Monday, 31 October 2011

My Brain AVM Story: Left Side Neglect

Left side neglect is more common than right side neglect
I’m very lucky that, even though I still have some deficits on my left side I still have a relatively high degree of sensation on my left side. I still do have some left side neglect, however.

Left Side Neglect

When I was in early recovery stages, it was much worse. Apparently this generally stems from visual field impairment on the left side, which tests showed wasn't really a problem for me.  But I *did* have a reduced sense of sensation on my left side at the time, and also had trouble telling where my left arm and leg was without looking at them, so I also I just didn’t account for my left side in my movements and activities. At worse, this meant half-walking into a door or winging my arm off a piece of furniture. More commonly, it meant walking around with my t-shirt half-hiked up my left side, until someone reminded me that I’d forgotten to pull it down over my jeans when I got dressed. It just wouldn’t occur to me to check to see if I was fully put-together on my left side before leaving my room.

Today I remember to check my shirt, and I don’t walk into door posts or furniture. However, my stroke left me with a slight slope to my left shoulder that has me constantly checking my left side. My bra strap slips off my left shoulder sometimes, and I don’t always catch it until it occurs to me to (subtly, I hope) feel my shoulder and see if it’s still there (and less subtly wrench it back onto my shoulder if it’s not). When I haven’t done up my jacket or cardigan (and I hate doing up buttons or zippers with one hand, so my jackets and cardigans are usually open) the left sleeve creeps from my shoulder down my arm as I walk, sometimes bunching at my elbow before I look over and realize what’s happening. Left side neglect.

<h3>Stoke-Brain Quirks</h3>

So, even with the high amount of function return that I have, lots of sensation on my left side, and no visual field impairment,  my brain still has its little stroke-brain quirks. All things considered, though, I can live with dealing with a bit of left side neglect. I can even deal with being teased about it – apparently my niece Gillian’s shirts sometimes slip off her shoulder a bit and my sister and her husband laugh at her “left side neglect”.

If left side neglect puts me in company with my adorable little niece, I’ll take it.

More on left side neglect:

Halloween Dance: Musings About Segregated Events

On Thursday I volunteered to accompany a group of people with intellectual disabilities to a Halloween dance in another town.

Segregated Events...*sigh

I’m not 100% sure whether this dance was marketed only to people with intellectual and/or physical disabilities and their support workers or whether the dance was open to the community at large.  There didn't appear to be any people from the community at large at this dance, and I know from volunteering at  these sorts of dances in the past that the people who come do tend to be almost exclusively people with disabilities that are supported by agencies, and volunteers and/or staff who agree to attend as support. In other words, they're segregated dances, and it's left me with a somewhat bad taste in my mouth for quite some time  (much in the same way that the Special Olympics does).

Some of the people that attend these dances are terrific dancers. More importantly, a lot of them simply love to dance. Why aren’t we encouraging people with disabilities to attend community dances, and providing needed support for that to happen if necessary?

On the Other Hand...

I have an idea of the “whys” and “wherefores” for these questions. Sometimes staffing pressures don’t allow that kind of support, and it’s not always easy to get volunteers. And I know that for some of the people I’ve supported, I’d have concerns about them going unsupported to a community dance where alcohol was being served (although it’s certainly their option to do so). I worry enough about their safety as it is, given the research I’ve done into the higher rates of assault for people with disabilities – less than I would than if we were living in a big city, but I think it’s na├»ve for anyone to assume that violence can’t find them in a small town. Even with my cane, a loud voice, and a more than reasonable amount of force behind me (and no compunction about using all three to defend myself if I had to), I won’t go walking in my town past a certain point at night alone, and definitely not in certain areas.

I see why people like the segregated dances. They’re inter-community social events. They’re a chance for people to meet up with friends supported by other agencies. Sometimes, people from my community have found people that they knew from when they were institutionalized as children, teens, or young adults. It’s interesting to see people form new friendships and rekindle old ones.

Why Not Just Dance Together?

I think that the way I’d ideally de-segregate these dances is that I’d try to bring more of the community into the dances as they’re currently conducted. Because, seriously, I had a blast on Thursday night, and I think it was because it was the least judgemental place to dance that I’d ever been.  I wasn’t a very good dancer before my stroke, and I pretty much just flail now – but nobody cared. The woman with Down’s Syndrome who grabbed me for I-can’t-even-remember-what-song and tried to teach me to ballroom dance didn’t appear to care that the stubborn fingers on my left hand wouldn’t interlace with hers – she just grabbed my wrist, showed me where to put my other hand, and we laughed and laughed as she tried to get me to spin around the floor. No one cared if you liked to dance in a large group, a small group, or by yourself, or if you wanted to dance a slow dance with your opposite-sex partner or your best same-sex friend or just twirling on the floor by yourself. People danced in their wheelchairs, people sang loudly without letting a little thing like not knowing the words get in the way, and no one seemed to think a thing of it.

