Tuesday, April 30, 2013

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

Wednesday, April 24, 2013

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.

Monday, April 22, 2013

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]  

Tuesday, April 9, 2013

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 blogDSU 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.
Down Syndrome Uprising

Thursday, April 4, 2013


"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]  

Wednesday, April 3, 2013


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.

Tuesday, April 2, 2013

Cutting Our Teeth on a Paradigm Shift –

We are mad as Hell and we are not going to take it anymore! Sound about, right?
I believe we may be living at a historic time with regard to the human rights movement of people with Down syndrome. It is historic in that it is seen not just as ‘a progressive shift’ but ‘a radical shift’. And it’s seen as ‘radical’ in comparison to wearing kooky socks on their behalf.  Meaning these people are just so beaten down any attempt to bring them to street level is seen a paradigm shift.
In some ways it is a movement unlike any other and it is one that is very much like others.
How this struggle is similar –
By any standard this is a group of people who have been the recipients of great violence and discrimination. The Global Down Syndrome Foundation does a better job than I could at delineating the civil and human rights struggle of people with Down syndrome. Following this link for a timeline of events.
How this struggle is different than other marginalized groups -
File these under the general category of benevolent paternalism:
The primary advocates are parents. People who love their children yet some of us are still talking publically about how they had to grieve the fact they gave birth to a child with Down syndrome. Wait a minute that could actually go up to “similarities”. I talked to two friends yesterday who are both gay. They shared with me their parents loved them but just wished they weren’t gay. As adults they said it still hurts and is not really unconditional love.
Parents can also be the proponents of some stereotypically behavior. For me, I have been guilty of how “special” my kid is rather than how similar he is to anyone. And – I write a blog titled ‘atypicalson’ so you would think I know better. (I know he is different – that is quite obvious – but he is also very much like ‘typical’ children. Letting go of his “specialiness” is a mother’s struggle. I cannot completely let go of that. This is me being completely honest)
There is also the “happy”, “stubborn”, “willful”, “angry” generalizations. I cannot account for where the “happy” generalization came from. That’s just a whole lot of people who don’t actually know anyone with Ds.  As for “stubborn”, “willful”, “angry”? The way we treat these people I am surprised “homicidal” isn’t in the mix.
Then we have the advocacy organizations. Unlike – NAACP, GLAAD, NOW – the leaders of Down syndrome advocacy organizations such as the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC) are not lead by the discriminated group. People with Down syndrome do not serve as the executive directors or as the majority membership of the board of directors.
This is where it gets tricky. How do we insure these organizations are truly speaking on the behalf of people with Ds? At what level of involvement in an organization should a self-advocate serve to make sure people with Ds are represented by an organization’s mission? And – who decides that mission? And should the mission change with the times?
File this under Thank You Not Very Much Jocelyn Elders -
Brief aside: There are two things I dislike mentioning when it comes to Down syndrome and me: one, I am adoptive parent and two, I am pro-choice. The first statement diminishes me and the second just gets me in a world of shit.
What other discriminated group is being eradicated prenatally –  in 2013?
This choice is often based on bad information and irrational fear. It is also dispensed by someone who doesn’t have Ds, has not raised a child with Ds or maybe doesn’t even know anyone with Ds. It’s a lot like informing your vote based solely on Fox News. The difference is that in the Ds debate, there are no other channels. Everywhere it’s the same message: Quicker genetic tests that save families from suffering the consequences of such a diagnosis is treated as an objectively good thing and the assumptions that lead one down that path are not adequately challenged.
I wish my husband and I could do a PSA on why you should at least consider keeping your baby. It would go something like this:
I was 47 years-old and my husband was thirty-three years old when an adoption worker with our State’s foster care system asked if we wanted a two-year old boy who had Down syndrome. We said, “Yes”, without really thinking about it. I don’t know why. I seriously eff’ing-can’t-for-the-life-of-me remember why it didn’t seem like a big deal. We put more thought in to which washing machine to buy.
Our kid is the Bomb. The washing machine sucks. If we can do it you can, too.
Apparently, my husband will not get to speak in the PSA. He is very good looking so he will serve as the telegenic non-speaking parent of a kid with Down syndrome.
Some radical thoughts for the present and the future:
Presently we are confronting the issue of Robert Ethan Saylor’s death. We still need that independent investigation into to his death. It would help if the Department of Justice would feel our ‘tension’, if the National Down Syndrome Congress would do more than release a press statement that an independent investigation is needed and demand one and as for you National Down Syndrome Society – Seriously get off your ass and do something! Here’s the deal we are this close to figuring out how to hit you in your pocket book.
We need to reach out to self-advocates with regard to this struggle. We have to if this movement is to be a true and righteous representation of people with Down syndrome. And, then, we have to listen.
For us as parents – we need to raise our children to be self-advocates. We must show them how to advocate on their own behalf.
Finally, I cheered with many others when President Obama included the gay rights movement as part of his last inaugural address:
“We, the people, declare today that the most evident of truths – that all of us are created equal – is the star that guides us still; just as it guided our forebears through Seneca Falls, and Selma, and Stonewall…”
When will people with Down syndrome be included in an inaugural address? Meaning how long will it take for a Paradigm Shift to become the New Normal?