Archive | March, 2012

Canadian Association for Community Living Complains to Global Television

The Canadian Association for Community Living (CACL) wrote an open letter of complaint on March 30 to GlobalCanadian Association for Community Living Television regarding it’s “16 x 9″ program. Specifically, CACL was upset with reporting in a segment in a episode of “16 x 9″ regarding whether family members should have the right to take the life of a person with severe disabilities.

The Canadian Association for Community Living’s Concerns

CACL is one of the largest support/advocacy agencies for people with intellectual disabilities for people with intellectual disabilities in Canada. It oversees a network of ACLs at the provincial level, which in turn oversee ACLs in most cities and towns. I read the CACL’s letter to Global, and their concerns run along the same lines as mine (http://www.girlwiththecane.com/annette-corriveau/). I’m glad that an organization with their influence is speaking up.

The full text of their letter to Global is here:  http://www.cacl.ca/news-stories/blog/open-letter-and-formal-complaint-global-tv-biased-damaging-media-coverage

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Google’s Self-Driving Car: The First Test Driver

self-driving carIt doesn’t seem so long ago that we first got Internet access on our family computer, with the modem that was so slow that we couldn’t even see any images, and we were still the most Web-enabled people in the neighbourhood.  But that was actually 20 years ago. Now we can order pizza on the Internet, even in my little burgh, the kids that I worked with in my last job know more about Facebook than I do, and supergiant Google’s self-driving car technology may get people with low vision operating vehicles and on the roads like the rest of us.

http://www.pcmag.com/article2/0,2817,2402340,00.asp

There’s a video on this page of the car in action. It’s fascinating.

Google Strikes Again

Google didn’t design its self-driving car, a Toyota Prius, explicitly for people with low vision. Google has plans for a far greater market share than that, I imagine. A self-driving car could reduce or eliminate accidents across all demographics, by eliminating the need to drive while fatigued or distracted. However, Google recently chose to ask a person with less than 5% of his vision to test drive one of the self-driving cars. The gentleman found the ride very enjoyable, and speculated on how a self-driving vehicle would greatly increase his independence.

The Self-Driving Car – Not Just for Blind People

The self-driving car wouldn’t just benefit people whose disability is low vision. People who have low movement in their limbs or who have certain types of seizures may be able to benefit from self-driving car technology. Perhaps even people with hearing and/or speech impairments could benefit as well, but I’m not certain. I’d need to know more about how the car works.

At any rate, it’s a fascinating development, and it will be interesting to see whether Google does choose to market the car heavily toward people with disabilities. Even though self-driving cars are currently legal in Nevada, the Google car still needs extensive testing. It won’t be on the market for quite some time.

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Podcasts Now Available

I’m experimenting with a plug-in called Odiogo, which produces podcasts of my posts. You can even subscribe to them on iTunes using the “Listen to Posts” button on the right side of the screen,

The plug-in is by no means perfect. I thought that I would be able to record the podcasts myself, but a male, computerized voice reads them. It’s not bad, as far as computerized voices go, but some of the nuances get lost.

I’m hoping that it will do until I can find an alternative, though. Thanks for your patience.

Sarah

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“Disturbingly One-Sided” – Annette Corriveau and the Right to Kill

I wondered why I was hearing Robert Latimer’s name recently. It turns out that on Friday there will be vigils Annette Corriveauaround the United States, in cities including New York, Washington, Chicago, Boston, Tampa, Fla., Fort Worth, Texas and Portland, Ore.,  for people with disabilities who have been killed by their caregivers. But it’s been the profile of Annette Corriveau on “16 x 9″, a program run on Canada’s Global Television Network, that’s put Latimer (and the question of “mercy killing” for people with severe disabilities) in the spotlight in Canada again.

For those that don’t know Robert Latimer, he was convicted of second degree murder when he put his daughter, Tracy, in the cab of his pick-up and killed her using carbon monoxide. Tracy was twelve years old and had severe physical and intellectual disabilities due to cerebral palsy. Robert, convinced that she was in unendurable pain, said that he didn’t want her to have to deal with it anymore. Normally a second degree murder conviction carries a life sentence in Canada, but he was released from prison with life on parole in seven years.

