POWr Social Media Icons

Tuesday, 23 December 2014

When "Christmas" Doesn't Mean "Family"

In the grocery store yesterday, sharing Christmas greetings with an acquaintance, she said that she thought the most important part of the holiday season was spending time with family...didn't I agree?

I nodded, because it seemed expected of me, but the question irked me. I'm not sure why I've felt especially this year, knowing that I will be surrounded by my own family for Christmas, a keen awareness that there are plenty of people in society who won't. The assumption seems to be that everyone has a family to go home to for Christmas, or that people with family will be looking forward to that Christmas visit home, when that's not always the case.

When Your Family Has Forgotten You - Or Doesn't Even Know You


When intellectually disabled people in Ontario started to be moved out of institutions in the 1970s and 1980s, many of them didn't have any family that they knew about. Doctors had advised families to institutionalize these intellectually disabled men and women as young children and to forget about them. So, as adults that had been raised in institutions, these men and women found themselves without any family that they knew of (although some of them may have certainly had families, perhaps even family members that had never even been told about them) and in towns where support agencies had spots for them, with no connections at all otherwise.

I volunteered at agencies where staff used to invite the people they supported into their homes for holidays, to give them a place to go. It seemed natural to me, as staff were already providing most of the functions that a family would for these people anyway. But when I went away for school to train to work with intellectually disabled people, I was told that this was wrong, and that staff shouldn't be acting as friends. If people were going to go away for Christmas, my instructors said, they should be making friends in the community and visiting their homes - they should have non-staff friends.

I understand now what my instructors were trying to say, but at the time I was angry. "Show me the families that will do this," I said, Sometimes I still say this, when I hear people suggest that the government shouldn't be caring for disabled people, but that volunteers and churches should be doing it - "Show me the families".

"Show me the families that will do this," I said to my professors, "and tell me what's wrong with an agency person opening their home, on their own, unpaid time, to a person that they support, for the holidays,"

This was one of the first of many things on which both faculty and I refused to budge, but the trend has gone in favour of faculty's position that day - and I do understand why. A natural support is always better than a paid one.

But it does leave people alone on Christmas Day.

(If you're at all familiar with the abuse that people suffered in Ontario institutions like Huronia Regional Centre, I think that you'd suspect as I do that Christmas alone is infinitely preferable to never leaving an institution at all. But that's an assumption on my part. I've never asked anyone about this.)

And it's not really the point, anyway.

Christmas Isn't Just for People with Family


My family used to have Ivy over at Christmas (we don't now, for a variety of reasons), but Ivy is my very special friend and we didn't think anything of it. I believe that we were an exception. There's still a perception out there among people that don't have experience with intellectually disabled people that friendships with them are too difficult and too much responsibility, let alone invites home for holidays. This is slowly changing, as society in general starts to have more access to intellectually disabled students through integrated programs in school and in adulthood in workplaces and churches and community activities. After all, Ontario doesn't institutionalize intellectually disabled people anymore.

But in many ways they still walk on the edges of communities. They aren't fully integrated. Friendships with the "normals" don't come as easily.

Like any other demographic in society, some without families are fine with spending Christmas alone. But some aren't.And, of course, this isn't the only group in society with some members that may not have family with which they can spend Christmas, or who just can't, as much as they'd like to, spend Christmas with family. Essential services have to stay running, and people have to work in order to do that. Some people simply live too far away from family to get home every year. Some people have lost family members, or whole families, and are doing everything they can to hang on at Christmas.

If you're spending Christmas with family, I hope that you enjoy it, and I sincerely wish you and all your loved ones all the best in the coming new year. And if you're alone, whether it's by circumstance or choice, merry Christmas and all the best of the new year to you as well...the joy of this season isn't just for those who are surrounded by family, and I hope it finds you well.

Wednesday, 10 December 2014

No Charges in Ethan Saylor's Death, says Grand Jury



I normally don't like to reuse my posts, but I knew, when I heard that the Grand Jury decided that no one would be charged in the death of Ethan Saylor, that I had to write something...and I liked what I originally wrote just after the 26-year-old with Down Syndrome died after being restrained by off-duty police moonlighting as security guards in a Maryland movie theatre.

