time.  This isn't just a random incident isolated to the state of Maryland.  This story comes to us from San Diego.  This story comes to us from Guatemala. This story comes from the UK, where a family was asked to leave the theater as their child with DS was "laughing too loud" at a comedic film.  This story comes from New Jersey, where a teenaged couple, instead of being taken to the correct seats, were separated and made to sit elsewhere. 

There is a lot of anger floating about.  Although ruled a homicide, those that are responsible for Ethan's death walk free.  In fact, at first they went back to their regular day jobs as if nothing had happened.  After a few weeks, they were placed on "Administrative leave".  There is a demand for justice, for this life lost.

"I have a dream that one day this nation will rise up and live out the true meaning of its creed: "We hold these truths to be self-evident: that all men are created equal."

We have lost our blinders when it comes to how severe the hatred is out there.  Each new story tries to excuse the actions/inaction of everyone in that theater by portraying Ethan as a monster.  Instead of "young man dies", he had "anger issues".  Instead of "positional asphyxiation", he had "heart problems".  There aren't people carrying placards outside every government building and movie theater denouncing the existence of those with Down syndrome, true.  However, every online source covering this case has a litany of comments from ignorant, vitrol spewing people.  I'd re-invoked my rule of "don't read the comments" some time ago, but many parents now are viewing the extent of society's contempt for our children with reoccuring themes such as "where was his handler?", "anger issues", "retard strength" and yes, even "broke the law/deserved punishment" and "he deserved to die".   We tend to shield ourselves against such negativity; it is now there, in black and white, in our faces. There is no escaping it now;  we can't chalk this up to childish pranks or attention seeking ''shock jock' disc jockeys.  These are our neighbours.  They hate our kids.

Many people are voicing feelings of abandonment by the organizations representing their children.  People have realized in the last while that the charities that they have been donating to all these years do not advocate as they claim to do.  The giants are slumbering.  Although one has roused and briefly mumbled, those with the loudest voices of all are silent.  Passive.  Allowing their inaction to speak for them instead.

"I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character..."

We would like to think that all our children, not just the neurotypical ones, can walk freely with their heads held high and achieve whatever it is that they wish to achieve, to live to their potential.  That the shape of one's eye, the 'tone' of one's muscle, will mean nothing more than the beautiful variance that is humanity.  We parents feel keenly the looks, the stereotypes, the assumptions. Those living with Down syndrome are stung by the inequality and lack of representation.

"I am not unmindful that some of you have come here out of great trials and tribulations..."

I was talking to a friend one night who looked at me at one point and said "It is never "off" for you is it?  There is no time when you are free from all of this [prejudice]?"

No.  There isn't.

There is a certain bone-weariness that comes with that. It in turn, makes you want to isolate yourself further.  To stop talking.  To hide once again and pretend that this is all not happening.

"But there is something that I must say to my people who stand on the warm threshold which leads into the palace of justice. In the process of gaining our rightful place we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred.

We must forever conduct our struggle on the high plane of dignity and discipline..."

I've heard this one too: "The problem with this is that there are too many passionate parents."  This is right, but not for the reasons that the author intended.  Parents are all too human as well.  Full of the same foibles as any random sampling of the population would be.  If anything should put to rest "only special parents are given special children" chestnut, it is a good look at this membership into the "Trisomy 21 Parenting club".  You will find the same personality disorders, the same secondary gains, the same attention seeking behaviour.  Because of this, some of the louder voices are too easily perceived as shouting randomly, by not only those minds we wish to enlighten, but by our own people.  Instead of  coming together, we are driven further apart.  Some do quite successfully talk the talk and walk the walk... but still, will never be able to fully accept their own flesh and blood as their own and it saddens me even further.

"We have also come ... to remind America of the fierce urgency of now. This is no time to engage in the luxury of cooling off or to take the tranquilizing drug of gradualism. Now is the time to make real the promises of democracy. Now is the time to rise from the dark and desolate valley of segregation to the sunlit path of racial justice..."