Annette Corriveau, according to “16 x 9″, is very much where Latimer was when he made the decision to kill Tracy. She wants to right to kill her two adult children, Jeffrey and Janet, both living with severe disabilities due to San Filippo syndrome and institutionalized for most of their lives. She made the decision that this is what she wanted to do when it became necessary to feed them via feeding tube so that they won’t choke. She doesn’t believe that they would choose to live like this, so she would like the legal right to end their lives.

Annette Corriveau and Robert Latimer Got to Speak…

I get that it’s very difficult to watch your child’s health and abilities keep deteriorating, especially when they’re in pain. Tracy was having seizures that routinely disconnected her hip. It had to have been terrible.

And I know that there’s little support in every way in Canada for caregivers of people with disabilities. There’s very little respite money or opportunities available. Supports are being cut back everywhere. The struggles are difficult to talk about. It’s a tough, often thankless job.

Additionally, for parents who are looking after children with severe disabilities, there’s always that mourning for the dreams that they had for the child. That’s why I’ve always liked “Welcome to Holland”, a story with which I’m sure many of you are familiar. http://www.our-kids.org/Archives/Holland.html

I recognize that this sort of parenting is very difficult, and empathize with the parents. However…

Who Speaks for Jeffrey, Janet and Tracy?

The “16 x 9″ profile was, as anti-euthanasia activist Alex Schadenberg said, “disturbingly one-sided” http://alexschadenberg.blogspot.ca/2012/03/taking-mercy-case-for-euthanizing.html  . It was riddled with ableist language and assumptions. The staff that work with Jeffrey and Janet on a daily basis, that would be able to testify to the ways in which they communicate, were not interviewed.  The reporter did not challenge Annette Corriveau at all on her conviction that her children do not want to live the way they are (just because she felt that she would not choose to live if she was living that way), or ask if she’s worked with the facility in which they live to take steps to make their lives more “bearable”.

For example, it was brought up several times that Janet has not left the facility in over 20 years, but the reporter never asked Annette Corriveau if she’d worked with the facility to try and arrange some trips out into the community.

The documentary obviously took the stance that what had happened to Jeffrey and Janet was horrible and that no one could blame Annette Corriveau for thinking the way she was, like she was the victim of some cosmic tragedy that no parent should have to endure…and therefore jusified in stopping her pain in whatever way she could.  After all, as the reporter pointed out, more than half of Canada and most of the jury actually supported Latimer’s actions while the trial was going on.

I find all of this profoundly disturbing.

Reporter: “Is any of this about you?”

Listening to the interview with Annette Corriveau, and the interview with Latimer that was included in the segment, I had no doubt that these parents love their children. But I don’t buy that Latimer killed Tracy (at least solely) to ease her pain, or that Annette Corriveau wants to kill her children out of concern that they wouldn’t want to live that way. I think it’s more about parents that can’t stand dealing with the pain that their childrens’ “suffering” causes *them*. And when you don’t know how much someone is actually suffering, or what they’d like done about it (in Tracy’s case, at her age, no responsible clinician one would even have thought of asking her “Do you want to die?” if she’d not had an intellectual disability)…it’s just plain wrong.

Ask, don’t assume.

All people deserve the dignity of making their own life choices. No matter how *you* feel about what living their life must be like.

I can only be empathetic with the Robert Latimers and Annette Corriveaus to a point, and frankly I’m glad for it.

The whole “16 x 9″ segment is available for viewing here:

http://www.globalnews.ca/taking+mercy/6442597182/story.html

See the Council of Canadians with Disabilities’ response to the program here:

http://www.ccdonline.ca/en/humanrights/endoflife/euthanasia/letter-to-global-26March2012

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I Don’t Need Easy – Julianna Russell

I love working with teenagers. Granted, sometimes their behaviour sometimes frustrate the hell out of me, buJulianna Russelllt we need to remember that even in the healthiest of teenagers, their brains don’t fully develop until their mid-twenties. It makes the achievements of teens like Julianna Russell stand out even more.