The lack of a Grand Jury's indictment hits especially hard after no Grand Jury indictment after the death of Eric Garner. Like Garner, Saylor was a large, unarmed man. The position in which the police restrained him made him unable to breath, contributing to his death (ruled a homicide by the medical examiner). Also similar to Garner's case, accounts differ on what actually happened to make the three officers handcuff Saylor and position him on his stomach, but the cases have one thing very much in common:

Neither man deserved to die for what he did.

I'm not going to comment on the role of race in Garner's death. I have my own thoughts, but others have expressed them much better than I could. I will say that the other commonality in these two cases, that a police throw down and restaint on the stomach was the go-to when the officers felt threatened, is extremely troubling because, obviously, it was very dangerous for these individuals and presumably could be for other heavy individuals. A chokehold was used on Garner that had been disapproved for use by the NYPD for over 2 decades. Police need to know that restraints are powerful and have potential consequences when not performed properly. I can't think of anywhere I've worked where, if staff performed a restraint and it contributed to someone's death there wouldn't be (pardon my language) fucking hell to pay. Police need to be held to the same standard.

And for those that think I'm just hating on cops...I've had to work with the police several times in my career, and I found that all of them treated the people I supported with patience, respect, and empathy. I've got a great deal of respect for the police and for what they do. But, as Jon Stewart said the other night, "You can truly grieve for each and every officer lost in the line of duty in this country and still be troubled by cases of police overreach. Those ideas are not mutually exclusive. You can have great regard for law enforcement and still want them to be held to high standards."

Ethan Saylor's "crime" was that he wouldn't leave a movie theatre - he wanted to view the movie that he'd just seen again. To make a point about an $11 movie ticket (for which the person with him could have conceivably left the theatre and stood in line to pay), the movie theatre manager called in the off-duty cops, and not long later Ethan Saylor was dead. That's not right, and it's not right that the Grand Jury doesn't think that someone needs to answer for it.

I wrote about Ethan Saylor, his death, and the events leading up to it in April, 2013:

Ethan Saylor: Death in a Movie Theatre


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 disabilityscoop.com, 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: http://educate.crisisprevention.com/

Monday, 8 December 2014

Goodbye, Stella Young

"That quote, 'the only disability in life is a bad attitude', the reason that's bullshit

is....No amount of smiling at a flight of stairs has ever made it turn into a ramp.

No amount of standing in the middle of a bookshelf and radiating a positive

attitude is going to turn all those books into braille."

Stella Young, 1982 - 2014

It seems like the disability advocacy community, despite being quite large and spread out all over the over the world, becomes very small when it loses one of its own. I saw it when activist and blogger Elizabeth McClung died after her long illness, and I'm seeing it last night and today as people process the news that Stella Young has died. I can see my sense of loss reflected back to me from Facebook and Twitter, and I'm sure that I'll see it from other bloggers today.

I never met Stella Young, but her writing both validated thoughts that I was having about disability and opened my eyes to things that I hadn't thought about, and I'll always be grateful to her for that.

About Stella Young


Born in Australia, Stella was doing advocacy work in her community from the age of 14. She became the editor of the Australian Broadcasting Corporation's "Ramp Up" site for news and opinions about disability. She also sat on a number of boards and committees to further disability advocacy causes, did writing about the Paraolympics,  why she called herself a "crip", and other disability issues, and hosted eight seasons of "No Limits", a disability culture television program.

Also a comedian, Stella Young was a two-time state finalist for the  Melbourne International Comedy Festival's Raw Comedy Competition.

Read more about Stella Young here

Stella Young and Me


The first of Stella Young's essays that I read was about genetic testing for disabilities.  She described an incident on a bus:
"A few years ago I was approached by a nervous looking woman on a tram on my way home from work. "Excuse me," she said. "Do you have Osteogenesis Imperfecta?" With a friendly tone, I confirmed that I do. Most of the time when people are specific with the name of a relatively rare condition like mine, it's because they know someone else with it. So I was surprised by her next line. "I was pregnant with a baby with OI and I had a termination." I nodded, but let that sentence hang in the air between us for a moment. My throat had tightened and I didn't quite trust myself to speak. It was she who broke the silence for us both. Looking me directly in the eye, she took a deep breath and said, "I made the right decision." Then she got off the tram."