This is a time of struggle.  This is a time of seeking social justice.  This is not a time to 'let nature take it's course' or win hearts with cute pictures.  This is a time of action.  We don't have the luxury of doing it any other way at the moment.  Ethan's death has crystallized exactly what is wrong with society and its treatment of those with Intellectual Disabilities/Developmental delays.  If we let this go, if we lie down and go quietly into the night as those that make policy would have us do, we are globally condoning the prejudice and brutality in the articles I linked earlier.  If we stop raising our voices and getting "uppity", if we allow things to continue on in more gradual way, we will be shown our "place" again and expected to stay there.

My son does not have a "place", other than at his parents and siblings side.

We need to take action.  Regardless of what country, what city you live in, these events or ones similar are occurring there as well.  Those with Down syndrome, those with Intellectual Disabilities and Developmental Delays are being disregarded out of hand.  It is time to stop being the other. 

We need to write.  We need to speak out.  We need to act.  We need to represent those that have no representation.  We need to get our message heard and our sound amplified by those with bigger voices.  We need those living with DS to have a larger say.  We need more self advocates.  We need visibility.

I too have a dream, you see. 

Raise your voice.

Let freedom ring.

----------------------
King, Martin Luther, Jr. "I Have a Dream." Lincoln Memorial, Washington D.C. 28 Aug. 1963. Speech. 

[Originally appeared on Down Wit Dat]  

The Spin Cycle – How Robert ‘Ethan’ Saylor Killed Himself

I have heard from a couple friends I should ‘write funny’ like I used to. I would love to do that for them and me. I can’t right now. Ethan Saylor’s death and what has transpired since makes ‘funny’ have to wait today.  I am a mother of a child who has Down syndrome.

Robert Ethan Saylor

I have written twice before about Ethan’s death.  In the first I was appalled that prior to the Grand Jury findings several theories were being offered for the death of Mr. Saylor – none of which included he might have been the victim of a violent encounter with three individuals who used excessive and deadly force.

In my second post I wrote about my frustration that a national organization that advocates on behalf of people with Down syndrome had made a preliminary assessment that he may have been compromised by his Down syndrome. (After Trayvon Martin was shot did the N.A.A.C.P. suggest to African-American males to discontinue wearing hoodies while visiting neighborhoods they are not known in?)

Since the Grand Jury findings – numerous news stories and posts have been written. One stands out from the Huffington Post. I can’t tell if it’s straight out victim blaming by the writer David Disneau or poorly written. Disneau seems to be indicating Ethan Saylor was a person whose time had just come. He offers everything but the kitchen sink and a grassy knoll toward that conclusion.

The story suggests Ethan was a fat, angry man with a bad heart and Down syndrome. He caused the four individuals involved (himself and the security personnel) to fall in a heap by resisting. The use of three sets of handcuffs was “to accommodate his girth”.

The Saylor family’s “lawyer Joseph B. Espo has said that Saylor didn’t like being touched, particularly by strangers”. Disneau seems to juxtapose this assessment in a really clunky way with the fact “Saylor’s obituary and acquaintances have portrayed him as a warm, playful person”. Could Ethan have had a fully dimensional personality – meaning he did not like to be touched by strangers and he was a warm, playful person – and nothing he did contributed to his death?

Is there an alternative reason for his death that had nothing to do with Down syndrome, weight, anger issues or a heart condition? There were four people involved in this violent encounter and one is dead. How about some reflection that at least one other analysis of the situation exists?

Has it never been true that individuals who were also police personnel have caused the unnecessary death of a person in their custody? What if these three  men simply went ape shit on a guy? Why are these individuals behavior not questioned? What if they were angry? What if they over-reacted? What if they were so out of control they killed Ethan Saylor?

Ethan is being examined because he is the Other in this situation – the one who was not a security officer; the one who had Down syndrome.

I have heard countless times from strangers, friends, family members, health professionals, teachers, therapists and professionals of all kinds the same stereotypical commentary on our son. Except they don’t described the behavior’s as attributable to Thorin.

Instead they say:

“They sure are happy!”

“They are stubborn aren’t they?”

Any parent of a child with Down syndrome knows exactly what I am talking about. They will not have to reach into some murky past to figure out the last time they heard those statements. They hear it all the time.

What I want to offer to those of you that are not aware you may even feel this way – Ethan Saylor was not different from us. He was a human being.

