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

Thinking About Disability – Getting Out of Bataclan Concert Hall

a picture of the Eiffel Tower in Paris, France, with a retro effect, with a heart icon like the like buttons used in social networks to depict the idea of liking the picture - Bataclan Concert HallLike everyone, my thoughts have been on the attacks in Paris and the friends and families of the people who died. As others have observed, this feels like a game-changer, and it makes me feel…anxious, and sad. This isn’t same world, even, that I went to university in, and I wonder what it will look like by the time my two nieces and my nephew are fully grown.

I inevitably end up thinking, when something like this happens, about disabled people who may have been involved. In the car last Saturday,  my father and I listened to a CBC radio program where the host interviewed someone who was in Bataclan Concert Hall when the shootings began talk about what he experienced as people rushed to get out, and as the surrounding area and Paris in general realized what was happening.

“I don’t know what I would have done,” I said to my father honestly, thinking at the time about where I would have gone once I’d gotten out of Bataclan Concert Hall and onto the street.

“Gotten out of the building,” he said.

Yes, okay, that’s a given. But I’ve since thought, would it have been that easy, as a disabled person?

Getting Out When You’re Disabled and People are Scared

I don’t know what the interior of the Bataclan Concert Hall looks like, so I’m making some assumptions. But, based on the layout of a typical concert hall, I think that I could probably have gotten out of Bataclan Concert Hall fairly easily at this point in my stroke rehabilitation, assuming best conditions given the circumstances. With my cane, I’m fairly stable and I can move surprisingly quickly.

Yes, I probably would have gotten outside. Assuming best conditions given the circumstances:

  • Assuming that in other peoples’ panic to get out I did not get knocked over
  • Assuming that it was a good day and I wasn’t feeling dizzy or otherwise unwell

But that certainly would not have been the case in previous years, and as much as I like to give people the benefit of the doubt, I do not trust that a large, panicked group of people trying to leave a concert hall would necessarily help out a stranger who had fallen.

Or assist a stranger in a wheelchair who perhaps couldn’t get to the wheelchair entrance/exit because that would mean heading in the direction of the shots.

Or assist someone with low vision who may not be able to move as quickly because he or she has to use a white cane.

Or find some other way of making sure that a disabled person that otherwise needs assistance during a situation like that gets it.

The instinct for self-preservation and the protection of loved ones kicks in. I get that.

I think it’s a complicated issue, because unless I’ve totally misunderstood the law, being in a venue like the Bataclan Concert Hall for an event doesn’t mean that the venue owner has the same amount of responsibility for your safety as would, say, the administration of the school that your child attends. Schools absolutely have a responsibility to make sure that all students, including disabled students, are made as safe as possible in the event of gunfire on school grounds, including going into lockdown mode – teachers can’t just leave because they’re scared for their own safety. I don’t know what employees did at the Bataclan Concert Hall, but I don’t imagine that many (if any) stayed out of duty to patron safety – why would they potentially risk their lives that way?

I get that.

(Please feel free to correct me if you’ve heard otherwise. There certainly are dramatic stories of employees risking their lives for no good reason to save others in a crisis.)

However, there are safety standards that all businesses must meet, and when they don’t and patron safety is affected because of it – they need to be held accountable. And while I’m not going to suggest that a comprehensive plan about what needs to be done in the event of terrorist attack needs to be Priority One for either entertainment venues like the Bataclan Concert Hall or the disabled people that visit those venues (because, after all, in the grand scheme of things these sorts of attacks are still extremely rare in the West) in light of the fact that the world *is* rapidly changing and threats keep moving closer and closer (have up already in a movie theatre, in fact, if you remember the shooting in Aurora, Colorado – not ISIS-related, but certainly shocking in its brutality) perhaps venue owner owners need to stop and reassess, in light of these latest attacks:

  • What are the possible things that could go wrong during a show, however remote?
  • What are our responsibilities to patrons, in terms of their safety?
  • Are we meeting those responsibilities for *all* of our patrons, at all times?
  • Why or why not?
  • If “no”, what needs to be done? What’s the plan to make the necessary changes?
  • Whether “yes” or “no”, how do we best communicate safety procedures to all patrons?

And I think that everyone, disabled or non-disabled, should be cognizant of variables that might make a sudden, safe exit from a public venue difficult, and have a general plan for dealing with it:

  • Limitations imposed by disability (slower movement) or by navigating a panicking crowd or a building that’s not accessible enough
  • Responsibility for others’ safety (babies, children, any other person/people who need/needs assistance)
  • A fear of something involved with any sort of emergency and/or a sudden exit that may getting out safely overwhelming or difficult to do. For example, if you know that you become overwhelmed in the face of fear and tend not take action because you can’t make a decision about what to do first, that could be a problem.

Disability, Specifically

I can see some people pointing out that the obvious solution to the issue of making sure that you can safely get out of a venue quickly if you’re a disabled person that’s perhaps going to need assistance is to go to events in venues like movie theatres or the Bataclan Concert Hall with a person that can assist you to leave safely in an emergency.  For an event like the Eagles of Death Metal concert in Bataclan Concert Hall, presumably most people were with at least one friend anyway.

But not necessarily. I’ve never gone to a concert alone, but I’ve certainly gone to movies and plays alone. I’ve got friends who can’t imagine doing that, but it’s never bothered me.

To those that make the “bring a friend” argument – that requires an assumption that everything that a disabled person needs to safely exit a venue in an emergency will be in working order – for example, that the emergency exit by the screen in the movie theatre has had snow cleared away from it sufficiently that the door will open. If the damn door won’t open, who cares whether a friend very carefully helped you wheel quickly to it?

As I said earlier, there needs to be a procedure, there need to be checks scheduled, and people need to be doing them.

Story Time

When I first moved into my apartment building, my name appeared on a list of people who weren’t to leave in a fire, because I couldn’t move very quickly – in all drills I was to wait for the fire department to come get me. A number of people in the building, especially elderly people on the upper floors, are to wait this way – they are evacuated from their balconies. This works because the building is constructed so that it’s very difficult for a fire to get out of the section in which it starts – a lot of thought went into protecting residents and making sure that they’re safe in their apartments for an extended period of time.

