Saturday, 27 April 2013

Ethan Saylor: Death in a Movie Theatre

Robert Ethan Saylor, 26. Family photo that first appeared in the Washington Post on Feb. 19, 2013
The Justice Department has advised both the family of Ethan Saylor and disability advocacy groups that the 26-year-old man's death may warrant an investigation under the Americans with Disabilities Act or the Civil Rights Act. Ethan Saylor, who had Down Syndrome, died after being restrained by three police deputies moonlighting as mall security officers when he re-entered a Frederick, Maryland movie theatre after the screening of "Zero Dark Thirty" for which he'd paid to see had ended, refusing to leave. Read more

The medical examiner found that while Ethan Saylor's "developmental disability, obesity, atherosclerotic cardiovascular disease and a heart abnormality" contributed to his death, he ultimately died from asphyxia, caused in part from being restrained on his stomach in a position where he could not breathe.  The M.E. ruled his death a homicide, but none of the deputies involved were charged. The grand jury felt that they'd acted in accordance with their training and not responded improperly, given the situation.

Disability advocates disagree, however, arguing that Ethan Saylor was restrained unnecessarily and improperly. Concerned by the precedent that the ruling sets, and by what the entire incident says about the quality of disability training that Maryland police receive, they are calling for an inquiry of exactly went on in the movie theatre.

Ethan Saylor's Death, the Media, and Conflicting Details

I find it fascinating that apparently we really still don't know what went on in the theatre, as, according to one source, seventeen witnesses to Ethan Saylor's restraint, including the attendant that was with Saylor at the time, were interviewed afterward. Sources disagree on a number of basic issues.  According to, the grand jury's statement described Saylor as "verbally and physically resistant", while this news accounts say that he merely "cursed at the deputies and used profanity.".  The distinction is important, as is the definition of "physically resistant", which could range from not responding to a hand on Saylor's shoulder to behaviour that put himself or others in physical danger, which might call for use of a safe, properly-administered physical restraint, such as one sanctioned by the Crisis Prevention Institute's Non-Violent Crisis Intervention.

The fact that there's so disparate reporting over basic elements of a story that unfolded in a public place really disturbs me. This article does suggest that while Ethan Saylor  hit and punched the deputies, it also says that he idolized the police and loved talking to them, to the point where the family would get complaints that he was bothering them with his requests that they come to his house to visit. It's also in this article (but no others that I found) that we learn that the deputies weren't in any kind of uniform during this encounter - they looked like men off the street, engaging him in a physical confrontation that went, according to the autopsy report, from one deputy touching him to all three trying to forcibly remove him, to a point where all eventually "all fell into a heap", to Ethan being handcuffed. If Ethan did fight back, can he really be blamed?

Executive director of the Down Syndrome Congress David Tolleson, however, speaking with 930 WFMD, was clear on this: "...there was no emergency. There was no public safety safety issue for Ethan to be restrained on his stomach." . Family lawyer Joe Epso agrees that the deputies acted improperly, saying that the deputies should have said that they'd prefer not to handle the situation when asked to by the movie theatre manager rather than use three sets of handcuffs to restrain Ethan Saylor's hands over his stomach.

Ethan Saylor: The Training Issue

Sheriff Chuck Jenkins says his deputies are trained in how to handle persons with disabilities, but is that training wide enough in scope and sufficiently thorough? As a comparison, the mandatory disability training for New York police doesn't include a component on intellectual disability. In fact, it doesn't distinguish between intellectual disability and mental illness. Read More  Maryland police Cpl. Jennifer Bailey's assurances that "all sworn and civilian staff members got training in dealing with people with mental health issues from the Frederick County Health Department in 2011" also suggests that training on mental health disability is also intended to serve as training on intellectual and/or developmental disability as well.

Even intellectual and developmental disability shouldn't be regarded as interchangeable terms, let alone ones that are interchangeable with mental health disability.

