Shame On Us

Today is Robert Ethan Saylor's 27th birthday.  

If you don't know Ethan, I have written about him here, here, here and also here.

I will sum up Ethan's story in a few words:  He was born in 1987.  He had Down syndrome.  He loved and was loved.  He died on January 12, 2013, three days after his 26th birthday, over the price of a movie ticket.

My last line usually garners much debate in articles, but essentially, that is what happened.  The exact details of the incident that happened in the few minutes between screenings of "Zero Dark Thirty" may never come out, because maddeningly, shockingly, sadly the off duty officers involved in Ethan's death were never charged with anything.  Ethan's death was ruled a homicide, but no charges were ever filed (you can read more about that, here).

I find it hard to understand.  If someone can be charged with involuntary manslaughter when they accidentally kill someone with their car, shouldn't they be charged with the same if the accidentally kill someone with their hands?  I am no legal scholar, but something seems amiss, here.

Since that day, it has been mainly on the family to speak out.  They were joined by some Down syndrome advocates in crying out for justice.  We have called upon our national organizations to act, to denounce and to support and eventually, with much prodding from the advocates, our national organizations began to speak out, though,  too quietly and nicely for my taste.  If it had been up to me, as director of a national organization WHOSE VERY REASON FOR EXISTING is to advocate for those with Down syndrome, I would have called for an ad in every national paper saying "Down syndrome is not a cause of death".  But, that's just me.

So, it was mostly up to the family and a small group of fierce advocates to get the story told.  Slowly, articles began to appear in national papers, but still there were plenty of people even in the Down syndrome community that hadn't heard about the story, even six months after it happened and even still, today one year later.  I find that absolutely appalling.  I find it hard to understand why you can say the name Trayvon Martin and everyone knows whom you are speaking of, but saying the name Ethan Saylor doesn't even necessarily ring a bell with people who should care the most.

Part of me understands that people don't want to be reminded of all the terrible things that happen in the world.  I can relate to that.  I don't watch the news with any regularity because of it; it all seems like bad news, from the top stories to the weather.  They may save 45 seconds at the end for some kind of "feel good" moment, as if that will erase the last half hour from our collective psyche.  It doesn't work.

So, many of us surround ourselves with what feels good and we try to ignore the bad and the ugly.  We look at cute baby pictures instead of dealing with what is frightening.  I do it, too.  There are times when calling for justice seems like a monumental task; mostly, because it is.  There are times when all I want is to hug my own kids and look at pictures of babies and kittens and to stick my fingers in my ears and say "la la la la, I can't hear you".  And I do; sometimes, for weeks.

I have to get back to the fight, though.  I can't tolerate just being sad or angry.  I have to act, or else I feel like I have no right to complain.  I deserve an injust world if I am not willing to fight for justice.  

I think this is a lesson that the Down syndrome community needs to learn from the LGBTQ community.  When one of theirs is hurt or killed, we all hear about it.  We all react.  Those of us who have the will, act, in ways big and small, so that justice can be carried out.  We work together to make the world better, not just for LGBTQ people, but eventually, for everyone.  

I have written before about this line of people waiting for justice.  Individuals with intellectual disabilities are on the back of the justice bus, it seems.  I wonder why we can't see that the line really doesn't exist and the bus is a figment of our imagination as well.  We are all human and we all want and need the same things.  A cry from one of us should be heard by all of us, regardless of race, sex, station, orientation, religion or lack thereof, etc.  If I can't see a bit of myself in every other living being, what hope do I have that someone will relate to me?

I urge the national Down syndrome groups to start acting for real change.  Do not let another year go by without calling loudly, publicly for change in the public perception of those with Down syndrome.  It's not about preaching to the choir.  It's about demanding that the rights for our children are recognized.  You have the means, you have the forum, all you need is the will.

I urge gay rights groups and women's rights groups and minority rights groups to look at Ethan and see your own fight and join us.

I urge individuals to stop crying over how sad this is and DO SOMETHING!  Pick up a phone, send an email, write a letter or a comment or a blog post or SOMETHING.  Take action, or expect to see more of the same again and again.

