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.


  1. We really do share a brain. Only my side doesn't quote cause-appropriate people and tends to pontificate in run-on sentences.
    Love this!

  2. It is time to stop being the other

    Yes. Exactly.

  3. This post is brilliant. Although my son does not have DS I mourn Robert Saylor's death just as well. I cannot understand how it could happen. It makes me so sad. To think that he called for his mother breaks my heart.

    It was just this week that I was shown once again what it means to have a "different child" in our society:

  4. @DownWitDat: A very moving post. Thank you for writing.

    @icansaymama: Would you please write a post on your blog about those feelings? This really is, at its core, the story of how a mother lost her son, and we could use some voices outside the DS Community, too.

    Little Birds Dad

    1. You are right, I should really do this. Will link up to my post here after I've written it, if that is okay.


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