Wednesday, March 27, 2013

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
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.

Sunday, March 24, 2013

CALL TO ACTION - Robert Ethan Saylor

Friday, March 22, 2013, exactly 69 days after Robert Ethan Saylor died of  asphyxiation, J. Charles Smith III, State's Attorney for Frederick County, Maryland released the following press release.

Despite being ruled a HOMICIDE, the three off duty deputies who were working as mall security at the time, "employed police procedures pursuant to their training with the Frederick County Sherrif's Office".

It is unknown what exactly this training entails, how this particular county compares to other agencies worldwide, how this level of training translates when "moonlighting" as mall security and ultimately, how this all relates to those with Down syndrome.

However, the fact remains that "but for the actions of other individuals Mr. Saylor would not have died."

Within this press release is the phrase "This individual was compromised by his Down's Syndrome..." It is Down Syndrome Uprising's opinion that this ruling only further illuminates the bias present with lawmakers, judiciary bodies, and health care professionals towards those living with Down syndrome.

Robert Ethan Saylor's case is sadly not unique and will continue not to be so unless those employed as "protector[s] of the public" realize that people with Down syndrome are full-fledged members of that same public.  People with Down syndrome can no longer be dismissed out of hand as "compromised" or inferior to other citizens, especially when such things are neglect, violence, and death occur.

This is a call to action.  Speak out against this senseless death and predictable ruling.

Down Syndrome Uprising asks for you to contact:

To demand an independent investigation, contact these instances here.

Update from NDSC on March 25: 

"Tomorrow afternoon, NDSC Executive Director David Tolleson, Affiliate Director Sue Joe, Governmental Affairs Director Susan Goodman, and Board Member and Kennedy Krieger Down Syndrome Clinic Director Dr. George Capone, will meet with representatives from our Frederick County, Maryland, affiliate, F.R.I.E.N.D.S., NDSS, and the United States Department of Justice regarding the tragedy involving Robert Ethan Saylor. A representative of the Saylor family will also attend the meeting, which was organized last month by F.R.I.E.N.D.S. President Denny Weikert. Both the Saylor case, as well as the need for national first responder training regarding individuals with disabilities, will be discussed. NDSC is proud to partner with F.R.I.E.N.D.S., Kennedy Krieger, NDSS, DOJ and, especially, the Saylor family, as we work to ensure that such a needless loss never occurs again."

Update from NDSC on March 27: Press release

The National Down Syndrome Congress (NDSC) for them to take a stand against this decision and to ensure dignity and respect to Robert Ethan Saylor and all people with Down syndrome as well as to clarify a statement that foreshadows the one found in the press release attributing responsibility for Robert Ethan Saylor to his Down syndrome.

Twitter: @NDSC

The Attorney General of the State of Maryland to push for an independent inquiry into the case of Robert 'Ethan' Saylor.

Contact numbers:(410) 576-6300 1 (888) 743-0023 toll-free in Maryland(410) 576-6372 TDD

Mailing address:
Office of the Attorney General
200 St. Paul Place
Baltimore, MD 21202

Form letter to Attorney General of the State of Maryland can be found here

Any and all local, national and international media outlets which you personally deem appropriate with this press release.

Press release from Down Syndrome Uprising can be found here

If you have a blog, we also ask you to write about this case and the activism you wish to see from your readers, the government, and those who represent you. Share your post with Down Syndrome Uprising

Use Twitter.

Use Facebook.

Sign the petition for Robert Saylor at Change.Org

Let's show a united front!

Let's show our outrage!

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.
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.)
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
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 21st 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.