Julianna is another person whose achievements need celebrating this International Developmental Disabilities Month. Born with spina bifida, at age 16 she discovered that she didn’t have enough feeling in her legs to operate the pedals in a car. However, determined to get her driver’s license, she researched her options on the Internet. After taking an adapted driving course and having her car outfitted with hand controls, she was able to get her license.

She also started her own website, I Don’t Need Easy, to share with other youth with disabilities how she did it and to give them a place to network and share other experiences of growing up with disabilities.

http://www.ledger-enquirer.com/2012/03/25/1983570/teen-creates-website-to-help-other.html

Relating to Julianna Russell

When I read Julianna Russell’s story, I thought she was wonderfully brave.

I got my driver’s license at 16 without any problem. But after my brain surgery, I started having seizures. The surgery left some scar tissue that just sent my brain into spasms. The first little while they were large seizures that came on with little warning (although I could usually say within a couple of days that one was coming on) and caused me to lose consciousness. Gradually, as my doctors fine-tuned my medications, the seizures became rarer and rarer – but I’d be awake through them as they happened. Eventually they became tremors my arm or leg so small that no one but me knew that anything was happening. It was at that point that my neurologist declared that I could start thinking about driving again, and wrote a letter to the Ministry of Transportation for me.

But by that point I’d been over a decade without a license. It was a terrible drain on my independence, yes. My town had no public transportation. I had to rely on taxis and the good nature of others to get anywhere outside of town. Having no license put me out of the running for most jobs in social services in the area. But I sat on the letter and the opportunity to start getting my license back…for far too long…and I’m not really sure why.

I knew I’d have to start all over again after such a long period without driving, but that didn’t *really* bother me. Something else was holding me back and, like I said, I’m not sure what it was. I have the first stage of my license now, though, and will be able to take my full driver’s test in February 2012.

But I can relate to wanting the independence of being able to drive oneself around, instead of relying on other people. Kudos to Julianna Russell for finding a way to get her license and for using her talent and abilities to share with others how she did it! I actually used her site to investigate adaptations to car steering wheels.

I Don’t Need Easy

Julianna Russell’s website is here: http://hstrial-dischallenges.homestead.com/index.html

It’s obviously just getting started, and hopefully she’ll get some more people post some stories. But for people (not just necessarily teens) with disabilities that want to drive and the people that are going to be helping them, it’s a good place to start getting information. Great job, Julianna Russell! Keep it up!

 

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My AVM Story: Little Springs

I admit it. I’m still celebrating spring.  It may be snowing on parts of the West Coast, but (for the moment) it feels like summer here.Curves gym

This is an essay from my 2006 book, “Run, Run Because You Can” about winter, spring, and recovery. Happy Friday!

Little Springs

Winter is long. It feels longer.

The snow blows long and hard, and sometimes freezing rain upgrades the walking conditions on the sidewalks from “somewhat dangerous” to “treacherous”.  For a person like me, who for a long time after the stroke relied on walking as my only form of cardiovascular activity, winter seemed the kiss of death to anything resembling an active lifestyle.  And as my weight continued to creep up and up, while my body got more and more able to move and stay upright on its own, I began to get restless.

A number of women I knew in the community had joined a Curves gym.  I had seen commercials for the US-based chain on television, and knew it was an all-female gym.  Members did a circuit of alternating cardiovascular activity and hydraulic strength training on machines in 30-second intervals for half an hour.  I asked around about the Curves gym, heard nothing but glowing reports, and was given a guest pass by a friend.

I didn’t think that I’d be able to get in and out of those machines that I’d seen on the commercials for Curves Gym, but I figured that even going in and doing some sort of cardio would be beneficial.  So I went in to the Curves gym in my community and talked to the owners, Kelly and Heather. Kelly took me through the gym, cane and all, patiently helping me in and out of (almost) all the machines to show me how they worked, while the other ladies who were working out smiled and just moved around me if they had to.  Kelly suggested that I avoid only two of the machines at first, for safety reasons, but was confident that I’d use them eventually.  She didn’t seem daunted at all by my medical history.  She merely suggested that I work out with supervision for a while to be sure that I didn’t fall, and even gave me a free month to see if the Curves gym was going to meet my somewhat specialized needs.