I don’t have a balcony, as I live on the ground floor. I now leave through the building’s front door by myself anyway, but I didn’t feel especially unsafe when I didn’t because I knew that there was a procedure and I saw by what happened during the fire drills that it worked. I trusted it.

But I don’t have that level of trust in movie theatres, or even concert venues. Sorry. If the manager one (preferably more) of them is willing to show me an emergency evacuation plan for something like fire that includes procedures for ensuring that everything is set up so that all patrons are able to get out safely, including the schedule for how often it’s all checked to see that it runs smoothly, and evidence that people are checking it frequently…maybe I’ll change my mind.

Difficult Questions

It’s crossed my mind a couple of times since hearing about the Paris shootings that, for my part, if I’m worried about falling and losing valuable time in any sort of emergency in venues like movie theatres or concert halls like Bataclan Concert Hall , then maybe I shouldn’t be going to movies and plays alone.

That’s a hard pill to swallow, and the “victim-blaming” rhetoric of “It you don’t want this to happen, then you shouldn’t…” isn’t lost on me. I don’t like it and I’m not sure how to reconcile it as these threats, however statistically rare they are, require us to ask difficult questions about how we can make public places as safe as possible for everyone, and what role we all play in that.

It’s definitely something that I will continue to think about.

Thoughts and prayers are with the people of Paris.





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My AVM Story: Back to Physiotherapy

Bar track walk physiotherapy unit for rehabilitation

Bar track walk physiotherapy unit for rehabilitation

I thought that it was probably time to post an update on the chronic pain that I’ve been having in my left leg (my weak leg) since last January. After an MRI showed that there was nothing in my thigh that should be causing any pain, and my GP admitted that she was stumped, we decided to do what we probably just should have done in the first place: have a physiotherapist investigate.

Back to Physio

There are a number of physiotherapists in my town, but physiotherapy through the hospital is covered under the province’s medical program. There’s a waiting list, of course, but my leg wasn’t really bothering me at the time, so being on a list wasn’t a hardship. My name came up about a month ago for a block of appointments, and I’ve now been to three sessions.

Some background: I still fall every now and then, especially in winter when snow and ice make the sidewalks difficult to navigate. Generally, I’m much more likely to fall when I’m tired because my toe tends to drop on my weak leg and I’m not as careful about making sure that I lift my leg enough that it clears the ground. When my toe catches the ground, I pitch forward, and when I can’t right myself in time, I fall. Other stroke survivors will know what I’m talking about.

I don’t think much about it when I fall because I usually don’t hurt myself, I’m able to get up without assistance, and I just continue on. The people around me are much more upset than I am.

In fact, until my new PT started talking to me about falling during my first session with her, I had totally forgotten that last year, at New Year’s, I slipped on an icy patch in Dad’s driveway and fell. By moving my muscles and figuring out what hurt, she was able to figure out that it was likely this fall that had damaged my leg and that was causing the muscles to be so irritated now. She gave me some exercises to do at home and said that we’d talk more on my next visit.

The exercises helped, and she assigned some more the next week. But she had some other physiotherapy goals in me.

Surprise! I Need to Learn How to Walk.

She had me do what she called “squat walks” on a bar track walk unit (see picture), so that I could support myself using my right hand. She wanted me to have both legs slightly bent at all times. And she wanted me to walk putting my left foot on the ground heel-to-toe, not trying to bring it out-and-around to avoid catching my toe.

Heel-to-toe is how non-strokies walk, apparently.

She told me later that I had a death grip on the rail during that first walking session, because squat-walks involve putting much more weight on my weak side than I’m used to. Apparently I don’t put much weight on my left side, even after 15 years, because my brain still tells me that my left side is unstable and that I will fall, even though my left side can take much more weight than I believe.

So I can actually walk in a much more of a balanced way. I’ve just never tried to do so, because my brain’s been telling me that I’ll fall (not that I’m conscious of this; I just try something, feel waaaaay too off-balance and stop).

During our next session, she added having me walk backwards, toe-to-heel. *This* was hard. I’d get my heel back and my toe on the ground…and instead of being able to put my heel flat on the group, like my PT instructed, my heel would turn out, away from my body, and I couldn’t get it to turn back. This has gotten easier, but it reminds me of the time in my post-stroke Saturday morning ballet class when I raised my left foot to do the demonstrated barre combination…and it just sat there, raised.  It was like I’d overloaded the neural pathways to the point where even moving wasn’t an option anymore.

My PT and I have talked about how rehab right after a stroke is about getting people minimally functional again. The people at Penetanguishene General Hospital were happy that I got any function back in my weak arm at all. They weren’t disappointed that they couldn’t get my hand to lay flat in the (brief, in the grand scale of things) time that I was there.  I walked out of Ottawa Rehab Centre using a straight cane, and people had done as much balance work with me as they could in the (again, relatively brief) time I was there, but we didn’t work on the finer things that we’ve talked about in this run of physio:

  • How people move their hips when they walk
  • How wide people place their feet when they walk
  • How people do everything involved with walking without looking at their feet to make sure that they’re doing it properly

There’s much more to walking than we think, and my PT said to me, “Babies do it all naturally. But when you’re older, you need to learn it all.”

A Thought About Stroke and Recovery Time Limits

I’ve never really thought, despite what I’ve read over the years, that there’s a concrete time cap on recovering function after a stroke.  My PT has confirmed that the period is much longer than anyone has previously thought, and that’s good to know. I’m fine with myself any way that I am.  But it’s nice to know that 1) My body and brain are capable of more than I thought of and 2) There are things that I can do at home, once this run of physio ends, to keep seeing how far I can get. There are even rails on the walls in my apartment building to use.

And hopefully my leg won’t give me the trouble that it did last winter.

General Notes

Work has been very busy lately so I haven’t been able to be here as much as I’d like. But here are some things that are in the hopper:

A blog on the inquest into Connor “LB” Sparrowhawk’s death.It’s important to me that I do a really good job on this one, so I’m taking my time and trying to think what the best way is to to talk about my feelings on this. But it is forthcoming.

Internalized Ableism Sparked by a discussion with reader Shannon Barnes, I’m trying to put together my thoughts about how damaging it can be when people that society is encouraged to regard as role models when it comes to disability advocacy have ableist attitudes…especially ones that insist on airing these attitudes publicly.

