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]

Call to Action: Va. Lt. Governor Candidate E. W. Jackson

According to his book, Ten Commandments to an Extraordinary Life, the Republican candidate for Lt. Governor in VA, E.W. Jackson, believes that "birth defects" are the result of sin. 

"It is the principle of sin, rebellion against God and His truth which has brought about birth defects and other destructive natural occurrences."

After centuries of ignorance, we're still battling for basic human dignity.

Tell E.W. Jackson that genetic diversity is not the result of sin.

EMAIL
info@jacksonforlg.com

FOR MEDIA INQUIRIES
press@jacksonforlg.com

ADDRESS
P.O.Box 15003
Chesapeake, VA 23328

PHONE
757-802-4246

TWITTER: @Jackson4VA

FACEBOOK: https://www.facebook.com/jacksonforlg

Down Syndrome Uprising's Advocacy Blog Symposium

Before work, after the dishes, in the doctor's office, when the kids are sleeping, at the hospital, hiding in the linen closet, at a traffic stop - What Does Your Ever Day Advocacy Look Like?

Do you change laws, minds, or the world?
 
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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

An open letter to Motherlode of the New York Times

We are writing as the founders and representatives of Down Syndrome Uprising (DSU). DSU is a global grassroots, volunteer activist initiative.  DSU’s mission is – in part - to: serve as a communication hub for the community of Down syndrome activists. The founders' function as individuals is to maintain a page and a blog, curate information and serve as the communications team. 

Our base of operations is a Facebook page and a blog. DSU formed in January of this year and has grown to over 1000 fellow online activists. 

On April 7th we posted a ‘call to action’ to contact the New York Times (NYT) to express concern that the NYT allowed hateful comments regarding people with Down syndrome to be posted in response to the editorial published on April 1st titled “Outlawing Abortion Won’t Help Children with Down Syndrome” by Alison Piepmeier. 

On the 'Help' page of the NYT you indicate on what basis a comment is moderated: 

“Our goal is to provide substantive commentary for a general readership. By screening submissions, we have created a space where readers can exchange intelligent and informed commentary that enhances the quality of our news and information."

"While most comments will be posted if they are on-topic and not abusive, moderating decisions are subjective. We will make them as carefully and consistently as we can.” 

Given your own guidelines it seems you made a decision to not moderate a great deal of comments that if made in reference to any other group of people who are discriminated against would not be seen as “intelligent” or “informed” and would likely be seen as "abusive”. 

We can only guess at your motivation to not moderate these comments. Perhaps when a discussion about a particular group of people is wrapped in the context of the abortion debate it becomes difficult to decide what is acceptable dialogue and what is hate speech? 

Our concern is that the comments did not reflect an actual debate on abortion but a hateful rant on the politics of accepting people who are different from us to exist. If those comments were about people who were poor or gay or Jewish or people of color would the NYT have considered them beyond the pale? Would you have allowed those comments to be posted? 

If they would not have been allowed for other groups we as a society have deemed protected why is hate speech still allowed for people with Down syndrome? 

We hope this letter will serve as an incentive to explore this issue by NYT. You could be telling a story that is lacking in the public sector – insert great title here.

Respectfully,

Down Syndrome Uprising

Antidote

I don't want to write about Robert Ethan Saylor.

I don't want to write about how he cried for his mother right before he died. I don't want to write about how the people whose actions left him dead are already back at work protecting others, or selling another ticket to a movie, or looking back at that night when a life was lost while they did nothing because someone qualified was taking care of it, or because they were afraid ...of him? I don't want to write about how confused, biased, and embarrassingly void of thought, real research, and understanding the media coverage concerning his death, and his life, has been. I don't want to write about the deafening silence from those who get a salary for representing Ethan and all people with Down syndrome (never again paid by my daughter), and then, too late, filling that empty air with even emptier words. I don't want to write about agendas or people who can't come together even in death, and who bicker, or try to one-up each other in some strange game of 'Whose cause is this?', or people who look at their own child with Down syndrome and still see other, or people who don't see a problem with a police department investigating its own employees. I don't want to write about people who hide behind the anonymity of the internet to spew their venom on 'retards', unsuspecting parents, and at anyone who reads the comment section in a newspaper (you are scum and I feel sorry for you). I refuse to write just because if I don't, the Department of Justice might just think that this horror, this violation of basic human rights, this dismissal of 6 million people has blown over, because there have been some vague promises of 'training' for people, who are supposed to be protecting my daughter as an individual, on how to see her and the other 6 million exactly like her even more differently, as strangers in their own homes, as beings beyond comprehension by the simple power of common sense.