It was inspiring. There was a place for everybody.

It was humbling. I thought, “This is the way it’s supposed to be – and we ‘smart’ people are supposed to get it, but we don’t. It’s the people that we look down on that truly get it.”

Sometimes…I wonder how “smart” all of us “normal” people really are.

Happy Halloween!

Wednesday, 26 October 2011

My Brain AVM Story: Therapy animals

I never realized until recently just how many kinds of animals work as therapy animals - dogs, horses...even elephants!

Therapy Animals at PGH

I was in stroke rehabilitation at Penetanguishene General Hospital for their annual summer barbecue, hosted by a benefactor at his large home. PGH is a very small facility, so it wasn't a big deal to get everyone who wanted to go out to the large property for a day of fun and food and - pony rides.

The staff said that they'd get me up on the pony for a safe, guided ride if I wanted one. They really encouraged me to try riding the pony, in fact. I wasn't having any of it. I couldn't see how they'd get me onto the pony, and I had it in my head that I'd be too heavy for it anyway.

But perhaps I should have. Horses are very effective therapy animals. I've known for a long time now that some people with developmental disabilities such as autism and Down's Syndrome experience significant functional gains from being in contact with horses - the process is called equine therapy.  Equine therapy is also used by psychotherapists, to help people get over eating disorders, anxiety disorders, and grief issues, and to manage conditions like ADD/ADHD.  Doing some investigating this week, I also learned that a part of equine therapy, referred to as therapeutic riding (or hippotherapy) actually helps people with physical disabilities due to brain injury, cerebral palsy, and stroke to recover balance and function.

And ponies *are* horses.  I googled that. And then I googled "equine therapy ponies" and found a place that's a team of ponies which which they do equine therapy and hippotherapy

Horses are amazing. Maybe I should have tried to go for a pony ride that day.

Therapy Animals at ORC

But I didn't. Ottawa Rehabilitation Centre had a therapy animal program - they had a therapy dog that came in weekly, and I never missed his visit. He was an older dog, a little slow-moving. I can't remember what his name was, or what breed he was. But he and his owner spent Thursday afternoons in the Rec room, where Arts and Crafts was held on Thursday nights, and we'd all file in and out as our schedules allowed. That dog would sit there and happily let you maul him as long as you wanted, and I saw him get smiles out of people that never smiled otherwise.

*My* Therapy Animals

There was a family in the area that had therapy dogs when I moved home, but I never met them - they worked pretty much in the hospital.  So I found my own therapy animals.

I loved being at home with our family dog, Sandy, but she was quite elderly. She died while I was living with Dad. I wasn't able to get a dog when I moved out on my own.  My apartment building allows pets, but the winter conditions in the area made me very unsteady on my feet for the first couple of years. I couldn't guarantee that I could walk a dog as much or for as long as it needed. So when I finally decided to get a pet, I got a kitten. Poor Paddington was ill and had to be put down not long after his first birthday. But Faira came to live me soon after, and then Mindee.

Faira (tabby) and Mindee (orange and white)

I hadn't had cats when I was growing up, and I can see now why they don't make good therapy animals. Like most cats, Faira and Mindee only want affection on their own terms, and sometimes I think they see me as only food provider and main obstacle to completely taking over the bed. But, as I write this, Faira is purring on my lap, half-draped over my arm, and the two of them are (I'm sure) exhausted by the close tabs they kept on me while I had food poisoning last week (read: they both slept on the bed with me/on me/somehow touching at all times...they do this when I'm sick).

I consider them therapy animals, even if they're not officially ones.  And, now that I know what trying to lift a sleeping cat *actually* feels like, I have a much greater appreciation for what my nurses told me trying to lift a limb affected by stroke is like.

Everything has a lesson to teach us, apparently.

Tuesday, 25 October 2011

More on Michael Bloomberg and Accessible Taxis

Google delivered this to my inbox a few moments ago:

I don't know if it's just me...I'm having an awfully hard time understanding what the new strategy is. It's been made about as convoluted as it could possibly get.  Garth Johnson, the author of the article, attempts to sum to it up:

"Instead of just picking a wheelchair-accessible cab that would have been built in Brooklyn, the TLC picked one that isn't which it will now try and maybe get retrofitted to be accessible at the same time adding yet another vehicle into the fleet and spending more money to create another version of the already-troubled Access-A-Ride program. Nope, still doesn't make sense."

Truer words never spoken, Mr. Johnson.

Accessible Taxis (or Lack of, Mr. Bloomberg?) in New York City

The news just keeps throwing 'em at us lately.  This time, the US Justice Department is suing New York City over its relative lack of accessible taxis, but NYC mayor Michael Bloomberg doesn't see what the big deal is.

