what i'm reading: the invisible kingdom: reimagining chronic illness

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke is a important book. I would even call it a landmark. 

For ten years, O'Rourke suffered from a debilitating condition that was either misdiagnosed or dismissed. Her search for answers forms the structure of this book. 

Although the author writes about her own experience, The Invisible Kingdom is not a typical illness memoir. It doesn't follow the familiar trajectory of illness-adjustment-recovery-lessons learned. O'Rourke uses her own story as a springboard to explore chronic illness from social, cultural, and political perspectives, intertwined with the personal story.

O'Rourke exposes how the American healthcare system, medical training, and culture conspire against chronically ill people, creating insurmountable obstacles and destroying lives. 

This book is a must-read for anyone struggling with chronic illness, but even more importantly, it's a must-read for health care practitioners. 

It's written in a US context -- a culture which worships individualism, where healthcare is not a universal human right, where both the amount and quality of care one receives is dependent on privilege. However, readers from countries with universal health insurance (that is, all other so-called "developed" countries) shouldn't dismiss this an American problem. While some conditions aren't in play, far too many still apply. At its core, this story is happening all around us, no matter where we live.

A complicated gaslighting

The Invisible Kingdom illuminates how the dynamics of conventional medicine obstruct and prevent people with chronic illness from receiving appropriate care. The issues fall into three categories.

Not being believed.

This is the one condition nearly universal to people with chronic illnesses and invisible disabilities: doctors discount and dismiss their patients' stories. When test results turn up negative, doctors -- at best -- shrug their shoulders and move on. At worst -- and frequently -- they assume that the patient is exaggerating, attention-seeking, or drug-seeking, or that their symptoms are the result of anxiety or depression. I venture to say that everyone -- and I do mean everyone -- with chronic illness has encountered this. A majority of doctors simply do not believe their patients. 

Instead of realizing or admitting that their diagnostic tests are inadequate -- that medical science is imperfect and incomplete, that it has not conquered every condition, that this patient's symptoms exceed either the doctor's own knowledge or the current limits of medical knowledge -- the doctor discounts or dismisses the patient. Rather than question the adequacy of the tests, the doctors question the validity of the individual's own experience. The Invisible Kingdom shows how one group of doctors who dealt with Lyme disease took this to extremes. They  

long seemed unwilling to acknowledge that patients were coming to them with their own knowledge. . . .  Instead of devoting compassion and energy to patients with persistent symptoms, many doctors focused on discrediting their testimony.

Hypochondria is a thing, as is Munchausen Syndrome. But those psychiatric conditions are relatively rare, and not difficult to diagnose. Most people do not seek the care of specialists for fun or out of compulsive need. It's exhausting -- physically, emotionally, and in the US, financially. The vast majority of sufferers are, in fact, suffering. Yet all too often, doctors attribute undiagnosed pain as evidence of a psychiatric condition.

More than one doctor told O'Rourke that "everyone is tired," or "it's normal to have some aches and pains as we get older". This was maddening to even read about! O'Rourke reminds us that most people have no trouble distinguishing between normal tiredness and all-encompassing, crippling fatigue. As she writes:

Just because a symptom is common -- and subjective -- does not mean a patient cannot tell the difference between a normal version of it and a pathological one, the way we experience the difference between the common cold and the flu.

I can't help but wonder why this dynamic is so common. One maverick autoimmune specialist O'Rourke interviews espouses the necessity of a personalized approach -- which is exactly the opposite of how western medicine operates.

Alongside the usual standardized protocols, [patients with unusual and persistent symptoms] clearly call for the tactics of personalized medicine, because the immune system is so complex -- and so individualized. . . . This complexity is a problem for the conventional medical system. . . . The conventional folks are very, very good at what they do. . . . But a patient with a constellation of symptoms that doesn't clearly fit a diagnosis is not somebody that they want to deal with. . . . Nothing is more threatening to who you think you are [as a doctor] than a patient with a problem you cannot solve.

Medical silos. 

As she searched for answers and relief, O'Rourke saw many specialists. Throughout, she was forced to coordinate all the results and manage her own care -- while enduring mind-bending physical pain, extreme fatigue, and the added stress of not being believed.

Insurance companies, and doctors who allow their practice to be driven by billing systems.

Insurance companies expect doctors to see patients for 10 minutes at a time, no matter what their needs, and to see massive numbers of patients every day. Chronically ill people can't fit their needs into this system, so the system shunts them to the margins. 

