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Archive | June, 2015

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 Blogaversary 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!

Also…

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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Deliciously Disabled – Accessible Sex Party Planned for Toronto in August!

the word "sex" in uppercase green-blue letters on a pink backgroundAnalyticsI live not-so-far from Toronto and visit there fairly frequently, so I know that it’s not on the cutting edge of accessibility. Only 34 of the city’s 69 subway stations are accessible, for Pete’s sake (but all the subway trains are accessible, so that’s something, I guess). So good on you, Toronto, for hosting Deliciously Disabled, a sex party that’s completely accessible.

Well, not that it’s a city event. More like it’s just being held in the city. But significant nonetheless.

Deliciously Disabled is a private event being organized by disabled activist and academic Stella Palikarova and Andrew Morrison-Gurza, disability activist and consultant. The event will be taking place at the Buddies in Bad Times Theatre, which is fully wheelchair accessible, on August 14.

Deliciously Disabled – What I Like

The thing that I really like about Deliciously Disabled is that it’s not just for disabled people, and that the organizers are really trying hard to get that message across. I’ve been to events for disabled people supported by specific agencies that were also supposed to be open to the general community, but really did end up being segregated events – the way it seemed to work was that community members wouldn’t be turned away at the door, but it wasn’t an issue anyway, because they didn’t know that they could come.  I love that there are actually 40 reserved spots for non-disabled to come and enjoy a sexy evening (which isn’t just sex, this article says – there’s a place for sex and nudity, but “guests can also don masks, watch a burlesque performance, or attend a toy workshop.”)

I also think that it’s just a great idea in general.  Sexuality can be a bit more complicated for disabled people – potential partners can’t always handle talking about barriers, or their concerns that they’re going to hurt the person, or any questions that they may have. This seems like a great, inclusive opportunity for disabled people (and their partners, for those that have them) to explore sex and sexuality in a barrier-free environment. There are 25 spots reserved for wheelchairs., and a call has gone out to support workers to volunteer to provide assistance to those who need it.

Deliciously Disabled – What I Don’t Like

Actually, there’s nothing about the event itself that I dislike. What’s frustrating me is the icky ableism that the media coverage of Deliciously Disabled is bringing out in Jon Q. Public, and in some of the media coverage itself – the Toronto Sun in particular. I don’t know why I’d expect anything else from the Toronto Sun, but Mike Strobel’s article on Deliciously Disabled was…problematic.

First, it was inaccurate. This isn’t the first time Toronto has tried something like this – in 2007, organizers tried to get something similar, Acexxxable, off the ground, but it seems, from the limited information that I could find on it, that it had too much trouble finding an affordable accessible space. Second, Deliciously Disabled is not an orgy. It’d be nice if a national newspaper took this seriously enough to get its facts straight.

Second, while not outright mocking, Mike Strobel’s piece definitely edges on it.  This bothers me because…this stuff isn’t a joke. I like that there’s a really celebratory tone about Deliciously Disabled, but there are some serious issues prompting it, and a journalist skirting the edge of mocking it isn’t appropriate – it invites others to mock it, as we see in the comments:

“It must be a hell of a sight – someone with cerebral palsy having an orgasm! Hilarious!”

“Oh my, who will change the diapers?”

and this bit of “hilarity”:

Q: What is the most difficult thing about eating a vegetable?
A: Getting her back into the wheelchair after.

Granted, there’s a hearty of mix of comments from these very ignorant people and from pearl-clutchers who may be responding more to the word “orgy” than to the idea of disabled people participating in one. It’s difficult to say. However (and I acknowledge that this may be just me) I find the mocking more offensive than pronouncements that Deliciously Disabled is “disgusting” and an example of the world’s “depravity”, or just a step away from a “pedophile sex party” hosted by a “lady so sick she needs her head examined”. I can shrug that shit off, quite frankly, because it’s so profoundly ignorant. But mocking implies that a person know better and yet still making a choice to be ignorant, and that’s harder for me to take. Especially from a journalist.

And as for me…I really need to stop reading comments on articles, because between this, and all the Caityln Jenner hate (great article on that here, btw) and Duggar support last week, I’m worn out.

However, the poll on the same Sun article did say that people who responded were overwhelmingly in support of Deliciously Disabled. I don’t know if that means “Good on them, as long as I’m not involved” or “Good on them, I’d love to join in” or “I’m checking this because there isn’t a ‘I don’t care’ box”, but maybe it means that the negative comments are just coming from a small fringe of people who really are opposed and/or ignorant. It’s just unfortunate that sometimes those small fringe groups can scream really loud (look at the birther movement around Obama.)

Deliciously Disabled – How Can You Help?

Talk to people about events like Deliciously Disabled and why there’s no reason to be threatened by them.

Talk about the myths surrounding disabled people and sexuality. Let people know that the information that society gives them about disabled people and sex and the assumptions that people tend to make based on those assumptions (like, “Disabled people don’t like to have sex”) generally aren’t true.

Parents with disabled children in the school system, ask teachers what kind of sex education your child has already received and can expect to receive and why it’s differing from what non-disabled children are receiving (if this is the case). Disabled children, like all children, need sex education that teaches about boundaries, self-esteem, and safety, as well as the biology.

Make sure (whether it comes from school, medical staff, and agency, or you) that your child’s transition plan for high school to adulthood includes the education on relationships, sexuality, and sexual safety that they’re going to need to safely explore this part of life that most adults need to make them feel whole.

As Stella Palikarova said, “This is really going to take the co-operation of everyone in society,”

So, what are you doing on August 14?

 

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