And anyone who'd been properly trained in doing any sort of work with individuals with Down Syndrome in a context where restraint is considered a potential response to behaviour  should understand (aside from the general principle that restraint should be last resort) that there are physical issues associated with Down Syndrome that may make restraint problematic or even dangerous: heart problems are common among the population in general, their limbs are often proportionally shorter than those in people without Down syndrome, and obesity is often an issue. Training should also include insight into how early-onset dementia(sometimes very early-onset, compared to non-disabled peers) may be a factor in behaviour  and that the intellectual disability associated with Down Syndrome may make it difficult for the individual to understand everything that's happening and what's being asked of them. Like all of us, an individual with Down Syndrome's reasoning abilities may take a further hit in frightening or stressful circumstances.  Behavioural interventions require patience, empathy, and clear communication - not necessarily restraints.

When restraints do become necessary, the Crisis Prevention Institute Non-Violent Crisis Intervention Protocols (which focus mainly on de-escalating a crisis verbally so that a hold or restraint doesn't become necessary, but that may not have been an option in this case by the time the deputies became involved - it's not clear from accounts what  Ethan Saylor's agitation level was when they stepped in) ensure the safety of the individual being restrained and the people doing the restraint. They're less dramatic and traumatizing than a full throw-down involving three grown men. And you can still immobilize and transport a large person even in a restrained position, and know the minute that they're in distress so that you can release the hold immediately and re-evaluate the course of action.  There would be many more options than pile-ons and cuffs, and perhaps Ethan Saylor would still be alive today.

Even if they'd put Ethan Saylor in a the CPI-sanctioned two-person hold, transported him out of the theatre and into a room away from the public, and had to have him stay in the hold until his mother arrived and could assist to de-escalate the situation (again, the press seems mystifyingly divided on whether or not she'd been called), that's better than improperly restraining a man and killing him.

The Bottom Line

Don't misunderstand me: If Ethan Saylor wanted to see the movie again, he should have paid for another ticket like everyone else. And sometimes safe restraint is a necessary step to ensure everyone's safety, when all other options all exhausted. But yelling, or even striking in anger, at an off-duty police shouldn't be a death sentence. If Ethan Saylor died because there's a gap in the Maryland police's disability training (or the training for other crisis response organizations), then that gap needs to be addressed. Perhaps they don't know just how much they don't know, and so have no idea what questions to ask...or who to ask.

How do we start this dialogue? How do we make sure that this doesn't happen again?

More on the Crisis Prevention Institute:

Saturday, 20 April 2013

Thoughts on the Boston Marathon Bombings and Disaster Planning forDisabled People

A family in Watertown on lockdown ran out of milk. Courtesy Police Wives Unite on Facebook.
I've been trying to think all week what I want to say about the Boston Marathon bombings.

Being Canadian and having an....intense...interest in US events is often difficult. I get very emotionally involved with what's happening in America - and yet, there's very little that I can do. I tried to give money to Obama's campaign, but the fundraising people didn't appear to want money from Canadians (which didn't stop them from asking for it over and over once I ended up on the mailing list - I remember yelling at the computer at one point, "I'll gladly give you the $5, just let me f*cking do it!"). I couldn't vote, of course.

And while there's usually an agency that will take my money in a time of crisis such as last week's Boston Marathon bombings,  the emotions that the crisis itself brings up leave me feel like I'm stuck between two worlds. There have been natural events in Canada, storms and earthquakes, that have prompted to call friends frantically trying to find out if they're okay. But I can't recall ever turning on the news, hearing about a bombing on Canadian soil, and thinking, "Good Lord, so-and-so is there," while reaching for the phone.

I'm not in the US, and I haven't experienced with the US has, and I shouldn't feel it as keenly as I do. But on Friday afternoon I eventually turned off the news and thought, "I can't take this anymore. It's too much.", and didn't turn on the news again until I saw on Twitter that the second suspect in the Boston Marathon bombings had been caught.

The Boston Marathon Bombings...For What It's Worth...

Canadians hurt for you, my American friends. Our feelings about what's happened to you...well, for me, since 9/11, when I heard about the second tower falling on the radio just a few seconds after walking into the kitchen to get my breakfast, run deep. Not as deep as yours, not by a long shot...but you should never think that we don't care, or that we haven't stood with you to share the pain of the senseless events of mass destruction that have gouged your country's psyche over the last few years.

