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Saturday, 31 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 Global 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

Friday, 30 March 2012

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

It 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.

Wednesday, 28 March 2012

"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 around 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

Sunday, 25 March 2012

I Don't Need Easy - Julianna Russell

I love working with teenagers. Granted, sometimes their behaviour sometimes frustrate the hell out of me, but 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!

Friday, 23 March 2012

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.

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/

Wednesday, 21 March 2012

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 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/

Monday, 19 March 2012

First Day of Spring!

Rachel and Gillian out walking
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
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!

Hollywood News: Actors with Disabilities Not Playing Characters withDisabilities

Lennard 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.

Friday, 16 March 2012

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



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

Wednesday, 14 March 2012

Celebrating Developmental Disabilities Month with Inspirational Stories

What makes a home?

Developmental Disabilities Month: What is "Worth" Celebrating?


Today I spent a lot of time searching the Internet for another story like Dr. Jan Brunstrom's to blog on, as part of my continuing celebration of Developmental Disabilities Month. I know they're out there.

But today my search skills just weren't up to par and my Google search alert for news stories about disability just hadn't sent me what I'd asked for. I could find lots of stuff about Developmental Disabilities Month, but I couldn't find anything even approaching what I wanted to blog about: a story of a person with a developmental disability in a highly-respected profession, making a contribution to society that was going to make people really think about the assumptions that they held about about the capabilities of people with developmental disabilities.

In the process, I completely dismissed a story about a ninety-year-old woman with a developmental disability who'd made a new life for herself in a community home after spending most of her life in an institution. And later on in the day, that decision really caused me to think: Had I overlooked something that really *was* something that I wanted to blog about for Developmental Disabilities Month?

Life in the Institutions: A Bit of Background for Our Developmental Disabilitites Month Discussion


It wasn't so long ago that babies with developmental and/or intellectual disabilities were given a very grim prognosis. Doctors told families that the best way to deal with these children was to institutionalize them. The institutions weren't nice places.

Senator Robert Kennedy called the Willowbrook State School, an institution on Staten Island, a "snake pit" in 1965. At that point it was housing more than 2000 residents than it was supposed to, and some residents were being deliberately infected with hepatitis in order to find out more about the disease. Nothing was done about the deplorable conditions at Willowbrook, however, until Geraldo Rivera did a documentary in 1972 about what was happening behind the institution's wall. There's footage from the profile on the bottom of the "Home" tab at http://willowbrookstateschool.blogspot.com/ but be warned, it's very difficult to watch.

There's also an account on the same web page from a former resident of what life was like at Willowbrook State School (on the "A Voice Behind the Wall - A Look at Life Inside Willowbrook" tab) which is also quite eye-opening, but again difficult to read.

Familiar Stories


I recognize elements from the Willowbrook stories from stories that I've heard from stories about institutions in Canada during that period: abuse of all kinds, not allowing residents to have possessions, the lack of privacy and certainly the lack of dignity in the supports. I've seen people who used to live in institutions wolf down their meals, and been told it's because if you didn't eat your food fast in the institutions, you often got it taken away from you before you finished.

Institutional care, where is still exists (Ontario's institutions are closed, and most American states are moving in that direction; New Hampshire has closed all its institutions) had to move past this dark era and stop these abuses in order to keep operating. But that's not to say that abuses still don't happen. Additionally, from a disability standpoint, it's very problematic that people are still, in effect, warehoused in places where their opportunities for self-determination, community integration, and opportunities for building a fulfilling life are inherently (and severely) limited.

Celebrating Their Success


As I said, I've known people who lived in institutions. When they had to leave, some of them had been there many, many years. Some of them didn't have any family left, or had never known their family, so they went to live in community homes in towns where they didn't know anybody. They built lives, with the help of agency and natural supports, that were 180 degrees different than what they'd known in the institutions.

Even when change like that is totally for the better, it's very stressful. And when I think about what sorts of traumas some of these people may have endured in the institutions, that they may not even have the skills to even properly process, let alone communicate to others...I often wonder how they do as well as they do in their volunteer work and paid jobs and various types of living situations (from group home right up the spectrum to independent living).

