About Sarah

Due to a stroke, I've walked with a cane since I was 22 (I'm 36 now)...but I'm so much more than just the girl with the cane.

Author Archive | Sarah

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

ethan saylorI 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/

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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

stella youngIt 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.

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Intellectually Disabled Adults and “Age-Appropriate” Interests

intellectually disabled adultsWell, 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?

 

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Still Here – NaNoWriMo is Eating My Brain

nanowrimoWell, it’s been almost a month since I posted here, which is the longest I’ve let the blog go without a post since…last November. Not because there haven’t been things that need talking about, because God knows that there do, and I’ve been trying to put some of them up on Twitter and Facebook…but because it *is* November, and if you look at the archives, the blog traditionally gets a little neglected around November because it’s National Novel Writing Month (NaNoWriMo) and I’m off writing a 50 000 word novel of very questionable quality within 30 days.

I had hoped to get at least one blog post up this month, but it looks as if it might not happen, so I thought I’d just let everyone know that I’m still here…

“She’s Doing that NaNoWriMo Thing Again”

This is my seventh year (not consecutive; I started in university and did it sporadically, and unsuccessfully, for three years) of joining what is now 400 000 would-be novelists from around the world in trying to get a 50 000 word novel penned during the month of November…just because. NaNoWriMo doesn’t end with publishing contract or a prize, just the satisfaction of reaching that goal.

And I’ve reached that goal for the last three years. I have three approximately 50 000 word NaNoWriMo novels sitting on my hard drive and lots of other writing, including this blog, that I enjoy doing. So why another one? Because while this year I’ve been very good at keeping up with the amount off writing required in order to finish NaNoWriMo on time (approximately 2000 words a day for me, to create a bit of a cushion for days when there’s not enough time to write the required 1667 words per day), I haven’t been that disciplined in the past. Last year I pulled two “10 000 Word Weekends” in order to finish my NaNoWriMo novel on time.

And sometimes NaNoWriMo is a real slog. It’s generally really freeing, since writing so quickly forces me to turn off my inner editor, to just write and not go back and change anything, even if it means that I end up changing a character’s name halfway through the book because I can’t remember what I called her the last time she appeared, or something I write creates a plot hole that you could drive a truck through. Second draft problems. But some days those 2000 words don’t come easily.

Yet I keep doing this every year, I’m sure to the confusion of those around me.

Why NaNoWriMo?

For one thing, I don’t write much fiction anymore, which  is something that I really do enjoy. NaNoWriMo gives me permission to devote a whole month to it, which is decadent is my writer’s world. Even if the end product isn’t as good as I’d like it to be, it’s 50 000 words of content with which I can work, should I ever decide to, and that’s pretty cool.

But I think that it also has to do with the process of…not recovery, still struggling with that word….taking a second look at my life that I went through after I acquired my disabilities. Some of the things in my life that I really liked to do, as much as I struggled to keep them a part of my life, just weren’t as accessible anymore, or accessible at all. It was a long time before I started taking adult ballet classes, to see if I could handle any of it, and I was pretty much limited to the barre and to certain exercises at that. Any dreams of doing Highland dancing again were certainly out. Theatre? For a long time I had myself convinced that acting was no longer an option…which I’ve now reconsidered…but I’m cautious. Attitudes being what they are, I question whether I’d actually get cast in a part where the person wasn’t physically disabled, and there aren’t a lot of physically disabled characters in theatre’s classical repertoire. Certainly any musical theatre that requires dance is out.

I did rediscover after my stroke, however, that I like to write. I like blogging. I like writing fiction. I even like writing poetry, sometimes.

I was always asking the kids that I worked with, when we were talking about what they might want to do when they graduated from school, “What do you like to do?” And when they told me, I’d say, “Well, let’s find ways for you to do more of that, then.”

If there’s something that you like doing, and it’s not hurting anyone else (and it’s legal) you should do it.

So I will NaNoWriMo. Because I like it.

See you in December, hopefully with a fourth NaNoWriMo novel under my belt.

