Tuesday, 5 May 2020

A Tribute to a Lifelong Friend & Mentor, Henry Unrau

Two weeks ago (already, unbelievably!) I lost my lifelong friend and mentor, Henry Unrau, when he lost an incredibly courageous year-long battle with cancer.

Because of the current restrictions on public gatherings due to the COVID-19 pandemic, Henry's memorial has been postponed until these restrictions are lifted. Consequently, the "normal" pattern of grieving to which I have been accustomed in my life, has suddenly become non-applicable. Because of this--and because tomorrow is not guaranteed for any of us--I am posting a piece I wrote about Henry shortly after WE earned OUR Ph,D. in 2003.

  My “Powered by Henry” Education

I have known Henry for over twenty-five years–90 percent of my life, and about 40 percent of his life... Man, are we getting OLD!!  He served as Assistant Principal and then Principal of Glenrose School Hospital from its inception in 1966 until 1986.  Because I was born with a severe form of Cerebral Palsy (I am a quadriplegic who has significant speech and vision impairments, and requires the use of a motorized wheelchair for mobility), I attended Glenrose from Kindergarten through Grade Twelve.  At the time of its inception, Glenrose was the first school of its kind in North America in that it brought together a wide variety of disciplines for the education and rehabilitation of students with disabilities. Like many of my fellow Glenrose students, I benefited greatly from Henry’s tireless efforts to ensure that Glenrose was a school where the focus was on ability rather than disability, and where we were treated, not as “patients,” but as “students.”

During my junior and senior high school years, Henry became my mentor. While never minimizing the reality or magnitude of the obstacles facing me, he constantly supported me in my efforts to go out into the so-called “real world” and strive to become a contributing member of society. During my years at Glenrose, it was Henry, more than anyone else, who helped me learn how to deal with both success and failure. My very first success as a beginning writer came when I was in Grade Eight. A local radio station selected a short story I had written for broadcast on a program featuring the work of student writers. From this point on, Henry was absolutely convinced that l had a brilliant writing career ahead of me, and took it upon himself to make sure l had plenty of opportunities to develop my new-found talent. He constantly encouraged me to pursue my aspirations of becoming a writer despite the rather formidable obstacles imposed on me by both the severity of my physical disability and the general lack of public understanding regarding issues of access and accommodation. Lest I got a swelled head from such constant encouragement, Henry also took great delight in pointing out the OCCASIONAL spelling mistakes that cropped up in the articles that he had me write for the Education Department’s monthly newsletter.

It was my keen interest in writing that originally prompted me to consider the possibility of attending a regular school. Because there were so few students remaining at Glenrose for high school by the early 1980s, traditional classroom instruction at the high school level was no longer feasible. Hence, students remaining at Glenrose for high school had to rely on correspondence courses. Since the idea of taking English by correspondence didn't particularly thrill me, I agreed that it would be a good idea for me to take English at a regular school. ‘How hard could it be to find a school?’ we all thought, ‘after all, it was only ONE course.’ As the work of finding a school began, however, we encountered many more obstacles than had ever been anticipated. The two main obstacles we encountered were inaccessibility and attitude; either it was physically impossible for me to get into the school, or they simply didn't want to take on a severely disabled student. Finally, we found a school that was physically accessible and an English teacher who was willing to take me on. Unfortunately by the time I went to register for my class in September, the teacher who had agreed to take me had left the school so I was assigned to another class.  When I met the teacher, I could sense that she was very uncomfortable with me. The next day, we got a phone call from the principal of the school telling us that the English teacher had come to him in tears, saying that she just could not handle having "someone like me" in her class. I was devastated. It was the first time in my life that I felt truly dehumanized because of my disability.  I really dreaded going back to Glenrose on the first day of school that year. I couldn’t help feeling that I had let everyone down, especially since I knew how hard people had worked to get me into that school in the first place. As I had feared would happen, the first person I ran into that day was Henry. Well here it comes, I thought, the big ‘DON'T LET THOSE TURKEYS GET YOU DOWN’ speech. But he didn't say a word about what had happened with the English class. Instead, he asked me how soon I could have my first article for the newsletter ready. Not quite able to decide whether to be relieved or offended by his apparent lack of concern about the traumatic disappointment that I had just experienced, I made some remark about him being the only teacher I knew who would start giving assignments BEFORE CLASS ON THE FIRST DAY OF SCHOOL! With a big grin, Henry replied, "With a writer as good as you around, I'd be slacking off if I didn't put you to work!" The message came through loud and clearI was the exact same person that I was before the school rejected me; and if I thought that he or anyone else at Glenrose thought any less of me because of what had happened, I had another thing coming. 