If Ethan's tragic death can mean a change in the way people with Down syndrome are treated, there may be some measure of peace his family could receive in that knowledge.  Isn't it the least we can do for them?  For Ethan?  For other victims of injustice?

If we don't care enough to act, shame on us.

My Reaction to the Article "The Preventable Death of Ethan Saylor" by Stephen Greenspan, Ph.D.

Here is the link so you can read it for yourself.

It has been shared many times since it came out last week.  I've seen it on national Down syndrome groups pages and on some friends', as well.  All I can wonder is:  why?  Are we so starved for press in the I/D community that we will cling to any scrap that blows our way?

Let me take a step back.  I am glad that the horrific, tragic, TOTALLY PREVENTABLE death of Ethan Saylor is getting more and more press.  I am glad it has not gone away.  I am glad that others have taken some of the pressure off his family for getting their story told; but this?  This is more victim blaming and there has been plenty of that, already.  It is a clinical summation made up of sketchy details and inferences.  

The reference to Ethan's IQ makes me want to climb through cyber space and throttle this guy.  Who cares what his IQ was?  For one thing, IQ tests for people with Down syndrome are not terribly accurate, especially when the tests were done years ago.  And even if 40 IS an accurate IQ, who cares? Seriously?  Is there in IQ threshold for watching movies?  If so, what is it?  Is no other measure taken into consideration?  

"I would have thought such a movie beyond the comprehension level of someone with Ethan’s IQ level, but presumably he enjoyed the non-stop nature of the action."  says Dr. Greenspan.   

Again, seriously?  Dr. Greenspan, with his many, many years of research and writing about intellectual disability should know very well that typically, a person with Down syndrome's receptive intelligence is much, much stronger than their ability to demonstrate their knowledge.  So, just because Ethan would not necessarily be able to talk at great length about what it was he found so fascinating about the movie, he did enjoy it and he would have been able to discuss it on some level if events had not unfolded the way they had.  Truthfully, none of that matters.  It's none of the doctor's business why Ethan saw that particular movie.  

Dr. Greenspan also writes about Ethan's weight being a factor in his death. This is pure nonsense.  Anyone who has a crushed larynx will die from it without immediate medical attention; period.  You cannot breathe when your airway is blocked, whatever your weight.  

Dr.  Greenspan blames Ethan for lashing out at the police officers.  These officers WERE NOT IN UNIFORM!  If they had been, maybe things would have been different.  The officers were moonlighting as security guards.  How was Ethan to know that they were really cops?  He was trying to get more money, via his phone, for another ticket.  In Ethan's mind, he was complying with the request that he purchase another ticket.  Whether that was logical or not, is beside the point.  In the few minutes the officers and management could have waited, without harming Ethan, his mom would have arrived, he could have had a new ticket, or he could have left.  They refused to give him the opportunity to make the situation right.  I find that indefensible.  

Even without all of that, even if the officers were uniformed and Ethan was hitting and kicking (which I have not read that he was), what does it imply?  That feeling threatened (with good reason, apparently) is a crime punishable by death?  I know, I know, they didn't MEAN to kill him; but they did.

"Whatever the tolerance level that police departments have for using potentially deadly force (and apparently the tolerance level is fairly high in the Frederick County Sherrif’s department), one would like to think that are other departments and officers, including within the Frederick department, who would view the behavior of the three officers in this case as unprofessional. It was unprofessional because police officers, along with other professionals (such as therapists), are paid to accept a certain amount of abuse without responding in kind. They are also being paid to recognize when a subject is in an unstable state, and to practice responses intended to calm rather than inflame. Unfortunately, neither of those hallmarks of professionalism were demonstrated in this case."  (emphasis mine).

I definitely think he has a point there.

The last part of the article gets to the heart of the matter, but doesn't tell us HOW to change things.  We certainly need the how.

 If there is any lesson to be learned from this tragic case, it is that the first instinct of first responders, as well as direct care staff, when dealing with immature behavior exhibited by brain-impaired people like Ethan Saylor, is tolerance combined with gentle insistence involving negotiation, both done in a spirit of love and attempt to understand the individual and help him or her to regain self-control.