 

 

 

 

 

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Nancy Fitzmaurice, Assisted Suicide, and Assumptions

nancy fitzmauriceSo, a legal first happened in Britain over the summer, the news of which is just coming out now, and it should have all of us concerned. Nancy Fitzmaurice, a 12-year-old disabled girl, was killed in a London hospital in August, and it was all legal. Her parents fought in court for the right to terminate her life, and the judge granted it.

This is the first time a British court has “allowed a child breathing on her own, not on life support and not diagnosed with any terminal illness, to be killed by the medical system.” (ASAN Position Statement).

William Peace over at Bad Cripple has been blogging for a long time about the danger of something like this happening, as the struggle to make assisted suicide legal in Canada and the US has intensified. And I’ve come to agree with him. I do support the idea that people should be able to dictate the terms of their own death, but the legislation that would permit that needs very specific and stringent safeguards to protect disabled people from having other people dictate those terms.

Especially children. Not that we’ll ever know ever know how Nancy Fitzmaurice felt about her situation one way of the other.

I realize that opponents will argue that we couldn’t have known anyway. Nancy Fitzmaurice couldn’t speak, or walk, eat, or drink, for that matter; she was born with hydrocephalus, meningitis and septicemia  (Read more here). But that’s the point, really. Nobody truly knew how she felt about dying, or whether she’d have tried to stop the process of death by dehydration at any point if she could have communicated that she wanted to. Everyone assumed that she’d rather die than live, and made killing her legal based on that assumption, and the ASAN Position Statement points out that media coverage hasn’t included the voices of those with disabilities similar to Nancy Fitzmaurice’s, to give a counterpoint to the narrative that she could never have any quality of life.

That’s dangerous to me, and deeply ableist. No responsible judge would rule that assisted suicide is appropriate for a non-disabled child, even one in extreme pain, who didn’t have a terminal disease. Even if a 12 year-old who was terminally ill made the request, I would like to think that doctors (and judges) would recognize that:

1) At 12 years old, most children aren’t developmentally capable of appreciating all the consequences of that request and

2) Palliative care should be the alternative at that point, not assisted suicide.

If anyone knows of a situation where a non-disabled, terminally ill minor asked for the right to physician-assisted suicide (or the family asked on the minor’s behalf) and received it, by all means let me know. Let’s tackle whether this would actually happen before we tackle whether a non-disabled minor, non-terminal, but in extreme pain, would receive the right to a physician-assisted suicide.

Actually, no need to tackle it. I guarantee that it wouldn’t happen.

Nancy Fitzmaurice was not terminally ill, and assisted suicide cannot replace pain management in disabled people because some non-disabled people think, “I could never tolerate such low quality of life, therefore this person must not be able to either.”

This is all about assumptions and what happens when you throw legal clout behind them.

Nancy Fitzmaurice and Assumptions

When I woke up after brain surgery, I was still intubated. I wasn’t expecting this, and I initially wasn’t expecting the tube to stay in for long. However, the doctors were keeping it in for a reason: They thought that there might need to be more surgery. No one presumed in that (non-emergency) situation, however, that it was okay to go ahead with it without:

1) Ensuring that I knew what was going on

2) Getting my consent

We figured out how communicate through me blinking my eyes, and I let them know that I understood the potential need for more surgery and consented to it.

If someone *ever* makes assumptions about what I must want for my healthcare, based on the fact that I’m disabled, they will rue the day, and I’m not worried about a doctor trying to talk my family into anything if I can’t speak for myself – my father and sister get it.

I just wish that every disabled person was so lucky, because Nancy Fitzmaurice’s parents would like to see what they’ve done made legal without having to go court. They’d actually like doctors to be able to make these decisions, to spare the parents. (Read more here)

I know that there are people out there who would accuse me of having no empathy for the parents. I actually do. I have children in my life that I love to pieces, including a 3-year-old niece. If I had to watch her in extreme pain, day after day after day, not being able to do anything about it..well, here’s what I wrote about Robert and Tracey Latimer, in my post about Kelli Stapleton:

“Even at that age (15) I could appreciate how difficult it must be to watch your kid in pain and not be able to do anything about it…not even give her pain medication, because it didn’t work.  And to know that her body was just going to keep breaking down, requiring surgery after surgery, until keeping her together was going to be more painful than letting her fall apart. It had to be hell. How long could you really keep a father in prison who only wanted to spare his daughter more pain?”

