Sunday, March 24, 2013

Make World Down Syndrome Day a Day of Action

Thursday (3/21) 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  They may not know exactly what is involved and may be very prejudicial as they base their opinions on outdated and incorrect information.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.
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