And we celebrate with you when these people that cause this destruction are caught.

As for what I want to say about the Boston Marathon bombings I watched the news about the lockdown in Watertown, the thought occurred to me, "What about the people who get services and care through people coming into their homes?" I'm not talking about people like my father, who currently has a nurse come in to help him every day, but without whom he's already proven (during freezing rain last week) he can easily survive for a day without support. I'm thinking of people that, because of severe medical condition and/or disability, and the inability to perform essential activities of daily living because of consequent limitations, who may have someone living with them or may not (that really doesn't matter...I lived with my father for several days after I first came home, but if he'd fallen all that I would have been able to was call 9-1-1 and do basic first aid until they got there) who rely on having daily attendant care services.

It scared the shit out of me. I can't imagine that care agencies in Canada don't plan for service disruption contingencies like a full-city lockdown. Do they in the US?

Will they now?

Is This What the World Will Be Now?

It seems sad that maybe they'll have to, that the Watertown lockdown to catch the second Boston Marathon bombings suspect in the  may become a, "It is what it is and now we have to do what we have to," watershed moment. In the terrible times when everything is upside-down, in the bombings and the Katrinas and the Sandys and the now the plant explosions full-city lockdowns, how *are* we going to ensure that the people who, through no fault of their own, cannot take care of themselves, are still taken care of?

It's becoming more important than ever make this question one of the ones that demands an answer as America finds a way to navigate this terrain into which it's, tragically, being pushed. And I know that you get that. I know that you're already thinking about disaster planning and responsiveness for people with disabilities, because I've spoken with very caring, competent people who are working on the problem and raising awareness about it.

You've got to find a way to keep these people and the agencies for whom they work funded. Because *every* American citizen deserves to have their needs met in an emergency, and one day you might be one of those people who needs the extra support.

You've got the experience and the expertise to show the rest of the world, "This is how you meet peoples' needs when there's an disaster. And look at the picture at the top of the post - you've got the heart.

Show us how it's done.

And know that....this Canadian is impressed as all hell with how you've held up over the past week. And I'll not give these people who caused this havoc any more publicity - you'll not hear me talk about them again, and you'll certainly never hear me say their names.

Monday, 15 April 2013

What Does Justin Trudeau Have to Say About Disabled Canadians?

Photo courtesy
"I know that you're optimistic about us, but cautiously so. You are, after all, Canadians," said Justin Trudeau yesterday after he was elected leader of the Liberal Party of Canada. Justin Trudeau, the son of former Canadian Prime Minister Pierre Elliot Trudeau, took 80% of the votes at the Liberal Party Convention. The tally included votes from a newly-created class of Liberal supporters that could register and submit a weighted vote online; 180 000 people from across Canada participated.  The Liberal Leadership race has 6 candidates, and for Justin Trudeau to have taken 80% of the votes is no small victory.

I'm thrilled. I think he's great. Not just because I'm a great admirer of Pierre Trudeau, (if you're not familiar with Pierre Trudeau and what he did for Canada, here's some reading to get you started: and not just because I and about half the woman under 3o in Canada fell in love with Justin Trudeau after hearing the powerful eulogy that he gave at his father's funeral (I was 22 at the time, in rehabilitation in Ottawa, and didn't even know that Pierre Trudeau *had* children...)

I just really like his worldview and how it informs his politics. So much so that I was one of the 180,000 who registered as a Liberal supporter and then voted online to make Justin Trudeau leader of the  Liberal Party of Canada.

And any candidate that could convince me to affiliate myself with the Liberal Party of Canada in any way, shape or form would have to be pretty damn compelling, let me tell you.  I've felt like a Canadian without any appealing political options on the federal stage for about a decade now, voting for whomever seemed the least of all evils rather than a candidate in whom I had any real faith. Plenty of people say that Justin Trudeau got to the Liberal leadership on the strength of his father's name, and they're entitled to their opinion, but when you consider the landscape of federal Canadian politics of late and Trudeau's strengths, he's not needed the push from his father's name (in fact, in some areas of Canada it will likely only hold him back; far from everybody has fond memories of the senior Trudeau).

