Author Archive | Sarah

It’s hard to believe that I started this blog two years ago today.

I originally started writing here as something to do when I was between jobs…I never dreamed that I’d learn so much in the process, and that it would bring me into contact with such amazing people.

I never dreamed that I’d get to my first blogoversary, let alone my second!

Thank you to those of you who have been kind enough to link to this blog, and of course to those of you who are kind enough just to take the time to read – that’s a real honour, considering that a lot of my posts are ramblings as I try to work out something for myself.

Because while my opinions on some things are pretty set…I certainly don’t have all the answers. I appreciate the dialogue that’s starting to happen here. It’s making me think.

I’m looking forward to continuing this into Year 3…and celebrating the Girl With The Cane Third Blogoversary this time next year!

So, there’s been an update to the International Sign for Access icon (the little dude in the wheelchair drawn in white against the blue background), and New York City is going to adopt it. Cambridge, Massachusetts resident Sara Hendren did the design. You can read a little more about her  and the redesign process for the ISA icon here.

It’s not just New York that’s jumped on board with this:

• Dr. Satendra Singh, coordinator of the Enabling Unit at University College of Medical Sciences & Guru Teg Bahadur Hospital in Delhi, India, has made a request to his government that the updated design be adopted through the entire country. 
• Gary Christenson, Mayor of Malden Massachusetts, wants to hire integrated groups of students to paint the new design on the town’s handicapped parking spaces.
• Mystic River Charter School and Gordon College (which partnered with Sara Hendren to create the new icon) display it on their grounds.
• Talbot’s, Goodwin Proctor, and CBD Garage in Malden are corporate partners.

Learn more about the Accessible Icon Project here.

Sara Hendren: Why I Like The New ISA Icon

Let me preface this by saying that I don’t have anything at all against Sarah Hendren’s new ISA icon. I like it, actually, and I think that Sara Hendren did what she set out to do with it. It’s a more active, engage depiction of a disabled person, and makes me think of someone moving through life more on their own steam, their own terms. It’s a “nice look”, if you will, for disabled people, although I can understand the criticism that the icon looks a bit too much like a wheelchair racer, and therefore not really representative of most people in wheelchairs.

But if we’re going to get into that…the ISA has always been meant to represent disabled people, and there are a whole lot of disabled people that don’t even use a wheelchair. So that particular criticism falls a bit short of the mark for me.

No, my concerns about it lie in a whole other realm.

Sara Hendren: My Concerns About the New ISA Icon

Granted, I know nothing about Dr. Satendra Singh, or Gary Christenson and the City of Malden, or Gordon College, or the prior disability advocacy efforts of Talbot’s and Goodwin Proctor. From the little that I’ve read, it sounds like Singh is a disability advocate in his own right, that Christenson has sights on making Malden much more disability-friendly in general, and that Gordon College has absolute champions for disability rights in Disability Icon team members Brian Glenney and Cyndi McMahon.

New York contact Victor Calaise, the Commissioner of the New York Mayor’s Office for People with Disabilities and a disabled man himself, sounds very excited about the project as well.

But I’m cautious. I’d say to any city or institution that embraces the use of Sara Hendren’s revamped icon: It’s easy to put up signs and paint parking spots. Are you truly on-board with the philosophy behind the new icon? How are you going to show *that*?

New York, I’m Looking At You!

I don’t even live in America, and I haven’t forgotten the fuss that Michael Bloomberg put up when the Justice Department told him that he had to increase the number of accessible taxis in the city from 2%. I haven’t forgotten that you told disabled New Yorkers that they could make do with a dial-a-cab system that sent cabs chronically late, if it sent them at all. And I haven’t forgotten that the cab that your administration chose to be *the* New York cab for the next decade isn’t accessible without substantial and costly retrofitting, even though there are factory-ready accessible models available.