Celebrate *All* Achievements During Developmental Disabilities Month


We certainly need to celebrate people like Dr. Jan Brunstrom during Developmental Disabilities Month. She does such wonderful work, and I want to find more people like her to blog about before Developmental Disabilities Month is over.

But we also need to celebrate the very real achievements of people with developmental disabilities who are thriving in spite of being part of some of the very worst that society has thrown at that demographic. They're still here - that's pretty darn amazing. Certainly worthy of inclusion in Developmental Disabilities month celebrations. I forgot about that this morning.

So, in light of that realization I came to today, and in further celebration of Developmental Disabilities month, here's the article about Virginia Hinson,  the 90-year-old woman that I glossed over this morning because her achievements didn't seem dramatic enough. My apologies to her.

http://www.voaky.org/Content-Conversion/DELETE/Sucess-Stories/Developmental-Disability-Success-Story

Sunday, 11 March 2012

Jan Brunstrom:The Cerebral Palsy Doctor is IN!


Jan Brunstrom: Helping Children with Cerebral Palsy Be the Best That They Can Be


I said that I'd celebrate Developmental Disabilities Month by celebrating the achievements of people with developmental disabilities. Well, I'd say that Jan Brunstrom certainly has achieved many things worth celebrating!

Jan Brunstrom is a doctor at St. Louis Children's Hospital, in the Pediatric Neurology Cerebral Palsy Center that she started in 1998. The twist? She has cerebral palsy herself.

http://www.ksdk.com/news/article/306823/3/In-their-shoes-The-cerebral-palsy-doctor-with-cerebral-palsy

The thing that I really liked about hearing about Jan Brunstrom is that she's ability-focused. In a world where supports are so deficit-focused (interested in hearing what the person can't do, rather than what he or she can do, to determine eligibility for supports), that's such a breath of fresh air.

And any program that encourages people not to use the word "can't" is fine by me!

Jan Brunstrom's program is very high regarded and sees over 2000 patients a year.   She's an  amazing example of someone a developmental disability making an excellent contribution to society.

Web Accessibility Note


For those interested in making websites more accessible for people with disabilities, be sure to check out the above link to see a current best practice.

It's very simple. The video is there for people that enjoy watching videos - but for people who have hearing impairments, the exact transcript of the video is directly below. You'd think that more websites would make use of this, but not many do, as it's time-consuming to produce transcripts.

However, consistent with anything produced with universal design in mind, having a transcript makes the content accessible for more people than just those with hearing impairments. People with slow connections, the wrong plug-ins, and server problems where the video isn't showing up can still access the content when there's a transcript for a video.

Just sayin'. :)

Thursday, 8 March 2012

New Abortion Laws in the US


It's not particularly light reading for a Friday, and for that I apologize. But given the high rates of sexual assault on women with disabilities, I just didn't feel that I could let the week pass without some comments on the new abortion laws introduced in the United States this week.

Let's Start With Virginia


Virginia governor Bob McDonnell signed a new abortion law stating that women undergo an ultrasound procedure before having an abortion. It does not have to be the transvaginal ultrasound that the bill originally proposed, which is extremely invasive and potentially retraumatizing for women who have been assaulted. But, in the name of having all the information possible to allow them to make an informed choice, some sort of ultrasound procedure is now mandatory.

http://www.cbsnews.com/8301-503544_162-57392796-503544/virginia-gov-bob-mcdonnell-signs-virginia-ultrasound-bill/

On to Oklahoma


The Oklahoma Senate approved a bill this week that says that doctors can now inform women that they have the right to hear the heartbeat of the fetus before the abortion is performed.

http://www.reuters.com/article/2012/03/07/us-oklahoma-abortion-heartbeat-idUSTRE82609J20120307

Implications of the New Abortion Laws for Women with Disabilities


I can hear people asking what the problem is with new abortion laws that put in measures that make sure that women are truly sure that they want to have an abortion before it happens.