I went two times a week for a month, and joined.

Being able to move like that again, to swing my arms and move my feet to music and use the rhythm of the machines to make my arms and legs strong again, was one of the best things that anyone could have given me at that point in my recovery.  It wasn’t long before I was exercising without supervision, and even using one of the machines that Kelly had originally suggested that I hold off on.

Kelly and Heather had told me not to necessarily expect any benefit in terms of physiotherapy from my exercise at the Curves gym, but I saw them; my strengthened muscles made me faster, steadier, and that in turn made me move with more confidence.  And for the first time in my life I was becoming physically fit – even more so than I was before the stroke.

But there was still that one machine that I couldn’t use. I just didn’t have the physical dexterity to get into it, and my weak foot would not stay in proper position once I was there.  So I skipped the machine, doing extra reps on other leg machines to compensate.  It was a matter of acceptance – just as there are some days in the winter when the sidewalks are simply too dangerous for walking (for me, at least), there was a machine at the Curves gym that it wasn’t really safe for me to use.  No big deal.

However, one April day, Kelly came out of her office and looked at me thoughtfully.  “You wanna try the leg press today?” she asked.

“I don’t think I can get into it,” I said.

“I’ve been watching you, I think you can,” she said.  “Come on, I’ll walk you through it.”

And she did.  And I did, beating ten months the two years that she and Heather had expected me to take to conquer all the machines.

Curves gym was giving out that day, of all things, packets of wildflower seeds.  It was Spring, but still too early to plant anything outside, so Kelly suggested we plant in the seeds window boxes for now and move them outside later.  On the way home I stopped at the hardware store and bought medium-sized clay pots and a tiny bag of potting soil.  I just about put my back out lugging my purchases up the hill to my apartment.  But it was worth it to sit on my floor, hands in the soil and gratitude in my heart, celebrating all the little Springs in my life.

More about Curves gym:  http://www.curves.com/

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Today is World Down’s Syndrome Day

Who knew that World Down’s Syndrome Day could leave me feeling so torn?

On the one hand, I totally recognize the need for a day to raise awareness around Down’s Syndrome. People

World Down’s Syndrome Day

make a lot of assumptions about individuals with Down’s Syndrome and their characteristics, what’ they’re capable of learning, what sort of contribution they’ll be able to make to society…heck, we’re still battling parts of the medical community on whether babies with Down’s Syndrome are “worthy” of life. http://www.girlwiththecane.com/downs-syndrome/

And I do realize that I’ve been using International Developmental Disabilities Month as an awareness tool, as many people have. I don’t think that I believed that there’s anything inherently wrong with awareness “days”, “weeks”, and “months”.

Until this morning, when I intended to write a much shorter blog about this, and I wrote this: “Check out the website to see if any events are happening in your area. If there aren’t any events in your area, perhaps you have an idea of your own of how you could celebrate? Or of how you could move us closer to being a society that recognizes the potential and achievements of all people with disabilities, everyday? Just a thought.”

Celebrating World Down’s Syndrome Day Every Day

I don’t mean that people without disabilities go around with a huge pat  on the back everyday for the people in the lives with disabilities. I just mean that if somone with Down’s Syndrome impresses you with what they do, you don’t have to wait until World Down’s Syndrome Day to tell them, or to tell someone else. If you’re curious about what Down’s Syndrome is and how it affects someone in your life, you don’t have to wait until a World Down’s Syndrome Day event to get some information about it.

We should find out about the people around us and let them know what impresses us about them throughout the year (whether they have disabilities or not). It makes people feel good…and that makes us feel good…doesn’t it?

All that being said, it *is* World Down’s Syndrome Day. Visit the website and see if there’s anything happening in your area.

http://www.worlddownsyndromeday.org/

 

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First Day of Spring!

It’s March 20…the First Day of Spring.  It’s a good day for  me.

Winter, Winter, Go Away…Bring on the First Day of Spring!