On the last point, the doctor and I agree, but until we, as a society, have a better level of tolerance towards different communication styles, appearances and abilities, things like this will continue to occur.  We blame IQ, or cognition, when really what is to blame is prejudice and intolerance for difference.  How do we change minds when it comes to those with intellectual differences?  When will this population be recognized as having equal rights under the law, when time and time again, we are shown that the rules are applied differently when you have a disability as seen here and here?    

I realize that some will see this post as trying to have it both ways.  Maybe I am, but I don't think so.  I don't think it is wrong to suggest that waiting a few extra seconds before you decide to "subdue" someone when you SEE they have an obvious disability is unfair to the "typical" population.  I think it is compassionate.  

I am sure that Dr. Greenspan means well.  I'm just not sure that his post has helped the cause of getting justice for Ethan.

Guest Blog on Behalf of Stacey Calcano and T21 Brigade

I am honored to be a part of a tiny, but mighty group of determined advocates for people with Down syndrome.  ~ Amy

Wednesday, May 29, 2013

Open Letter to the National Down Syndrome Society (NDSS)

NDSS began the Buddy Walk in 1995 to spread its mission of promoting the "value, acceptance and inclusion of people with Down syndrome at the local level." In 2012, nearly 300,000 people participated in a Buddy Walk across the United States, and over $11 million was raised in the process. Local affiliates are expected (and contractually obliged) to give a certain percentage of earnings to the NDSS, as payment for utilizing the Buddy Walk name (trademarked) and framework.  Ethan Saylor, a young man with Down syndrome, died at the hands of sheriff's deputies in Maryland after refusing to leave a movie theater in January of this year, and NDSS ("The National Advocate for People with Down Syndrome Since 1979") has been criticized for its lackluster response in the aftermath of his homicide.  NDSS would like to separate the "joys of the Buddy Walk" from the "Ethan Saylor tragedy," while advocates for Down syndrome all over the world are left questioning the commitment of the NDSS to its mission. The Buddy Walk is the largest fundraiser for the NDSS. 

May 29, 2013

An Open Letter to the National Down Syndrome Society

(Why My Family Won't be Participating in This Year's Buddy Walk)

Last year, my family raised nearly $10,000 for our local Down syndrome group's Buddy Walk (our fundraising effort was so large that I was recently contacted to help field test this year’s newly improved Buddy Walk website).  Unfortunately, I cannot in good conscience participate in this year's Buddy Walk efforts after your failure to meaningfully advocate for justice in the aftermath of Ethan Saylor's homicide.

Two years ago when our family received news we would have a child with Down syndrome, I turned to you, the National Down Syndrome Society, for guidance and assurance.

Your mission statement served as a beacon of hope in a time full of unknowns:

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

We were inspired by this message—and by our young son with Down syndrome—and became very involved in our local Down syndrome community.  We began revving up the troops for our first ever Buddy Walk. The 2012 Buddy Walk was our first experience as part of a much larger community.  We raised so much money that I received a gold star in recognition of my fundraising efforts. I thought, “A gold star!  I got a gold star for Carter!” The day was magical, and everything I'd hoped it would be.

The faith I had in your organization quickly faded in the wake of your late and limited response to Ethan Saylor’s homicide, a true test of your commitment to your advocacy on behalf of those with Down syndrome.  When I learned of Ethan's death, I wanted desperately to contribute in any small way I could to help his family find justice.  I knew that would not happen without an independent investigation into his death, and assumed the NDSS would take a leadership role to ensure this case got the attention and outcome the Saylor’s deserve.  Sadly, the NDSS response was not only deplorably late, but efforts to secure an independent investigation for the Saylor family were absent or minimal. 