My problem with the new abortion laws in the context of women with disabilities is two-fold:

My first problem with these new abortion laws is actually the same as the problem that I have with them for all women in general: There's an assumption that when the woman shows up at the clinic that she hasn't already done an amazing amount of thought and soul-searching over her decision and arrived at a painful conclusion that this is the right choice.

If any woman with an intellectual disability that I worked with become pregnant, especially as a result of an assault, I would have explored *all* available options and the pros and cons of each with her, keeping what I would have done in her shoes out of the process. And if she'd chosen abortion, there would have been extensive prep on the implications of her decision, what she could expect, and why some women sometimes change their minds before they go through with the procedure. I would *not* send her in there unprepared and wouldn't think much of any person who would.

My second problem with these new abortion laws is that these tactics are manipulative. I would assist a woman with an intellectual disability who wanted an abortion to truly understand what she was agreeing to before she went in. I would *not* resort to manipulative tactics designed to confuse her at the last minute. That's unfair, particularly to a woman with a disability that's affecting her reasoning or her emotions (like some serious mental conditions).

Let me be clear about this: It's not fair to any woman.

It's another assault on the vulnerable ones.

Abortion is still legal, so quit trying to manipulate women out of it, and reduce it by addressing the problem at its roots - finding ways to lower the phenomenally high rates of sexual assault on women with disabilities would be a good start. Put good, solid sexual education for *everybody* (including students with disabilities) in the schools. Settle this birth control issue once and for all in favour of women and their health.

Oh, if only I ran the world... :)

*Correction: I put this in yesterday, and I don't know why it didn't take. A reader informed me that the Oklahoma law actually *requires* doctors to inform the woman that she has the right to hear the heartbeat (even worse, to my mind). Thank you for pointing out my error, David.

Tuesday, 6 March 2012

Guest Post: Liz Davies Talks About Seasonal Affective Disorder

I don't talk a whole lot about specific mental disorders. But, as a person that experiences a bit of seasonal affective disorder myself, Liz Davies' offer to do a post on it really intrigued me. From a disability standpoint, seasonal affective disorder is extremely debilitating for many people and, like most mental conditions, still isn't discussed nearly enough.

Thank you, Liz, for continuing the dialogue.


Seasonal Affective Disorder: How to Perk Up During the Winter Months


Seasonal affective disorder, which is also referred to as SAD, is a condition that affects approximately 9 percent of the population. The symptoms of this disorder begin in late September and last throughout the winter months. However, it is important to note that a small percentage of people experience seasonal affective disorder during the spring and summer months. Although only nine percent of people experience this disorder many people experience a change in mood during the colder months. This could be to a variety of things but many people do not get to be in the sun as often or their exercise gets cut back.

Doctors have not been able to pinpoint the exact cause of seasonal affective disorder, but they do believe that changes in the circadian rhythm and a drop in serotonin can make a person more susceptible to developing this disorder. Seasonal affective disorder can be a very difficult to deal with, but there are a few things that people can do to manage this condition. Below are some ways that people can stay positive during with what can be a slower time of the year.

Exercise


Exercise is a natural antidepressant because it triggers the release of endorphins. Endorphins are often called the feel-good hormones because they have a calming effect on the body. People should make it a goal to exercise for at least 30 minutes every day. It is best to join the gym or work out at home with exercise DVDS during the winter months. Those who prefer to exercise outside should make sure that they wear layered clothing.

Eat a healthy diet


Diet alone cannot cure seasonal affective disorder, but it can help improve a person’s mood. Cantaloupes, apricot, kiwi, oranges and spinach are rich in the antioxidants that help boost mood. It is also important to make sure that one eats plenty of lean protein. Protein has been shown to increase alertness. Tuna, poultry, beans and peas are excellent sources of protein. Vitamin D is another nutrient that can help reduce some of the symptoms of SAD and cheer up just about everyone. Studies have shown that people’s vitamin D levels are lower during the winter months. A vitamin D deficiency makes a person more susceptible to developing SAD. Yogurt, salmon, nonfat milk and liver are rich in vitamin D.