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Canada Needs a Canadians with Disabilities Act

Illustration depicting a road traffic sign with a election concept. Blue sky background. Canadian Disabilities ActThose of you who follow me on Twitter may have noticed that I’ve been filling up your timelines a bit with some blitz activity. Depending on who you follow, you may be getting it in double or triple the amounts. If you’re Canadian, you’ve likely (correctly) figured that it has something to do with the election. Specifically, it has to do with people that would like to see the creation of a Canadians with Disabilities Act.

When I say “election”, I don’t mean the American election. Canada is having a federal election. And, like the American election for the rest of the world, this particular Canadian election campaign has seemed just endless. After all, it’s gone on for nearly three months at this point, instead of the usual 6 weeks.

You heard me right. From start to finish, Canadian election season runs approximately 6 weeks. Usually. This time around, it’s been three months, and the Barrier Free Campaign and disability groups supporting it have taken advantage of the extra time to get a focused message out to the Members of Parliament and the media: It’s time that Canada had a Canadians with Disabilities Act at the federal level.

Canada Has No Canadians with Disabilities Act (CDA)

America is celebrating 25 years of its Americans with Disabilities Act (ADA) – federal legislation that says that it’s illegal to discriminate against disabled people. That’s simplified, of course. It actually:

prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life — to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 — the ADA is an “equal opportunity” law for people with disabilities.

Canada doesn’t have such a law at the federal level. Ontario has a provincial law called the Accessibility for Ontarians with Disabilities Act, and advocates fought hard to get it put it in place. However, the government’s adherence to the act has been…piecemeal, at best, lately. There’s a grand plan to have all public spaces publicly accessible by 2025, with a number of accessibility standards for both physical buildings and for customer service that first the private and then public sector have had to have met by this point. The prospect of financial penalties for organizations or businesses that failed to meet the standards was supposed to keep the public and private sector moving toward meeting the standards and 2025 goal.

But the AODA Alliance has known since 2013 that, despite election promises, the Ontario government hasn’t been enforcing violations of the Act, even though those responsible for enforcing the law know that up to 70% of the private sector is violating the reporting requirement and there is money to put toward inspections and enforcement.

The Alliance tried to address this with the government, but it just became another example of the push-pull interactions typical of Government-AODA Alliance interactions around accessibility:

Alliance: “Here are our concerns.”

Gov’t: “We promise that we will do this.”

Alliance (Later): “What’s the status on this? Here’s a report showing how you might do it, if you need help.”

Gov’t: “We’ll have a timeline for that on you soon.”

Alliance (Later): “It’s been nearly 403 days since you promised that you’d have a timeline on when this is going to be done…”

Gov’t: “We assure you that it’s a priority.”

And time passes and passes…and I walk around Ontario towns and cities silently wondering “I wonder how many of the accessibility standards this business has met? I wonder if the guy who owns this restaurant is even thinking about the 2025 deadline yet, and what the heck he’s going to do about the fact that his bathrooms are down a full flight of stairs?”

What Would A Canadians with Disabilities Act Do?

Good question.

I’m not so sure that making the federal government responsible for making Canada barrier-free would make it happen any more quickly or efficiently, but at least something might potentially happen in the rest of Canada, accessibility-wise, for disabled people. Manitoba is the only other province/territory with legislation that protects disabled people against discrimination. I like the idea of a national Canadians with Disabilities Act that would guarantee that disabled people have full access to airlines and trains in Canada, and to Government of Canada services and website content, and to the ability to vote in a federal election unassisted.

This doesn’t eliminate the need for accessibility planning on the provincial level. That still needs to happen. But this is an important step that Canada needs to take as a country, so that disabled Canadians and non-disabled Canadians have the same rights.

We are all Canadians, after all.

Enter David Lepofsky and The Barrier Free Canada Campaign for a Canadians with Disabilities Act

So David Lepofsky of the AODA Alliance and Barrier Free Canada (one of the most active disability activists in Ontario that I know of) has been on a Twitter-blitzing crusade for the past couple of weeks. He wants Prime Minister Stephen Harper and the Members of Parliament up for election and the media outlets in Canada to know that:

  • A country-wide Canadians with Disability Act is something that has garnered a lot of support among disabled Canadians and their advocates (true)
  • Current Prime Minister Stephen Harper promised us a Canadians with Disabilities Act in 2006 and never followed through with it (true)
  • Disabled Canadians, their needs, and their desire for a Canadians with Disabilities Act are getting almost no media coverage during this election season (true).

And I would add: America made the Americans with Disabilities Act 25 fucking years ago, and the fact that we can’t get our act together to do it is, frankly, embarrassing.

I don’t join in on Twitter-blitzing that often, but for this cause I like the idea of a bunch of MPs and media people looking at their Twitter feeds and going, “Huh. I’m not quite sure who these people are, but this is the third day this week that they’ve jammed up my feed. They sure are persistent.” Maybe they’ll even look into what we have to say.

So if you can live through the Twitter blitz until the 19th, I’d appreciate it. I’d appreciate it even more if you joined in. We need every retweet that we can get.

Canadian friends, send a letter of support for Barrier Free Canada to your local candidates here. And get out and vote on October 19th!

Note: Originally I incorrectly stated that George W. Bush signed the ADA into law. It was actually George Bush Senior. Thanks to Matthew Smith for pointing out my error.

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Robert MacDonald’s Proposed “Name and Shame” Bill for Welfare Recipients is the Republican War on the Poor at its Worst

The ord welfare in front of an American flag - Robert MacDonaldLong-time readers know that I’m not shy about calling out politicians for particular behaviours (repeatedly if it seems appropriate), particularly around election time. I really do only try to do it for politicians displaying examples of particularly egregious attitudes or behavior based on those attitudes: ablism, racism, sexism, classism, etc. Robert MacDonald, Republican Mayor of Lewiston, Maine, wants to submit a bill for the next legislative session that could potentially be all of these, so let’s welcome him to the blog.

