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.


  1. Thank you! I believed this already but you brought I so many other reasons why it makes perfect sense.

  2. Excellent, compassionate site for anyone with DS affected people in their lives (family, friend or acquaintance), who feel a need to stand up for equality, and the rights of these people to be treated with the same respect and dignity as everyone else.

  3. Excellent, compassionate site for anyone with DS affected people in their lives (family, friend or acquaintance), who feel a need to stand up for equality, and the rights of these people to be treated with the same respect and dignity as everyone else.

  4. Absolutely. It's a backward step and it calls us out too much and isn't needed. Training on being a good cop/officer is more important that Ds specific training. And even beyond that, justice for the Saylor family.

  5. There have been so many posts and commentaries on the case, but this one crystallized and identified so many important ones for me. I think this issue has been missing you!

    The principle of true integration is one that is unevenly practiced in society (even by those within the DS community), but it's one I believe in. Special consideration and training can only cause deviation from common sense.

    The moonlighting issue was one that stuck in my craw the most, and I felt like no-one was asking the questions I was, so I reached out to a couple of contacts I had in the police, as well as private security. Here's what I found (as applicable in Ontario, and B.C. respectively, and Maryland could differ, though I doubt by much).

    1.) Peace Officers are never really 'off-duty'; while this makes sense (I'd want help in the event of a robbery or murder or something, whether the cop was on or off-duty), it still seems like an ethical lapse to use these powers when not in uniform for such a trivial matter as a movie ticket.
    2.) Removing a trespasser from private property authorizes "as much force as is reasonably necessary" to *anyone*, even if it's just me tossing a drunken houseguest from my front porch. This is where things get sticky of course, because that is ostensibly how they were acting, in their capacity as mall security. Otherwise, a police officer cannot even lay a hand on anyone without putting them under arrest.
    3.) Positional asphyxia is well known and understood by anyone with even a modicum of training in professional physical restraint (as you mention). Apparently the use of 3 sets of handcuffs linked together would have been to reduce the pain of having shoulders pinned back and might have been a sign of compassion for Ethan. Still the fact that they didn't notice his distress themselves and had to have it pointed out by bystanders speaks damning volumes.

    This might not have been the place to post that info, but I've been sitting on it for a while, and haven't had the mental steam to engage in these discussions. Even now, I'm kind of tapped out. Thanks again for writing this up.

  6. Axel, we are in California, and my husband is a lawyer, he looked up the Maryland law... It is my understanding that officers actually get LESS legal protection when they are off duty than when they are on. (They are still under some protection as officers than a regular citizen, but they do not have impunity to act like an officer who is on duty.) To my mind, that makes their actions even more egregious.

    Even IF those officers had the protection of being on duty that day, which they didn't, I cannot see how it was reasonable to lay hands on him at all. Ethan's caregiver was asking the police to wait, as Ethan's mother was on her way to the theater so she could help diffuse the situation.

    Jen, thank you for writing this.

  7. As you know from your industry, when human beings are accountable for the lives of others, sometimes the best results do not prevail. Mistakes are made and the consequences are dire. Now first, I do not for one moment consider what happened to Robert Saylor a “mistake.” I consider it, at best, an over-reaction based out of ego combined with ignorance and at worse an act of prejudice, in effect, a hate crime.

    And from here, I respectfully disagree with your main point. The idea of additional training of first responders to better handle people with varied disabilities may be the buffer to prevent a mistake made from ignorance, to enable men and women without malice to best help those they serve.

    Your point about caricatures in training is valid, parents and advocates will have to stay involved all along the line to be sure that people with disabilities are given respect in the most human and humane ways.

    However, my main point is the same as yours: “a population that is as diverse as the greater population.” Exactly. And those diversities are the reason that this is so important. The young children with Down syndrome I read about every day are all bright, beautiful children with a new and amazing world unfolding before them. I’m serious. This is because of who they are, how hard their parents are fighting and working to help them reach their potential, and how the world is changing to be better equipped and accepting. Maybe, with so much inclusion, as they grow to adulthood – this will be enough. Like you, I hope for a future world where peers cheer on their counterparts no matter what individual challenges each one may face.

    Right now, there are many adults with a variety of disabilities that are working and joining the community like never before. This is new, really, to the adults around them. There is a wide variety in cognition and even more, communication abilities, among the adults and children who are living with a disability.

    In your fight, don’t forget your point, this is a diverse population. My son, for example, does not communicate well with strangers. He may take a second longer to offer a response, a second longer than another person is willing or used to waiting. He is charming, imaginative and hilarious. It may take a moment to discover this and, in an emergency situation, he is going to need some extra help, patience, and guidance. Many of his peers are completely nonverbal, perhaps easily confused, and are no less worthy of competent guidance.

    The development of training is a broad idea and can have positive consequences; it’s far too early for a blanket pro or con. I am hopeful ambitious parents like yourself embrace the charge of helping to create a world where those who cannot communicate or those who may struggle to understand a quick turn of events are guided safely.

    I am doubtful training would have saved Ethan’s life. But there are so many other well intentioned responders who will be able to gain ability and efficiency if they are trained in helping people with developmental disabilities, not just Down syndrome but also autism and varied unknown variables.

    Ok, I’ll stop my rant of a reply. As always, thank you for sharing your world.

    (if this is a duplicate reply - I apologize)

  8. First-time reader and commenter...will definitely be back to read more!

    As someone who also blogged on this (and who also called for more disability training for crisis intervention professionals generally, including awareness of specific issues involved with Down Syndrome that make restraint something that should be considered a last-resort intervention), I very much appreciate the points that you've made here. I wouldn't want to advocate any sort of training that promotes the idea that "People with this disability are all the same and this means that you need to treat them differently than everyone else."

    But, if I had a disabled loved one, I would hope that crisis response teams would be able to recognize, as part of their training, that some specific disabilities have characteristics that may affect how my loved one may interact with them and how the police should act in response to ensure that everyone's rights are respected and that everyone remains safe. I'm thinking things like: 1) Autism may come with communication difficulties, and the person may answer questions in a very literal manner. 2) A person with hearing impairments may be trying to read your lips, so keep your hands away from your mouth 3) Intellectual disability is part of Down Syndrome and this needs to be taken into account when communicating with a a person with Down Syndrome (right now New York state police mandatory disability training doesn't even distinguish between mental illness and intellectual disability, and officers receive no training on intellectual disability; from the articles about Ethan Saylor's death that I read, the situation doesn't appear to be much different in Maryland.)

    The best way for policing agencies to address issues with disabled people is, as you said, to take it on a case-by-case basis, as they do all issues, using de-escalation methodology that's been proven to work in a variety of spheres and with a variety of people, disabled and non-disabled. I'm a fan of CPI's Non-Violent Crisis Intervention, myself). Restraint techniques should be ones that have been proven safe for *everyone* involved, *when there's no other alternative*. Nothing like that happened at the movie theatre that night, from what I read.

    Sorry for the length of my comment...this news story has been on my mind since I heard about it.

  9. Agree love thanks keep more coming!!!! How's little one?!!!!


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