After I completed high school, many people were rather skeptical about my decision to enroll in an undergraduate program at the University of Alberta, given the extent of my physical limitations. Henry, however, expressed faith in me and confidence that I would be successful in attaining my goal of getting a university education. Not only was Henry instrumental in helping me get to university, his ongoing and very practical support has been a crucial factor in helping me get through university. When, in the last year of my undergraduate Honours English program, I needed someone to take over the reading of course material onto tape for me, he volunteered to take on the job. In the ensuing nine years, he has single-handedly taped virtually all the required reading for both a Masters and a PhD in English. My estimate is that this equals a total of approximately 2,000 hours of reading.

Probably the thing I’ve come to appreciate most about Henry’s reading is the little (or sometimes not-so-little) editorial comments that he would insert into the reading just to make sure that I was still awake. One of the most memorable instances of Henry’s editorializing occurred just over a year ago. At that time, I was barely halfway through my dissertation, and I had just had a medical problem discovered that could have potentially prevented me from completing my PhD altogether. To make matters worse, I found myself having to slog through this horrifically long, postmodernist, jargon-laden article on George Eliot’s use of body parts. But then, suddenly, in the midst of my existential crisis, I noticed a change in Henry’s tone of voice on the tape–a change which usually signalled a forthcoming editorial comment. But instead of launching into the usual lengthy, but always entertaining, diatribe on the incomprehensibility of academic criticism, Henry simply observed, “You know, Heidi, I think Louis Armstrong said it much better.” And then he promptly burst into an Armstrong-like rendition of “The Dummy Song!” I couldn’t believe my ears! Henry–the guy who, whenever we had our school-wide Christmas-carol-sing at Glenrose, always used to hide out in his office–was SINGING ... ON TAPE, YET!!! I immediately burst into laughter, laughing harder than I had in months. I thought to myself, “Henry’s singing! Now, I really have witnessed the IMPOSSIBLE! ... If he can SING, I just might be able to get through the PhD!”

And, just a few months ago, in April of 2003, I did successfully complete my PhD. A few weeks before my graduation ceremony, I threw a surprise party for Henry and invited many of his former colleagues from Glenrose. The theme for this party was“This is YOUR PhD TOO, Henry.” At this gathering, I officially proclaimed my PhD to be my “Powered by Henry Degree.”

I know that, for the rest of my life, every time I find myself writing “PhD” after my name, I will be reminded of how blessed I am to have had a “Powered by Henry” education.

Thursday, 19 July 2018

Latimer Redux -- Before We Talk PARDON, Let's Review, Shall We?, Part 2 -- Who is the REAL Robert Latimer?

Originally published in The Western Report on September 4, 1995, the following article by Joe Woodard offers some interesting insights into Robert Latimer’s history with, and possibly his learned method of dealing with, the law…


The judge who sentenced him for rape now calls him salt of the earth

In mid-July, the Saskatchewan Court of Appeal ruled against Robert Latimer's appeal of his second degree murder conviction. The three-judge panel unanimously upheld the decision of a jury in Latimer's original trial last November, where he was found guilty of killing his severely disabled 12-year-old daughter, Tracy. But one of the appeal court judges, Chief Justice E.D. Bayda, disagreed with the ten-year minimum sentence. He asserted that it was "cruel and unusual" punishment in Latimer's circumstances. He also recommended a "constitutional exemption" from the minimum sentence, based on his reading of Latimer's character and motivations. Because of Justice Bayda's dissent, Latimer is now free to appeal to the Supreme Court of Canada. In the meantime, he is out on bail.

In his dissent, Justice Bayda describes Robert Latimer as "typical salt of the earth...a devoted family man...loving, caring, nurturing." The "tragically disfigured" Tracy was "born clinically dead and need[ed] to be resuscitated" and thenceforth lived in constant pain. When Latimer put his daughter in his truck and piped lethal exhaust gases into its cab, he was "motivated by love, mercy and compassion..." Justice Bayda also noted that "the appellant has no criminal record. He poses no risk to society and requires no rehabilitation."

Latimer's record was indeed clean, despite the fact that he was convicted of rape in 1974. In May of that year, a jury in Battleford, Sask. found the then-21-year-old Latimer and another young man guilty in the rape of a 15-year-old girl in the nearby town of Wilkie on Sept. 8, 1973.

