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

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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Jim Carrey Tweets Picture of Autistic Youth Without Permission During Anti-Vaccination Rant

cartoon of  nurse giving a child a vaccinationCanadians, who tend to be at least supportive of Canadian actors just because they’re Canadian, have always been a bit divided about Jim Carrey. He’s one of those “love him or hate him” actors. I’ve enjoyed a few of his films. I’ve not enjoyed more of them. A few of them I haven’t bother to see, I’m that convinced that I’d hate them.

I don’t usually let an entertainment figure’s stance on an issue dictate whether I’ll see one of their films, with some exceptions. I had some serious issues with “The Passion of the Christ” and some of Mel Gibson’s public remarks, and now tend to avoid his work. I avoid some comedians because they use the R-word.

I knew that Jim Carrey’s stance on vaccinations being toxic is quite strong, but I don’t stop talking to people because they hold those views.  I didn’t see any need to boycott his films on that basis. And I still don’t.

But last week he took some the steps to get his anti-thimerosal/anti-mercury message out (Carrey insists that he’s not anti-vaccination, but against the addition of these substances in vaccinations) that crossed a line for me, and those steps have put me at “boycott” point.

Jim Carrey Uses Alex Echols’ Picture in Rant About California Vaccination Law

Upset by the law officially put into place in California last Tuesday that children must be vaccinated in order to attend school, Carey went on a 30-tweet rant about the chemicals in vaccinations, calling California governor Gerry Brown a “corporate facist” and using images of children in distress, implying that the thermosil in their vaccinations had caused the autism.

According to Salon, two pictures of crying boys that were tweeted were stock photos. But the third was of 14-year-old Alex Echols, and was definitely used without permission. Alex’s mother, Karen Echols was very upset, and tweeted to Jim:

“Please remove this photo of my son. You do not have permission to use his image.”

She explained later in an Instagram posting that Alex’s autism is caused by tuberous sclerosis and that he was showing signs of being autistic before he was vaccinated.

Jim Carrey removed the photo and apologized:

“I’d like to apologize to the Echols family and others for posting a pic of their kids w/o permission.I didn’t mean to cause them distress.”

I love a good non-apology.

Dehumanizing Autistic People

Cara (no last name given) nailed why Jim Carrey’s action were inappropriate in her blog post, An Open Letter to Jim Carrey. She talks about how Jim Carrey used pictures of children in distress, one that we can confirm is autistic, hoping that they’d scare people into seeing his point of view, and his hopes that people would say, “Oh my goodness, we don’t want our children to turn out like *that*, we’d better not vaccinate!” She talks about how static pictures are inherently dehumanizing, and how autistic people as a group don’t need anything more that dehumanizes them – in the last five years, 80 autistic children and adults have been dehumanized by their parents and caregivers to the point where they’ve been murdered.

Kudos, Cara, for beautifully expressing why Jim Carrey’s actions were so wrong.

Cara touches on the other form of dehumanization that went on.

Shame on You, Jim Carrey

The picture of Alex Echols that Jim Carrey used has been used in a couple of media pieces. Is it fair use? I’m not sure. I wouldn’t use it without permission for a number of reasons, the least of them being that I figure that it’s been posted in enough places by now that Alex doesn’t ever need to come across it in another. But even if it is fair use, Jim Carrey did not use it fairly. He co-opted it for his own cause, with no concern for whether Alex and his family would be okay with that, and in his apology he didn’t say that he was wrong. That he can claim to be so passionately concerned for child safety but exploit a disabled child in that way makes me angry, and very concerned that he didn’t have that insight into why what he did was wrong until someone called him on it.

It was another level of dehumanization: “I’m just going to pick you up and drop you in my cause and I don’t care what you think about it.” Shame on you, Jim Carrey.

Yes, shame on Jim Carrey, because he didn’t have to go further than Facebook to see that Alex is a growing, learning, person, deeply loved by his family and support staff.  Because they’re better people than I am, the Echols family is grateful for the awareness that this incident with Jim Carrey has brought to tuberous sclerosis and to the challenges that Alex faces every day.