Bloomberg Doesn't Think Making All Taxis Accessible Will Work

In fact, he's opposed to the idea of making all of the taxis accessible (despite the fact that it's already been done in other cities, most notably in London, England) on the following grounds:

  1. Accessible taxis are more expensive to operate.

  2. The suspension is worse in accessible taxis than in typical cabs, so people might use them less.

  3. People are going to get hurt trying to get across the increased space between the back seat and divider in an accessible taxi, to pay the driver, increasing the risk of lawsuits.

  4. People in wheelchairs will find it too difficult to hail an accessible taxi from the street and get into it anyway.

The New York Post agrees, apparently:

Bloomberg's proposed solution is to have the city's 230 accessible taxis dispatched by phone to locations. A number of people who use wheelchairs or who have friends and/or family that use wheelchairs indicated in comments on the articles just why this wouldn't be acceptable to them.

Bloomberg Evaluates "Needs" re: Taxis

I have multiple difficulties with all this, but the one that really got to me the most when I came across this story yesterday can be summed up in a single quote attributed to Bloomberg:

“It’s always somebody who says, ‘oh, no, everything has to be handicapped accessible, or wheelchair accessible,’ but that’s not necessarily what the people that are in wheelchairs need,"

I think that comment in particular ranks as one of the most ignorant about disabilities that I've ever heard. What in God's name do they need then, Mr. Bloomberg? It's not like it's okay *sometimes* when things aren't accessible, because on that day the paraplegic isn't feeling so tired and might be able to manage a regular taxi...generally, when you're in a wheelchair, you're in there for a reason, and you don't have the choice of saying, "I'll just go non-accessible today."  The thread running through a lot of the comments on the linked articles was that people wished that Mr. Bloomberg would spend a day or two in a wheelchair trying to get around New York City, to get an idea of what his constituents that use wheelchairs *really* need.

Accessible Taxis and Visitors

And not just constituents. New York thrives on tourism. If I was in a non-folding wheelchair and my main consideration about what city in which to vacation was ease with which I would be able to get around...frankly, from what I've heard, I'd probably go to London.  It's an awesome city, just as exciting a place to visit as New York, and *all* the taxis are accessible.

Really, Mr. Bloomberg...could you blame me?

Monday, 24 October 2011

Rest in Peace, Stuart Walker

The police aren't ready to declare 28-year-old Stuart Walker's death a hate crime, but the brutality of the murder has too much in common with Matthew Shepard's death in 1998 to convince me otherwise.

Shepard, an openly gay student at the University of Wyoming, was tortured, pistol-whipped, tied to a fence, and left to die.  His murder was the reason that American anti-hate crime legislation was eventually extended to cover homosexuals.

Walker lived in Cumnock, Scotland.  His body was found on early Saturday morning, Scotland time. His injuries suggest that he was a was tied to a lamppost, beaten, and burned.

Stuart Walker's Death and Unpleasant Memories

I remember when where I was when I heard about Matthew Shepard. I was in university, in my room, listening to the radio. When the news came on, and I heard what had happened, I felt like throwing up.  I had friends who were gay. I was scared for them. I didn't like that things like this happened in my world.

I felt the same way yesterday when I heard about Stuart Walker's death on Twitter. I have friends who are gay. I know that there are teens and children in my community who are struggling with their sexuality - not by name, but I know they're there...heck, I hung out with some kids that were struggling when *I* was in school, and I don't imagine that the issues associated with being gay, lesbian or bisexual in a small town have gotten any less difficult to deal with since I graduated.

And while I've never supported any individuals with intellectual disabilities who have indicated that they were gay, lesbian or bisexual, but I've had delightful conversations with a few that are. The idea of  people who are already at risk in so many ways, having to live with the potential for even more stigma and violence just to be who they's frightening.

And it's sickening. For anyone to have to hide who they are out of fear is downright sickening.

For anyone, whatever their sexual orientation, to have to die the way Stuart Walker did, is just...beyond-words-wrong.

I wish I knew what the answer to all this was.

Scotland, know that there are Canadians mourning with you.

Rest in peace, Stuart Walker.

Friday, 21 October 2011

Interview with Ricky Gervais, for those interested...

Ricky Gervais Defends Himself

I gather that Ricky Gervais has spoken to several people about the "mong" controversy, but I happened upon this interview with disability blogger Nicky Clark as I was looking around Twitter tonight. The interview itself is interesting...the comments, in my opinion, are even more so.

I tend to agree with what what Nick McGivney said in his comments - this interview was a good start, but it's going to take more than this to undo the hurt that his words caused.

I'm skeptical about how genuine Ricky Gervais is actually being in this interview, but perhaps I'm being too cynical. I'd like to hear how other people feel about it.