Robert MacDonald’s Proposed Bill – The Basics

On September 24, in his regular column in the Twin City Times, Robert McDonald informed readers that “the days of quiet are gone” and that:

We will be submitting a bill to the next legislative session asking that a website be created containing the names, addresses, length of time on assistance and the benefits being collected by every individual on the dole. After all, the public has a right to know how its money is being spent.

The rationale behind this is that there’s already a website in Maine that lists the amounts received by those that get a monthly pension from the state of Maine. Robert McDonald feels that it’s fair that welfare recipients be identified on a website as well.

It’s not about shaming people on welfare, he says. Just letting people know exactly how their tax dollars are supporting what “liberal, progressive legislators and their social-service allies” have made a “victimized, protected class.” Besides, he doesn’t need to “name and shame” people, because people on assistance “flaunt it” when they use food stamps in supermarkets.

I believe that this isn’t about shaming, don’t you? #sarcasm

Why Robert MacDonald’s Bill Should Not Pass

I tried to find the pension website, but I couldn’t. However, while it may display names and amounts (I find it hard to believe that it even displays names, but I wonder what the purpose of the site is otherwise) I guarantee that it doesn’t display address and the length of time receiving pension. That’s illegal, and it’s why Robert MacDonald’s bill wouldn’t have gone through even if he could have found lawmakers to sponsor it (which he couldn’t).

But there are many reasons why it shouldn’t go through besides the fact that it’s trying to put something illegal in place, including:

  • It’s potentially dangerous for those who are trying to escape abuse situations
  • It’s punitive. People in difficulty have a right to access this resource without being shamed about it by the people providing it.
  • It won’t be particularly effective if the overall goal is to reduce spending. Former Senator Ethan Strimling said in his assessment of Maine Governor Paul LePage’s investigation of the assistance programs that in 2014 public sector unemployment and food stamps showed $293 000 in possible fraud, a little over 2%, while the corporate welfare program showed $223 million in possible fraud.

Lewiston’s rate of people using assistance is especially high compared to the rest of Maine. But that’s not really the point. Robert McDonald’s bill is terribly, terribly, insulting, and he needs to be called out on that.

Why Robert MacDonald’s Bill is Insulting

It’s not a nice feeling when you realize that your government’s default reaction to you is to assume that you’re going to be a criminal, or that you already are.

Countrywide there’s a narrative in place that people on welfare just don’t want to work. They just want things handed to them, when what they really need to do is just get a job.

Robert MacDonald would put all Maine welfare recipients’ information up on the internet, assuming that it will shame them into finding work, when a large number of people on welfare are already working. Hard. It’s just that even with a job, they still can’t make ends meet. A 2015 report from Berkeley showed that, largely because of low wages, “nearly three-quarters (73 percent) of enrollees in America’s major public support programs are members of working families.”

Very few people just want to sit around and not work. Suggesting that everyone who receives welfare be lumped into that one group, especially when evidence suggests that it’s very much the minority, simply isn’t fair, and it’s insulting to people who are working very hard and simply need some help.

The ultimately more cost-effective way to get people off welfare is to increase wages, but I doubt that Robert MacDonald would support that, either.

Tell the Republican Party that This is Unacceptable

The insistence that poverty is a choice and indicative of bad character is the Republican war on the poor at its worst. It brings about petty, punitive actions like those of Robert MacDonald’s that largely affect non-privileged groups and that potentially further bring further stigma on individuals and families that are already experiencing it.

For example, if a disabled person getting food stamps interviews for a job, and the interviewer is already wavering about whether they want a disabled person working for them, what happens if they just “happen” to check this website after the interview and see that the person has also been getting food stamps for a significant amount of time? If they hold negative views about people who get food stamps, is the person likely to get the job? No.

All of that discrimination is illegal, of course. But would it happen?

You bet it would.

As I said, fortunately Robert MacDonald’s bill won’t go through. But you can’t legislate away his attitude.

The citizens of Lewiston, however, can vote Robert MacDonald out in November. Let’s hope that this is what happens.


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Terry Fox: How Much Do You Know About This Canadian Hero?

A young man (Terry Fox) with short, curly hair and an artificial right leg runs down a street. He wears shorts and a T-shirt that reads "Marathon of Hope"

“TerryFoxToronto19800712″ by Jeremy Gilbert – Transferred from en.wikipedia. Licensed under Public Domain via Commons – https://commons.wikimedia.org/wiki/File:TerryFoxToronto19800712.JPG#/media/File:TerryFoxToronto19800712.JPG

The annual Terry Fox Run happened this past Sunday, September 20th, across Canada. And as I watched coverage of Toronto’s Terry Fox Run on the news, I wondered just how much people outside Canada actually know about Terry Fox and what he did. I’m sure that, say, American news covered Terry Fox and his Marathon of Hope, which happened in 1980, but that was an entire generation ago. I honestly don’t know if schools outside of Canada teach about this Canadian hero and the impact that he’s had on cancer research. Looking at the Terry Fox Run website, I do see that there were two runs in the United States this year, and some in other countries, but I don’t know how widespread the knowledge of his story is. I thought that it would appropriate to tell it here, especially since he was a disabled man when he decided to do what he did.

Terry Fox and the Marathon of Hope

Terry was born on and brought up on Canada’s west coast. He was 18 when he was diagnosed with bone cancer, and was forced to have his right leg amputated 6 inches above the knee in 1977.

Terry had always been a good athlete, well-known and respected at Simon Fraser University for working very hard on the junior varsity basketball team. After seeing the suffering of other cancer patients in the hospital, he decided to put his athletic training to use, raising money for cancer research.

Terry trained for 18 months for what he would call his Marathon of Hope. On April 20, 1980 he started running in St. John’s, Newfoundland, on Canada’s east coast, with a prosthetic on his right leg. He he was determined to run all the way across Canada, and to raise $22 million dollars – a dollar for each person in Canada. The media caught wind of what he was doing, and the pledges started to come in. All of Canada was behind him.

Unfortunately, cancer appeared in Terry’s lungs and he was forced to quit running outside of Thunder Bay, Ontario, on September 1, 1980. He’d been running for 143 days and had gotten more than halfway across Canada – 3,339 miles. He died in June, 1981.

Terry said:

“Even if I don’t finish, we need others to continue. It’s got to keep going without me.”