And he could only manage a non-apology on Twitter.

You can learn more about Alex and his family here and here.

More About Tuberous Sclerosis and Autism



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Happy Canada Day…and Yay for the SCOTUS Ruling on the Affordable Care Act!

Depositphotos_11322456_xsThis is my fourth Canada Day post. But I’m posting a bit early because I meant to write a post over the weekend congratulating America on the Supreme Court of the United of the United States ruling on the Affordable Care Act last week, and haven’t got to it yet…and I figured that the two posts would fit well together, because all of my Canada Day posts have been about how Canada’s universal health care system is one of the reasons that I’m most proud to be Canadian.

Long-time readers will know that I’ve been a clear supporter of the Affordable Care Act from the outset. I feel quite strongly that everyone should have access to good health care regardless of their ability to pay for it. Which is why I love the liberal judges on SCOTUS so much for squeaking this ruling through, because now it’s. Not. Going. Anywhere.

From CNN:

“The ruling holds that the Affordable Care Act authorized federal tax credits for eligible Americans living not only in states with their own exchanges but also in the 34 states with federal marketplaces. It staved off a major political showdown and a mad scramble in states that would have needed to act to prevent millions from losing health care coverage.”

I realize that Canada’s system of universal health care looks less like what’s in place under the Affordable Care Act than it does the single payer system with which America toyed, but I think that any health care system with a mandate that as many people as possible should have access to medical care is one in which people can take pride.

Laws like the Affordable Care Act and Canadian Medicare move quality, high-cost medical treatment from the realm of the very privileged to that of people who can’t afford good insurance and certainly can’t afford to pay medical costs out of pocket.

Heck, I could barely have afforded the first ambulance ride to the first ER visit, let alone the ER visit itself, if I’d lived in a country without universal health care. Even with my family helping as much as they could, how could I have afforded the 14-hour brain surgery with one of the best AVM surgeons in North America, let alone the rehabilitation that came afterward?

Because I live in Canada, cost to me (and ultimately to my family, as I had next to no money when I discovered that I’d need brain surgery) wasn’t a factor in my decision to have my AVM treated, or in determining how long I could stay in inpatient rehabilitation after my stroke, or in deciding what kind of follow-up treatment was appropriate and when. That’s a tremendous gift to people who are facing a health crisis, and to their families, who already have so many things to worry about (and, for families who live in rural Canada, may already have to incur substantial costs associated with travel/lodging/food while dealing with loss of income). I’m proud that I live in country where people feel that providing this sort of care to citizens should be a priority, and proud to be neighbour to a country that is moving in the same direction. High five, America, and  Happy Canada Day to all!

Oh, there was another very important SCOTUS ruling last week definitely needs a mention. I was online when word came out that SCOTUS had made gay marriage just “marriage” in all 50 states, meaning that now people can marry who they like (there are still some restrictions on disabled people, but I’ll get into that another day), and the rainbows went over social media in a wave. It was really something to see.

Again, congratulations, America!

I’m proud to say that Canada has been doing this for 10 years.

You’ll love it! :)








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Happy Fourth Blogiversary to Me!

So wow! I’ve been doing this for four years. That’s one of the longer commitments I’ve made since the stroke. And considering that I really only started this blog to keep me busy during a particularly long period of unemployment…well, I’m going to celebrate hanging around for this long.

4thEspecially since I could have blogged about a lot of things, and I chose to blog about disability…I think that’s significant. There were things that I needed to say. I’d written about disability before, in a (now out-of-print) book of personal essays, and what was in the book was what I needed to say about stroke and disability and recovery at that point, about six years after my surgery and stroke. But at that point, although my volunteer and professional experience in the disability sector had made me very capable of speaking about discrimination against disabled people, I didn’t know that this discrimination was called ableism, and just how insidious it could be. I could tell you that being called “inspirational” made me uncomfortable, and why, but I couldn’t talk to you about inspiration porn. I could talk about how environments disable people when they’re not accessible, but I couldn’t talk about the differences between the medical and social models of disability.