By remarkable coincidence, the presiding judge at Latimer's rape trial was none other than Justice E.D. Bayda. Thus, 21 years later, he would have been acutely aware of Latimer's clean criminal record, because the rape conviction was overturned on appeal when the trial judge was found to have erred in his handling of the case. The appeal court ruled that Justice Bayda had not permitted sufficient examination of the girl's previous sexual history, and that he'd hurried the jury's deliberations. The case was sent back to Battleford for retrial, but the Crown declined to prosecute anew.

The appeal court decision effectively quashed the public record of Latimer's rape conviction, which is why it was not brought up at his murder trial and appeal, nor will it be heard at his Supreme Court hearing. "I question the relevance of a 21-year-old charge," says Latimer's current lawyer, Mark Brayford.

While it's odd that the judge who presided over the rape trial that found Latimer guilty would now describe him as "salt of the earth," there are other aspects of Justice Bayda's assessment of the murder case that confound people like Saskatoon doctor Sheila Harding, herself the mother of a disabled child. "We only have his wife's word that [Latimer] was a good father, that Tracy was born dead, and that she couldn't be given pain-killers for her dislocated hip. What do we really know?"

Knowingly or unknowingly, Laura Latimer did introduce some inaccuracies into her husband's murder trial--and they were echoed in Justice Bayda's later dissent. "At birth, Tracy was healthy, with good APGARs [a test of newborns' vital signs]," says Richard Snyder, director of child development at Saskatoon's Kinsmen's Children's Centre. "She had to be resuscitated later her first day, but lots of babies do. And she could be given analgesics for her pain." Dr. Snyder surmises that Tracy was probably always uncomfortable, but quickly adds, "I certainly don't think we can go around killing our children."

Wednesday, 18 July 2018

Latimer Redux -- Before We Talk PARDON, Let's Review, Shall We?, Part 1

Last week, multiple news outlets reported that Robert Latimer has submitted a letter to the Minister of Justice seeking a pardon or a new trial following his conviction for the murder of his daughter Tracy in 1993.  When I heard these reports, I, like many Canadians with disabilities, felt a sickening sense of deja vous.  

From the time Latimer was first arrested for killing Tracy, he  portrayed his daughter as little more than a suffering bundle of flesh. And, from the beginning, the mainstream media was quick to promote this image of Tracy. This monolithic mainstream  media portrayals of Tracy as constantly and intractably suffering continued throughout Latimer’s trials, even when testimony from Tracy’s mother and teachers clearly showed that Tracy was quite capable of enjoying her life. But two-and-half decades after Tracy Latimer was murdered by her father, some mainstream media reports about his petition for a pardon still described Tracy as a “bedridden quadriplegic,” despite the fact that Tracy rode the school bus to her school program right up until the weekend that her father murdered her.

So, in order to save myself many, MANY hours of typing, (not to mention possibly saving what little, if anything, is left of my sanity), I will, for the time being, be dedicating this blog  to posting previous-published articles which highlight what the mainstream media appears to consider inconvenient truths about Tracy Latimer and her life.

Tracy Latimer's legacy; What of other children with disabilities? What of aging parents with

Janz, Heidi L . Edmonton Journal ; Edmonton, Alta. [Edmonton, Alta]15 Mar 2008: A.19.

Thirteen-and-a-half years, two court trials and thousands of media reports after Robert Latimer gassed his 12-year-old daughter Tracy to death in his pickup truck, his legal saga has come to an end.

Late last month, the National Parole Board Appeal Division reversed a decision in early December by a three-person panel of the parole board that denied parole to Latimer, saying he refused to acknowledge his actions were a crime.

In a written decision, the appeal division said the denial could not be supported in law and a delay in releasing Latimer "would be unfair."

It said the circumstances of Latimer's offence were "unique" and it was unlikely he would find himself in a similar high-risk situation.

So, what have we, as Canadians, learned about life, death, and disability through the whole saga of the Latimer case?

In my mind, and in the minds of most Canadians with disabilities and their supporters, frighteningly little.

A chief reason for this, I would argue, is that so much of the mainstream media's coverage of the Latimer case has consistently been characterized by one-sided, often blatantly erroneous, portrayals of Tracy Latimer as an unfortunate, less-than-human being, whose pain-filled and burdensome existence was bravely sustained by her stoic and heroic parents. Indeed, most media stories about the Latimer case were, and are, constructed around the dichotomy of Tracy as a pain-ridden subhuman being versus Robert as a long-suffering, devoted parent.