However, I *Am* Canadian

But I'm cautious, yeah. For the same reasons that I've become cautious of any politician since I had my stroke, no matter how much I happen to like them or their politics or how moving I find their speeches.

And Justin Trudeau certainly does speak well. In fact, his acceptance speech brought memories of Obama's past speeches:

  • Both men are exceptionally good orators

  • Both talked about the middle class and the importance of strengthening it

  • Both talked about minority groups and how they live on the fringes of society.

  • Both talked about the people of their respective countries being the driving force behind change.

  • Both talked about the importance of unity, within their respective political parties, and within society at large.

But nothing from either man about disabled people.

Granted, services and supports for disabled people explicitly, such as income support programs and funding programs like Ontario's Special Services at Home program for families with disabled children are administered provincially, and Departments of Education operate on the provincial level. Justin Trudeau is the Liberal leader at the federal level.  However, disabled people are also affected by programs that run at the federal level:

  • Canada Human Rights Commission and Canada Human Rights Tribunal

  • Canada Pension - In Ontario, income support for disabled people stops at 65 and Canada Pension takes over

  • Health Canada (through transfer payments to provinces...but this is a big one, affecting primary physician care, ER and hospital care, care in the home, and care in long-term care facilities)

  • Veterans Affairs

There are others that obviously affect disabled Canadians just by virtue of the fact that they're Canadian, but these four departments in particular require special awareness of the fundamental challenges that often come along with being disabled or with caring for a disabled person:

  • Poverty due to inability to work and extra expenses associated with equipment, special diet, adaptations to dwelling, specialized vehicles, and/or attendant care

  • Discrimination in the employment sector, medical community, and community at large

  • Health issues requiring specialized care either within the home or with frequent hospitalization 

  • Lack of funding and resources to allow caregivers to adequately care for themselves as well as the people they love

  • Increasing lack of options for people that require a high level of care as caregivers age and can no longer physically provide care.

As the population in general ages, these issues become more and more real across Canada and the world, and increasingly pressing. All levels of government need to be involved in generating viable solutions.

Justin Trudeau, I Want to Help

You brought me back to the Liberal party. I didn't think that could happen.

I'm cautious. Yes, I am. But if you start talking about these things - for me, for the people I support, for Paul Kaune out in Vancouver fighting for the right to manage his own care and for the freedom of all people with disabilities in Canada to do the same I will throw my full weight behind you.

I desperately want to believe that you're going to start to turn this around for us. Please don't let me down.

Justin Trudeau's acceptance speech:

Tuesday, 9 April 2013

My AVM Story - Role Reversal Makes Me The Caregiver for a While

It's amazing where I've found myself in this recovery journey from my AVM and stroke. After all, it wasn't until I was volunteering daily with Community Living at age 22, trying to keep myself busy while I waited to hear about whether or not I'd need brain surgery to treat my AVM, that it occurred to me for the first time that I'd maybe enjoy doing support work with intellectually disabled people as a career (after volunteering with Community Living for seven years *and* doing a cooperative education placement with them in high school.) I never figured that I'd find myself here, thirteen years after my stroke, writing about disability issues and feeling very passionate about them in general. And I never figured that, with a weak leg and a left hand that still barely works, that after all the time my father spent being the caregiver for me after my stroke, that I'd end up (gladly) being a caregiver for him.

A Sudden Role Reversal

My father was crossing the street in Toronto about five weeks ago and was hit by a car.

He was fortunate, all things considered. My sister was already on her way to Toronto meet him and was able to get there quickly when a pedestrian used his cellular phone to call her. He was rushed to the nearest hospital and had surgery fairly quickly to set his right femur, broken in three places. He doesn't remember any of the first week that he spent in the hospital...I don't remember much of the first few days after my surgery either, which is fine by me.

He's full of stories about the physical rehabilitation hospital to which he was released, however. And now that he's home, and I'm staying with him until we can get some support in to make life a bit easier for him as he recovers, we compare notes about our experiences. We did not stay at the same hospitals. I'm surprised by what he wasn't taught. But I'm also impressed that he's getting around as well as he is, considering everything that he's been through.