Talk to family members or close friends


People should also make sure that they talk to their family members and friends on a regular basis. It is much easier for one to cope with the feelings of depression if communicates with his loved ones. If a person’s loved ones live a long distance away, he should call them or keep in touch with them via social media.

Exercising, eating healthy and keeping in touch with loved ones are just a few ways that people stay happy and healthy during the winter months!

Liz Davies is a recent college graduate and aspiring writer especially interested in health and wellness. She wants to make a difference in people’s lives because she sees how cancer has devastated so many people in this world. Liz also likes running, playing lacrosse, reading and playing with her dog, April. If you would like to contact her she can be reached at healthylizd@gmail.com

March is Developmental Disabilities Awareness Month

Autism is a developmental disability
The title says it all. March is Developmental Disabilities Awareness Month. What should that mean for us?

What is a Developmental Disability?


The definition of developmental disability changes slightly from state to state (and province to province, in Canada), but the definition used by the Developmental Disabilities Act of the United States is as follows:

"The term 'developmental disability' means a severe, chronic disability of an individual 5 years of age or older that:

1. Is attributable to a mental or physical impairment or combination of mental and physical impairments;
2. Is manifested before the individual attains age 22;
3. Is likely to continue indefinitely;
5. Results in substantial functional limitations in three or more of the following areas of major life activity;
(i) Self-care;
(ii) Receptive and expressive language;
(iii) Learning;
(iv) Mobility;
(v) Self-direction;
(vi) Capacity for independent living; and
(vii) Economic self-sufficiency.

5. Reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated, except that such term, when applied to infants and young children means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided."

(From http://www.md-council.org/resources/dd_definition.html)

Here are some examples of developmental disabilities:

  • Cerebral palsy

  • Epilepsy

  • Autism

  • Hearing loss

  • Down syndrome

  • Spinal injury

  • Brain injury

Developmental Disability Fun Fact, in Honour of Developmental Disabilities Awareness Month


Having a developmental disability doesn't necessarily mean that a person has an intellectual disability.

I'm surprised by how many people who work in my field don't know this. Many of the people with conditions on the list above are very intelligent. There's even a debate within some agencies that support people with autism whether they should be supporting individuals who have it without supporting documentation that these individuals have intellectual disabilities as well.

What Will Developmental Disabilities Awareness Month Mean for You?


I think that, for me, Developmental Disabilities Awareness Month will me doing pretty much what I try to do already, with a focus on developmental disabilities - raising awareness of what they are, celebrating the achievements of people who have them, and continuing to bust stereotypes where I can of people with developmental disabilities. Because it would be really nice if society got to the point where we didn't need a month for people with developmental disabilities, because they're just...people. Don't you agree?

Friday, 2 March 2012

Senate Tables Blunt Amendment, 51 to 48

It's been a significant week for setting legislation around the world, apparently. On the heels of Welfare Benefit Reform being voted in on Wednesday in Britain, the Blunt Amendment was struck down in the United States Senate on Thursday.

What is the Blunt Amendment?


For my non-American readers who may not be following the saga involved with this particular amendment, named for sponsor by Senator Roy Blunt, it's been at the top or near the top of American news for most of February. The Blunt Amendment was drafted to allow health insurance plans to be exempt from providing coverage for services that violate their religious beliefs. The example on which there has been the most focus is Catholic employer insurance plans providing coverage for contraception pills.

The Blunt Amendment was a response to an Obama administration ruling that all health plans provide free contraception.

Not Fair to Women


The Blunt Amendment wasn't fair because all it took was a company or insurance agency to decide that a treatment was against their religion to decide not to treat it. But in the case of contraception pills and Catholic employers especially, deciding not to cover the pills on the religious basis that they'd be used for non-procreative sex is unfair. Sometimes contraceptive pills are used for medical reasons.

Why Care About The Blunt Amendment As a Disability Advocate?