Thursday, 20 October 2011

Ricky Gervais Returns to Twitter

So, Ricky Gervais returns to Twitter by mocking people with disabilities. This time it's not "retard", but "mong".

For those who don't know, "mong" has for decades been considered a shortened form of "Mongoloid", which is what people with Down's Syndrome used to be called. It's an insulting, bullying term, along the same lines as "retard".

But Ricky Gervais insists that he didn't mean to be insulting to people with Down's Syndrome when he used "mong" in a series of jokes on Twitter recently, among them "Good monging" , "Night night, monglets" and "Two mongs don't make a right".  Like other comedians who defend their use of "retard", he claims that he was using "mong" to insult "dopey or ignorant" people.

The twitter pics of him in self-described "monged-up" poses with captions such as "My favourite drink is toilet" obviously weren't meant to mock people with Down's Syndrome either. *laying on the sarcasm very thickly*.  I find it difficult to understand why he's surprised that advocacy groups are upset.

I'm going to link back to the very first post I wrote about this sort of this...about "political correctness" and "words just being words"...and reiterate that I'll never call for any word to be banned.

But I do wish that people (this means you, Ricky Gervais) would be more responsible with what they put out there.

By the way, Ricky Gervais...

I know this means nothing to you...but I stopped watching "30 Rock" after Tracey Morgan's last stunt like this.  And I was getting bored with "The Office" anyway, so I really won't find it difficult to cut it out of my Thursday night viewing. *shrugs*

Here's another commentary on Ricky's jokes, and his refusal to apologize, which I particularly like.

Sunday, 16 October 2011

Lessons from Philip Garber

A Facebook interaction last Thursday evening was...not my finest moment, advocacy-wise. It all centred around an article that I found and linked to about Philip Garber, Jr., a college student with a stutter who was asked by one of this professors not to speak in class.

"Your Speaking is Disruptive

Philip Garber's "profound stutter" is not the only thing that makes him unique in his 2 classes per semester at the County College of Morris.  At 16, he's in college when most of his peers are still in high school. Philip Garber's education has been home-schooling and charter schools, and he says that he's not experienced any discrimination because of his stuttering. In light of that, his History teacher's suggestion that he not ask or answer questions in class so that he not "infringe on other students'

time" and the more blunt, "Your speaking is disruptive" surprised him.

Shocked, my original comment on the article was: "If I'd been his support worker, she would have been toast."


Then a dear friend who is a college professor weighed in. She said that she wondered why he was focusing on college so early instead of continuing with the speech therapy that he'd decided to leave a while ago.  I said that I could see her point - why would Philip Garber put himself in such a high-pressure setting, that presumably would make his study worse, when there was plenty of time for college?

Another friend who knew better than both of us came along and pointed out that speech therapy doesn't work for everybody, and that stress or nerves don't always affect stuttering.  And another friend that I totally wouldn't have expected to be on Philip's side posted in emphatic support of disciplining the teacher for how she'd handled the situation.

Philip Garber and Person-Centred Support

I thought about Philip Garber and that article a lot last Friday.  While I could see my professor friend's points, something about the way I'd responded was really bothering me, and it took me a while to figure out what it was. While Philip wouldn't be a person that I'd normally support in my line of work, I've certainly worked with teens with intellectual disabilities that have *wanted* to go to college or university. One young man with a mild disability had his heart set on Bible college. I had my doubts about whether he could handle it, as did the high school that he attended. But we used the brief time that I was available to support him to go through the application process, and I heard later that they'd accepted him. I assume that they did so expecting that they'd be able to meet his needs, as we'd made them clear in the application.

And that's when I figured out what was bothering me. I'd forgotten about being person-centred, as a support worker. If I'd been a support worker for this 16-year-old young man (for anyone, really), being  person-centred  always makes it very simple: "You don't want to do speech therapy anymore? Let's talk to your parents about why you don't want to do it and see if we can come to some sort of compromise. And if you want to take college courses...let's see what it would take for you to get in.  It's up to you."

And I'd forgotten about good advocacy. Philip Garber obviously has the academic credentials to be at County College of Morris, or the school wouldn't be letting him take courses there. Whether he's paying to go himself or there on some sort of scholarship, his tuition is being paid. He's a student at the school, and as a student at the school with a disability, he's entitled to accommodation - not an attitude of "I'd rather not deal with your disability, so don't talk."

She *would* have been toast. As his support worker, I'd have made sure of it.

What Do You Think?

I don't think I'm really forgetting these things...maybe just need to get back into the swing of things. More volunteering, perhaps, now that school's over.

By the way, here's a link to Philip Garber talking on YouTube...decide for yourself how "disruptive" his speaking would be if he answered questions in a school environment.

Saturday, 15 October 2011

Catching up...