The glaring problem -- and, indeed, the grave danger -- inherent in this typical mainstream media portrayal of Tracy Latimer as a perpetually suffering, subhuman being is that it flies in the face of Tracy's actual day-to-day lived experience, as it was revealed in the court testimony of her caregivers and even her own mother.

What's more, the apparently general public acceptance of this portrayal of Tracy Latimer blatantly ignores the experience of thousands of Canadians who live with severe disabilities and chronic pain, while systematically undermining the value of their lives.

Given the enormous stakes implicit in the Latimer case -- both for those of us currently living with disabilities, and for those of us who are still currently temporarily-able-bodied (TABs), -- I feel it is imperative at this juncture to critically compare the facts of Tracy Latimer's life with the one-sided image of her that has been constructed and promulgated by the mainstream media.

The Problem of Pain: One of the most common descriptors of Tracy Latimer is that she was in constant, unremitting pain. For example, the subheading of an article in the March 1995 issue of Saturday Night reads, "With his little girl in constant pain, Bob Latimer just couldn't see the point of any more operations. Enough was enough."

Indeed, a great number of mainstream media stories about the Latimer case were written in this vein. However, as Dick Sobsey, Director of the University of Alberta's John Dossetor Health Ethics Centre, has pointed out, the widely accepted notion that Tracy Latimer was in constant, unremitting pain is, in fact, an assumption that is fraught with numerous logical and factual inconsistencies: numerous sources printed a direct quote from Latimer's lawyer, describing Tracy as both in a "vegetative state" and "undergoing tremendous pain as a result of degenerative disease."

Since a person in a vegetative state is not conscious of or highly reactive to pain, it is difficult to understand how such a statement would be accepted without question. 

The fact that cerebral palsy is not a degenerative disease adds to the misinformation. In early accounts of Tracy's suffering, she was described as "wracked with bedsores" (Craig, 1993, Nov. 5) and no mention is made of a hip dislocation. Later, the hip dislocation became the source of her unrelenting suffering. Tracy Latimer was repeatedly described as being in unrelenting distress. Yet, in Mr. Latimer's confession, she was in no distress the Sunday morning that he killed her. 

One can't help but wonder how much of this kind of misinformation has affected the way in which judges and jurors have viewed Tracy as well, if only subconsciously. 

It seems at least a distinct possibility that, in describing Mr. Latimer's situation as "unique," members of the National Parole Board Appeal Division had in mind the idea that Tracy was in constant, unremitting pain when her father killed her. But the simple fact that Tracy was evidently well enough to attend school just two days before her death should raise serious questions about just how much pain she was really experiencing. 

Not Dead, Or Even Dying, Yet: Closely connected with the erroneous yet widely-accepted notion that Tracy was in constant, unremitting pain is the equally false idea that her condition -- i.e., her disability -- was progressive, and, ultimately, terminal.

Frequent though its appearances are in over a decade's worth of coverage of the Latimer case, this notion has its roots, not in any kind of empirical knowledge of cerebral palsy, but rather in the erroneous, yet culturally-entrenched, assumption that the presence of a disabling condition is intrinsically linked to a shortened lifespan, or at least to a low "quality of life" which is comparable to the "quality of life" of someone who is at the end of their life.

In other words, because Tracy had a severe disability, it was, in many cases, assumed either that she was dying, or at least that the "quality of life" that she experienced was so poor that she may as well have been dying -- or dead. 

Not Quite Human? It can, I think, easily be argued and demonstrated that the cumulative effect of these factual misrepresentations of Tracy's life is to turn her into a somehow less-than-human being, who was actually better off dead than living with such severe disabilities. 

This kind of subtext is readily apparent in the media's pat description of her as someone who "could not walk, talk, or feed herself." It is this assumption that Tracy's life was somehow less worthy -- if not completely unworthy -- of being lived that makes the Latimer case of enormous significance for all Canadians.

Even though Robert Latimer's legal saga is now over, the ripple effects of his actions will continue to be felt in this country for years to come. If the value of a person's life is ultimately contingent on a person's ability to walk, talk and feed themselves, what are we to do with the rest of our children with severe disabilities? And what of the growing numbers of our parents with dementia?

For me, as for thousands of other vulnerable Canadians, these are haunting questions. Our very lives depend on their answers.

Copyright Southam Publications Inc. Mar 15, 2008

Thursday, 9 July 2015

On a Death and a Deportation

As many people who will read this blog post know, I live in an integrated condo complex that has an on-site user-run homecare service, which provides personal care services to the circa 14 User-Members, who, because of our various physical disabilities, require these services in order to live independently in our own homes. Given the relatively small size of our homecare service, and the personal, daily involvement of our aides in some of the most intimate aspects of our lives, the User-Members and the staff have, over time, bonded as a unit, and consequently, we’ve come to function very much as a community—even a family, of sorts.