I don’t live *so* north in Canada that winter presents massively undue hardship. I lived in Saskatchewan when I was a kid, and I have vivid memories of snow on my birthday in September…a Halloween where it was -35 degrees Celsius with the windchill…and the stories that we were told in school of the little girl who took her mittens off, even though it was sunny, and had her hands freeze off.

It really didn’t get that cold here this year (although it has in the past) and there wasn’t even a whole lot of snow until after Christmas. I don’t mind being cold. I can deal with being cold. I can even deal with snow, to a point. It’s when the snow becomes packed on the sidewalks, and freezing

first day of spring

Rachel and Gillian walking during their visit

rain starts to cover it with ice…or when there’s a brief thaw, and then everything freezes up again…that winter starts to hamper my movements. Not only is it slow-going over the ice, I can never tell how far down my cane is going to go into snow when I’m trying to use it support myself.

And while some businesses are very good about keeping their steps and ramps cleared of snow and ice…some aren’t. But that’s another post, for another day.

My sister and her husband were up here recently from their home in Southern Ontario (which got almost no snow this year). They went for a walk around the hilly area in which my father lives, with Baby Gillian. When they returned, my sister said, “There’s so much snow and ice on the roads! How do you walk around here?”

“I don’t, really,” I said, thinking about how much money I’d spent on taxis that winter.

Yay Spring!

So, I’m happy to have gotten through the winter through to the First Day of Spring, as I’m sure are many people in my community who use wheelchairs or mobility aids, or who just have balance issues and live in fear during the winter of falling on the ice. Right now we’re enjoying wonderful weather. The snow is gone from the roads and sidewalks. It’s prime walking weather. We can probably expect a couple of more snowfalls, and maybe another cold snap, but the ground isn’t frozen anymore, so it won’t stay.

The worst is over! Bring on Spring! Happy First Day of Spring!

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Hollywood News: Actors with Disabilities Not Playing Characters with Disabilities

actors with disabilitiesLennard Davis, a professor at University of Illinois at Chicago, wrote an interesting blog post recently about how wrong he feels it is that characters with disabilities on television and in movies aren’t being played by actors with disabilities.

http://www.huffingtonpost.com/lennard-davis/dont-apply-dont-accept-a-_b_1324731.html

Actors with Disabilities in TV and Movies

For what it’s worth, I’ve wanted to blog on the same thing for a long time. But I don’t watch enough current television to know which shows feature characters with disabilities and if they’re played by actors with disabilities. I’m aware that there’s a student on “Glee” in a wheelchair (played by an actor without disabilities), and a boy on “Parenthood” that has Asperger’s Syndrome (and I’m unsure whether the actor who plays him actually has Asperger’s). I can think of some characters from cancelled shows that had disabilities, but the only one I could say for sure was actually played by an actor with a disability was Corky on “Life Goes On” (played by a young man with Down’s Syndrome).

Movies are easier. I can think of lots of movies in which actors without disabilities play characters with disabilities: Leonardo DiCaprio in “What’s Eating Gilbert Grape?”, Juliet Lewis in “The Other Sister”, Sean Penn in “I Am Sam”, Gary Sinise in “Forrest Gump”…and that’s just off the top of my head.

Davis did his research thoroughly, though:

“The facts are that there are about 600 repeating characters in prime-time television, but only six characters are disabled; only one disabled actor plays any of those roles — even though disabled people make up almost 20 percent of the population. In most films, there will be no disabled actors, and when there is a disabled character, it almost always will be played by a non-disabled actor.”

Davis compares it to white men doing blackface, in the process taking away roles from actors with disabilities that really want a career in acting. And for those who think that’s going a little too far, consider how true that really is.

Very Few Roles for Actors with Disabilities

I’ve always loved the theatre. I was very involved with my high school’s drama club, I went to musical theatre camp every summer, and I got involved with my community’s little theatre group when they did musicals. I took dance lessons, and some singing lessons. My sister was the same way. Our parents took us to as much theatre as they could afford, because we obviously loved it.