And I haven’t forgotten these comments from Michael Bloomberg…and if I haven’t, I’m sure that disabled New Yorkers haven’t either:

• “It’s always somebody who says, ‘oh, no, everything has to be handicapped accessible, or wheelchair accessible,’ but that’s not necessarily what the people that are in wheelchairs need,On the lawsuit against the city stipulating that more accessible taxis are needed:“It just doesn’t work in a city like ours, and I don’t know that the [U.S. attorney's office] understands how people live in the city and the traffic patterns and that sort of thing,”
• On the ruling, in appeals, that 231 accessible cabs out of over 13 000 is sufficient: ”This ruling is consistent with common sense and the practical needs of both the taxi industry and the disabled, and we will continue our efforts to assist disabled riders.”

It still makes me want to beat my head against a wall.

Sara Hendren and the New ISA Icon: The Bottom Line

As much as I like Sara Hendren’s revamped ISA icon, I think that there’s a danger here. It’s not enough to just put it up on our signs and paint it in our handicapped parking spaces and give ourselves self-congratulatory pats on the back because of it.

If there’s anything that I’ve learned since starting to write this blog, it’s that the fight has to be deeper, wider, and more substantive than that.

Again, New York, I’m looking at you in particular. The next mayor is really going to have to wow me before I’ll be convinced that this move is anything but lip-service.

Brace yourself, folks, this is a bit of a read. My apologies. I caught a discussion on Facebook among some friends the other day about a news story out of Northwestern University. FOX reported that a male student, Stephen Piotrkowski, was denied a position at Northwestern University’s Associate VP of Diversity and Inclusion because her is a white, heterosexual male .  My friend started the discussion using this quote from the Daily Northwestern: “This university is not ready, in any capacity, for a heterosexual white male to be in charge in any way of diversity and inclusion…I don’t know if any university is.”

I wasn’t there for the actual discussion, but one of the participants and I discussed it later. She was firmly on the side of Northwestern University. Most of the other participants thought that that what had happened was discrimination.

Which, of course, according to the strictest definition of the word, it is. I admit to being torn about this at first.

But I’ve given it a lot of thought since.

Stephen Piotrkowski: A Question of Being Able To Understand Who He’d Be Representing

I took a course in Social Psychology back in university. It was a very interesting course. We spent a lot of time on race and racism, in Canada particularly. One of the exam questions ran along the lines “What would you do improve race relations in Canada?” and my answer ran along the lines of “Abolish affirmative-action-type programs and hiring quotas in employment.” I went on to explain that these programs just caused resentment when it looked as if people, were benefiting from them based on ethnicity, and that the real solution was to level the playing field so that everyone who wanted it had equal access to the opportunities to become the best qualified candidate for a job, regardless of ethnicity. As if that’s so simple, right? I was 20, white, and terribly naive.

My friends arguing on behalf of the man who’d been denied the job (all people who I know from prior discussions have given issues like these some considerable thought) argued that as a white, heterosexual male with no personal experience of being a member of an oppressed group (that he’d admit, at least), he was not a member of a “protected group” on that campus, and therefore had no means of appealing a discriminatory decision.

The friend arguing on behalf of Northwestern University said white, heterosexual males don’t need to be a protected class, since they already run everything. A university professor, she cited her academic and personal experience with university campus diversity committees and how they operate, and talked about the need to have them composed of people who have lived the experiences of the people that they represent.

Jessica Steitz, one of the student Senators who questioned Stephen Piotrkowski, sounds like she would agree. According to the                Daily Northwestern, she asked him: “When you’re forced to work with all these multicultural groups that are, for the most part, not made up of white males, do you think you have the perspective that is not their perspective, to bring to them?”

I get this viewpoint, too. I actually had this sort of argument when I was in community college, living in residence with several other women. One of my roommates had lived in Canada for about four years. She was black (which made her stand out on our small campus), and she was a Muslim. She was trying to tell me that, as I was white, there was no way I could understand the experience of discrimination.

“There’s no way I can understand your experience of discrimination,” I said. “But, as a disabled person, I’ve experienced discrimination…and I wouldn’t expect you to understand my experience, either.”

But she didn’t agree that it was possible for a white person to experience discrimination, period, and we weren’t friends for long.