The first statement released by F.R.I.E.N.D.S (and supported by NDSS) did not come until six weeks after Ethan's death, and emphasized that F.R.I.E.N.D.S are “strong supporters of the Frederick County Sheriff’s Office.”  Subsequent statements by NDSS stated that the organization was “determined to see to it that necessary and comprehensive actions are implemented to ensure tragedies like this never happen again,” but this determination came at the cost of any effort to secure an independent investigation.  In addition, later press releases had erroneous information, called for no action from the Ds community (asking the community to please not attempt to contact the Department of Justice) and failed to adhere to a language of inclusion and respect I would expect from such a large, respected advocacy group.

Recently, it has come to light that Ethan suffered unexplained injuries before his death (a crushed larynx, suggesting the use of force), yet there have been no new or renewed calls for justice and an independent investigation.

I enjoy reading the “My Great Story” pieces on the NDSS website, but not all stories about individuals with Down syndrome are “feel good stories" or have happy endings. Does that make them less deserving of coverage from our national organizations and national news organizations? I would argue these stories are more important, and where our collective attention should be focused.  We should all focus on righting the wrongs that befall people with intellectual disabilities every single day. Certainly the homicide of a young man with Down syndrome, who went to the movies and died while crying out for his mother, deserves our attention.

Last week, I received an email from the NDSS asking my help in beta-testing the newly improved Buddy Walk site for this year. In response, I wrote:

“Thank you for including me on this distribution. However, I am very conflicted about participating in this year's walk. I am very disappointed in the way the NDSS and the NDSC has handled the Ethan Saylor tragedy. There has been no community mobilization around the death of this young man. The silence of our national organizations is so disappointing to me that I honestly haven't decided if we can, in good conscience, participate this year.”

I received the following in return: 

“I totally understand where you are coming from and would never try to convince you to do something if it doesn’t feel right. You know I would love to see your family’s gorgeous faces, but only if they are smiling and feeling in solidarity with what we represent as a national advocate. I would very much like to separate the joys of the Buddy Walk program and the Ethan Saylor tragedy.I am sorry you feel this way about NDSS. I am really proud of the efforts of my colleagues that have been at the center of all of the conversations and have worked really hard to keep all of our communications about the topic balanced and professional.  Please take as much time as you need to think about it. Registration will remain open until event day.”

This felt like a clear message that we are not welcome at the Buddy Walk unless we are “smiling and feeling in solidarity” with what the NDSS represents as a national advocate.  I’m clearly disappointed in the lack of leadership from our self-described “national advocate for people with Down syndrome” and am not able to separate the “joys of the Buddy Walk program” from the Ethan Saylor homicide.  Having slept on it, I believe I’ve had all the time I need.

This year, my family will not be walking in the NYC Buddy Walk. I cannot, in good conscience, support the NDSS as the same organization I thought it was a year ago. I hope to rejoin the Buddy Walk next year, and I hope that something changes between now and then. I hope you start living your mission:

“The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.”

In sadness,

Stacey Calcano

*For more details on Stacey's personal experience--as well as for specific links and a timeframe for the NDSS response on the Ethan Saylor case, please read "My Not-So-Great Story" here.

Frustration

I just got off the call hosted by the NDSC, the NDSS and FRIENDS regarding Ethan Saylor's death.  I was hoping, not really expecting, but hoping that I would come out of it feeling a little bit better, feeling like they really do get it, that I really am heard...but alas, I do not.  

Training?!?!  Really? We are still talking about training?  How much training does it take to be a decent human being?  How much training does it take to recognize Down syndrome?  Anyone with eyeballs that work can usually recognize the features of Down syndrome.  Do we really need police officers to be specifically trained to "deal" with people with differences?  

Ok, maybe to that last part, we do.  It would be very helpful if officers were taught to recognize a few simple signs in ASL.  It would be helpful if officers were trained that people with cognitive challenges may not respond as quickly as a "typical" individuals to their commands.  Yes, I believe that is true.

What I don't believe is true is that these three off duty officers needed more training.  Between them, they had 40+ years experience.  They knew that the face down restraint was dangerous.  They used it anyway.  They heard him cry for his mom.  They killed him anyway.  They didn't listen to his caregiver.  They didn't wait for his mom, who was on her way.  The left him to stop breathing face down on the disgusting movie theater floor.  