I've known women with invisible disabilities whose doctors put them on a contraception pill to deal with medical issues. They may work for Catholic agencies and be directly affected by legislation like the Blunt Amendment. And I know that sometimes young women with severe disabilities are put a contraception pill to help them to regulate their menstrual period each month and make the experience easier for them to manage. If these young women are receiving their contraception pill through a parent's insurance plan, a parent who works for a Catholic agency, and suddenly it becomes legal for the agency's plan to no longer provide contraception pills, that young woman's life is affected.

Plus, women with disabilities are still women! They need to be concerned about the erosion of their rights just as much as any other woman does.

It *Is* About Access


My friend Geoff and I have had a running argument about whether this is about access to birth control. He is as troubled by all this as I am, but in a different way. He, like Blunt, saw Obama's ruling that all plans have to provide free contraception pills as an assault on religious liberty. Women can still get birth control, he says. No one is stopping them. They just have to pay for it. And at $2 a day, is that really a hardship?

My point is that, depending on how much your job pays, $2 a day *could* be a hardship. And when you don't have the money to pay for something, that makes it a matter of access.

American Women Don't Have to Worry...For Today


Obviously there's more nuance to this debate than I can get into today. The important thing is that The Blunt Amendment was struck down in the Senate, 51 to 48. Three votes isn't much of a margin, though. It leaves me with the same feeling that I had when I read that Welfare Benefit Reform had passed in Britain:

It doesn't bode well for any of us.

More views on the Blunt Amendment:

http://www.foxnews.com/politics/2012/03/01/first-senate-vote-looms-on-obama-birth-control-policy/

http://www.csmonitor.com/USA/Politics/2012/0301/Blunt-amendment-brings-culture-wars-to-Congress

Thursday, 1 March 2012

Welfare Benefit Reform and a Sad Day in Britain

I wanted to blog today, but I really wasn't sure what I'd blog about - no topics were springing to mind. So I went to Twitter and went through my Twitter feed, to see what's going on in the world of disabilities.  I was shocked, and saddened, to see that the Welfare Reform Bill in Britain that so many people have been fighting so hard to have the government reconsider, passed yesterday.

How Will Welfare Benefit Reform Affect People with Disabilities in Britain?


The new legislation introduces benefit caps, will cause many people with disabilities to lose their benefits, and will push people with disabilities and their families further into poverty across the UK.

The government claims that Welfare Benefit Reform will give people with disabilities more opportunities to become independent from the system, but groups across the UK have concerns:

Church leaders in Ireland: "Those with the least capacity to suffer cuts should not be made to suffer more:  http://www.u.tv/Articles/Article.aspx?guid=58b137e2-4f0f-4315-804e-c5712d168345

"Benefit reform could put '6000 children into poverty'" - Wales: http://www.bbc.co.uk/news/uk-wales-politics-17182494

For a graphic description of what disability advocate Sue Marsh's life will be like now that Welfare Benefit Reform has gone through, see her blog entry, "A Post About Pooh":

http://diaryofabenefitscrounger.blogspot.com/2012/03/post-about-pooh.html

Why Do I Care About Welfare Benefit Reform?


I care because while I agree that these systems aren't designed to get people off of them, I don't believe that the solution is cuts that force people with genuine disabilities out into a difficult job market, especially at the expense of children's welfare.

I care because, as I've said before, I see the same attitude toward people with disabilities in America (and I'm seeing it in Canada too) as I do in Britain: drains on taxpayer money (when they're not receiving income support due to outright fraud). I believe that Welfare Benefit Reform is an unreasonable response to fraud rates that are actually quite low, despite how much we hear about them. They're low in America and Canada, too. And I'm scared that America and Canada are heading the same way that Britain is, in terms of welfare benefit reform.

I'm care because so much of what I hear about what will work, in terms of caring for people with disabilities, from people who haven't actually had to do it, just won't work. I remember a discussion with someone who said that we didn't need income support for people with disabilities, because communities and churches would just take care of people who can't care for themselves, if we'd just give them a chance.  I know that this doesn't work. But some people won't hear that.

I care because I have friends in Britain with disabilities, and I'm really scared for them.

I can't imagine how they're feeling today.