Still Talking About Diversity Committees, Which I Realize Isn’t The Specific Issue for Stephen Piotrkowski, But Bear With Me

Assuming that my roommate and I could have sat in the same room together long enough to be on a diversity committee together (it soon became difficult for us to do so even as roommates, which made for an interesting year) I believe that both of our experiences would have been valuable. There’s no greater expert on the experience of being a disabled person or a recent immigrant and their needs in a given committee than the person who’s living that life. I’m seeing members of the autism committee make this argument more and more recently, and I think it’s a valuable one.

I think that people who have experienced discrimination, while they may not necessarily fully understand each others’ individual experiences, can empathize with each other and comment on the experience, among themselves and to others, in general terms. I think that there’s a universality to the discrimination experience in terms of how it makes us feel that increases the power of diversity committees exponentially. No matter the nature of your discrimination experience, you’re linked to others who have experienced discrimination, just by having experienced it.

And I don’t think that there’s any reason to make a blanket statement that white, heterosexual men don’t belong on diversity committees.  In the case in question, no statements on disability were made, implying to me (given the nature of the story) that nothing came up relating to them. But a white, heterosexual man could have any number of invisible disabilities that had caused people to discriminate against him in the past.  It’s not impossible that Stephen Piotrkowski didn’t have some experience with being discriminated against. Even if he didn’t, I don’t believe that we can absolutely say that a person with experience with groups that have experienced discrimination, and a good appreciation for the issues involved, even with no personal experience of it, can’t still be a great member of a diversity committee (provided that the experiences of the other members give the committee the diversity that it requires).

But, from what we know of the situation,  Stephen Piotrkowski does not have a personal experience of being the “other” in this society, and he wasn’t just applying to be a member of  a diversity committee.  Stephen Piotrkowski was applying to *the* face for inclusion and diversity on Northwestern’s campus. While I know (because I know them!) that there are very socially aware, empathetic-to-the-max men out there who have likely never experienced discrimination personally but who would still be amazing at this job, they honestly probably wouldn’t want it – they’d realize that, as sketchy as this sounds to the idealistic 20-year-old in me who still pokes her head out from time to time and stomps her feet and says “But that’s *not* how it should work!”, making a white, heterosexual male the Associate VP of Diversity and Inclusion at a university in this day and age sends a negative image to the people that he’s supposed to serve.  They’re going to assume that he can’t relate to them. It’s not right, but there it is.

Stephen Piotrkowski: What’s the Solution?

And it makes me sad for the white, heterosexual males that I know that could do this Associate VP job really well, because it’s not their fault that they’re being punished for being men in a patriarchal, racist society whose values they don’t share.

I suppose that the friend who said he was sad for me because he knew that disabled people experienced employment discrimination and that he was sorry that I had to experience it felt kind of the same way.

Sometimes life isn’t fair. At the very least,  Stephen Piotrkowski now knows how it feels to be “othered” – I’m sorry that he had to experience that, but I hope that he can take something from this admittedly unfair and unfortunate situation and use it. If he’s really serious about furthering the cause of diversity, it’ll actually serve him to better understand just what it is he’s fighting for, as he join the countless others working a way to level the playing field for everyone.

So, apparently the way to see Disney World is to hire a disabled person to pose as a family member, so that you can bypass the rides for the lines. Social anthropologist Dr. Wednesday Martin cracked the story while doing research for her upcoming book, “Primates of Park Avenue”.

“This is how the one percent does Disney,” said a mother who enlisted the services of Dream Tours Florida to provide her with what she called a “tour concierge”. For $130 an hour (or $1040 for an 8-hour day), a woman on a motorized scooter with a “handicapped” sign on it accompanied the woman, her husband and two children through the park during their visit, enabling them to access a special entrance at all the rides where the wait time was significantly shorter.

Disney offers a VIP tour service that’s a bit cheaper, but parents are finding that this “black market” service is apparently worth the cost. The service is accessible only by “insider knowledge”, with the most recent group of “insiders” being New York’s private school set, according to Martin.

Is Dream Tours Wrong for What They’re Doing at Disney World?

I think that they are, bottom line.