Wow, has it really been since Monday that I posted here?  I don't like leaving the blog unattended that long, and I will do my best not to do it again. It's been a very long week.

I have been doing technical writing courses for over a year now. I've been doing them online through Simon Fraser university. My final assignment in my final course was due this week - a 25-page document, which for me was a social media policy for a local organization, complete with a basic guide book to social media. The document has labelled screen shots, and diagrams, and charts, and an's been a lot of work over the last ten weeks, and *a lot* of work over the last two weeks, and I'm quite proud of it. I'm just hoping that the organization and my professors feel the same way.

So, that's been taking up all of my  time this week. And any other energy I've had has gone into worrying about my cat, who got outside last Saturday night...making and putting up posters, calling radio stations, vets, newspapers, pet stores...anyone willing to take some information or put up a notice...trying to keep my other cat's anxiety level down (she doesn't like being separated from her friend), and wondering why my cat going for a little walkabout put me in such an emotional tailspin.

Thankfully, my little wanderer showed up outside my window early Friday morning,. She was soaking wet from the rain, and very hungry, but thankfully unharmed, and she has nicely settled back into apartment living. I have never been so happy to see that stupid cat.

So, that has been my week. A lot has come up that I will be writing about, but for tonight I'll leave you with a nice image. I wrote not that long ago about how I feared that, only being able to use one hand, I was concerned about how much I'd be able to interact with my infant niece, Gillian. I can't
just go and pick her up the way everyone else does.  But my sister and her husband are fine with putting her in my arms, and on a recent visit Rachel put her in what they both call "treefrog" position against my chest.

Now, I'm sure that "treefrog" isn't the technical term for this position, but Rachel and Gavin started calling it that because Gillian snuggles right in when she's in it - like a treefrog suctioning itself to a tree. Rachel thinks it's because she likes being near someone's heartbeat.

"Treefrogging" - Gillian and Gavin

But it's a good position for me to hold her in when I'm sitting down, because I can use my good arm and hand to support her under her bottom and my weak arm to support her across her back - I don't even really need my hand.

She slept in my arms for a good 45 minutes this way, all warm and snuggled up against me, making her little baby sleep noises...and I suddenly felt much more like I was able to be a part of Gillian's baby years.

"Of course you can be!" my sister scoffed when I told her about this, and I realized that it hadn't even occurred to her that I wouldn't (or couldn't) hold Gillian because of my disabilities.

I guess I sometimes still make a bigger deal of things than they need to be...even after over a decade of living with disabilities. I'll talk a bit more about that tomorrow night.

Monday, 10 October 2011

Kids, Disabilities and Teaching/Learning about Inclusion

I've been thinking about society and inclusion.

Is Inclusion Valued in Our Society?

It's always interesting, seeing how kids react to my disabilities. Kids on the street tend to stare, which really embarrasses their parents. I can hear the kids says things to the effect of, "Mommy, what's wrong with her?" or "Mommy, why does she have a cane?" and the parents quietly hushing them: "Don't stare."

When I get the opportunity, I just tell curious kids that my leg doesn't work very well and that I need my cane to help me walk, and that satisfies most of them. The parents usually apologize, and I tell them not to; I tell them that I'd rather kids ask questions than think that there's something mysterious and scary about my cane that they shouldn't talk about. I think this surprises a lot of people. They'd probably be even more surprised to know that in my head I'm thinking: "And at least kids openly stare rather than stare and try to hide the fact that they're doing it."

Giving Kids Resources to Embrace Inclusion

The fact is, if we're going to live in a society that embraces inclusion of *all* people with differences, we need to give children space to question and talk and develop the skills and vocabulary that they need to live in that society...and be patient when they're not as sensitive as they should be. For my nurse friend Callie (named changed) at Penetanguishene, this meant sitting down and talking to her four-year-old daughter about how she'd meant to ask me why I was in a wheelchair, not a wheelbarrow, and what the difference between the two of them was. For me, it meant holding back my laughter when a kid at the elementary school at which I was a supply Educational Assistant for an afternoon jeered at me, "You use a cane...", as if 1) I didn't know it already and 2) He'd happened upon the ultimate insult.

"Yes," I said calmly, thinking, What's the best response to this? After a split-second of hesitation, I said, "Jealous?"

He was clearly taken aback. He stared at me for a moment, and then said, "Uh...yeah."

Lesson learned, sonny, I thought, moving on to my next class.

Learning Lessons From Kids about Inclusion

Not that kids haven't had lessons to teach me, too. In my work as a supply EA, I generally told the kids that asked what had happened, that I had to use a cane, that I'd had an accident, but I was fine now. I didn't want to scare them with stories of bleeding brains and me having my head cut open, etc. But one kid, about eleven years old and in a special education class, did not want to let it go.