But Robert Latimer (and Kelli Stapleton) went to prison. Nancy Fitzmaurice’s parents were legally permitted to do what Robert Latimer did to his daughter.

In order to understand why the legal assisted suicide of Nancy Fitzmaurice is so upsetting for disabled people, their loved ones, and advocates, I think that people need to understand that even though these kinds of decisions haven’t been legally made until August, they get made already. Babies with Down Syndrome are sometimes denied life-saving surgery because of concerns over their potential to have a good quality of life. A man with Down Syndrome (in the UK, no less) was issued a DNR during hospitalization for pneumonia that neither he nor his family knew about. I’ve blogged about two disabled people in the US, one of them a 3-year-old, where disability and was cited as a factor for why they were denied organ transplants (Amelia Rivera, the 3-year-old, did receive one eventually, but only after a battle with the Children’s Hospital of Philadelphia). The ASAN position statement talks about the University of Wisconsin Hospital’s “practice of counseling parents to withhold care from children with disabilities for treatable but life-threatening medical conditions”, including a young man with treatable pneumonia, who died after his feeding tube was removed – because people decided that he had no quality of life.

These are arbitrary, subjective, ableist decisions based on assumptions about what defines quality of life (and who does and doesn’t possess it/might ever posses it), with deadly results.  And now the power for others to make these life-and-death decisions for disabled people is supported by a legal precedent. The judge has opened an enormous can of worms.

And it’s not able-bodied people that are going to die because of it. It’s us. That’s why this is scary, and people need to understand that.

Nancy Fitzmaurice: The Bottom Line

I hate as much as anyone else that Nancy Fitzmaurice was in such pain, and that her parents had to watch it. But my heart also goes out to the 12-year-girl who loved listening to Michael Buble and who laughed when her mother slurped her tea.

This quote from Nancy Fitzmaurice’s mother really struck me: “I wanted beautiful memories of Nancy, not soul-crushing ones.” I’ve said before about stories like this that the children pay for what the parents want. I’ve got no doubt that Nancy’s parents loved her. But if I was to make an assumption about her, it would be that she wouldn’t want to be remembered as the little girl whose death gave hope to parents who think that it should be legal to kill a disabled child, even if their intentions were simply to end their loved one’s pain.

If we’re going to make assumptions about Nancy Fitzmaurice, I wish that the court had gone with that one.

 

 

 

 

 

 

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Cheryl Green is Making a New Film!

cheryl greenI’m so glad that Cheryl Green and I became friends this year.

I’d known her name for a while, but I felt moved to write to her personally after I read her essay about how  the brain injury community doesn’t seem interested in crip culture, in the “Criptiques” anthology. I wanted to wave my hand around and say “I am! I’m interested and I have a brain injury!”So I emailed her.

(My brain injury didn’t come from the trauma that we normally associate with brain injury, but there *was* someone rooting around in my head for fourteen hours, and my brain did react by bleeding into some places where blood really doesn’t belong, so yeah…)

I thought that she’d get what I was saying. And she did. We’ve had some great conversations – she really *gets* this stuff. She not only makes me feel like I’m on the right track with what I’m writing, but also gets me to see things in ways that I hadn’t even considered. When she interviewed me for her podcast, I felt like I was talking to an old friend.

I wrote to process becoming disabled, and later to start advocating for myself and other disabled people. Cheryl writes as well, but she also makes films. She’s got a new film in the works right now called “Who Am I To Stop It”.  I’m going to let her tell you about it in her own words!

Oh, by the way…on November 14, I’m going to be a guest host on another podcast with another disability advocate for whom I have a great deal of respect. I’ll be a Guest Host on Disability.TV with Andrew Pulrang, and we’ll be discussing disability in “The Big Bang Theory” (one of my favourite shows!) Visit Andrew’s blog to get details on his podcast and the other television shows that he’ll be discussing.