I’m not going to pretend that people didn’t suggest to me, when I was in my wheelchair, that I visit the large Canada’s Wonderland amusement park while I was still dependent on it, so that I could take advantage of not having to wait in line. I never got around to it. A day at the Metro Toronto Zoo in my wheelchair, which didn’t have the fuss of constantly transferring on and off of rides, was exhausting enough (for both me and for the people pushing me.)

And the part of me that dislikes Disney smiles a bit to think of anyone sticking it to them. But only a little bit, because overall I find this Dream Tours-Disney World thing. pretty icky.

Even if the disabled people in question are getting a decent wage out of the money that Dream Tours brings in for having them escort people around the park (and let’s hope that they are), I just cringe at this. Not only does it contribute to the cultural perception that disabled people and what they go through isn’t really to be taken seriously, it potentially makes it much more difficult for people who are legitimately disabled to get what the need to enjoy the park. Now that Disney World is aware that people are scamming the system, they’re likely to be much more diligent about who’s going to get access to the disabled passes (which, as people like Brenda Rothman have written about in detail, can be difficult to procure to begin with). In the name of shortening the wait for people that can afford the service (and that are physically able to manage the line-ups), Dream Tours may make Disney World more reluctant to provide services for people who really can’t manage the long wait. Perhaps they didn’t think about that as a consequence of making this service available, but that’s just symptomatic of our culture’s attitude toward disability as a whole: their needs are invisible. They’re invisible.

Hopefully Disney World won’t go that way and will choose to crack down on agencies like Dream Tours who are offering this black-market service, instead of punishing the guides themselves and other disabled people who visit the park. But I feel like it could go the other way too.

And for those that would argue, “The disabled people who are acting as the guides didn’t have to take the job,” you’d be right. I don’t imagine that Dream Tours held a gun to anyone’s head and said, “You have to help us lead rich people around Disney World so that they don’t have to stand in line!” But when you consider that it’s very difficult for disabled Americans to get income support, with cuts to supports and services especially in the face of the Sequester affecting how well they can survive, with the unemployment rate for disabled people in the US still standing at nearly twice what it is for non-disabled Americans…can you blame a person for taking a job for which they’re uniquely qualified, whether it’s the right thing to do or not?

I think that, if I were in that position, the thing that would bother me the most is having people look at me and feel like they’re making the assumption that it’s all I’m capable of doing. That the only marketable job skill I have, so to speak, is the fact that I’m disabled and can get people onto the rides faster at Disney World. It feels like it would be terribly dehumanizing.

And the last thing that disabled people need is more dehumanization. I hope that Disney World keeps this in mind, makes the right choices as it deals with this, and doesn’t end up punishing disabled people for something that isn’t their fault.

Read More Here

Disabled American youth and their families, as well as the people who support them, should take advantage of an opportunity to have their voices heard that’s being made available until May 27. Several federal American agencies are opening an online dialogue on transition planning issues for disabled youth, and need to hear from as many youth and families/caregivers as possible, as well as educators, support workers, agency staff, and policy and lawmakers. The dialogue focuses specifically on issues relating to the transition from secondary school to work life for disabled youth.

Transition Planning – Why is it Important?

This cause is one that’s especially near and dear to my heart, as I did transition planning with intellectually disabled high school students for a number of years. I didn’t understand when I first took the job why it was so important. I now understand that the transition from school to adult life is huge for disabled students, arguably even more so in many ways than for non-disabled peers, and that the question of “what comes next” is often hugely stressful for these students and their families. Transition planning needs to start early, and it needs to be thorough, because a myriad of things need consideration:

