Happy Thanksgiving

So today is Canadian Thanksgiving…and with that in mind, here are some things that I’m thankfulthanksgiving 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.

 

 

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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:

http://paper.li/postpolionews/1291300268

 

 

Thank you again, Chris. :)

Happy Thanksgiving to all the Canadians out there!

 

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Tales of Online Dating

I was browsing through some links on Twitter  last night, and I saw one about a “diabetesonline dating ‘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!

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Election Day in Ontario

Today, Ontario is electing a new Premier. I’m curious as to how Ontario agencies who electionsupport 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.

 

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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 stroke-brainreally 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.

 

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Accessibility and Priorities

I never said that I wouldn’t comment on Canadian politics. :)

Not Politics, Per se – More About Accessibility…

accessibility

Canadian Parliament Buildings

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

I saw two stories on www.ctv.ca 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.)

http://www.ctv.ca/CTVNews/Canada/20111001/wheelchair-bound-mp-fights-commons-carpet-111001/

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 House…it’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:

http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110930/john-baird-gold-business-cards-110930/20110930/?hub=EdmontonHome

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 ctv.ca 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.

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Mariah Slick, Homecoming Queen

Mariah Slick wins Homecoming Queen at Azle High, Texas

Mariah Slick

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 Huffington.com that a teen with Down’s Syndrome, Mariah Slick, won the title of Homecoming Queen at Azle High School in Azle, Texas.

http://www.huffingtonpost.com/2011/10/02/mariah-slick-down-syndrome-homecoming-queen_n_991098.html?ncid=edlinkusaolp00000009&ref=fb&src=sp&comm_ref=false

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.

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The R-Word Hurts People

Check out this simple-but-powerful video about the R-word. Sometimes we’ve got no idea
who our words hurt.

http://downsdad.wordpress.com/2011/09/28/a-girl-speaks-out-for-her-brother-about-retarded/

If you’re ready, take the pledge at http://www.r-word.org/ to stop using the R-word.  It’s nice to see people make a personal commitment to try and stop using the R-word.

I’d never argue that the word should be banned. I don’t believe in banning people from usingintellectual disability words. I’d like to think that people would just care enough to voluntarily stop using words that offend large groups of people. And I’ve already talked about how I can see the points of people on both sides of this issue. Ultimately words are just words.

However, the words we use do ultimately impact how people see us, and they say a lot about our intentions. It’s difficult to insist that you believe that you believe in communities where everyone can live in dignity and participate to the fully extent possible if you believe it’s okay to use language that’s become negatively loaded and that pertains to groups that you’re trying to make feel welcome.

Words of wisdom to finish with; I haven’t been able to find a source.  The bolding is mine.

Watch you thoughts; they become words.
Watch your words; they become actions.
Watch your actions; they become habits.
Watch your habits; they become your character.
Watch your character; it becomes your destiny.

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When Professionals Become Bullies

Bullies on “FOX and Friends”

This post isn’t explicitly about people with disabilities, but it is about people with which many people with disabilities struggle: bullies.

I don’t watch “Dancing with the Stars”, but I’ve heard that in this particular run of the series there’s

bullies

Bullying behaviour is very unprofessional

been a great deal of controversy about Chaz Bono being one of the contestants. Chaz was Cher’s daughter Chastity until undergoing gender reassignment surgery, and now is one of America’s most well-known advocates for transgendered people.

I will leave it to people more competent than I to explain why North America feels so threatened by transgendered people that their reaction to Chaz being on the show was so pronounced, including calls from FOX News contributor Keith Ablow that Chaz leave the show to keep children from wanting to change sex themselves (I will say a hearty “bullshit” to that, though).

I will *post* “FOX and Friends” reaction to the fact that Chaz slipped in the ratings after Tuesday’s show, because I think it’s among least professional pieces of journalism I’ve ever seen.

http://gawker.com/5844284/fox–friends-recoil-at-the-mention-of-chaz-bonos-name

For those who can’t access the link, it went like this (after all three anchors cringe at the mention of Chaz Bono’s name):

Brian Kilmeade: Steve, can you tell us more?
Steve Doocy: Uh, no, I can’t. [Laughs] Thank you very for that update.
Gretchen Carlson: [Hands on temples, as though massaging a migraine] Let’s talk about the Senate instead! That might take too long to explain to Steve, Brian, and the rest of the world.
Brian Kilmeade: The one part of Chaz that hasn’t been operated on!
Steve Doocy: So far! [Laughter]

Ridiculous and Scary

I can’t count how many hours my sister has spent on anti-bullying initiatives in the schools in which she’s taught. We as a society keep talking about how we have to teach our kids that bullying is unacceptable and that we need to celebrate people who are different than we are.