And it does. To date,  the annual Terry Fox Runs held across Canada and internationally have raised $650 million for cancer research. Here are some of the initiatives to which the raised money has gone.

Terry Fox: What I Think Of

When I think of the Terry Fox Run, I think of Elizabeth McClung, one of my first blogger friends. Even though she was terminally ill herself with a disease that doctors didn’t understand, she used to do the Terry Fox Run each year. She’d walk as long as she could, and then her wife and friends would push her in her wheelchair. I remember that the last year she did the Terry Fox Run, her health was so bad, I feared that it would kill her.

it didn’t. She knew that there was a risk that it could, and that the exertion on her body would at least put of her out of commission for several days. Perhaps it hastened her death; it’s hard to say. But she felt that it was important to try to walk/wheel as much of Victoria’s 5 km route as she could.

That’s the kind of effect that Terry Fox’s story still has on Canadians.

Regular readers know that I don’t like the word “inspiration”, but it’s easy to tell from hearing people who witnessed the Marathon of Hope describe how it affected them that Canadians really did consider him one. And, 35 years after his death, people still do.

Supporting Terry’s Legacy

The Terry Fox Run is over for this year, but you don’t have to participate in a Terry Fox Run or pledge a runner to support the Terry Fox legacy. The Terry Fox Foundation accepts donations year-round through the Terry Fox Website.

“Some people can’t figure out what I’m doing. It’s not a walk-hop, it’s not a trot, it’s running, or as close as I can get to running, and it’s harder than doing it on two legs. It makes me mad when people call this a walk. If I was walking it wouldn’t be anything. – Terry Fox”

1980 article about Terry Fox and the Marathon of Hope

Excerpts from Terry Fox’s Marathon of Hope Journal

Photos of Terry Fox running the Marathon of Hope


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The Zadroga Act: 9/11, Republicans, and Hypocrisy

New York Fire Department insignia (Zadroga Act)As I’m sure most, if not all, readers are aware, yesterday was the 14th anniversary of the 9/11 terrorist attacks in the United States. But do you know about the Zadroga Act?

I remember where I was when the planes hit the towers. I was living with my father in our family home at the time, not that far into stroke recovery and still trying to visualize what was going to come next in my life. I was in the kitchen, finishing up my breakfast, when I heard the news about the on the radio (always tuned to the Canadian Broadcasting Corporation in our house) about the plane hitting the first tower. I sat in shock for a moment, and then called Dad at his office and asked if he was listening to the radio. Did we know anyone that was supposed to be in New York today, that he knew of?

No, thank goodness.

When I heard the news about the second tower, I remembered the online mental health support community in which I’d been posting for a while. I quickly signed in, and found that there was already an “I’m okay” check-in going on from the New York area, and a call going to out to people who hadn’t checked in yet. By the next day, all of the regular posters in the New York area were accounted for, but some of them had lost friends and family.

In other words, I was not really affected.

I will always be proud of how Canada helped take care of diverted passengers. But I remember being very annoyed at the CBC radio reporter who, during the 6pm news report on September 11, tried to interview a New Yorker who was obviously severely traumatized and likely had no clue no what he was saying.

“Sure, ask him how he’s doing,” I grumbled at the time. “I’m sure he’s fabulous. I’m sure it’s been a *great* day for him. Way to report, CBC.”

And I remember the Jon Stewart segment from 2010 shaming a group of Republicans for filibustering the passage of the Zadroga Act in the Senate because I thought at the time, “Those fucking hypocrites.”

What’s the Zadroga Act?

You wouldn’t know from watching the CBS news last night. They talked about it, but didn’t mention it by name, as if the name of the Act that guarantees health care for the First Responders that develop one or more of the (in society as it’s constructed today) disabling conditions and illnesses including 50 forms of cancer that are linked to working in the toxins at Ground Zero doesn’t need a name. Or as if acknowledging the First Responders are still sick and dying after working at Ground Zero, fourteen years later, isn’t important.

This is a list of what the Zadroga Act covered in 2010: interstitial lung diseases, chronic respiratory disorder, WTC-exacerbated COPD, asthma, reactive airways dysfunction syndrome, chronic cough syndrome, upper airway hyperreactivity, chronic rhinosinusitis, chronic naropharyngitis, chronic laryngitis, GERD, sleep apnea, PTSD, major depressive disorder, panic disorder, generalized anxiety disorder, anxiety disorder NOS, depression NOS, acute stress disorder, dysthymic disorder, substance abuse, adjustment disorder, some musculoskeletal disorders. More conditions have been added (including, as I said, over 50 cancers.)

“Call the Act by it’s name!” I yelled at the TV.

But What’s the Zadroga Act?

The Zadroga Act is named for James Zadroga, a First Responder who died in 2006 of respiratory disease frequently observed in 9/11 First Responders.  It was passed by the House of Representatives in September 2010, and the Democrats hoped to get it through the the Senate before the Christmas Break. However, in December 2010, Senate Republicans filibustered the passage of the Act, trying to get a tax break package through. There was a motion to break the filibuster and proceed, but it failed with just 3 votes short of the 60 needed (breakdown of the vote here, including who voted which way), despite the Zadroga Act having enough support to get through the Senate. The Democrats investigated a number of options, but couldn’t see any way that they could get the Zadroga Act through in the new year, with the Republicans set to take control of the House.

However, in the 11th hour of the 111th Congress, things turned around and the Zadroga Act was passed. The New York Post said:

“Certainly many supporters, including New York’s two senators, as well as Mayor Michael R.Bloomberg, played critical roles in turning around what looked like a hopeless situation after a filibuster by Republican senators on Dec. 10 seemed to derail the bill. But some of those who stand to benefit from the bill have no doubt about what — and who — turned the momentum around.”

Jon Stewart refused to comment, but he will stand again with sick First Responders next week when he protests in Washington for it reauthorization. Because when the Zadroga Bill was passed in 2010, it was only for 5 years, it needs to be reauthorized by the end of the month, and Congress hasn’t looked at it yet.

I couldn’t find the entire 2010 Jon Stewart segment in one piece. Here’s the early part of it, with him very annoyed.

And this is the more serious part, with the First Responders.

