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Archive | October, 2015

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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