Disability in Québec and Canada, pt 1

In the five years I’ve been living in Québec, I’ve come to better understand how the differences between the American,  Canadian, and Québécois culture are reflected in policies toward people with disabilities.

I’m not going to cover it all here and now; it could occupy a Ph.D. dissertation.  But I want to start to lay out a few of my observations, so I can clear out my head, and think in a more organized fashion about it all.

The first thing I noticed upon arriving in Montréal, was the miserable state of architectural and transportation accessibility here.  I soon learned that the lack of access extended to programs and attitudes about disability; I felt as though I had traveled 30 years back in time.  The lack of access was surprising because I had held the stereotype that Canada was ahead of the U.S. on all matters of social policy.

It’s not as simple as saying that Québec and Canada are behind the times in terms of disability policy and access.  I was helped out here by a great article by Douglas Lathrop, which discusses some of the difference between disability policy in Canada and the U.S.  He describes how the lack of a civil rights culture, the parliamentary system, provincial control, and the over-all non-confrontational mindset in Canada have shaped the way disabled people live here.

Yet Lathrop’s article mostly focused on Toronto, the most Americanized city in Canada.  I am living in Montréal, whose history, culture and public policy are very, very different.  For that reason several factors may be added to the above list, including the residual deference to authority of a formerly colonized people who were also subject to the strictures of the Catholic church, a belief that the collective good takes precedence over individual needs, a strong desire to hang onto cultural artifacts, a somewhat defensive mindset, and a rebellious streak.

While English Canada dates itself from confederation in 1867, in many ways Québec dates itself from 1976, when the Parti Québécois first won a majority in Québec’s parliament, the National Assembly.  This was the moment that the Francophone majority in Québec was first able to implement policies which realized Québécois status as a distinct society within Canada.  Québec began to assert its independence from English Canada, sponsoring two secession referenda (both defeated, the second by the thinnest of margins) and demanding more power for self-governance.

So over the last 30 years, Québec has had to reshape its education and social service systems, which had largely been run by the church.  It has educated a generation of children in French, and created a bureaucracy which seems to be as much a “full employment” program as a system of governance and service delivery.  What is the place of people with disabilities in this new society.  I’ll talk about that next time.

Eluana Englaro

Eluana Englaro died yesterday.  She had been in a persistent vegetative state for 17 years following a car accident.  Her father petitioned and won the right to discontinue intravenous feeding and hydration.  She died a few days later.

The BBC is doing a talk program about it right now.  I should be listening, writing in, etc.  However I am overwhelmed and immobilized with emotion even listening to the horrible distortions provided in the discussion.

As a board member of Not Dead Yet since 2000, and a member since 1996, I am a long-time activist against physician assisted suicide for many reasons, first and foremost because it is implemented in a discriminatory fashion, only made available to (in fact thrust upon) people with disabilities.  The most basic objection goes; if assisted suicide is good for people with disabilities and “terminally ill” people, it should be good enough for everyone else.  The non-discriminatory course would be to eliminate all “suicide prevention” programs.  If, on the other hand, we have a public policy to discourage suicide, that should apply equally to everyone.

So here’s Eluana, who’s in a PVS.  This is often erroneously referred to as a coma by the media.  In fact, there is no clear information about her degree of consciousness, nor how much rehabilitation she has been given.  It turns out PVS (also known as Minimally Conscious State, or MCS) is a catch-all diagnosis which captures a wide variety of functional limitations, including conscious people with severe cognitive limitations.  Some of these people can swallow, some cannot and eat through a feeding tube in their stomach, or through an IV, some could swallow with rehabilitation training.  Some communicate with non-verbal means, some do not.  Those people whose families want them dead are apparently “burdens” on those families (though in general their care is paid for by the state).  The families say they would have wanted to die if they had been able to make such a declaration.  But usually there is no written statement to that effect, and the only witnesses to any alleged oral declarations, are the family members who themselves are now trying to have them killed.

This situation is complicated because it is happening in Italy, where the ultra-conservative pope and president have chimed in against withdrawing food and hydration.  Thus, the views of people with disabilities — the people directly affected by the issue, and who have the most sophisticated analysis of the moral and ethical questions involved — either go unheard, or are lumped in with the conservatives.  We are patted on the head and told (in a condescending tone) “there, there, you don’t need to worry about this, no one would try to do this to you.”  The subtext being that because the intelligent disabled people needn’t worry.  Bullshit.  The blond Jews ended up just as dead as the dark-haired Jews.  Besides, if we don’t say something stinks in here, who will?

So I’m frightened and pissed off (again) because every couple of days it’s a matter of life or death for us; whether it’s abuse of people with disabilities reported by the International Coalition on Abuse and Disability, or news of another eugenicist spewing his garbage, as reported by Not Dead Yet.  I wish I could be more articulate and less panicked when I hear these discussions, but at the moment, I can’t.  Maybe it’s the lack of people with disabilities in my everyday life to draw support and validation from, maybe it’s the weak, intimidated and disorganized disability community here in Quebec, maybe it’s the effect of everyday and ongoing discrimination.  I dunno.  But there it is.