This is a homicide.  It has nothing to do with Down syndrome or obesity or whether or not Ethan broke the law at all (which is highly debatable).  It has everything to do with three human beings who have sworn to SERVE AND PROTECT killing an unarmed individual. 

I want to know why.  I want to know what they were thinking.  Why they thought Ethan posed such a threat as to deserve that face down restraint usually reserved for violent criminals.  I want to know why there isn't more outrage.  I want to know why our national groups haven't publicly denounced the officers actions.  I want to know why they haven't plastered every newspaper with a headline that says "Down syndrome is not a cause of death".

Our national groups should not be focused on training.  They should be focused on telling the world that it is UNACCEPTABLE for police officers to kill an unarmed person.  PERIOD!  The authorities want this to go away and blaming it on Down syndrome is one way to do it.  "Oh, if only they had been "trained" to recognize Down syndrome this never would have happened!"  they cry.  BULLSHIT, I say.  

What they aren't saying is that Ethan was an easy target.  What they aren't saying is that they really don't think Ethan deserved the same rights as you and I because he was different and he dared be out in public.  What they aren't saying is that when it comes to understanding and accepting people with disabilities as equals, we are as far away from that today as blacks were in the 50's and 60's.

This is a civil rights issue and until it is recognized and treated as such, we will get nowhere.

Cue the Carpenters in 3, 2, 1...We've Only Just Begun

I recently "liked" and then, within about ten days, "un-liked" a group on Facebook.  

I liked them because they seemed a bit edgier than the typical Down syndrome page.  

I un-liked them because I was turned off by what I saw as disrespect towards those who had been fighting for years for our children with Down syndrome; a fight that many on the page had only entered into recently.  

I took it personally.  

I now realize that this is silly.  They are mad about how the world sees and treats people with Down syndrome and so am I.  The fight over whether blue nails or wacky socks is a better way to support World Down Syndrome Day is a silly one.  It's time to band together, even if we don't always agree.  It's time for full inclusion for our children, with no exceptions. It's not about making friends with everyone who has a kid with Down syndrome.

And so, the fight continues.

In my last post, I talked about Robert Ethan Saylor; a young man with Down syndrome who died at the hands of the police that he idolized.  

http://concavebed.blogspot.com/2013/03/robert-ethan-saylor.html

Here is some more reaction to the verdict by the grand jury...  

http://walkersvillemom.weebly.com/2/post/2013/03/now-that-the-verdict-is-in-and-no-criminal-charges-will-be-filed-what-have-we-learned.html?fb_action_ids=10152742284040657&fb_action_types=og.likes&fb_source=timeline_og&action_object_map=%7B%2210152742284040657%22%3A168157930006914%7D&action_type_map=%7B%2210152742284040657%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D

I wonder where we go from here.  Where can we go when even national Down syndrome groups are putting part of the blame for Ethan's death squarely on the shoulders of Down syndrome?

https://www.ndss.org/About-NDSS/Newsroom/News-Archive/Robert-
Ethan-Saylor/

Self loathing, much?  How do we move forward in this climate?  How do we affect meaningful change when even those who should be on our side are making it harder?   And don't even get me started on some of the hateful comments from the general public.  I can't even begin to fathom the froth that some will whip up at the sight of differences, much less try and process it.  I just have to ignore it, for now.

I think I found part of the answer to moving forward in the movies and television shows that I have been drawn to, recently.  It's funny how the subconscious works. 

First, I re-watched Les Miserables, which is basically about fighting even when you will probably die a horrible death and never see the fruits of your labor; but at least you'll die fighting. 

Second, I watched part of the series "The Abolitionists" on PBS.  This one really got me thinking.  The parallels between the American slave and the American individual with Down syndrome became so clear; at least to me.  And then I thought, "god, I hope it doesn't take 300 years".  

So, drawing more parallels to slavery and the acceptance of blacks as first human, then free, then landowners and voters, then on to full fledged members of society no different than whites.  Um, yeah.  Do you see the problem here?  