This is typically as true for publicly-funded systems as for private, for-profit healthcare. (BC's NDP government recently changed the provincial health authority's billing system in recognition of this barrier to care. It can be done!)

Alternative medicine may be useful, but is not a panacea

O'Rourke also sought help from practitioners of alternative or complimentary medicine. She had some good experiences, but she also brings a critical eye to this system. 

Complimentary medicine is typically very expensive, and not covered by insurance -- meaning, it is usually only available to people with privilege. Offerings run the gamut from those well supported by evidence to outright quackery. A person who is hurting and desperate, and who has been abandoned by conventional medicine, is easy prey.

However, alternative practitioners offer two things that conventional medicine does not: they believe their patients, and they have time for them. This is a powerful combination, and that power makes it a potentially dangerous (and incredibly expensive) path.

The mind-body link: a confusing picture

Complicating this picture is the undeniable link between the neurological system and the immune system. Simply put, our state of mind does impact our health. As everyone with chronic illness knows, stress can trigger and exacerbate symptoms. Yet this doesn't mean the illness is caused by stress, and it certainly doesn't mean our symptoms are psychosomatic or imagined.

It's a conundrum. Positive thinking will not make illness go away, yet negative thinking actually does make it worse. With some autoimmune conditions, hopefulness has been correlated with a lessening of symptoms. This confusing and seemingly contradictory reality can bolster the disbelieving doctor's suspicions. As O'Rourke's husband said at one point, "This seems like one of the hardest things about being sick in the way that you're sick: being sick makes you stressed. But being stressed makes you sicker."

O'Rourke writes about the growing field of psychoneuroimmunlogy: a new, greater understanding of the interactions between the nervous system and the immune system -- between body and mind -- is beginning to emerge.

One glimmer of hope is the emergence of autoimmunity centres, modeled on cancer centres -- a multidisciplinary approach, with same-day specialist appointments in the same facility, and cases discussed in a team setting. In her research (but unfortunately, not in time for her own illness), O'Rourke finds an automunine centre boasting 17 disciplines and a commitment to streamlined continuity of care. In this setting, physicians may spend hours meeting with patients and with one another, searching personalized answers.

Practitioners in this emergent field acknowledge that diagnostic tools are limited -- as they have been throughout medical history -- and that there is much medical science does not know. The research arm searches for more tools, while doctors from the clinical arm listen, believe, and brainstorm creative solutions.

Another sign of hope is the conventional medical community's recognition of long covid. Long covid has proven that medicine's understanding of viruses is flawed and incomplete. Many doctors are suffering from long covid, and this has apparently brought an ah-ha moment to treatment of viruses and autoimmune disease.

Social determinants of health

O'Rourke also reminds readers that systemic racism, substandard housing and nutrition, food deserts, intersectional bigotry, and other social determinants of health are always in play. As she fights for care, she is always aware that as a white, cis, educated, middle-class woman, she has access to care that so many others do not. Suffice to say that if the author found it nearly impossible to access appropriate care, we can assume that many others are left behind at the outset.

A story known to many

Meghan O'Rourke lost ten years of her life to this struggle -- ten years that should have been her most productive professional years, and her best childbearing years, as she did want to have a baby. She was in nearly constant pain, and subject to fatigue that made it impossible to function, with no way to predict or control when a cycle would strike. 

It's no wonder that O'Rourke became severely depressed, and at least one point, lost hope. That she continued to search for answers and function to whatever extent she was able is testament to remarkable inner strength, grit, resilience, and determination. Reading The Invisible Kingdom, I often thought of the original meaning of the Finnish word sisu (not the current, pop-culture meaning). Sisu is used to describe the Finns' national survival in the face of multiple Russian invasions. Meghan O'Rourke did the same.

I have never faced an illness as debilitating and mysterious as the one that O'Rourke writes about. But although my experience was more mild by comparison, the elements and the trajectory were very familiar. I believe most people with chronic illness, especially women, will also recognize the pattern.

I frequently say "I was misdiagnosed for seven years." But actually, my original diagnosis was correct. For insurance reasons, I had to see a different family doctor, and he threw out that initial, correct diagnosis, pronouncing it a "garbage can diagnosis" for a nonexistent syndrome. He decided I had a different condition. When my bloodwork did not confirm his diagnosis, he ignored the results. He supposedly knew of a cutting-edge treatment that was getting good results, and applied that to me. I now realize I was used in a long-term, nonconsensual treatment experiment. 

For seven years, I took the wrong medication, while my symptoms worsened and expanded. The medication negatively altered my digestive system and my metabolism. 