And I knew only the very basics about autism.

And the government considers me “trained” – I have a Developmental Services Worker diploma, which is the certification that government prefers that front-line workers possess in order to work with intellectually disabled people.

It’s been through the research that I’ve done for blogging here, the conversations with other disabled people, their families, and their caregivers with whom I’ve developed (mostly online, but in some cases quite close) relationships, that I’ve learned that, even after 20 years combined years of volunteer and professional experience of working with people with disabilities, that I had a world to learn…and took my first steps toward becoming more aware of how much appalling/icky/brutal/infuriating/insidious/none of the above (insert your favourite adjective)/all of the above ableism there is the world, and of the ways ableism was present in my thoughts and words.

It’s been quite a ride, and I thank all of you for reading what I’ve writing, for educating me, and for passing on my work. Onward into Year 5!


I didn’t write a Stroke State of the Union Post on the anniversary of my surgery this year (May 29). I tried – a couple of times. But I couldn’t get it to stop reading like a list of “Here’s what I can do now and what’s still an issue.” I know that people kind of like to hear that, but it’s not really what I wanted to focus on this year, the 15th anniversary of my stroke. I couldn’t figure out really what I wanted to focus on. Maybe…just the couple of important things that I’ve learned this year.

I’ve talked before about how I have trouble asking for help when I need it, for the things that I really do need help with. I’ve spent a lot of therapy time on that, actually. This year, even though it was difficult, I asked for help…sometimes with small things, some bigger things, and once for something that was ongoing and quite significant.

And, shock of shocks, the world didn’t end!

People seemed happy to help, and I really tried hard to believe that 1) They would tell me if they didn’t want to help and 2) That it’s okay, really okay, to admit that I can’t do everything, that I’m worthy of help when I need it, and that it’s okay to ask.

Obviously there are some issues here, and I’ve been trying very hard to work on them. I’m not sure where they come from – perhaps that awareness will come later.

I’ve learned about this year about chronic pain and its effect on a person. Some people experience severe pain after a stroke. I did not. I’ve never experienced any sort of chronic pain. But this year, after New Year’s, my left thigh started to hurt.

I didn’t think anything of it for quite a while. My niece and I had spent a lot of her New Year’s visit playing…playing with Gillian always ends up including “Hide and Seek” and building forts out of couch cushions and a lot of her jumping on me, and I love every minute of it, and there was plenty of opportunity to bruise my leg somehow. I was also falling asleep far too much on my couch over the holidays, watching Netflix on my new TV, and I was convinced for a long time that my leg was sore because I’d just “slept on it wrong.”

But in February, when I was still having pain in my thigh getting up from a seated position, and walking when I tired, I visited the doctor. X-rays showed nothing, and in March, with the pain getting worse and worse, I was referred for an MRI.

In Canada you can wait a while for imaging if you’re not an emergency case. In April and May I frequently could barely walk, and then the pain let up a bit for the nicer weather in June. By the time I had the MRI done a couple of days ago, the pain had faded, and is now fairly easy to live with.

But it’s given me a whole dimension to the empathy I’d previously felt for people who are living with any sort of chronic pain. It’s difficult to get motivated to do anything when pain makes it difficult to walk. I generally do a lot of walking at this time of year, but that’s been difficult. Not knowing what’s going on has been more stressful than I thought it would be. And this is localized pain, very mild most days compared to what a lot of people live with. It’s been an eye-opener, thinking about how other people must cope with much worse…and so gracefully. I don’t know how they do it.

These are some of the thoughts that have gone through my head this year.

I am finding it difficult to wrap my head around the fact that it’s been 15 years since I had my stroke, and don’t know what to write beyond that. More on this later, likely.

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