Here are the points that I really like:

  • Shame on the Republicans for being happy to be the party that “turned 9/11 into a catchphrase” while ignoring the responsibility that they have to the people who need help because of the work they did to help America deal with the 9/11 aftermath. Don’t talk about how grateful you are to “New York’s Finest” unless you’re prepared to back it up with your actions like providing them health care through legislation like the Zadroga Act.
  • News coverage. There was very little coverage of the struggle to get the Zadroga Act passed last time around, and if Jon Stewart hadn’t stepped in again, I doubt we’d have heard much about it this time around. Granted, I’ve not been watching much news, but that little piece on CBS tonight was the first I’d heard of it without Jon Stewart’s name attached to it.

The day after Stewart’s show in 2010, Fox’s Shepard Smith had this to say (trigger for vivid 9/11 imagery):

I think that pretty much says it all.

Visit Zadroga Claims Info  for more information about the Zadroga Act, and for an easy opportunity to email your Member of Congress expressing your support for extending it indefinitely.

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Ableism, Other -Isms, And Why I Prefer “Seinfeld” to “Friends”

I don’t blog about disability in media very often, but Andrew Pulrang profiled “Seinfeld” on his Disability Thinking podcast recently, and it really made me think. (He’ll be posting a second podcast on “Seinfeld” in the near future; there really is a lot to talk about when it comes to this show. Keep watch disabilitythinking.blogspot.ca for details. Andrew’s first podcast and “Seinfeld” and disability is here.)

I love “Seinfeld”. I’ve seen every episode several times, and will still watch the reruns and find them funny. My family can have entire conversations in snippets of “Seinfeld” dialogue, which I realize isn’t necessarily something of which to be proud, but there it is.

I’ve managed to retain this level of fandom despite being achingly aware that over its run “Seinfeld” had moments of blatant racism, sexism, ableism, ageism, classism, and probably just about every other “-ism” that you can think of, including just plain bad taste. Apparently I’m not the only one that noticed – Sola Agustsson recently wrote an article for Alternet.com about sexism and racism in “Seinfeld”, “10 ‘Seinfeld’ Episodes That Might Be Considered Sexist and Racist Today”.

But she also got taken down in comments on her article for not understanding the thing that lets me (mostly) gloss over the glaring prejudices of the four main “Seinfeld” characters: The whole point of the show was that Jerry, Elaine, George, and Kramer are supposed to be terrible people. They’re shallow and self-absorbed, they use people with little guilt and almost zero empathy, and they rarely do anything unless there’s something in it for them.

They wanted to be nicer people – but only because of how their real orientation to the world made them look to others, and not out of any real concern for those around them. This is what made the show subversive, ironic, and frankly, hilarious, because the harder the four main characters tried to do “the right thing”, the more apparent it became that they were really just awful people who didn’t care at all.

Disabled People in “Seinfeld”

Take one of the episodes that Andrew rightfully says got the most attention and is about disability. Jerry, also a comedian in the show, promises a fan that he’ll go see his son, a “bubble boy” that has to live behind a plastic partition in his parents’ home because of his poor immune system.

(We learn later that everyone but his mother, including the people in his town, call him “The Bubble Boy”, which is a disability issue all by itself, but not one that we can blame on the four main characters. We don’t even learn his name until well after George and his fiancee Susan meet him. It’s an indictment of how society treats him. )

George and Susan arrive at the house first and find not a bubble “boy”, but a fully grown, very rude bubble “man” who eventually asks Susan to take off her top (the opposite of the “disabled people are sweet and polite” stereotype that we see so much in the media; Andrew discusses this in his podcast.)  Suppressing the urge to respond negatively to the Bubble Boy’s rudeness (which would be “politically incorrect”), George and Susan allow themselves to be talked into a game of Trivial Pursuit. When George and the “Bubble Boy” disagree over the pronunciation of an answer, George finally loses control, the “Bubble Boy” starts to strangle George and George loses control, stabbing at the plastic partition and deflating the “bubble”. His desire to be politically correct has been overcome by his temper, which often happens with George.

“Seinfeld” did a good job of highlighting society’s ableism as well as the main characters’. That’s difficult to do. It requires very good writing.

Now, I don’t know about the writing process for “Seinfeld”, but it seemed that each week the writers came up with a character (sometimes two), said “What if we took a person out there with this set of characteristics and put them in the group’s path”, and that was pretty much that character’s role. Mostly they were romantic interests, like Elaine’s elderly boyfriend, a stroke survivor who required a lot of care. One week it was the Bubble Boy. There were a few characters that had brief story arcs, like the man stalking Elaine and Jerry (who the writers imply has a mental health diagnosis, but never say what it is.)

Are Disabled People Props in Seinfeld?

Andrew also discusses in his podcast the idea that you could accuse the writers of making disabled characters props, in “Seinfeld”. However, with the exception of a small group of secondary characters that had a bit of backstory, everyone in “Seinfeld” besides the main four characters were props. They mostly got burned somehow by being involved with Seinfeld and his group, presumably never to appear again, and the underlying message at the end of each episode was, right up to the group’s one-year imprisonment at the series end for not helping someone who was being mugged, “Don’t treat people like this group does. They’re assholes.”

Unlike other sitcoms in the 90s and after.

Are the Characters in “Friends” and “How I Met Your Mother?” actually Likeable?

I enjoyed “Friends” in the 90s, and I found it amusing when I rewatched it on Netflix. However, I noticed the second time around that this group that was supposed to be so close also:

  • Spent a lot of time picking on each other. To the point where it often seemed mean.
  • Were very competitive, and sometimes threw each other under the bus.
  • Couldn’t be happy for each other if a positive change for one meant change for the group.
  • Watched the womanizer of the group treat his dates like crap and never called him on it.
  • Sometimes deliberately behaved in ways that negatively affected another friend’s career.

These people were assholes, but we were supposed to love them. And they set the mold for another “Friends”-types show that debuted in 2005, with a similarly dysfunctional peer group that we’re supposed to love.