As my symptoms worsened, I became less active; eventually the joint pain became so severe that I was nearly sedentary. The wrong medication, inactivity, and stress-eating led to weight gain -- at which time my doctor declared that my joint pain was caused by my weight. In reality the cause and effect were exactly the opposite.

This doctor refused to refer me to a specialist, claiming a specialist would only confirm what we already knew. Of course, the insurance scheme included financial disincentives for doctors to make referrals.

I felt like I was falling apart. I felt desperate. Friends urged me to insist on a referral. When the doctor said I appeared to be anxious and stressed, and suggested I go on anti-depressants, that was the last straw. Once again, he was reversing cause and effect. I was anxious and stressed -- because I was in so much pain, and because he wouldn't help me. Not the other way around.

I insisted on my right to see a specialist, and the doctor finally wrote a referral. In one visit, the specialist made a diagnosis: the original diagnosis I had gotten seven years earlier, the one the family doctor threw out. I never returned to that family doctor, and I began the long road back to health. (If you are interested, the whole story is here. I share that link only in that it may help someone.) 

A vow of honesty

Meghan O'Rourke teases out the many threads that are woven into this story -- how an invisible, chronic illness impacts friendships, relationships, work life, family life, and worst of all, our very sense of self. O'Rourke is also a poet, and some of her metaphors and descriptions were too esoteric for me; other readers might find them exactly on point. Regardless, she brings a unique and compelling storytelling style to the issue. 

The Invisible Kingdom contains many reflections on illness, pain, and suffering from a wide spectrum of sources -- Susan Sontag, William Styron, Elaine Scarry, Barbara Ehrenreich, Alexander Pope, Bernie Siegel, Alice James, and Norman Cousins, among others, and a wealth of complex medical information rendered in plain language.

The book is equally notable for what it doesn't contain: there's no bright-siding. O'Rourke rejects "the wisdom narrative", where "illness is a vehicle for self-improvement and hard-won acceptance". She writes:

There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering.

It is difficult to look at the shadows of physical suffering clearly, because to do so, I know, is to risk inviting depression, or a terrifying apprehension that the world is made of pain. But when I was at my sickest, I resolved that if I got well enough to write about my experience, I would not give false assurances. I would not write letters reassuring those I loved that my life had not been utterly compromised. Now that I am somewhat better, I can tell you the truth: When I was at my sickest, my life was utterly compromised, and my very sense of self was gone. When I was less sick -- and there were periods of relief in my illness -- I could step back from the experience and take pleasure in the vividness of the blue sky from my bedroom window. But I will not repeat falsehoods; I will not say that wisdom and growth mean I wouldn't have it any other way. I would have it the other way.

judy heumann, rest in power

Judith Heumann, one of the founders and primary movers of the disability rights movement, died recently at the too-young age of 75. 

Judith Heumann was a force of nature. She was the consummate activist -- a brilliant communicator, a charismatic organizer, and a warm, compassionate, attentive person. Judy was the kind of person that made you want to do more, to be better. 

She is one of the leads in "Crip Camp," the brilliant documentary about a summer camp experience that radicalized a group of young people with disabilities, and became an incubator of the disability rights movement. If you haven't seen it, I hope you will. 

At the very beginning of my foray into the disability rights movement, I attended an event where Judy was speaking. I don't remember much about it -- we're talking 35 years ago -- but I remember being riveted as Judy spoke. She gave me so much clarity about the intersection of feminism, human rights, and disability rights -- that indeed they were all the same thing. 

Here are some obits: The New York Times, NPR, The Guardian. Judith's own website is here.

The headline from the NPR obit is "Activist Judy Heumann led a reimagining of what it means to be disabled". 

chuck close, rest in peace

The artist Chuck Close died last week at the age of 81. He was an incredibly talented artist, a progressive thinker, and a diehard New Yorker who was often seen around town, especially in museums and galleries.

I had the good fortune to interview Close at his studio in 1998. I saw a few paintings in progress, and had a glass of wine with him. The interview was for a cover story for New Mobility magazine, and at that point, a highlight of my writing career.

My interview with Close is notable, in my mind, for a foolish gaffe I made in the published story. Close said something off the record, then talked for a very long time, and I assumed the off-record part was very brief -- turns out it was the whole long story. 

He was gracious about it towards me, but furious at the magazine who allowed the story to run without checking with him first. The online edition was edited, but in 1998, print was still ascendant in the magazine world. 