Pornography is to…

Pornography is to human sexuality as professional wrestling is to sport.

Jerry Lewis Sucks — sign petition

I didn’t pay much attention to the annual Muscular Dystrophy Labor Day telethon until I got involved in the independent living movement, and met people who had been poster children.  I learned from them the humiliation of being drenched in pity, being considered less than human, and being commodified to raise money.  I had known that the money raised mostly went for “the cure” but I came to understand what that meant for people living with those disabilities, and that services, equipment and advocacy to improve the quality of life for people with MD were very hard to obtain.

The telethon is, in short, a big racket, which lines the pockets of administrators and researchers, while perpetuating stereotypes of people with disabilities as less than human, and needing to be saved from themselves.

So now the Academy of motion picture arts and sciences wants to give Jerry Lewis an award for being a great humanitarian.  The only problem is, the people he was supposedly helping — people with disabilities — think this is a very bad idea.  They have started a petition demanding that the award be withdrawn.

Jerry Lewis has done far more harm than good for people with all kinds of disabilities.  He’s also made plenty of sexist and gay-bashing remarks.  And worst of all, he was never funny.  This award is about non-disabled people patting themselves on the back at our expense, and we’re not going to go quietly into that night.

Obama-rama

Here are a couple of points about Obama’s election and inauguration that I don’t think have been widely mentioned yet.

First of all, there was a noticeable lack of accessibility in the ceremony, and the coverage.  Closed captioning was available on the internet, and may have been available for the televised coverage.  At the event itself, there was no interpreter on the platform; only in designated viewing areas, which required a ticket.  However English, as used in closed captioning, and American Sign Language, are very different.  People whose first language is ASL often have a hard time understanding written English, and using captioning only excludes any kids below the ages of 8 or 9 years.

An article in the Baltimore Examiner described potential accessibility problems at the inauguration, including the difficulty of getting to designated drop-off areas for people with disabilities, and the long distances people would have to walk to get to viewing areas.

I have to confess to a moment of schadenfreude while watching Dick Cheney trying to get around in a wheelchair.  Instead of bringing in a car with a lift, they decided to wrestle him in and out of a limousine.  At the Capitol building there were stairs everywhere.  It was impossible to figure out how he managed to get from the doorway down the stairs to the platform where the swearing-in took place.  The cameras “discreetly” cut away; almost as if they realized he had his fly open.  Maybe he did.

The other thing I wanted to say about the inauguration that I haven’t heard yet, is how the event resonates with the Mayan Calendar.  We are now in a “sixth day” of the cycle, a time of renaissance, creativity and flowering.  The collective feeling of joy and hope which was so apparent in the crowd in Washington, and around the world yesterday, is consistent with the evolution of consciousness the Mayan calendar represents.

If you’ve wondered about the apparent acceleration of the pace of life, technology, events, etc., and the sense of impending…something, just look at the Calendar.  Or you can think of it as the end of the Beatles song, “A Day in the Life,” where the orchestra builds up in a cacophony of sound to a crescendo and resolves in a resounding major chord.  It’s sort of like that.

Blindness stereotype

I was watching a movie the other night, and had to clue my husband in to a couple of inaccurate stereotypes about blind people.

First: I have never seen a blind person feel someone’s face.  I’m sure there are some who do, but it is NOT a common practice.  The blind people I know get the information they need through the voice, and the only people whose faces I ever felt inclined to touch were my lovers’.

The second stereotype was more an inaccurate depiction of cane travel — use of a white cane for mobility.  When climbing stairs, all you really need the cane for is to tell you where the step is.  Feeling all over the stairs is generally not necessary.  You can use the cane to judge height, or just over-compensate with your foot, bringing it down on the stair from above.

As usual, the blind person in the movie was symbolic; something like “even a blind person” could tell the main character was in trouble, while the sighted teacher, vice principal, landlord and social worker were too dense to figure it out.  Not the worse use of blindness in a film, I guess.

Puzzling it out

The other day I was on the subway, and having lost the thread of the stop announcements, I didn’t know where I was.  I looked at the signs in the station we entered, and my thought process went something like this:

Single word, short (eliminate several stop names)

First letter, angular, point down, “v” or “y” (no stops starting with “y,” eliminate the rest of the possible stops)

Answer: Verdun.

It occurred to me how much like doing a crossword puzzle that process is.  “Give me a short (five letter) word for a Metro stop on the west end of the Green line in Montréal that starts with V.”

I didn’t do crossword puzzles until about 10 years ago, when they became available online.  Before that I found it too hard to shift my gaze back and forth from the grid to the clues, given the amount of physical movement required.  Discovering crossword puzzles on line was a real joy for me.  Another benefit of the march of technology.

My thought process on the train made me think that, if my adaptive technique for reading is similar to a skill many people use already to solve crossword puzzles, the reverse application of the skill for dealing with the onset of a vision impairment should be both possible and comfortable.

This could (not) happen to you

On the December 13th edition of Saturday Night Live, Weekend Update did a parody of New York Governor David Paterson, concerning his selection of a candidate to fill the senate seat vacated by Hilary Clinton.  Though there were some political jokes made at Paterson’s expense, the primary source of humor came from the portrayal of Paterson as bumbling and stupid due to his blindness.