• What does the student want to do after graduation? Work? School? Have all her options been explored with her, the way they are with non-disabled students? Does the student understand what diploma track he’s  on and how that affects his options? Is her current academic program  giving her both academic and experiential edge that she needs to meet her goals for post-secondary school life? Does the student have input into his educational planning and course selection?  Will the student have a resume and job-hunting skills when she graduates? 
• Where does the student want to live after graduation? Does she have the skills that she needs to live safely and comfortably in the environment that she desires? If he’s supposed to be learning those skills through a school program, is that indeed happening? If additional skill-building is needed, what are these skills and who can teach them? If the student wants to live at home, what kind of supports will the family require to have her keep living there, given her disabilities? If he wants to live away from home, what supports will he need to do so? Does he want to keep living in his home community, or relocate?
• Who will ensure, that, by the time the student needs them to apply for any needed supports/jobs/a driver’s license that the student will have and have some means of effectively keeping track of a birth certificate, health insurance card (in Canada), and Social Insurance Number?
• What kind of supports does the person need? Can she keep her pediatrician and childhood dentist once she turns 18, or does she have to find new ones? Is she eligible for disability income support? Are medical supports in the home required? Are supports for cooking, cleaning, budgeting, etc, required? Where do people apply for these supports? What do they cost? Is there government funding available to help?
• Are there consent/capacity issues once the student turns 18? Does the student understand enough about his body and medical conditions to make his own medical decisions, or should parents consider trying to get a Power of Medical attorney?  Should a trustee handle disability income support funds, and who should it be? Do the people around the student understand his rights as a disabled adult?

This is really just a taste of what can be involved with transition planning.

Transition Planning – Rarely a Smooth Process

As you can see, doing good transition planning and constructing a plan that best meets the student’s needs can involve a ton of coordination and agencies from a number of different spheres working together.

The transition planning process can hit brick walls in any number of places, and the American government wants to know where these brick walls are.  The joint venture of the the U.S. Departments of Labor, Education and Health and Human Services and the Social Security Administration wants to hear concerns about the “regulatory and legislative barriers that young people with disabilities are facing in accessing employment, education, Social Security and health and human services.”

Comments can be submitted via Web interface until May 27, and may be used to shape future decisions on policy. It’s a unique opportunity of which everyone who’s concerned about American youth with disabilities should take advantage – and that we should encourage other countries to offer as well.

I learned yesterday from the Blogging Against Disabilities Day 2013 post over at Diary of a Goldfish that fellow disability blogger Dr. Elizabeth McClung  has died.

Beth was one of the first disability bloggers that I got to know personally. She was the first blogger, I believe, to put me on her blogroll and for a while we emailed back and forth. I frequently commented on her blog, Screw Bronze, and it was always a treat when she’d comment here.

Beth had a severe and very rare autoimmune/autonomic disease, and was often very, very ill. It didn’t stop her from doing what was important to her, like participating in the Terry Fox run for the last five years, traveling with her wife, Linda, spending time with their friend, Cheryl, and writing and sending over 6000 postcards to whomever indicated to her on her blog that they wanted one.

Even with her ill health, she blogged often. Her blog won awards. She wrote thoughtful reviews of the movies she was watching, talked about her travels and her community activities, and always included lots of art and pictures that she’d taken on her own. Many of her posts show her heart for advocacy for the rights of women,  disabled people and LGBTT people. She also wrote about disability rights for BBC’s Ouch blog until 2008, and did advocacy work in her community and province as she struggled to get the  health care supports that she needed. I experienced the best of what Canada’s health care system has to offer. Beth experienced the worst. Her stories were shocking and deeply worrying, and feeling so helpless while she went through such hardship was difficult. She was a very, very strong woman.

Beth always made me think.  I’m very grateful to her for that.

Goldfish pulled up her Blogging Against Disabilities Day posts, as samples of her work. They are all great examples of Beth’s heart and voice:

The life no one wants and the war on disabled

Disablism within disability

I believe…one day

Those lazy, deceiving disabled. Why won’t they die?

This is my 300th post. Cheers, Beth – I wouldn’t have gotten this far without you.

I shall miss you.

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 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/

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 specifically…as 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.

Photo courtesy cbc.ca

“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: http://www.biography.com/people/pierre-trudeau-9510956?page=2) 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 http://www.cbc.ca/thesundayedition/documentaries/2013/04/14/documentary-the-golden-rule/- 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: http://www2.macleans.ca/2013/04/14/justin-trudeaus-acceptance-speech/