Now…

Cheryl Green Talks About “Who Am I To Stop It”

My story has a lot in common with Sarah’s. I grew up non-disabled. Years ago, I got involved in a disability storytelling project through VSA Texas. Although I was an Intern and Assistant, I became genuine friends with several people in the group. It was then that I realized the extent of segregation I’ve always seen in my community but never stopped to recognize.

How was it that I, in my late 20s then, had never had more than one or two friends with disabilities?

I had grown up with the idea that people in Special Education are “those people,” and the rest of us are regular. I had bought it hook, line, and sinker and done nothing to counter it. I didn’t see disability as a cultural group, an identity, or set of life experiences to be valued.

When the storytellers at VSA Texas took the stage and shared their stories, I had the pleasure of realizing that the sense of divide I finally could name was manufactured, and I wasn’t interested in silently condoning that divide anymore.

I stayed involved in disability art and moved from Assistant backstage to performer in mixed abilities settings. Along with ongoing friendships, I decided to go into a disability service career. When I made the decision, I still did not recognize the depth of stigma and devaluation of culture that happened in the service field. Although I now had several good friends who were disabled, I had not fully learned the depth of discrimination and oppression they faced constantly. Then, the learning came to me.

In 2010, years of accumulating mild traumatic brain injuries had finally caught up to me. I had always bounced back from them. Eventually. Changed, but good enough. Not anymore. The 2010 incident was worse than any I’d experienced in the prior 25 years of being a clumsy athlete. Life, career, even standing up straight all went on hold. I was thrust into a surreal world of fouled up cognitive and sensory processing that was nearly impossible to explain to someone who hadn’t been there. I quickly began to unfold the many layers of disability experience that include impairment and discrimination.

So I made a film that showed people how confusing my life had become. Then, I made another. Though still changed, I began to feel like myself. Or rather, I felt like I had a decent self. I asked myself whether other people who experienced disability from traumatic brain injuries (of any severity) might also turn to art to feel like they have a grounded sense of self. Turns out, there are a lot of people who do. A lot.

In September, 2014, I completed a feature-length documentary on three artists with brain injuries in the U.S. Pacific Northwest called “Who Am I To Stop It.” We are running a Kickstarter campaign online through October 31st to raise the funds for editing, color correction, sound sweetening, and developing disability access through Captions and Audio Description.

This film takes a very unique approach to brain injury documentary in that there are no stories of how people got their injuries, no medical professionals describing how the brain works, and no extended interviews. We took our film inspiration from the highly artistic, compassionate documentary “Marwencol,” with a primary difference being that one of the directors (me) has experienced disability from brain injury.

Please visit our Kickstarter campaign to see some clips from “Who Am I To Stop It.” Kickstarter is all-or-nothing funding. So we have to meet, or exceed, our goal to keep any of the money already pledged! I give my humble thanks for folks visiting the Kickstarter, donating if you are able to, and sharing the link with your communities.

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My Brain AVM: Taking My Meds

11330123_sOctober is Talk About Your Medications Month, and I’ve been thinking about medications…and being one-handed…and a bunch of stuff…

I took an anti-depressant on and-off through my pre-stroke life, but nothing else consistently or long-term. Now I feel like I keep a pharmacy in the house – I take two anti-seizure medications, morning and night, an anti-depressant at night, and Ritalin in the morning (plus vitamins, etc.)  Sometimes my pharmacy remembers to put my meds in bottles that I can open easily, but more often they’re in bottles with child-proof tops.

I tried to find a YouTube video of some actually opening a child-proof pill bottle with one hand. I could only find one, and the person in it actually looks like they do it differently than I do. I grasp the bottle so it’s firmly in my hand, but so that my fingers are at the top to twist it, use my thumb and fingers the push the cap (and the bottle) down hard on a surface (I usually use my leg, but you could use a table) and then, still pushing down, turn the cap to open the bottle.

It’s easier to show you this, of course. The next time I have a visitor, I’ll get them to film me doing it, because after 14 years of doing this, it’s difficult to even explain how to do it.