Only to have so-called “professional journalists” bring this trash to our televisions. With no apology forthcoming today from the bullies, from what I could find.

A world where the media gets away with bullying people makes me concerned about the people with intellectual disabilities in my life. A report from AbilityPath.org says already that students with disabilities are 2-3 times more likely to be targets of bullies than students without disabilities. I told students that bullies and make fun of them aren’t worth their time and aren’t worth being friends with, but I know it’s difficult for them to accept. It’s difficult to anyone for accept when people make fun of them.

Leave Chaz Alone

From the little I know of  Chaz Bono, I imagine that it’s had to have been incredibly difficult to make the transition he has under such close media scrutiny. That takes guts.

He’s more of a man than Brian and Steve will ever be, and infinitely classier than Gretchen. I know that’s kind of harsh, “FOX and Friends”, but what can I say – bullies just don’t do it for me, and you guys are old enough to know better.

 

Walk a Mile in Their Shoes: Bullying and the Child with Special Needs – A Report by AbilityPath.org  http://www.abilitypath.org/areas-of-development/learning–schools/bullying/articles/walk-a-mile-in-their-shoes.pdf

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Recruitment Programs: Necessary, or Reverse Discrimination?

Recruitment programs in universities and for some government jobs, along the lines of “affirmative action” programs in America, have always made me feel a bit uncomfortable. I remember writing on a university exam that recruitment programs for racial diversity were a band-aid solution with which we should do away, in favour of focusing on initiatives that truly leveled the playing field for whites and minorities: programs that made it easier for kids from all races to stay in school, and that made higher education more accessible and affordable for everyone.

Are Recruitment Programs Reverse Discrimination?

A couple of the youth with intellectual disabilities with whom I’ve worked have chosen not to use some social advantages that their status offers them, rather than admit that they have disabilities. I’m not sure whether it was out of a desire not to be lumped in with people with disabilities, or whether they were bothered by what’s arguably reverse discrimination. I know that when I considered applying for teacher’s college several years ago, I was put off by assertions that the universities I considered welcomed applicants representing different races, religions, sexual orientations, and people with disabilities, to encourage diversity within the student body.

“What, do you want a medal?” I thought, irritated. “You should be doing that anyway, without feeling the need to congratulate yourselves over it!”

I knew it meant that I stood a better chance chance of getting into the teaching school than someone with my academic and extracurricular record who didn’t have disabilities. This annoyed me too. I wanted to get in on my own steam, not because of my left side.

A Different Way of Viewing the Issue

I talked to a family friend about it, who said that I shouldn’t feel badly about taking my disabilities be a consideration. She pointed out that that having disabilities meant that I’d had to overcome some unique challenges to get to the point where I could get into teacher’s college and would mean that I’d have to overcome others to finish it. And, of course, it *is* good for students to be exposed to people in all areas of their lives who have disabilities. When I worked in schools, students were curious about my cane and my arm/hand and how it affected my life, and it actually gave me a common frame of reference that came in handy with some students with disabilities.

I never did end up applying for teacher’s college. Ultimately, I believe I’m in now in favour of recruitment programs in principle, despite my answer on the university exam (that was over 10 years ago, after all) but I still really wish that we lived in a world where everyone had equal access to resources, was regarded equally by hiring committees, and gave us no need for recruitment programs. I’ll stop there before I get into politics, because I know I said I’d let up on that for a while.

Is a Win-Win Situation A Good Enough Reason?

However, now, two months into unemployment and my only prospect potentially coming from a position perhaps coming from government funding specifically earmarked for creating employment opportunities for people with disabilities, I’m not feeling at all badly about taking advantage of that funding if it becomes available. I live in a very small town where the jobs for which I’m trained require a full driver’s license and usually your own vehicle, both of which are at least a year away for me now that my seizures are medically under control.  Many of those jobs also require two functioning hands, as do retail and food service. I’m trying to break into writing, but that may take a while.

There’s not a lot in my geographical area, in my line of work, that I can do, given my disabilities. So if there’s some government money out there earmarked for creating work for people with disabilities, bring it on. This time I do feel I’ve got a legitimate claim to it, because it’s either use it to compensate for legitimate challenges to obtaining work, or move somewhere else. And I like my where I live. It’s good for me. And I like to think that I contribute to my community (and that I could even more, someday).

It’s government money for a win-win.

That’s a good thing, isn’t it?

I’d be interested to hear other peoples’ opinions on this.

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