“How I Met Your Mother” had the same pattern of young people living and dating in New York, hanging out in a bar instead of a coffee shop, but ramped up the sexism to the nth degree compared to “Friends” (and “Seinfeld”, for that matter).  Neil Patrick Harris as Barney Stinson makes “Friends'” Joey Tribiani look like a lightweight womanizer. Barney sometimes gets called on the womanizing, but more often than not friend Ted is his wingman. At one point, “HIMYM” manages to work approval of Barney’s womanizing and slut-shaming of one of the female members into the same show.

A peripheral character, a therapist that one of the main characters dates at one point, says about the 5 main characters: “‘You’re all the most codependent, incestuous, controlling group people I’ve ever met!” There was an almost identical scene in friends where a therapist that Phoebe is dating offers about the main characters: “Actually it’s, it’s quite, y’know, typical behaviour when you have this kind of dysfunctional group dynamic. Y’know, this kind of co-dependant, emotionally stunted, sitting in your stupid coffee house with your stupid big cups which, I’m sorry, might as well have nipples on them, and you’re like all ‘Oh, define me! Define me! Love me, I need love!.”

CBS was widely criticized for a racist episode of “How I Met Your Mother”, and on my rewatching of that series I saw some references that I was surprised got by the network (Mexican Wrestler Ted, for example).  There are no disabled characters in the show. At least in “Friends” Chandler dates a disabled woman for an episode. She dumps him, and (surprisingly) comes out looking like the decidedly shallower of the two.

The point is that at least “Seinfeld” was honest. It didn’t try to be anything but what it was – stories about terrible people that wanted to nice, but didn’t really want to give anything up to do it.  So they’d do the “politically correct” thing, inadvertently out themselves as being anti-social and barely able to cope with the friendship between the four of them, and we’d all tune in next week to see in what new way they could ruin someone’s life. The thing is, “Friends” and “HIMYM” (and there may be others that I just haven’t seen) weren’t any different – more peripheral characters with story arcs, maybe, but ultimately? Stories about terrible people…more actively masquerading as nice people.

However, they sure were branded to be people that you should trust and love and emulate.

That feels dishonest to me.

And I’m not going to feel guilty about watching “Seinfeld” until people start talking more realistically about that.

More reasons why you wouldn’t want to be friends with the “Friends”

Keep watch disabilitythinking.blogspot.ca for details on Andrew’s second podcast on “Seinfeld” and disability, and listen to the first one here.

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Ellen Degeneres and “Idiotest”

Funny man in blue bow tie holding a plate with title 'idiot'So I was cleaning yesterday and had my television set to “Ellen”.

I don’t watch “Ellen” very often. It’s not that I don’t like Ellen Degeneres. I actually find her quite funny. There’s just usually something on that I want to watch more when her show’s airing in my area and I happen to be watching TV, and I don’t have a…DVR…?

But yesterday I was distracted by cleaning and the show that was on at 3pm switched over to “Ellen” and I didn’t bother to change it, so there you go. But the show, a repeat from April, got my attention very quickly when Ellen started talking about how they were going to play their own version of “Idiotest” (a game show of which I’d never heard, on the Game Show Network) with the audience.


I don’t like the word “idiot”. It’s got an ableist history as sordid as “retard”. I try not to use it since I learned about how ableist it is, but when I do let it slip, you can bet that I’m very angry. Eliminating it from my vocabulary was difficult, because it’s very much a part of society’s vernacular, and I’d grown up using it (unlike “retard”, which was never allowed in my house). And most people don’t know that it’s ableist, so I cut them some slack when I hear it.

However, the fact that there’s a game called “Idiotest” (on prime-time and on “Ellen”) makes me feel a uncomfortable, particularly when Ellen said in her video that she was playing the game with the audience to “assure the world that there are no idiots in my audience”.  Obviously the research department hadn’t unearthed that “idiot” was originally a derogatory term for intellectually challenged people. People aren’t using it with that intent now, obviously, but even if it wasn’t her intent to send the message that intellectually challenged people weren’t welcome in her audience (and I don’t think that was the message), there was a subtle, albeit joking, message that people with low intelligence aren’t.

Calling People Idiots Just Isn’t Funny

The problem is that the joke isn’t really funny, and it becomes less funny when you know the history of the word “idiot”. There’s currently enough in the definitions of “idiot” on the first page of Google that any good researcher should have thought, “Uh oh, better look at this before we create a game around it.”

Ellen’s idea of “Idiotest” involved bringing people (presumably pre-selected) up from the audience and asking them a brain-teaser. The people who got them wrong (4 of 5) got called idiots and were made to sit on the stage wearing dunce caps.  Here’s the video:

They each got a great trip as a prize, but that’s not really the point. The whole “Idiotest” business hearkens back to a particularly ugly time in the school system that really doesn’t need revisiting. Children were asked questions through which they perhaps legitimately couldn’t think because of undiagnosed cognitive difficulties and learning disorders, and when they couldn’t get the answers they were shamed in front of the whole class and made to sit in the corner wearing dunce caps.

Seeing someone try to make that experience into something fun and funny made me feel profoundly uncomfortable.

I expected a bit more sensitivity from Ellen Degeneres.

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Disabled Parking Permits and the Dangers of Assumptions

Disabled parking tag with note that says "Faker" attached to itThis post is going to be preaching to the choir for most of the people who read this blog. Maybe you can pass the link along to someone who insists on making assumptions about people who park a vehicle with the disabled parking permit visible in the window, in a disabled parking spot.

My thoughts on this are spurred by a post that I shared on the Facebook page, by a woman with who parked in a disabled parking spot, using the disabled parking permit that had been issued to her, and came back to find a note attached to it that said “FAKER”.

A Brief Lesson About Disabled Parking Permits

In case anyone’s unclear on this, let’s go through when you can’t park in a disabled parking spot (Ontario Regulations):

When you don’t have a disabled parking permit displayed, and you’re going to be in the store for “just 5 minutes”

When you do have a permit displayed, and you’re going to be in the store for any amount of time and the person to whom the disabled parking permit was issued is not in the car.

When you do have a disabled parking permit, you’re going to be in the store for any amount of time, the person to whom the disabled parking permit was issued *is* in the car, but won’t be going into the store. If the disabled person is just going to sit in the car in the disabled parking spot, they’re taking up the spot and pushing out a disabled person that might actually intend to go into the store. It’s a misuse of the permit.