Long Live the Blister Pack!

There are (arguably) easier ways to handle this, of course. You’ve likely seen Blister Packs, the cards with the ampules into which medicine is already poured, ready for you to punch out and take at the appropriate time. These are actually great, because they can allow people who otherwise might have trouble pouring their own meds to take them independently. An intellectually disabled person who might have had to live in group home or have had a staff person come in to a place where they otherwise live independently to administer medications each day can know by pictures on the card (like a sun, a moon, or a bed) which ampule to punch out when, and have that control.

Why don’t I use a Blister Pack? It’s never been recommended, and I’ve never felt the burning desire to ask, I guess. But I should remember to ask for meds in non-child-proof containers, because sometimes I get lazy and don’t put them on properly, and I have a cat that likes to knock pill bottles off counters when she wants attention. Neither of my cats have any interest in the contents of said pill bottles, luckily.

The other advantage of a Blister Pack is that you just have to look at to it know whether or not you’ve taken your meds. That sounds funny, because you’d think that you’d know…but these things get to be automatic, and when you live on your own and there’s no one around to confirm whether you did or not when you can’t remember because you’ve been on auto-pilot, it’s nice to know.

Random Stuff

Sometimes doctors ask whether my meds make me sleepy, because the anti-seizure meds tend to do that, and the dose for one of them is quite high. I can’t answer that anymore. I’ve always been sleepy, and I’ve forgotten whether it was different before the pills. Some days it feels like the past fourteen years have been a lifetime, and that I’ve forgotten what it was like before.

When I first started working, sometimes I’d get doing something and forget to take my morning meds (which is okay for me to do every now and then, but definitely not a good habit to get into!) Now I set an alarm on my cell phone to remind me when I need to take them, because I’m kind of disorganized!

What are some tricks that you use to manage your medications? What about medication management is challenging for you?

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Kelli Stapleton, Issy Stapleton, and Two Discussions

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I read an awesome blog last week about Kelli Stapleton.

For those that don’t know, Kelli Stapleton was just sentenced 10 – 22 years in prison on October 8 for attempting to murder her daughter, Issy, then 14, who is autistic. Kelly took Issy to an isolated area, drugged her, shut herself up in a van with Issy and two lit charcoal grills, told her daughter that she loved her, and quietly waited for the both of them to fall asleep together. Luckily, someone discovered them and took them to a hospital before it was too late. Issy was in a coma for three weeks and has suffered some brain damage. Kelly pleaded guilty at trial to first degree child abuse, and advocates feared that she’d receive a more lenient sentence than she would for attempted murder on a non-disabled child. However, her sentence is commensurate with one for that crime.

I’ve tried to write this blog post many times already and can’t seem to get it right, so I’m going to try to make this as simple as possible.

There’s a long, long list of disabled people who were murdered by their parents. The list to which I just linked begins with Canadian Tracy Latimer, who was 12 years when she was murdered by her father, Robert Latimer. I was fifteen, just three years older than Tracy, and just starting volunteer work with disabled people when Tracy Latimer’s death hit the news. I was just starting to develop a different lens through which to see her death than the 73%  of Canadians in 1999 who thought that his action was taken out of compassion, and the 41% who believed in mercy killing (Ipsos 1999 ). I always thought that he should go to prison.

I vacillated as to how long as the case developed. Even at that age I could appreciate how difficult it must be to watch your kid in pain and not be able to do anything about it…not even give her pain medication, because it didn’t work.  And to know that her body was just going to keep breaking down, requiring surgery after surgery, until  keeping her together was going to be more painful than letting her fall apart. It had to be hell. How long could you really keep a father in prison who only wanted to spare his daughter more pain?

I don’t know when I turned the corner on it, but now I say that he should have served the same amount of time that he would have if he’d murdered a non-disabled child, as Autistic Self-Advocacy Network’s Ari Ne’eman argued at Kelli Stapleton’s sentencing hearing. A disabled child’s life is a life, and there’s already a perception out there that disabled people are disposable that doesn’t need further encouragement.