I also believe he may very likely be – our Michael Stewart, our Rodney King, and our Amadou Bailo Diallo. The reason I do not know for sure is that the only investigation into Ethan’s death was conducted by the same department that employed the three Frederick County sheriff’s deputies, who were moonlighting as mall security guards on that terrible day.

I have removed from this post information that appeared earlier which may have led readers to believe Ethan Saylor’s mother – Patti Richmond Saylor –  approved the contents of this post. The only thing I am certain of is that she has expressed gratitude on the  Down Syndrome Uprising (DSU) Face book page for the work we have done toward championing her son. DSU is a collective of Down syndrome activists.

Make World Down Syndrome Day a Day of Action

Thursday is World Down Syndrome Day.  It is a day of celebration and of recognition.  It is also a day of global awareness.

Honestly, I've about had it with awareness.  I'm done, finished.  Most people are aware of Down syndrome by now.  They may not know exactly what is involved and may be very prejudicial as they base their opinions on outdated and incorrect information.  But, they know it exists.  Instead of having yet another day of awareness, I'd like to make World Down Syndrome Day one of remembrance and action.

Several things have weighed on me in the last little while.  The first is a doll, made by a mother of a 13 year old girl with Down syndrome.  They are called "Dolls for Downs" [spelled incorrectly].  The idea here is that "every child wants a doll that looks like themselves." 

I don't agree and furthermore, I am uncomfortable with these dolls in principle.

Firstly, I dislike anything that has the potential to perpetuate the stereotype that all people with Down syndrome look the same.  They don't.  My son looks like the rest of my kids;  an amalgam of mine and my husband's family.  He does not look like these dolls any more than any other child with DS that I know personally.  I find the description of "pudgy features" in the video to be extremely offensive.

Additionally, like the bald barbie debate for pediatric cancer patients, I'm going to take the stance that my son does not need this doll.  He does not need another feel good, "isn't that cute!", soft focus awareness campaign (which is what this doll will surely turn into).  He needs a medical profession who gives a damn.  He needs a society that is tolerant and accepting of neurodiversity. He needs an education system that will not decide his future based on bureaucracy and preconceived notions.  He does not need a doll whose proceeds line a private pocket, like most "awareness" paraphernalia does.

While I'm on the subject, people with Down syndrome are often under-treated and marginalized by the medical community.  Don't believe me?  The Special Olympics has the largest database of people with Intellectual Disability/Developmental Delay that there is and as it turns out, most of the athletes are lacking medical treatment of some description.  According to  the Special Olympics, 70% of athletes are overweight, 35% require vision care/new glasses, 30% have severe hearing impairment and 24% have untreated dental decay, just to name a few things.

I also cannot tell you how many stories I have heard of physicians and other medical staff dismissing a mother's concerns or simply shrugging something off as "it's to be expected".  There is the assumption too, that a person with DS is somehow a lesser human being and therefore not worthy of care (that would be, presumably, better spent on a "normal" person).  We need to stop denying surgeries and life enriching treatments to people with developmental delays.  We need to stop expecting the worst and completely disregarding people when we hear "Intellectual Disability" or "Developmental Delay".  We need to stop walking in with preconceptions and make accommodations on a person to person basis. It's not that hard, really.  However, I might as well be speaking ancient Greek to most people to whom I bring this up, as outdated, paternalistic practices run deep within medicine, our education systems and in the general public. 

Instead of chalking untreated symptoms/conditions up to "the suffering of Down syndrome", we need to call this what it really is:  neglect. 

I'm also done with "inspira-porn".  We see this stuff every day, especially in the vein of promoting awareness. Cute kid pics, fun sayings.  People with DS in the news, whether attending a prom with a (gasp!) "normal" person or doing things that everyone else aspires to do/does without thinking is not news.  I've recently had to take a hard look at what I am sharing on my Down Wit Dat Facebook page.  Who cares, if a star has a friend with Down syndrome?  Why is "your prom date with DS" news worthy?  We have to stop being satisfied with the "Down syndrome folk in the paper!" mentality and look at why we think this is significant.  Why are we perpetuating this?  Instead of being continuously starved for positive portrayal of people with Down syndrome, we need to change how things are done in the first place.  We need to create a world where this is all very commonplace and and no more worthy of airtime than anything else.  We need to stop sharing things that make us feel good initially, but have little impact on the world outside of the DS community itself.  Why is it only "feel good" stories of proms and basketball games and Academy Award nominees and dolls and similar things make the paper, but actual issues do not?  Stop with the inspira-porn, stop with the fluff.  It's a negative coping mechanism at best and selling our kids down the river at worst.