As with any family, the level of function/dysfunction within our group waxes and wanes over time. And, as with many families, it is particularly in times of loss and adversity that our little community comes together to share our grief and fight our battles. Over the years, we’ve had our share of both losses to grieve and battles to fight.  But rarely (thankfully!) have two major losses befallen us in one week, as they did last week.

On Monday, June 29, Brenda Moore, passed away in hospital, after spending just under 24 hours in ER. One of the founding Members of Creekside Support Services, Brenda was a lifelong advocate for the right of people with disabilities to learn, work, and live alongside their able-bodied counterparts. She was 59 years old and had Muscular Dystrophy. Given that Brenda had already blown numerous predictions about her life-expectancy out of the water (through sheer force of will, I think), and that she had been dealing with some complex health issues for the last few years, it would be incorrect to say that her death was completely unexpected. And yet,   the suddenness of her departure left us all reeling.

Just four days later, on Friday July 3,   Roscyl Carido, who had been working as an aide at Creekside for the past two years under the Temporary Foreign Workers program received a call from Canadian Immigration ordering her to get out of Canada that day. As with Brenda, Roscyl’s departure wasn’t entirely unexpected either, since she had come to Canada from her native Philippines for a two-year term, which had, in fact, now expired. However, over the last four months, Creekside Support Services had made no less than four attempts to obtain the Labour Market Impact Assessment  (LMIA) which was necessary to have Ms. Carido’s term of employment as a foreign worker extended. All four attempts were strangled in a web of bureaucracy. “It was VERY difficult to get information from anyone,” says Joy Gossel, Coordinator of Creekside Support Services, “The phone lines were very busy and the website does not clearly have the process laid out…  Citizenship and Immigration (CIC) is extremely difficult to reach.  They won't speak with you in person unless you have an appointment but when you can't get through on the phone to make one????”

Joy Gossel goes on to say that, notwithstanding the constant frustration that she had experienced throughout the process of trying to get Roscyl Carido’s TFW Visa extended, she was stunned by the abruptness with which Roscyl was ordered to leave Canada within 24 hours. “I was very surprised as the information we had received the day before was not the same as what we received Friday.” Gossel concludes, “This is not an easy process anymore - they've made it so difficult to understand - this is going to hurt people for sure.”

From where I sit, this has already hurt people. Creekside has lost both a founding member, and one of our most dedicated aides in a single week—one through death, the other through bureaucracy. Both hurt in different ways, of course. Ironically, the second loss seems even more senseless than the first. When she ran into my condo to bid me a hasty goodbye last Friday afternoon, the one thing Roscyl lamented was that she wouldn’t be able to attend Brenda’s funeral the next day.

Canadian Immigration trumps even death, apparently.

Wednesday, 25 September 2013

What People Generally *REALLY* Mean When They Talk About “Dying with Dignity”

The release this week of the deathbed video of one of Canada’s leading microbiologists, Dr. Donald Low has renewed calls for the legalization of physician-assisted suicide in Canada. In the video, Dr. Low laments that Canadians lack the “maturity” to enact laws which would allow people who are suffering, physically or mentally, with terminal illness to have their lives ended with the aid of a physician.

What I found striking about the reasons Dr. Low gave for wanting to assistance to end his life was that they did not revolve around uncontrollable pain, but rather they mostly had to do with the “indignities” that awaited him with the progression of his disease–“indignities” such as having to be lifted out of bed and carried to the toilet, or not being able to swallow and having to be fed through a tube.

As unpopular and uncompassionate as this will sound, I feel compelled to offer the following reality-check: As far as I can tell from this video, Dr. Low was a Temporarily Able-Bodied physician, who, like many, never came to terms with the temporariness of his ableness. Consequently, he would rather end his life than live even a few days or weeks with the kinds of limitations that hundreds of Canadians with disabilities live with (often quite happily, thank you) for years and decades. Frighteningly, Dr. Low’s able-ist views are now being amplified by scores of commentators who praise him for taking the same “common-sense” approach to assisted suicide that characterised his career as a physician. Although the concerns of people with disabilities and other vulnerable Canadians who oppose the legalization of assisted suicide are dutifully acknowledged by these commentators, it is clear where the sympathies of ‘average’ Canadians are expected to lay.

Being a Canadian with disabilities just got a lot scarier–again.