Besides, I think Robert Latimer’s desire not to see his daughter in pain was also at least in part about him no longer having to watch his daughter in pain…and it’s not fair that she ultimately paid the price for that.

Because of a technicality with his first trial, it was 8 years before Latimer even went to prison for second-degree murder. He was out in 9 years.

But back to Issy and Kelli Stapleton.

Issy and Kelli Stapleton – Two Important Discussions

As I said, most Canadians supported Robert Latimer’s actions, and Kelli Stapleton definitely has her supporters too – particularly on social media, and on the blog that she wrote. This isn’t unusual when a parent kills a disabled child, especially since the media tends to paint the parent in a sympathetic light and to play up the difficulties involved in parenting the disabled child. The Dr. Phil Show in particular drew a great deal of criticism for this after interviewing Kelli Stapleton from prison.

I watched Dr. Phil’s two-part show about Kelli Stapleton’s actions – twice – and I think that part of the problem was that there two important discussions that arise from stories like this, and one really got almost totally ignored – by the Dr. Phil Show and in general by the media.

There’s a complicated discussion about lack or scarcity or resources that meet the needs unique needs of disabled children and their families. Kelli Stapleton said that she couldn’t get any help. I’ve heard this before in stories where a parent murders a child. I also read her blog – it does seem like she was receiving some supports.

Were they not meeting Issy’s needs? The family’s needs? Would something have worked more effectively? What?

We’re discovering in Canada that slotting people into inflexible supports and saying “This is how it is – adapt to us” doesn’t produce the best outcomes. It’s led to provinces adopting individualized funding, where people receive funding to purchase their own supports from a variety of providers – the improved flexibility lets families create a support system that meets their needs more effectively and produces better outcomes for everyone involved. Because a great support is useless if it’s only offered at a time that the family is unable to access it, or if a family must accept a whole package of services that won’t work for them just to access one that might. Everyone has different needs.

Maybe this is what was going on with the Stapletons, maybe not, but it’s worth thinking about in general. Perhaps, as some have suggested, Kelli Stapleton is just a person who wasn’t interested in effectively using what was being offered to her. I don’t know. But I’m hoping that the people offering supports to the Stapletons at the time of the attempted murder thoroughly went over what everyone was doing with the family at the time, because a few things that came up during the Dr. Phil interview that made me think, “That needs to be looked into. Someone dropped the ball there.”

And then there’s a second discussion, the one that the media in general hasn’t been having about Issy and Kelli Stapleton. doesn’t have. It’s arguably the more vital of the two, and the fact that the media doesn’t have it is a huge problem.

Few in the mainstream media say that it’s simply wrong to murder disabled people.

Lack of services is not an excuse.

Difficult behaviour is not an excuse.

Sparing a person pain is not an excuse.

Parents convincing themselves that the disabled child would be better off in Heaven is not an excuse.

There is no excuse.

Plenty of people in the disability community have said this since Kelli Stapleton tried to murder Issy, especially since the Dr. Phil interview. Dr. Phil tried to say it, I think. He was clear with Kelli Stapleton that he found her actions unacceptable, but the message was lost. It didn’t make it through to the people who are used to the very direct, “What were you thinking??” approach that he takes with other parents of children in crisis.  He went extremely easy on her. There were many questions that I wanted answered that weren’t asked, and and the social media response showed that people came away with a sympathetic view of her.

The media needs to tell people that there’s no excuse for that, either. It’s victim blaming, and it doesn’t happen when parents murder non-disabled children. This should not be a society where, when a child is murdered, the murderer gets our sympathy.

Justice for Issy Stapleton

For justice’s sake, let’s take it down to the bottom line and leave autism out of it: Kelli Stapleton tried to murder her daughter, Issy, and got the usual sentence of 10 – 22 years in prison. That’s the justice that Issy Stapleton deserves, and that’s what all of us who have been standing behind her were hoping for.

I think that this is the closest that I’m going to get to what I want to say.  The awesome blog that I mentioned in the first line was written by Beth Ryan at Love Explosions.