Had I been in a car accident? he wanted to know. No, I said.

Snowmobile? Jetski? Motorbike?

I finally explained to him that I'd had a problem in my brain and they'd had to do some surgery on it, and the surgery had caused some problems...but that I wasn't in pain and I was getting better everyday.

"Well, why didn't you just tell me all that to start?" he said, disgusted.

I'm starting to wonder that myself, I thought.

I underestimated kids going into that job. They're smart.  They intimidated me in a way that no high school student ever did, and they taught me a lot.

But I underestimated high school students too. I always worried that the high school kids with intellectual disabilities that I worked with didn't have enough friends in the high school, but they always got a loud, long round of applause from the student body when they crossed the stage at Graduation. And it was always the toughest, most bad-ass students that fell over themselves to hold open doors for me when I visited the high school.  Kids are learning that inclusion is a good thing.

Don't get me wrong.  Inclusion definitely isn't being embraced in our cultural institutions as quickly as a lot of us would like. Both kids *and* adults with disabilities get bullied. There's a lot of intolerance out there.  We've got to start this education process of "different does not equal bad" early, give kids opportunities to learn and question, and keep our own hearts and minds open as we educate them...because they've got a lot to teach us about inclusion too.

Lots of stuff to think about...

Sunday, 9 October 2011

Happy Thanksgiving

So today is Canadian Thanksgiving...and with that in mind, here are some things that I'm thankful for:

1. I've got all my basic needs met: food, water, a place to live, affordable medical care, etc.

2. I've got a wonderful, supportive family...including my beautiful niece, Gillian, who is celebrating her first Thanksgiving today.

3. Even though I haven't got a job, I'm actually doing a lot of what I love right now - writing. And I'm taking steps every day toward turning that into a job.

4. I live in a community that, over and over again, has shown itself to be full of friends, sometimes when I least expect it and most need it.

5. I have friends all over the world. That's a really cool feeling.

6. I live in a country that values peace-keeping, human rights and taking care of its vulnerable citizens.

7. I'm much more than my disabilities.

8. "The Big Bang Theory" is on every night now. :)

Happy Thanksgiving, Canada.

Saturday, 8 October 2011

A Week-end Shout-Out

I'm sneaking back on here this week-end to send out a big thank you to Chris Salter at Post-Polio News for not only picking up one of my blog posts, but an article that I wrote on employment for people with disabilities for Disability Horizons.

Chris has been providing a polio and post-polio news service in various guises since 1997. Post-Polio News sends out three web-based editions a day, each with a variety of disability-related resources from around the web. It's well-worth subscribing to.

My articles are linked off of this page:

Thank you again, Chris. :)

Happy Thanksgiving to all the Canadians out there!

Friday, 7 October 2011

Tales of Online Dating

I was browsing through some links on Twitter  last night, and I saw one about a "diabetes 'dating service'". My first thought was, "Not this again."

A Diabetes Dating Service? Because People with Diabetes Should Just Date Each Other?

I checked out the link, and it was actually about a program to link diabetes researchers with people who actually have diabetes (which is apparently a bigger problem than most people think it is). But the link had brought me back to the days, not long after I'd moved into my own apartment, when I joined an online dating site specifically for people who have disabilities.

An Online Dating Site? Because People with Disabilities Should Just Date Each Other?

At the time, I was looking for at least a penpal who understood what it was like to be recovering from a stroke. I did find someone. We only emailed, but he was super-intense and moved way too fast and seemed to think that we were destined to be together forever after a few emails - where we primarily talked about how we'd both had strokes and how we were both dealing with them now.

I stopped communication and didn't go back to the online dating website. Something besides his intense behaviour had made me skittish. I didn't realize then that it was what would largely form the basis for my peeve about grouping people with disabilities together. I'd talked for years in training and with colleagues about how society tended to assume that disability in common was something on which people could build a friendship or even a relationship, but I hadn't realized until then how...short-sighted that was.

More in Common with the Able-Bodied People in a Group than with the People with Disabilities

Knowing what I do about online dating now, I feel now like I walked away from the online dating website having more in common with your average able-bodied online dater than the guy who'd had the stroke to whom I'd been talking - there are a lot of people out there who have gotten involved with someone on an online dating website and had them get way too serious way too quickly - like say "I love you" after three emails. It could be a story from any dating site.

And the one guy that I did meet, admittedly not on one of the more major dating sites, but on an advice site associated with it, who'd also had a stroke at an early age - we've been long-distance friends for three years and we rarely talk about stroke stuff. We've got other things in common to talk about.

Choice Choice Choice!