The quote caused Close no small embarrassment, and of course I was embarrassed, too. But I was also secretly pleased that I was able to include an unvarnished truth that the subject preferred withheld. 

If you're interested, here's the story. 

ruth bader ginsburg, rest in power

 

These highlights of Ginsburg's decisions and dissents on the SCOTUS are a joy to read. I used two sources, and decided to keep the overlap. Many highlight the reason she was affectionately known as the Notorious RBG.

United States v. Virginia, 1996

In United States v. Virginia, Ginsburg wrote the majority opinion that would serve as a milestone moment for women’s rights and university admission policies. The case challenged a policy by the Virginia Military Institute that barred women from being admitted to the institution. Although the state of Virginia said it would create a separate educational program for women for the military institute, Ginsburg questioned its merits, writing that “Women seeking and fit for a VMI-quality education cannot be offered anything less, under the Commonwealth’s obligation to afford them genuinely equal protection.”

“Neither federal nor state government acts compatibly with equal protection when a law or official policy denies to women, simply because they are women, full citizenship stature-equal opportunity to aspire, achieve, participate in and contribute to society based on their individual talents and capacities,” Ginsburg wrote.

Olmstead v. L.C., 1999

The Supreme Court’s ruling in Olmstead v. L.C. proved a victory for the rights of people with disabilities. In the case, two women with mental disabilities were ordered to remain in a psychiatric facility even though some medical professionals believed they could live healthy lives in a “community-based program.” 

Ginsburg wrote:

States are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. 

Ledbetter v. Goodyear Tire & Rubber Co., 2007

Ginsburg famously dissented from the Supreme Court’s decision in the case of Ledbetter v. Goodyear Tire & Rubber Co, which ended up making it more difficult for workers to sue their employers over allegations of wage discrimination. 

The decision was so troubling to Ginsburg, she chose to read her dissent from the bench, which The Washington Post reported at the time was “a usually rare practice that she has now employed twice in the past six weeks to criticize the majority for opinions that she said undermine women's rights.”

"In our view, the court does not comprehend, or is indifferent to, the insidious way in which women can be victims of pay discrimination," Ginsburg said. 

Obergefell v. Hodges, 2015

The outcome of Obergefell v. Hodges was a major moment for same-sex couples and the rights of LGBTQ Americans. In the case, a number of same-sex couples sued their respective states over bans against same-sex marriages and not recognizing their legal marriages. Ginsburg’s vote helped overturn the marriage bans; legalizing same-sex marriage in every U.S. state. 

“We have changed our idea about marriage,” Ginsburg said during oral arguments. “Marriage today is not what it was under the common law tradition, under the civil law tradition.” 

Whole Woman’s Health v. Hellerstedt, 2016

In the case of Whole Woman’s Health v. Hellerstedt, the Supreme Court’s decision helped strike down the contentious H.B.2 law in Texas that imposed a number of regulations on abortion clinics, seemingly designed to deter women from obtaining the procedure, among other critiques. Ginsburg said at the time that “it is beyond rational belief that H. B. 2 could genuinely protect the health of women, and certain that the law ‘would simply make it more difficult for them to obtain abortions.’”

She added: “When a State severely limits access to safe and legal procedures, women in desperate circumstances may resort to unlicensed rogue practitioners, faute de mieux, at great risk to their health and safety.”

* * * * 

Shelby County

In a 2013 decision out of the court, Chief Justice John Roberts led a majority invalidating a key provision in the Voting Rights Act that required certain jurisdictions with a history of discrimination to undergo federal oversight before enacting any changes in voting procedure.

Ginsburg penned a fiery dissent in the case, pointing out that Congress passed the latest installment of the Voting Rights Act with "overwhelming bipartisan support," saying the representatives legitimately exercised their constitutional powers in doing so.

"The sad irony of today's decision lies in (the court's) utter failure to grasp why the (law) has proven effective," Ginsburg wrote.

It is the dissent in the Shelby case that grew Ginsburg's following in pop culture in recent years -- spurring the "Notorious RBG" moniker that morphed into a celebration of the justice's legal career.

She wrote that "[t]hrowing out preclearance when it has worked and is continuing to work to stop discriminatory changes is like throwing away your umbrella in a rainstorm because you are not getting wet."

Ledbetter v. Goodyear Tire & Rubber Co.

Some of Ginsburg's most blistering dissents came from cases involving gender discrimination and civil rights -- an issue she pioneered throughout her legal career.