Here’s some more great writing about Kelli Stapleton and her daughter Issy Stapleton:

I Am Not Kelli Stapleton Flashblog

ASAN, Disability Community Statement on the Sentencing of Kelli Stapleton

Changing Conversations: When Parents Murder Disabled Children

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Accessibility Advocate in My Own Town

Accessibility Advocate in My Own Town

imagesI find it difficult to do accessibility advocacy in my own town.

I do it. Every now and then, I’ll approach a store owner over an accessibility issue. Depending on how they respond (not necessarily on what they do about the request, but that definitely helps), and whether the service is available from another store in the community, I might decide to shop more there…or less…or not at all…it depends on whether I felt brushed off or taken seriously. I once cornered a municipal politician in the post office and expressed a concern about accessibility in the town.

My town is much more accessible than it was than when I moved back here after my stroke, but there are still quite a few issues that need addressing, and the Ontario Government is going to require that they be addressed. There’s a plan in place that requires public places, businesses and non-profit buildings to meet certain standards of accessibility by certain dates. By 2025, most buildings and public spaces will be required to be fully accessible. Municipalities and the businesses in them need to be planning for this. A new standard is coming into effect on January 1, 2015.

I didn’t talk about this the other night at my municipality’s all-candidates meeting, but I did ask what the candidates for Reeve and Deputy Reeve intend to do to make my community more welcoming to disabled people.

Election Season

It is that time again. We’re coming up to a Municipal Election in Ontario. I really wanted to be at all of the All-Candidates meeting for my municipality last night, but I had to work. However, I’m working not far from where the meeting was being held, and I got in just under the wire to ask my question.

I’m not new to public speaking or advocacy, but this one was difficult, and I’m not really sure why. It took a lot out of me, to stand up in a room packed with my neighbours, my former teachers, agency people that I’d not talked to for years, people that my family had gone to church with, people that had known me for most of life, and say, “I’m disabled and I need you to take me seriously.” I remember, after first encountering people from my community when I was in my wheelchair, I vowed to be seen in my wheelchair in town as little as possible. I’d seen the pity in their eyes and I’d hated it.

I didn’t want their pity the other night, either, but I wasn’t going to run from it this time. As to whether I was taken seriously – I pretty much got the answers that I expected, which is that making the town more accessible is a process and that it costs money and takes time. One candidate was able to identify some specific things that she’d like to see done.  Another said that Council would “have to talk to you” (presumably disabled people) to find out what was needed.

Yes. You will. The answers that the Council candidates gave to a gentleman in line just ahead of me prove that.

If You Haven’t Been There, You Probably Haven’t Thought About It

He was concerned that in order to walk to our community hospital and medical centre, people have to walk along the highway, which is unsafe. It is. I’ve made this walk myself. He wanted to ask the people running for Council what they were going to do about it, and very few could answer the question.

They’d never walked to the medical centre or hospital from town, so they weren’t aware it was an issue.

I don’t know if any of the people running  last night read this blog, but this is what accessibility issues are like. Unless you’ve had to deal with the issue yourself (whether because you’re disabled or someone in your life is), you’re not likely to be aware of what the issues are. For example, a ramp to get into a public building is wonderful, but having to get across grass to get to it is an accessibility issue. But it’s difficult to know that unless you’ve had to push yourself around in a manual wheelchair.

Or unless you ask someone who’s had to do it.

So if you want to know how to best make the town accessible for disabled people, ask us what we need. We’re the experts on our own experience, and we’re not going to steer you wrong – after all, we just want to be a part of the community too.

Let’s finish with a story about accessibility, for the candidates all over Ontario who are being asked about it. Because I think there’s a tendency (and it’s not wrong, of course) to have the mind jump automatically to costly ramps and modifications to buildings when we hear the word “accessibility”. But, as so many who read this blog know, accessibility so much bigger – and often so much simpler.

Accessibility and Customer Service

There are a couple of grocery stores in my town, but I like one, the Foodland, in particular. It’s within walking distance, first of all. But for other reasons, too.