Thursday, March 21, 2013

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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Tuesday, March 19, 2013

My World Down Syndrome Day post is not about socks –

OK, just the first part of this post is about socks.
In that, I am not going to wear Lots of Socks! On World Down Syndrome Day. Either is our kid. (Mostly, because he doesn’t know he has Down syndrome. He also doesn’t know he is really super short.)
For those of you not in the know – “21 March 2013 marks the 8th anniversary of World Down Syndrome Day (WDSD), a global awareness day which has been officially observed by the United Nations since 2012.” (I am thinking the lag with the United Nations joining is due to countries needing seven years to figure out where they were keeping their citizens with Ds.)
“Down Syndrome International (DSI) invites everyone across the world to wear LOTS OF SOCKS …to raise awareness on …WDSD. We want to get people talking about WDSD on 21 March, and we can do this if we all wear socks…BUT NOT JUST ANY SOCKS…brightly coloured socks, mismatched socks, long socks, printed socks, 1 sock…maybe even 3 socks (or EXTRA socks) for 3 chromosomes. Or if you don’t normally wear socks then wear them. Just so long as they are socks which are on display and people will ask you about.” (
“We can do this if we all wear socks”. What exactly are we do-ing? What’s the end game here? First, I am beyond wanting “to raise awareness”. Awareness might be one step below tolerance. I am for full-on acceptance and inclusion. Second, socks?  An article of clothing that is mostly covered up? Is this the best we have to offer people with Ds in the world? (If we are going to go this inane route what about a brightly colored hat?)
So, let’s say someone notices our socks then what? Where is the script with talking points? What are we telling people? How happy they all are? Don’t mind them? There are not very many – we made sure of that?
I smell a rat. Did the sock manufacturers of the world scheme this up? Just like the ‘Eat Meat’ and ‘Got Milk’ campaigns? (Yea, I’m the suspicious type of mother.)
There is a paradigm shift happening in the Down syndrome community towardsacceptance and inclusion and away from awareness and tolerance but it is not being reflected in our international and national Down syndrome organizations.  And, it is certainly not evident in DSI’s WDSD actions. (Don’t just take my word for it: check out this post -Make Down Syndrome day A day of Action.)
We have so marginalized this group of individuals that an activist movement that acknowledges Ds is a human rights issue has been difficult to achieve and sustain. We also have a situation unlike other activists’ movements – except the LGBT movement – where the individual oppressed is raised by a parent(s) who is not.
It occurs to me there’s at least one other similarity: That both identities need “fixing,” which assumes there’s something wrong with the individual. ( For more on that read: this post Natural.)
In January of this year Jeanne Manford, a mother and activist died. In 1972, Ms. Manford wrote a scathing letter to the New York Post criticizing the police for not intervening and protecting her son, Morty, who was gay and demonstrating in a protest from being beaten. It was unheard – epic even – then for a parent of a child that was gay to stand up and say my son is a human being and deserves your respect and protection. She went on to found a national parents group that stood in support of equal rights for their gay children.
We could use a Jeanne Manford right about now. Loving our children is not enough especially when we as parents are deciding what is in the best interest of our children. If that interest is mired in fear of inclusion than those children ride the proverbial short bus. If those interests are for full inclusion the options expand.
At about the same time Morty’s mom was marching for the rights of gays the conventional wisdom of doctors to parents was to have their 'imbecile children' institutionalized. Many parents did. Some did not. They went against the fray and kept their children at home like all children.
With the end of de-institutionalization some parents favored the dictated road of ‘separate but un-equal’education and accepted developmental classrooms for their children. Other parents fought and still fight for inclusive education.
Our children – those with Down syndrome and those without Down syndrome – will be what we tell them they are. If we say you are equal and worthy and important and enough they will be.
As parents we must decide this is a human rights issue. We must decide to fight. And it will be epic. 


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.

Monday, March 18, 2013

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. 


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]  

Saturday, March 16, 2013

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.

Thursday, March 14, 2013

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
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
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.

Wednesday, March 6, 2013

Spread the Word "Day of Action" Blog Symposium

Today, 3:6:13 is a Day of Action.  Today is "Spread the Word to End the Word" Day.  If you are unfamiliar with this campaign and pledge, follow this link.

In honour of today, Down Syndrome Uprising is Spreading the word by hosting a blog symposium.  People from all over the world are encouraged to post about the R word, read what others have to say and comment.  Let's keep the dialogue going.  Let's Talk... about Respect.

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Take the Pledge.  End the R-Word.

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