Alongside run the good intentions;  he or she may in fact "mean well", but they are not doing anyone any favors.  I know you "don't mean it that way" when you drop an R-bomb, but that does not mean I have to accept or even entertain the content of your speech when you are being a bigot.  There is an old saying that applies here:  "the road to hell is paved with good intentions".  Good intentions don't further any cause and in fact only serve to hinder ours.

I am still struggling with the death of Robert Ethan Saylor (captured excellently by atypicalson's post).  In the event that you are unfamiliar with the case--as it has not received the same level of airplay as say, a fun picture, prom story or a doll--Robert went to a screening of Zero Dark Thirty and enjoyed the film so much that he wanted to stay and watch it again.  Robert was (past tense) a man with Down syndrome who refused to get out of his seat after the movie ended.  His worker had reportedly gone to get the car.  When the theater staff were unsuccessful in convincing him to leave, they called in three off duty police officers who were moonlighting as plainclothes security at the mall next door.  By all accounts, Robert was a loving man who looked up to police officers.  Instead, what he got were three, authoritative looking men demanding that he leave.  The worker returned and tried to get to Robert's side to hopfully de-escalate the situation and was denied entry.  When he refused to leave and began to swear at them,  they threw Robert to the ground, face down, and handcuffed him.

Where he died.

Robert died due to positional asphyxiation.  By all accounts, he coded on the floor right there and all three sets of linked cuffs were removed after the ambulance was called.  CPR was initiated, but he was later pronounced dead in the local hospital.  He died, this son, over a 12 dollar movie ticket.

I am tired of hearing "there is more training needed" in response to this story.  I know a lot of police officers.  They all know about positional asphyxiation, as does any psych nurse, any of the security guards that I have the honour of working with and any person who is trained to use any method of restraint.  I think officers everywhere should be outraged by this as well, as it puts them all in a bad light and perpetuates the stereotype of The Thug in Uniform.  I am sick of hearing "tragic accident" in reference to this story.

Let's call it what it really is:  homicide.

Robert Ethan Saylor was killed by ignorance, by impatience and quite possibly by arrogance.  He was killed because they only saw 'Down syndrome' and they did not want to waste any more time on him.  He was not in a state of "excited delirium", he was not delusional.  Instead of taking a little extra time, the off-duty officers took the easy way out and took Robert down.  I wonder how long it took them to notice he was in trouble.  I wonder how long it was before that knee came off the back of his neck.

The official party line of course is that "police officers don't get training to deal with Down syndrome".  That is, if you pardon the pun, a complete cop-out.  Officers get a lot of training, especially when it comes to de-escalation.  However, these three decided to go the other way in this instance and being very knowledgeable of exactly how much force they can use and get away with, they employed that method instead. 

Robert died.  Over twelve lousy bucks.

It is of little comfort, but these three may not get away with it.  After days of deliberation, Robert's death has been ruled a homicide.  After being allowed to return to regular duties for a few weeks, all three officers are now on administrative leave.  Even though they were employed privately as mall security guards at the time, they were still able to invoke their police privilege of not having to provide statements. 

I'm not hearing a lot of outrage when I come across discussion of this story and this upsets me even more.  I hear sadness and theory, not the white-hot anger it deserves.  I see my son, in a few years time, being stubborn like his mother and dying because of it.

We need outrage.

We need to change the system, to show that brutalizing and victimizing people with Down syndrome and other Intellectual Disabilities/Developmental delays is not acceptable.  People with DS are statistically at higher risk to be victims of assault and abuse.  It is completely inexcusable when this occurs at the hand of one (or two, or in this case three) who have sworn to Serve and Protect.