This raises the important issue of media portrayal of disability. The issue is important because the media are a primary source of information for non-disabled people about disability, and how  life will be if they become disabled.

Beginning with our fairy tales, we learn early that the bad guy is always the one with some physical mark of imperfection; a scar, a limp, a hump, an eye patch.  Though the Shrek franchise has offered an alternative way to look at these images, the cultural roots run so deep, the evil disabled villain lurks like a land mine in our collective psyche.

Add to that the pitiful image of disability peddled by the sponsors of telethons.  In an effort to “cure” the disability of the people they are trying to “help,” they portray the people as not fully human.  People with disabilities are portrayed as “prisoners,” eternally childlike, living (in the words of Jerry Lewis) “only half a life.”

Another land mine, which is triggered when someone approaches, or receives a diagnosis of, a disabling condition.

Back to Governor Paterson.  He objected to the SNL portrayal of him, suggesting that the SNL team failed to muster their talent to create genuine political humor, and simply fell back on the slapstick portrayal of his disability.  As in the film Tropic Thunder, cheap laughs at the expense of disabled people substituted for real creativity.

The portrayal of blindness in popular culture is similar to that of other disabilities; unrealistic and mostly negative.  Disability studies pioneer Colin Barnes has identified 11 common stereotypes, including portraying people as helpless, tragic, evil, sexually abnormal, bitter, burdensome objects of pity, and their own worst enemy.  These negative stereotypes are contrasted against equally-unrealistic “positive” depictions of disabled people as having extraordinary compensatory abilities, being “inspirational overcomers” (super cripples), or as angelic, childlike and quietly accepting of the “cruel fate” visited upon them.

Both these extremes objectify disabled people, making them something other than fully human.  These depictions deny the external barriers which are the true source of disability.  Finally, they make it hard to believe that disabled people could lead happy, fulfilling lives.

Civil rights movements for women, racial groups and others have made some progress in challenging stereotypes in everyday language, if only to label such stereotypes inappropriate.  Thus, expressions such as “indian giver” and “yellow-bellied” are barred by institutional policies designed to combat racism.  However, expressions such as “follow blindly” or “is deaf to his misery,” which equate disability with negative moral or personality traits, still go unchallenged, in part because disability is not seen as a civil rights issue.

On the other hand, these metaphors should not be confused with expressions like “see you later” and “let’s go for a walk.”  This usage does not ascribe negative traits to the physical characteristic, so there is no reason to avoid such expressions.

As noted by Dick Sobsey in his blog from the international coalition on abuse and disability, this kind of discussion always breaks down into an argument over “political correctness,” in which everybody is wrong and everybody’s right, so no one wins.  My position, as a person who is very humor-identified, is that resorting to tired stereotypes shows a distint lack of creativity.

As for the title of this post, blindness does not equal stupidity, lack of coordination, disorientation, misunderstanding or lead to the loss of sense of humor.  It does not turn people into dirty savages, as depicted in the film Blindness These points may seem obvious, but it’s worth saying, to defuse one land mine on the road of life.

A simple fix

This morning, the CBC program The current broadcast a story about a guy with schizophrenia who, upon turning 65, received a larger monthly stipend.  Unfortunately he was not able to keep his rented room because of housekeeping problems, so he was put in a halfway house.  But because he couldn’t stand the loss of his independence, he ended up back on the street.  Thus, the increased income did him no good.

The article portrayed the situation as a sad, but inevitable, conclusion.  However, it seems to me that, with the right supports (for example, someone to help him clean house once a week, and maybe cook a few meals, he could have remained independent.

Social services are generally not good at coordinatng among themselves to give individuals what they need.  They offer a set menu of services; if what you need isn’t on that menu, or not in the combinations they provide, you’re out of luck.

First things…

Welcome to Boomer Go Bust at  WordPress.com. 

One goal of this blog is to build a bridge between baby boomers, and the disability rights and independent living movements.  The disability rights movement has laid the necessary groundwork over the past 40 years to enable boomers to age in place, while Boomers have the potential to build on these changes to improve rights and access for everyone.  In this way, aging Boomers can hopefully learn from mistakes made in the past, and bring their substantial numbers to bear on making further progress.

Another goal, of course, is to help Boomers through the emotional and social changes that come with the onset of disability.  From being a generation accustomed to having it all, Boomers are not likely to take well to losing control over physical functions and life options; hence the oft-stated “I’d rather be dead than need help going to the bathroom.”

Consider the blog a public service, then, to head off a tsunami of crabby old people in overcrowded nursing homes.

A few things to keep in mind.  1.  Dignity is a matter of the spirit, unrelated to shit and piss, 2. disability is NOT a fate worse than death, 3. you can retain much more control over yourself and your environment than you ever thought possible, thanks to the work of disabled pioneers,  4. the problems you run into are more a product of the environment than your disability, and 5. the same values of social justice, peace, love and understanding you brought home from Woodstock can be applied to make your life better as an elderly person.

And one last thing, you don’t lose your sense of humor with your eyesight, hearing or balance!