In one such case, Lilly Ledbetter sued her employer, Goodyear Tire & Rubber Company, in 1999 for gender discrimination after discovering that over the course of her 19-year career at the company, she had received lower compensation than her male counterparts. She won the case in federal court in 2003 and was awarded $3.8 million in back pay and damages.

The tire giant appealed and the case eventually made its way to the Supreme Court. In 2007, the Supreme Court upheld a reversal of the federal court decision, ruling that because Ledbetter's claim was made after a 180-day charging period, she could not sue her employer under Title VII of the Civil Rights Act of 1964.

Railing against the all male, 5-4, majority, Ginsburg delivered a scathing dissent from the bench, a rare act by justices intended to demonstrate the strength of their disagreement. She accused the eight male justices of being indifferent to the gender pay gap.

"The court does not comprehend or is indifferent to the insidious way in which women can be victims of pay discrimination," she said, calling upon Congress to act where the court had not.

In 2018, Ledbetter recalled the role Ginsburg played in her landmark case in 2006, saying the justice's dissent from the majority gives her chills to this day.

"I get chills and goosebumps today just thinking about it ... knowing how fierce she was," Ledbetter said.

Hobby Lobby

In 2014, the Supreme Court ruled that certain for-profit companies cannot be required by the government to pay for specific types of contraceptives, such as methods of birth control and emergency contraception, for their employees.

In her dissent, Ginsburg wrote the court had "ventured into a minefield," adding it would disadvantage those employees "who do not share their employer's religious beliefs."

"Any decision to use contraceptives made by a woman covered under Hobby Lobby's or Conestoga's plan will not be propelled by the Government, it will be the woman's autonomous choice, informed by the physician she consults," the liberal justice wrote.

Ginsburg also noted the cost barrier that many women face in attempting to gain access to different kinds of birth control.

"It bears note in this regard that the cost of an IUD is nearly equivalent to a month's full-time pay for workers earning the minimum wage."

Obamacare's contraceptive mandate

In one of her more recent dissents, Ginsburg lambasted the court for "(leaving) women workers to fend for themselves," in a case where the justices struck down the Affordable Care Act's contraceptive mandate.

In July 2020, the court cleared the way for the Trump administration to expand exemptions for employers who have religious or moral objections to complying with the Affordable Care Act's contraceptive mandate.

"Today, for the first time, the Court casts totally aside countervailing rights and interests in its zeal to secure religious rights to the nth degree," Ginsburg wrote in dissent.

"This court leaves women workers to fend for themselves, to seek contraceptive coverage from sources other than their employer's insurer, and, absent another available source of funding, to pay for contraceptive services out of their own pockets," she said and noted that the government had acknowledged that the rules would cause thousands of women -- "between 70,500 and 126,400 women of childbearing age," she wrote -- to lose coverage.

When the case's oral arguments were being heard, Ginsburg participated from a hospital bed because of a gall bladder condition. Ginsburg also announced weeks after her dissent in the case that a scan the February before revealed lesions on her liver and she had begun bi-weekly chemotherapy.

Bush v. Gore

In the election of 2000, Florida was the key to presidential victory on both sides of the aisle. The voting process in the state was a mess -- with poorly designed ballots and counting irregularities abound. Both George W. Bush and Al Gore both declared victory in the state before election night was over, kicking off one of the most drawn-out election results in the nation's history.

The election quickly went from a decision steered by vote counts to one steered by the courts.

The bitter court battle first escalated up to Florida's Supreme Court, where a manual recount of ballots was issued. The order was appealed up to the US Supreme Court, where it was reversed and Florida's 25 electoral votes, along with the presidency, was handed to Bush.

Though Ginsburg was not on the winning side, she did not go gentle into that good night.

''I might join the chief justice were it my commission to interpret Florida law,'' Ginsburg wrote. ''The extraordinary setting of this case has obscured the ordinary principle that dictates its proper resolution: federal courts defer to state high courts' interpretations of their state's own law. This principle reflects the core of federalism, on which all agree.''

''Were the other members of this court as mindful as they generally are of our system of dual sovereignty,'' Justice Ginsburg concluded, ''they would affirm the judgment of the Florida Supreme Court.''

But while colleagues wrote they dissented "respectfully," as Ginsburg typically does, she said only: "I dissent."

* * * *

The deep mourning and existential fear that Ginsburg's death has triggered speak how even the thinnest veneer of democracy is hanging by the flimsiest of threads. 