So this Thursday, on World Down Syndrome Day, instead of promoting awareness, I and others like me will instead be taking action.  We are asking no longer;  we are demanding.  Fairness.  Equality.  Inclusion. 

Now.

Take action.  Speak out against the violence perpetrated against those with ID/DD's including Down syndrome.  Speak out against outdated, paternalistic practices by both Medicine and Education.  Denounce stereotypes, the promotion of hatred and yes, even (and especially) the R-word. Remember Robert Ethan Saylor and all victims of violence, of discrimination and neglect.

We need action.  That's the type of awareness I want to promote this World Down Syndrome Day.  It seems a lot more important than wacky socks.

[Originally appeared on Down Wit Dat]  

We Need To Own Robert Ethan Saylor’s Death –

What I remember vividly from Spike Lee’s film Do the Right Thing (1989) is Public Enemy’s ‘Fight the Power’ pumping in the background of the film’s narrative and  the death of the character Radio Raheem by a police officer. Radio Raheem was Lee’s cinematic response to the disproportionate number of deaths of young African-American men at the hands of law enforcement.

The criticism of Lee at the time was swift and intense. Basically, it was “Why so negative and angry Spike Lee?” As a ‘revolutionary mother’ I say Go, Spike! Be as Righteous as you Wanna Be. And – as for angry? Yea, I am angry, too.

Robert Ethan Saylor

I am angry that the response to the death of Robert Ethan Saylor has been about many things but not about the fact people with disabilities are disproportionately vulnerable to violence.

Instead we get hypotheses that not merely skate around the subject of violence but bends over backwards to avoid it entirely:

1. I have read ad nauseum that Mr. Saylor’s death might be attributable to poor police training. (How do the vast majority of good police officers feel about that analysis?)
2. The individuals involved may have had difficulty discerning what was expected of them as police officers working in the capacity of off-duty security in the private sector. (Does humanity just go out the window in the private sector? These guys were not working for Black Water. They were rent-a-cops at a movie theater.)
3. “These individuals may have additional anatomical characteristics which may place them at greater risk for unintentional harm”. This theory suggests people with Ds are more vulnerable to dying from being subjected to a restraining hold. (This one was posted on a national site for people with Down syndrome. You can forget my donation this year.)
4. Given people with Down syndrome are “so stubborn” Mr. Saylor  may have contributed to his own death by responding in some stereotypically Down syndrome manner in  the confrontation with the security officers. (This sounds like the inverse of an “upitty” Black man. Both depictions are repugnant and victim blaming.)*

What I have not heard enough is that the reality is people with disabilities are more likely to die in a police confrontation than someone who does not have a disability. The organizations entrusted with the messenging in support of people with Down syndrome in the U.S. have chosen to make official statements that cite the vague need for ‘awareness and training of police officers’ but no statements or statistics about the prevalence of violence inflicted on people with disabilities.

I would suggest to these organizations that they make Robert Ethan Saylor their bully pulpit. Have his death be the rally cry that calls attention to the intersection of disability and violence.  By all accounts, Mr. Saylor was a young man who wanted to watch a movie twice. He had Down syndrome. He was killed. Where is the muddy water? Where lies the fear this is not the case to make this case on?

Robert Ethan Saylor

This didn’t ‘just happen’ to Robert Ethan Saylor. It happens – period. People with disabilities are more likely to suffer from violence of all manner and on all fronts. If an individual is disabled and a child the rate of violence increases. If an individual is disabled – and also a person of color the rate of violence soars.

This violence is a symptom of how we view people who are different from us. They are the Other. They are not like US. In fact the more they do not look like us the easier it becomes to inflict violence.  Mr. Saylor was the Other in this unequal equation. His death needs to be owned by us.

Mr. Saylor was not my son but he could be. My son is six-years-old.  He has been victimized twice in his short life – first in his family of origin and then again by a speech therapist who restrained him illegally – and to the point of hysteria. Given the rates of abuse perpetuated on children with disabilities his life experience is unfortunately typical.

My heart goes out to the family of Robert Ethan Saylor.

* This particular rationale for Mr. Saylor’s death was added after I received a comment from a reader who shared with me ‘a (Down syndrome) group’ she is in has discussed this as possible explanation. In a word – disheartening.