Now, I'm not saying that there isn't a place for an online dating web site just for people with disabilities. I've said it before and I'll say it again - there's nothing wrong with people preferring, and choosing to try to find, the company of other people who share their experiences. Sometimes it's difficult for people who haven't "been there" to understand the experience of having a disability, so I understand why people with disabilities might use a dating site where they have a better chance of finding someone else with disabilities. But note I said "choosing" earlier. Again and again, it all comes back to people having options. And thank goodness, this is an area where we do - no dating site is ever going to try to say, "Disabled people need not apply".

Just a Little Bit of Who I Am

For me, the thing is...a disability is only a part of who a person is. It's something that two people may have in common who are different in absolutely every other way - and totally wrong for each other. And that's why I never went back to the dating site for people with disabilities.

Because, good or bad, I'm more than just someone who had a stroke. I've had to fight hard to get people to see that, and going back to a dating site that encourages people to look at me first as a person with disabilities feels like a step back.

Have a great weekend!

Wednesday, 5 October 2011

Election Day in Ontario

Today, Ontario is electing a new Premier. I'm curious as to how Ontario agencies who support people with intellectual disabilities have assisted the people they support to prepare for voting. I've never worked with any people with intellectual disabilities in my career who have been interested in voting in an election, so I've never had to go through that process. But I know that people with intellectual disabilities certainly do vote in elections. And why shouldn't they?

Issues Affecting People with Intellectual Disabilities

The provincial governments administer income support for people who have disabilities that prevent them from working. In Ontario, this program is called the Ontario Disability Support Program, and it also covers medical, dental and eyewear costs. Most people with intellectual disabilities receive at least some support from this program, or have found work to supplement their income support with the help of the ODSP Employment Supports Program. They deserve to know which party is willing commit resources to keeping ODSP income support at its present level (which is only enough to keep people living at a poverty level) and who is committed to raising it. It's important that the people affected by the issues vote and get their voices heard.

Every Canadian Over 18 Can Vote in an Election

I understand that the concept of an election might be difficult for some people with intellectual disabilities to understand. I've tried to explain to people I've supported why they should pay their taxes, and that was difficult enough. There's much more to an election than, "We pay taxes so that the government has money to run our schools and post offices and to pay our doctors to take care of us when we're sick" (there was more to the conversation than that, but that was the gist). And the thing about taking large amounts of time to prepare people for things like voting in elections is that front-line workers really have too much to do already. Their days are pretty packed.

However, every Canadian over 18, whether or not they're living with disabilities and regardless of how well they grasp the issues involved, is entitled to vote if they want to. The politicians don't care if a vote is well-informed or if someone votes because they like the sound of the person's name; a vote's a vote. So if a person with intellectual disabilities wants to vote and has had no education about elections at all, we really can't, as support people, stop them in good conscience. They wouldn't be the first to go into the voting booth not knowing a thing about any of the names and what they stand for; they won't be the last.

It would just be much nicer if they had some preparation, some awareness, before going in, to the extent that agencies can manage. For those people supported that indicate prior interest, it's the right thing to do.

Good luck to all the candidates.

Tuesday, 4 October 2011

My AVM Story: Winter and Stroke-Brain

I came home from rehab for good in Christmas of 2000. The winter was a long one of really not going much of anywhere except for physiotherapy a couple of times a week, walking in the high school in the early mornings, and the odd outing out of town for a movie with Dad. I was doing some correspondence courses to keep busy, and it didn't do much to wear me out anyway. But one afternoon cabin fever set in, and my stroke-brain pushed me outside.

Blame it on Stroke-Brain

I believe I've talked before about how stroke survivors are prone to making bad decisions about what they can and can't do with their new bodily capabilities.  I call that stroke-brain. Stroke-brain doesn't always give people accurate messages about their bodies. A woman in Penatanguishene rehab that had a room across the hall from mine was constantly trying to stand up from her wheelchair and put things up on shelves or straighten a picture. I was much more stable on my feet than she was, and I was forever trying to get her to stay put in her wheelchair and let me do whatever she was trying to do before she fell and broke a hip. Her stroke-brain just didn't let her  understand that she didn't have the balance or the strength in her left leg to stand without support. Who knows, maybe my stroke-brain was giving me the wrong messages too.

The Great River Expedition

One day in those first months back from rehab, my stroke-brain told me that I had the balance and and strength to go for an early spring walk down to the river via the cleared area next to our house.  That involved navigating snow banks, deep snow, fallen trees, and eventually a brief path through the forest. I fell several times, which made me even more determined to get to the river.

I got there and back without doing grievous harm to myself, thankfully. I thought that my father would be pleased that I could actually manage terrain that difficult.

He wasn't. As I remember it, I ended up promising that 1) I'd take the cell phone with me every time I went outside 2) I wouldn't try to go down to the river alone again.

I'd known that The Great River Expedition was dicey. I hadn't realized at the time that it was actually dangerous. I do now. Now I think it was one of those times when my stroke-brain thought that my body was capable of more than it actually was, and I'm really grateful that I didn't end up hurting myself.