Here’s when you can park in a disabled parking spot: You are the disabled person to whom the permit was issued, or the person to whom the permit was issued is in the vehicle, and will be going into the store.

The Disabled Parking Permit and Assumptions

Abuse of the disabled parking permit is definitely annoying. When I see a car parked in a disabled parking spot, I check to see if there’s a permit displayed on the dashboard. But what’s even more annoying is when people:

  1. Make the assumption that a person who doesn’t “look disabled” enough to have a disabled parking permit assume that a person isn’t entitled to it and must be scamming the system.
  2. Take it upon themselves to police people who they assume aren’t “disabled” enough to have a disabled parking permit.

I don’t think that the average person understands that for many, many disabled people, a day where they walk around town doing errands or having lunch and an afternoon out with friends means three or four days of recovery where they have to use a wheelchair. Even after a decade of being able to walk without a cane inside, and even outside for short distances depending on the season and weather, a day of walking without my cane at the Toronto Zoo left me so exhausted that I was stunned.

It’d be easy to assume, catching a disabled person after a few days of rest and recovery, that perhaps the disabled permit on the dashboard isn’t necessary. Someone might assume that the person gets around that easily all the time, and become suspicious: How is that person disabled? Did he or she scam the system? The trouble with that assumption is that it doesn’t take into account that perhaps that person is so exhausted and in so much pain that the parking permit is vital.

The other trouble with that assumption is the second one that often flows from it, that having identified disability parking permit “fraud”, it’s okay for citizens to deal with it themselves.

Disabled Parking Permit “Fraud”: Citizens Policing Citizens

I don’t understand is how it’s anyone’s business, outside of the office that issues the disabled parking permit, whether a person is “deserving” of a permit or not. The assumption that I’d rather make is that the permit is on the car, someone thought they should have it, whether it looks to me at the moment like they should or not –

And it’s not my job to police people!

It’s not Joe Public’s job, either. It’s none of his business. And I’d really like to know where people got the idea that it was. The idea that disabled people should be required to prove to just anyone on the street on  demand whether they’re “disabled enough” to receive a service is particularly insidious ableism, and a real measuring stick of how far we *haven’t* come. When your typical person on the street still feels entitled to that sort of power over disabled people, that’s a real concern.

I remember writing something like that before, so I went back over my posts for the past year. I found what I was looking for in a post about Kanye West. He refused to continue singing unless everyone was standing up at a concert, and when some people in wheelchairs didn’t stand up (because they couldn’t) he sent staff to make sure that they couldn’t. I wrote:

“There are very few people to whom I have to prove that I’m disabled. They are service providers that need proof of disability so that I can start/keep receiving some sort of service. I’m not crazy about this, but it’s part of life, it’s fairly infrequent, and I deal with it. I do not have to prove that I’m disabled to a person on the street, another disabled person, or anyone else that I don’t want to.”

You don’t have to either. Spread the word.

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Person-First Language: A Closer Look

Disabled (handicapped) person on wheeled chair among people without disabilities.The other day, I read Emily Ladau’s piece on why she uses identity-first language instead of person-first language, and I really liked it. She provided a great analysis of how person-first language became the *only* correct terminology to use for a while, and clearly explained why it’s because very important for many disabled people to self-identify using identity-first and not person-first language.

Including me.

I used person-first language for over two decades, up to and after my stroke. I was trained to use it. I explained to others why it was the most respectful language to use. I wrote probably the first 1.5 years of posts in this blog using person-first language.

It took reading a post by autism advocate Lydia Brown and couple of hours reading some perspectives on people-first vs identity-first language to prompt me to rethink my stance. And now I do prefer to use identity-first language for myself and in my writing. I only use person-first language it when I’m talking to/about someone who has stated a preference for it.

But when I shared Emily’s article on the GirlWithTheCane Facebook page, I included a bit of commentary about a discussion I had with someone after I wrote my first blog post about person-first language vs identity-first:

“I’ve blogged about this subject too, and had someone point out to me though that, as much as person-first is falling out of favour today, we should acknowledge that it was revolutionary when people started using it.”

Person-First Language Was a Game-Changer

There’s a historical context to person-first language that I think we sometimes forget.  It’s not as if, as disability activist and blogger Andrew Pulrang pointed out on the Facebook page, that person-first language is “some tool of oppression cooked up by non-disabled people.” It wasn’t so long ago that it would have seemed silly to call a disabled person a “person with a disability” because disabled people weren’t considered people.  For people to start saying, for example, “He is a person with Down Syndrome” instead of “He’s Down’s” would have been nothing short of a paradigm shift.

It’s worth noting that some groups (like the Deaf community) didn’t like person-first language from the outset and that, as Emily noted, other communities have become disillusioned with it, such as the autistic community. I understand that. As disabled people, we should always be open to moving away from what no longer works, because there are still so many barriers to true equality to be torn down, and some of it is really life and death.

But I think that we need to appreciate the historical context of the things from which we’re moving away, including person-first language.

How Much Does Person-First Language vs Identity First Language Matter in the Long Run?

We’ve rightfully discarded so much of what’s been historically considered “right” and “appropriate” for disabled people because it was neither. Institutional care for intellectually disabled people, for example, has historically been abusive and in violation of even basic human rights.

Person-first language was a response to a culture where disabled people weren’t seen (or treated) as human. It was intended to do good and actually did. It wasn’t a wrong that needed to be abandoned, and still hasn’t become one. While it’s being used less and less, many disabled people still prefer to self-identify using person-first language. Does it hurt disabled identity-first language defenders that that there are disabled people out there that use person-first language, and vice versa, as long as we respect each others’ preferences?   In my opinion, it doesn’t, and no one should be made to feel uncomfortable or wrong for wanting to use one over the other.

There are still such major battles to be fought, and so much debate about this. Has it become divisive when more division is the last thing we need?

Which is not to say that Emily didn’t write a great article.  I’ve been wanting to write about this for a long time, and her article just got me moving.

In Other News…

I’ve written a short Kindle book about the inpatient stroke rehabilitation experience, and plan to write some more about post-stroke life. Right now I’m trying to keep them very practical, but I want to explore some ideas about disability rights issues later in the series. Visit the website for updates: strokeguides.com.


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