You can read the whole thing here. She went on with the discussion about genetic testing without discussing her personal reaction to the incident, but it thoroughly shook me. I just couldn't imagine what would possess a person to speak that way to another person.

Maybe it shook her more than she indicated, too. But she usually wrote very honestly about her experience, and this really didn't seem to affect her all that much. And I remember thinking, "Wow - I want to be that comfortable with being disabled, that immovable in my belief in my inherent worth as a disabled person, that hearing something like that wouldn't get to me." Because I'm pretty comfortable with myself, but I don't know if I'm that comfortable.

I knew that I wanted to hear more from Stella Young.

Stella Young: I Am Not Your Inspiration, Thank You Very Much


Stella Young's TED talk about why she doesn't like inspiration porn is very thought-provoking and still widely-shared, despite being out on the internet for quite some time. I remember putting it up on the Facebook page.



This makes my advocate heart soar.

Rest in peace, Stella, We won't forget you.

Tuesday, 2 December 2014

Intellectually Disabled Adults and "Age-Appropriate" Interests

Well, I'm back :) I finished my 50 000 words for National Novel Writing Month with a day to spare, took a couple of days off, and am ready to get back to my regular writing routine. And to start it off...yesterday I got an interesting email from a colleague with some thoughts on the about the perception within the support community that it's important to encourage intellectually disabled adults to engage in "age-appropriate" activities. It got me thinking.

I've been lucky enough to see agencies wrestle with this idea, and come out on the side that if intellectually disabled adults find joy in an activity that isn't "age-appropriate", there's nothing wrong with it, but apparently it's still an issue for some people. I can see reasons why it's a concern - intellectually disabled adults tend to be infantilized by society (and even by agencies) as it is, and why would staff want to encourage behaviour that feeds that dynamic?

But, as a society, we're reasonably tolerant of non-disabled adults who choose to engage in "non-age-appropriate" activities. Comic Con conventions are full of adults who love to play dress-up (and their costumes are awesome, by the way). Plenty of adults collected Beanie Babies when they were the rage. I love to play with Lego, and doesn't everyone have a favourite Disney cartoon?

And, as my colleague suggested, when non-disabled adults draw we call them artists; when intellectually disabled adults colour, we label their interest in art "non-age-appropriate" and take the crayons away.

Intellectually Disabled Adults are...Adults


I have a friend who collects knives. I don't get the appeal. But I'm not interested in telling people what their interests should be (unless pursuing those interests is harming others), whether it's a very "grown up" interest like collecting the labels off of wine bottles or whether it's making window decals using a kit (which I used to do). I'd like to think that most adults feel the same way about other adults with whom they associate. But even though I think there's increasing awareness that (gasp!) intellectually disabled adults are adults too and should have the right to choose their own interests, regardless of how "age-appropriate" they are. there are still some problematic attitudes about the whole business.

It's a double standard. Especially so in light of the fact that while we insist that intellectually disabled people have "grown up" interests, we all too often don't acknowledge that they're grown-ups in other life spheres:

  • We don't provide comprehensive relationship training and sexual safety education

  • There's still not nearly enough education about self-advocacy skills and talk about why they're important

  • People still don't have much control when it comes to their services and who provides them.

These things aren't constants across all agencies, of course. Some agencies are doing a fine job with relationship training and sexual education, and are making great strides with self-advocacy. And Ontario's transformation of services over the last few years has been all about giving people more control over services.

However, it's important that we as support people get our collective heads on straight on whether we want be a culture that supports all the adult rights of intellectually disabled adults, whether we're going to continue on this path where we look at them as children (which is not only unfair to the people we support, but sends a message to society that it's okay to do so as well), or whether we're going to go between both points of view, picking and choosing when we view intellectually disabled people as "adults" according to when it's comfortable to do so.

The last option isn't acceptable, in my opinion. We have to go one way or the other.

And don't we all know which way is the right way to go?