And it sure is interesting, being on the other side of this. My sister lives too far away to be in the caregiver role (and she's taken on all the paperwork involved with this, so she's got enough on her plate).  Since I live so close to my father, it makes sense that I would help out.

I know that I can do it. But sometimes doubt creeps in.

Pancakes, Headaches and Doubts about Myself as a Caregiver

It's not lost on me, how funny it all is, as Dad stands beside me at the electric griddle, using his walker, trying to coach me on how to flip pancakes. Why did we think that pancakes for dinner was a good idea? I've never made pancakes in my life.

Since Dad needs a hand on the walker at all times, we have a full set of usable limbs between us, and it's just too much coordination for us. And me being the neophyte cook that I am, the pancakes are lumpy, even after we run the mixer through the batter a second time. I feel like the world's worst caregiver. How do people do this caregiver thing day in, day out? I can't even make pancakes right.

Everything that I do to get myself through the day seems wildly inappropriate when I'm a caregiver for someone else. What kind of caregiver opens a bag of chips with her teeth? One that doesn't have two hands to work's okay for me but *wrong* when I'm doing it for someone else...

And did I do dangerous things that made my caregivers want to scream, "Oh NO, you didn't just do that!", I wonder?

(Yes, I certainly did...*sigh*)

My father says that he has gotten a new appreciation for what I went through...well, I can say the same thing.

I'm glad that I can help, because he was certainly there when I needed him.

It's just too bad that my cooking hasn't improved just a little bit yet...and that his crock pot seems to have disappeared.

Here's to caregivers. You're all awesome. :)

Wednesday, 3 April 2013

Why Do Mike Rice and his Basketball Team Matter More than DisabledPeople?

In this March 12, 2013, file photo, Rutgers coach Mike Rice yells out to his team during an NCAA college basketball game against DePaul at the Big East tournament in New York. (ASSOCIATED PRESS)

I have CNN "Early Start" on this morning, as I often do in the mornings, and they've just finished a story about basketball coach Mike Rice and a video of him physically and verbally abusing members of the Rutgers University team.

The video, which shows Mike Rice shoving and kicking players and hurling basketballs at them, as well as yelling obscenities and homophobic slurs, was shown to Rutgers officials in December 2012. Rutgers suspended Mike Rice for three games and fined him $50 000. However, now that the video has been broadcast on ESPN and gone viral, an outcry has gone up over why Mike Rice wasn't fired. Lebron James and New Jersey governor Chris Christie have weighed in, and the head of the New Jersey Assembly has even called for Mike Rice to fired.

Don't Get Me Wrong...Mike Rice Should Be Fired!

It's by no means a bad thing for a society to be protective of its young athletes. It's certainly appropriate, when anyone abuses a position of power for them to be held accountable, as Jerry Sandusky was and as it looks like Mike Rice will further be. The video is difficult to watch and it's understandable that people are outraged that Mike Rice wasn't fired on the spot when it surfaced.

Even as I'm typing, there's an interview going on with an expert that's saying that Mike Rice did is unequivocally abuse and that he needs to be fired because there's no context in which his actions are appropriate. My question, however, is why these stories get *so* much coverage and generate so much outrage when when only the most minimal of coverage gets given to the daily situation of:

  • What the UN has officially declared torture going on at the Judge Rotenberg Center, where electric shock is used to "discipline" disabled children

  • Restraint and seclusion going on (with no policy to govern their use in the US) in public special education classes.

  • A pattern of abuse that was identified in New York state group homes for intellectually disabled people approximately eighteen months ago by the New York Times.

It's great that New Jersey Governor Chris Christie and the head of the Assembly felt moved to make a statement about the Mike Rice situation...I wonder why Christie  didn't feel like he or any of his people needed to attend February's Joint Legislative Hearing on the closing of two institutions in New Jersey? Are the people affected by that not important too?

I'm not suggesting that concern for abused athletes is misplaced in inappropriate. It just seems sad to me (and frustrating) that even when it comes to abuse, it just seems like some stories are more "worthy" of coverage and immediate action than others, and that, as usual, disabled people and their concerns seem to be consistently getting pushed into the background by the media and government.