I manage food shopping pretty well, but something invariably comes up that’s difficult to do when you’ve got one hand to work with and your balance is a little off. Something is too heavy to get off the shelf and into the cart. Something is too high on the shelf. The damn produce bag won’t slide open – I could barely get those bags open when I had two hands to work with!

One day, I was walking around with a cart (instead of trying to cram everything into a basket and then carry my cane under my arm, because why do anything the easy way?), and a young employee stopped beside me. He looked like he was in high school. He looked at my cane, then at me, and said, very pleasantly, “Ma’am, do you need any help?”

On that particular day, I didn’t. But I’ve had days when getting around has felt so overwhelming  that a simple offer like that probably would have almost reduced me to tears of gratitude. Even on my bad days, I’m not very good at asking for help, even though the staff at Foodland are always very friendly and I know that I could ask any one of them for help if I needed it.

The easiest way to make your store accessible is to keep your staff accessible. At Chapters I have to fight off the floor staff, but at least I know that support is never far away. Stores that have cashiers ask “Did you find everything that you need?” at check-out give people an opportunity to get assistance without even disclosing an invisible disability, if they prefer, and non-disabled people will talk about the good customer service.

Accessible spaces benefit everyone. So do customer service practices that increase accessibility, and they don’t cost a thing.

Good luck to all the candidates on October 27th.

 

 

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And…Kanye West Responds.

This is just my opinion…but based on this speech that Kanye West gave at his show on Monday night, I don’t think he gets it.

I could be wrong.

Thanks to The Daily Beast for the transcript of West’s rant:

“What I want you to do is I want you to run the video everyone’s talkin’ about where I so-called screamed at somebody and everything. I want you to run that, right, since this is such big media-press-news and everything that obviously they trying to demonize me for. It’s like, ‘Welcome to today’s news, ladies and gentlemen.’ We’ve got Americans getting killed on TV, kids getting killed every weekend in Chicago, unarmed people getting killed by police officers…

…It makes you just want to reflect on what are the things that are a little bit more sensationalized than others. I want to take this platform. If I didn’t have this last concert, maybe I would’ve tweeted something or put out a statement with a publicist, but I can talk directly to you—my fans. Because they’ve got this thing where they want the masses—people who’ve never heard my albms—to somehow read a headline that reads negative, and think that I’m a bad person or somethin’. I’m not judging, I’m just going to tell you who I am. I’m a married, Christian man. So, if you take someone that can go from being a rock star across the globe and everything and make the decision to pick one woman and raise a family, anyone here that’s married or that’s in a relationship knows that there’s enough things workin’ against you. I’m not going to make one of them Ben Affleck statements and shit.

But what I’m sayin’ is, you’ve got like 12 years that we put in positive music. How many people ever heard one of my songs on their way to work—they heard it, and it made them feel better? And on those songs that made them feel better, don’t I say offensive shit here and there, like, so wait a second, that’s my brand! I curse and say really offensive… wait a second. That’s why when I did ‘Runaway’ earlier, I said, ‘I sent ya a picture of my dick…’ what did ya think when y’all heard that? That’s not G-rated! This is rap fuckin’ music! This is real expression. This is real artistry. You know, an artist’s career doesn’t happen in one cycle of news—an artist’s career happens in a lifetime. And if you’re a true artist, you’re willing to die for what you believe in.

And I don’t know if you feel like this, or give this feeling after the 10, 11, 12 years, but does it seem like in any way I might be slightly a true artist? So, people on the Today show, I’m not sure I keep up with the news, but if Michael Strahan is still at the Today show—no, Good Morning America, Matt Lauer, the girls on The View—Whoopi Goldberg, Robin Roberts, if y’all run this, take a step back and look at this: I’m a married Christian man with a family. At my concerts, I make sure everybody has as good a time as possible. So all this demonizing me, it ain’t goin’ to work after a while. Pick a new target. Pick a new target. Because I’m not one of these dumbass artists that you’re used to. You come at me, I’m going to take my platform and break this shit down for real, intelligent people every night. And then, we’ll get back to the music.”

 

I might come back to this, I might not. Right now it’s just making my head hurt.

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