Learning As I Go

Learning the limits of my new body was a learning process. I can generally tell now when something's going to be risky, given that my balance isn't great, and I stay away from them.

I do admit to standing on a chair to change a lightbulb, which is something I (and probably  most people, when you get right down to it) shouldn't do.

I never claimed to be perfect.

Monday, 3 October 2011

Accessibility and Priorities

Canadian Parliament Buildings
I never said that I wouldn't comment on Canadian politics. :)

Not Politics, Per se - More About Accessibility...

...and the level of disability awareness and priority of disability issues within our political system.

I saw two stories on yesterday that intrigued me. The first was a piece about how the carpet in the House of Commons really lowers accessibility in the House for NDP Member of Parliament Manon Perreault. She finds it very difficult to get over the thick carpet in her wheelchair. I didn't even know that any of our MP's used a wheelchair, but there are apparently two: Perreault, and Conservative MP Steven Fletcher. A lot of the article was devoted to their thoughts on whether they would work together...because, you know, it's only natural that they would world work together, both having disabilities, even though they're from different parties, and his first language is English while she speaks almost exclusively French. After all, don't all people with disabilities enjoy each other's company (I'm laying the sarcasm on really thick, for people that haven't got it yet. The assumption that people with disabilities should want to do things together just because they have disabilities is a big pet peeve of mine.)

Back to accessibility: They're obviously improved accessibility in the House of Commons and and made changes to its procedures to accommodate Perreault's wheelchairs (which I'm assuming is manual). But if she still  has to rely on a page to push her through the carpet to her place in the's not an accessible space for her.  For a government that (rightfully) insists that the places it runs (like post offices) have a high level of accessibility, that's not acceptable.

Business Cards with *What* on Them?

And meanwhile:

Minister of Affairs John Baird just got $428.88 for from the government for gold-embossed business cards.

I believe that he's rightfully taking a lot of flack for it, and it's not just because I don't support the Conservatives. I don't believe that gold-embossed business cards are necessary for anyone accepting public money. But that's another debate, really. Here's how I link it back to accesibility:

We've got two individuals in Parliament who use wheelchairs, and 306 who, as Fletcher said in the in the first article to which I linked, don't know very much about the needs of people with disabilities.  Now, the $428.88 that John Baird spent on his business cards won't go far to remedy that, but it's the wasted money that bothers me. Before taxpayer money goes to things like that, is money going to educate MP's about any potential needs that their colleagues with disabilities may have while the House of Commons is sitting? What about the needs of their constituents with disabilities (a number that will keep increasing as the population ages)?

Do the MP's in Ontario, for example, know about the deadlines for making public and private businesses completely accessible under the Accessibility for Ontarians with Disabilities Act? Could they talk about those deadlines with their constituents?

There are a lot of things that need money right now. Gold-embossed business cards are just too much of a luxury for taxpayer money.

Mariah Slick, Homecoming Queen

Mariah Slick wins Homecoming Queen at Azle High, Texas

Let me preface this by saying that I went to a relatively small high school (about 700 students when I attended), and we didn't elect a Homecoming Queen. So I had to do some research when I saw the link on that a teen with Down's Syndrome, Mariah Slick, won the title of Homecoming Queen at Azle High School in Azle, Texas.

The look on Mariah's face when they announce her name is wonderful. But, ill with a cold yesterday, a cynical part of me took over, thinking, "A bunch of people must have gotten together and planned to vote the "nice little disabled girl" in."

And then another part of me thought, "So what?"

In the book, "The Secret Life of Bees", Lily Owens asks August Boathouse why she chose to paint her farmhouse bright pink. August says that she did it for her sister May (who we learn through the course of the book likely has some sort of mental illness). The idea of painting the house in that bright pink made May so happy, and August figured that living in a bright pink house was worth it if you could make somebody that happy.

If I'd have been nominated Homecoming Queen, I'd have needed a block of people determined to get me in too in order to win. People were willing to do it for Mariah Slick, and that really says something, about how she's impacted her peers, I thought. So I moved on with my day.

Story Isn't Over...

Today, when I was considering doing this blog entry, I did the research that I talked about in the first paragraph,  on both both Azle High and Homecoming Queens. I assumed that only the graduating class voted for the Queen, which would be a vote that you could conceivably swing toward someone (at least in my school).  But I guess the whole school votes. And Axle High has 1700 students.

This wasn't any "pity win". Mariah Slick won this fair and square. Congratulations to her!

And kudos to Axle High School students for recognizing the contribution that Mariah makes to their school community and giving her some recognition for it.

And shame on me for being cynical without stopping to learn all the facts, even when I figure that I can justify it.  It seems that sometimes I still underestimate people. I'll have to work on that.