I don't want to. Ethan isn't the cause of this. He isn't to blame. Neither is his Down syndrome. The blame belongs on the shoulders of those whose actions led to Ethan suffocating to death, and on a society in which a person's life is instantly deemed to be of lesser value, less worth saving, dismissible, or to have a potentially dangerous, out-of-control component, when his assumed IQ score is below 70.

Society needs fixing. Those of you who look at Ethan or my kid and don't see a person, an equal, need fixing. Adjustment. Change. You don't get to judge my daughter, I get to judge you.

Successful communication is not an effortless task. Communication takes practice, patience, compassion, and a willingness to listen and to try to understand. Communication takes years and years to learn and even then, in any given situation, at any given time, communication might fail. Even with the best of intentions on all sides.

But what if the intention, the willingness to understand, is not there? What if, instead of seeing and listening to a person trying to communicate with you, all you see is a stereotype?

He isn't small? He isn't cute? He's not smiling either? There's no belly laugh. He's not happy. He's not contained. Where is his keeper? Why is he by himself? Who let him out? He's reacting. He won't understand anything but force. Not fit to be out in public. Those can't be words. They don't understand. They don't think. Did he just say 'mom'? Nah. Couldn't have. Retard strength. Better watch out. 

But what if you grew up having a friend who had Down syndrome? A student in your class? What if the lady who sells you your weekly lottery ticket and you regularly chat to had Down syndrome? What about a coworker, your boss? What if a kid in your daughter's soccer team had Down syndrome, in your son's ballet class, a guy in your aunt's book club, that lady who golfs with your sister-in-law? What if your favorite television show had a character with Down syndrome? How about the bartender at your favorite Friday-night watering hole? What if you had that Friday-night beer sitting by your friend who has Down syndrome, listening to his woman troubles or work stories, and telling him about this weird mole on your back, or how you think your car might not need all of those repairs the shop's quoting you for? What if we valued everyone, included everyone, and then let the chips fall where they may? What if we didn't assume anything, but looked at everyone as an individual?

What if people with Down syndrome really were included in every aspect of society? What if we all made an effort to understand, to communicate?

Simplistic? Maybe. A real choice? Yes.

Include. Interact. Accept. Embrace. All four are choices you can make. Today.

Robert 'Ethan' Saylor: Death by Down syndrome -

I was convinced before the release of the grand jury results yesterday that the officers involved would not be charged in the death of Mr. Saylor. What I had not planned on was he would be blamed for his own death. It was determined by the medical examiner that Down syndrome and obesity made Saylor more susceptible to breathing problems.

In the actual report the words are – “This individual was already compromised by his Down’s syndrome (sic) obesity, habitus and heart disease making him more susceptible to sudden death in stressful conditions which would compromise his breathing.”

The report states the officers did not hit him in the head or neck.  They did however use three sets of handcuffs to subdue Mr. Saylor. They released him from the handcuffs and turned him over “when those around him noticed he was having a medical emergency.” (It does not indicate if “those around him” included any of the individuals who restrained him.)

According to his family…”Saylor had no ongoing health problems. Also, “the family has been concerned that the investigation was handled by the same sheriff’s office that employs the deputies.”

I wrote about Mr. Saylor’s death in an earlier post We Need to Own Robert Ethan Saylorthat was later quoted in a New York Times editorial.  In that post I made mention of the fact a national Down syndrome organization stated prior to this recent grand jury finding – “These individuals may have additional anatomical characteristics which may place them at greater risk for unintentional harm.”

Robert Ethan Saylor

At that time I did not name the organization. Today I will tell you the National Down Syndrome Congress (NDSC) joined with Family Resource, Information & Education Network for Down Syndrome F.R.I.E.N.D.S. to issue that statement on February 21^st of this year. NDSC is one of the most if the not the most respected Down syndrome organization in the U.S. This is certainly the view I held. Not so much today though. F.R.I.E.N.D.S. who I was not aware of “is a voice for all individuals with Down syndrome”.