In university, everyone was much better at theatre arts than I was, and I couldn’t get a part in anything. But I still went to see everything that the drama department put on. I took drama courses.

Not long after becoming mobile enough to get around reasonably with my cane in my home community, I went to see a high school production of “Grease”. After it ended, I stayed behind for a bit and walked around on the stage. It suddenly hit me that the only play I’d read that had a character with physical disabilities was “The Glass Menagerie”, and that I probably wouldn’t be performing again.

I started to cry.

Davis’ point is that there aren’t many roles for actors with disabilities, and we don’t need competition with actors who don’t have disabilities for the small number of roles that do exist. I agree. However…

Wouldn’t It Be Wonderful…

…if, as a person with a disability, I could walk with my cane into an audition, do it, and have someone say, “You’re perfect for this part, so now the character uses a cane?”

Uses a wheelchair?

Is hearing-impaired?

Has a guide dog?

Or, conversely, someone with no disabilities auditions for a part where the character has disabilities, but the director likes him or her so much that she decides not give the person disabilities?

It potentially changes the story, yes…but theatre people do that all the time. They switch a character’s gender, or the time period, or the location, to see how it changes the story, and it brings out sides of the play that helps everyone to appreciate it even more. Who’s to say it wouldn’t work for television or movies?

See the person first, not the disability. Very simple.

All That Being Said…

I appreciate Lennard Davis’ “clarion call” to cast actors with disabilities in roles where the character has a disability. Until we get can get to that place where “people first” is truly a fundamental value, it’s a way of showing actors with disabilities that we value their contributions and of getting them more employment in the entertainment community.

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A Bit of a Feminist Rant for a Friday, and Why I Now Feel Better

feminist

For David, Marc, Marsha, and Tracy…and Phil Rockstroh

A Very Good Day

In many ways, yesterday was a very good day.

The business that I’ve just opened, Running Steps, (http://www.runningsteps.ca/) is being very well-received. I got some very positive feedback yesterday on my website, and I may already have a small writing job. Talking about my business on Facebook has put me in touch with some old friends to whom I haven’t spoken in years, and doing some other marketing has brought some new friends into my life.

I had a very enjoyable lunch with my father and I got some adorable pictures from my sister of my now seven-month-old niece, Gillian. I know that I’m biased, but I think that she might just possibly be the most adorable baby ever:

And Yet… (Here Comes the Feminist Rant)

I did get myself good and upset, however, about some of what’s going on in America (from a feminist standpoint).  Romney’s sudden decision this week that he would get rid of Planned Parenthood as President, coupled with a bill in Arizona proposing that employers have the right to require female employees to prove that they’re not using birth control for sex before covering it under health plans, left me feeling sad and angry and…raw. It seems like a feminist nightmare. I don’t want my niece and the young girls that I’ve worked with in my career worked with growing up in a world where the most powerful nation in the world feels that women’s sexuality is something to be controlled, and where their bodies are war zones. I don’t want that trend spreading to Canada. Like the commentary I wrote on Britain’s Welfare Benefit Reform legislation, none of this affects me as a Canadian – except that it does.

Thankfully, I have friends, both male and female, that eventually talked me down from the shaking, teary mess that threatened to overwhelm me several times during the day.
And eventually I found something, from brilliant essayist Phil Rockstroh, that spoke to me as disability advocate, a feminist…and just as a person:

https://www.commondreams.org/view/2012/03/14-6#.T2EvdphYajI.facebook

My take-away from this essay was the following, and it’s something that I think I’ll come back to again and again…especially on days where I feel powerless, or where I feel like my small efforts to make a difference in this world make no difference at all:

“How then is it possible to withstand feelings of powerlessness? Put one foot in front of the other. Write one word after the next on your protest sign. Make your life a flaming arrow aimed at the dry and rotted heart of the system or make your own heart a warm hearth of compassion for its victims, as you negotiate its cold realities. Thus, hope becomes a process of engagement, not a comforting lie; not the stuff of public relations hustlers and political hacks but a quality of honest conviction and persistent labor; and not a cynical marketing tool.”

Thank you, Mr. Rockstroh. I needed that.

Happy Friday

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