The huge, glaring problem is that they are still fighting; along with women and gays and every other marginalized group out there.  Are we at the back of this line or are we a part of it?  I think we are a part of it, just not enough people realize it yet.  And the thing that scares me the most is that some people haven't even gotten to the "human" part as far as those with disabilities are concerned. Forget school and inclusion.  Forget cute campaigns and slogans and nail colors and socks.  There are some people who don't even see our kids as HUMAN BEINGS.  It's like slave culture 150 + years ago!

What do you do with that?!?

I guess the first step is to ignore the haters (because they will always be there, even 300 years later) and focus on those who are not so closed minded.   We need to become as vocal and well organized as the groups marching in pride parades and maybe (hopefully) join forces with some of them, because in the end, all any of us want is equality and inclusion and acceptance.  We have to fight for the first two and the last will come. 

This guy knows what I am talking about... 

http://www.nytimes.com/2013/03/24/sports/football/scott-fujita-acceptance-by-example-in-locker-room-and-at-home.html?_r=4&

Lastly, I see a huge need to embrace Down syndrome as a part of the human condition.  Just like being born homosexual or female or black; Down syndrome is a part of life.  It's what we do with what we are born with that matters and the first part of moving forward has to be accepting ourselves and our children for what they are.  

For example, I've learned that my child really, really sucks at math.  He does.  Part of this has to do with the fact that I also really, really suck at math, but another part is that he has Down syndrome and that makes learning math even harder.  

I don't want to deny that my child has challenges.  I don't want him to feel that Down syndrome is something he should feel ashamed of, or that he needs to "pass" as typical to be accepted.  I'm ok with him learning at his own pace in a class that is compromised of other children who also learn at that pace.  It's not that I don't want him included with the "typical" (yeah, I am really starting to hate that term) children all the time, it's that I have learned that right now, for him, this is the placement that makes him feel the most successful.  I see it as the same as my oldest son being in a lower level Algebra class and A.P. History.  He learns best in an environment that is suited to his learning level and style.  

And seriously, screw math!  Who cares?  My kid is good at reading, telling jokes and is a warehouse of useless facts and movie quotes that he will gladly recite to anyone who will listen.  As long as he can count change at the grocery store, I don't see a lack of math skills as an impediment to his future.  I haven't used the algebra that it took me two semesters to learn (and forget immediately) ever.  

We need to embrace Down syndrome.  It is a part of us.  Regardless of what happens in the future, we need to fight for our kids today. No more back of the bus.  No more blaming the victim.  It's time to be loud and proud.

Robert Ethan Saylor

Robert Ethan Saylor

If you haven't heard of him, you need to read his story.  If you have, then I hope you are as outraged over his death as I am.  

http://www.nytimes.com/2013/03/19/opinion/ethan-saylors-death-and-a-cry-for-down-syndrome-understanding.html?smid=fb-share

It is incomprehensible that a young man who, from stories of people who knew him well, loved the police could die at their hands.  It is the cruelest irony.  

My Charles has Down syndrome.  My Charles is a stocky, strong thirteen year old.  My Charles could be in Ethan's situation, one day.  I am terrified at that thought.  

We are told to teach our children independence.  They want and deserve as much freedom as possible.  But, how do you prepare your child for something like this?  How do I tell my boy that the good guys, the ones you need to go to if you need help, aren't always good?  Which of course, is the way of the world.  You can't tell by looking who are the good guys and who are the bad guys.  It would certainly make things easier if you could.  

But, surely, SURELY our children can trust those whose job it is to protect and serve.  Right? RIGHT?!?!

I am sick and sad and angry, so angry.  When I put myself in Ethan's mom's shoes for even a second, the grief is overwhelming.  Then, I realize that I am in her shoes.  We all are.  Ethan is our friend, our neighbor, our brother, our child.  He is US.  

If nothing else, I hope this is a spark.

I want this to be the Montgomery Bus Boycott.  

No more back of the bus for Ethan, or Charles or any other individual with intellectual disabilities.  It's about damn time that everyone wakes up to the fact, THE FACT, not the idea, but THE FACT that no one is better than anyone else.  No race, no religion, no income bracket, no IQ makes you worth more than my son.  He is you.