I have tremendous concerns the cause for Mr. Saylor’s death was preemptively offered and sanctioned before the conclusion of a grand jury investigation by a trusted and legitimate voice of the Down syndrome community in this country. Their initial stance was silence to Mr. Saylor’s death by being “cautiously quiet awaiting the outcome of the ongoing investigations.” Given public pressure they found “it necessary to finally break (their) silence.” Without knowing anything about the facts why did they feel it necessary to even entertain the possibility his death was related to his Down syndrome?

I am trying to think what other national advocacy organization representing any other discriminated group would portray what feels like ‘victim blaming’ as advocacy? At this point all I can ask is as a mother of a son with Down syndrome please stop speaking on behalf my of child.

The outcome of the grand jury is devastating enough but to know it was foreshadow by an organization I place my faith in to advocate for my child’s best interest is not only unacceptable it is leaving me in despair.

Robert Ethan Saylor’s death broke my heart. You took my hope.

Down syndrome, Social Stigma and Images of Exclusion

(By Kieron Smith, author of The Politics of Down Syndrome)

Mostly I think people are afraid.

Society has become obsessed with image, consumption and superficiality. Politics appears to be going the same way.

Things have improved for people with Down syndrome since it was first identified 147 years ago, but not as much as they should have. Now we have institutions without walls, where people with DS are excluded from work, integrated education, plus suffer from second class health care and screened out by public health policies.

Society is obsessed with risk, with feeling powerless – Down syndrome is presented as a risk so serious that an national screening programme is required– you get assessed for 'risk' during pregnancy, not chance. Stigma does the rest, images from institutions and from TV series that bang on about difference. The idea of Down syndrome creates a cascade of potential risks and fear of the unknown, stigma.

The danger is that we respond to this scared and superficial environment with piecemeal and superficial solutions.

Visibility of people with DS on billboards, in exhibitions, catalogues and TV ads is all well and good but if people don’t interact, without real inclusion, then these images almost emphasise their own unreality.

In the real world people with learning disability are still excluded - they don’t get to be part of the picture.

The Gulf war was referred to it as a virtual war, so stylised and selective were the images we were exposed to.

So, there is image and there is power.

The images, the oft quoted awareness that people with DS exist, might nag at a few charitable consciences but serve to change little. If anything, because of the distance in everyday life between people with DS and society – then images of difference, in isolation, could actually play to a fear of difference, the other and the unknown.

The point is to change it.

Change will come when the fear is overcome and the stigma dispelled – when people are engaged with people who have DS. Not sharing an ‘endeavour of learning’ somewhere in a different unit – but in the same class, not excluded entirely from the workplace – but working together, not screened out by default.

We need people to speak up, we need self-advocates, we need like many liberation movements before to stand up and demand an end to stigma and we need to demand inclusion at every level of society, and to have big ambitions.

Differences are not deficits – a diverse society is a richer one, at its core the message should be that people with DS are more alike than different – like most groups who have been subject to stigmatisation. But we're going to need to shout louder to get heard.

Today is World Down Syndrome Day and we are blogging about acceptance, inclusion and activism. Join our Blog Symposium!

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Natural

Let me open with the most important message that I am ever going to give to you. A message I will shout from the rooftops as long as I'm here on this earth. A message that fuels my advocacy and activism and allows for me to leave good intentions and acts of kindness that are really moments of pity or charity in the dust, fallen by the wayside with other outdated and faulty notions. A message that I believe in with every fiber of myself, and that guides my parenting, my relationships, and my being.

Disability is natural.

Down syndrome is natural.

Trisomy 21, or Down syndrome, is a frequently occurring genetic variant, highly viable with life, and something that simply, naturally occurs. Down syndrome is not the other. In a parallel life, you could have Down syndrome. In this very life, you could have very well been born with Down syndrome.

And that wouldn't make you unnatural, challenged, broken, or less than human. You would still be you.

Down syndrome does not need to be fixed or 'normalized'. It needs to be allowed to exist as something that is an acceptable and natural part of some people, our equals in everything, regardless of their perceived capabilities. Meeting milestones, or being highly functional (whatever the hell that means) is not 'winning' at Down syndrome, or at life. Living life, and having equal opportunity for the same experiences as everyone else is what life is all about.

You know, being human. Having rights and responsibilities, and being able to decide what to do with those rights, and whether to honor those responsibilities. And, facing the consequences.

On the 21st it is World Down Syndrome Day. A special day for celebration and awareness. This year there's some weirdness about wearing loud socks to raise awareness. An icebreaker for discussion? In all honesty, I don't really think either of us needs an icebreaker for awareness. We're evolving.

We need to take action.

You might have gleaned from my last post that simple awareness is no longer doing it for me. I know better now. There is a need for acceptance. There is a need for action. A need to level the playing field. To make every single classroom inclusive in spirit and in space. To remove having Down syndrome as a negative in a college or a job applicant, as is being done in the case of race, gender, and sexual orientation. A need to embrace everyone's uniqueness and individuality without there being some who are 'more different' than others. A need to stop using language - and not just the word retard(ed), but suffers from, is inflicted with, a Down syndrome patient, a risk of Trisomy 21, them - that degrades, demeans, marginalizes and dehumanizes those with intellectual disabilities. A need to focus on how exactly Down syndrome and those with Down syndrome are portrayed and represented in the media. Unfair and biased portrayals, as well as fluff pieces that utilize those with I/DDs for inspirational feel-good in the mainstream need to be publicly denounced.

We need to actively advocate for acceptance and inclusion, even if it means alienating people who are uncomfortable with having their worldview challenged.

We need active acceptance and inclusion, not just passive awareness. We need active involvement by everyone, everywhere, not just slactivism by adding partial visibility with a click, or a smile, or a token birthday invitation. We need a community where admission is not only by a chromosome count, either way.

You don't have to love someone with 47 chromosomes to understand, you just have to be human.

There MUST be an organization that barks up and makes a terrifying stink every time someone in the media, in medicine, in legislation, in the public eye, anywhere in the world, gaffes. Be it the r-word or a homicide swept under the rug. There must be an organization that ensures that there are repercussions for marginalizing acts, for drawing on stereotypes, for exclusion, for dehumanization by language. There must be anger and outrage that leads to shifts in attitude and to organized action. Instead of intentions, we need to focus on consequences, on what is, not what was intended.

We need to stop accepting crumbs, in the fear that if we don't, we might not be 'liked'. 

Why, hello there REVOLUTION. You're needed now.

People with Down syndrome are not defective. Society is defective.

Yet. This is not about legislation, or about funding, or about research. This is about attitudes. This is about human rights.

And the question of who counts as human.

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]  

Down Syndrome Uprising: A Manifesto

We are Down Syndrome Uprising, a global collaboration of Down syndrome human rights activists. Through our efforts, we will ensure the acceptance and total inclusion of those with Down syndrome.

DSU serves as a public defender for those with Down syndrome. We are a watchdog entity, dedicated to serving the public as a communication hub that educates with regard to the human rights of those living with Down syndrome.

We Believe:

That people with Down syndrome have suffered and continue to suffer from human rights violations world-wide.

People with Down syndrome should be accepted exactly as they are, and be fully included in all aspects of society and should be given the same opportunities as everyone else.

All people with Down syndrome have to be first and foremost seen as unique individuals with unique talents and challenges.

That simply by being part of humanity, people with Down syndrome have a right and a responsibility to exist in society without having to justify themselves as contributing members (any more than any other person).
 
We Expect:

Fair and balanced portrayal of Down syndrome in the media, by medical professionals and understanding by the general public.

Fair and balanced portrayal and understanding of individuals with Down syndrome everywhere, highlighting everyone's uniqueness and individuality.
 
We are creating change now:

Down Syndrome Uprising is facilitating change through creating a space for discussion. We are challenging perceptions of Down syndrome in both the mainstream media and often overlooked areas such as in medical and health related literature. We will continue to publicly denounce any source that perpetuates misinformation, stereotypes, outdated information or blatant hatred towards Down syndrome itself or individuals with Down syndrome.

DSU is a initiative that organizes activists to engage in call-to-action campaigns to assure the civil and human rights of people with Down syndrome to live with full acceptance.