She was a powerhouse, a model of truth-telling and integrity, a brilliant, forceful, and fearless mind. But the death of one elderly woman, no matter how beloved, should not strike such profound fear in the hearts of so many millions. 

And I've already seen an onslaught of posts blaming that fear on supporters of Bernie Sanders.

wheelchair rugby finals, parapan am games 2015

The 2015 Pan Am Games and Parapan Am Games were held in Toronto and the GTA this summer. Although I regard these events as a ridiculous waste of money, a very bad deal for residents of the host cities, there was one very bright upside for me: the opportunity to see some disability sports, nearby and at a very high level of play.

Mississauga hosted wheelchair rugby and goalball. I saw goalball at the 1996 Paralympics in Atlanta, and it is a unique and thrilling sport, played by blind athletes. Wheelchair rugby is irresistible, as millions have discovered through the excellent documentary "Murderball".

I couldn't get to goalball, but I snagged good seats to the wheelchair rugby finals, which eventually sold out. I went with a friend who had never seen - or even thought about - wheelchair sports before. When we got to the arena, we learned that the gold medal game was between the US and Canada, the same teams that face off in Murderball.

Bronze medal game: Colombia vs. Brazil

In the bronze medal game, Colombia played Brazil. The game started with dull, lacklustre play, not at all what we expected. It looked more like a trial game in a rehab centre than elite international play. But gradually, speed and strategy picked up.

One Colombian player began to dominate the court, not with size or strength, but with agility and finesse. (I think it was Jhon Orozco Nunez, wearing number 4, but I'm not positive.) He used his torso to pivot and swivel and wind his way through openings. The crowd noticed him and began to cheer his every move, and his game came on stronger and faster. By the last quarter, the stands were packed, and every time #4 touched the ball, the crowd went wild. (Also, Brazil had been cleaning up in the medal count, so many people were cheering against them, for the underdog.)

Brazil ramming crowd favourite #4

Despite our favourite #4, the teams were well matched, and the score was neck and neck throughout. In the end, Colombia won the bronze medal: final score 50-48.

Gold medal game: USA vs. Canada

By the time the gold medal game started, the stands were completely packed, a sea of Canada red with the occasional Stars and Stripes visible here and there. The North American players were noticeably bigger and more athletic looking than the South American players. My friend and I were both struck by the difference, leading us to speculate about the difference in healthcare, rehab opportunities, even nutrition and education. Most wheelchair athletes must travel in order to practice and play in tournaments. Depending on where they live, their opportunities to actually play their sport may be very limited.

The game was wild. The US took an early lead, with Canada playing catch-up right from the start, down four or six points. The American team was so strong, we felt that if Canada fell further behind, it was cooked.

Canadian Zak Madell

Just as #4 emerged as the crowd favourite in the bronze medal game, Canadian Zak Madell, wearing #33, quickly established himself as the dominant player. He seemed to either score or assist in every goal. Once he touched the ball he was virtually unstoppable, at one point frustrating four defenders to score. But every time Canada scored and threatened to tie the game, the US would edge further ahead.

Madell with the ball, as usual

In the third quarter, Canada finally tied the score, and the crowd went insane. The score seesawed back and forth, each team squeaking out a goal, then the other team answering with a goal of their own. Finally, with the crowd roaring, Canada took the lead in the fourth quarter, and held it throughout, winning the gold with a score of 57-54.

I ducked out before the medal ceremony, as it was already late and I was working the following morning, which gave me an out from the national anthem issue. (It looks very disrespectful when I sit for the Star Spangled Banner, then stand for O Canada.)

The gold medal wheelchair rugby game was the highest level of play I've ever seen in a wheelchair game. I took a ton of pictures, which are not very good - partly because I was not on the sidelines with a huge lens like the professionals, and partly from my inexperience with sports photography. But if you're interested, they are here.

things i heard at the library: an occasional series: #14

One of our regular Readers' Den customers approached me with her usual long list of movies. She researches movies online, prints out lists, and comes to the desk to see what we have in our collection. Anything we have, we place on hold for her.

She's a great customer, in terms of library use. She has an intellectual disability, and sometimes helping her can be a bit of a challenge. 

This customer talks very fast, and a little too loudly. While you're searching for one item, she's rattling off the next few, so after placing each hold, you must ask her to repeat the next title. Because she's reading from a list, the effect is a constant stream of chatter, from which you must pick out the movie titles.

After we had exhausted her movie list, she asked, "Is there a way I can do this myself, put on holds, from home?"

I know she uses a computer to research movies, and I know she checks her library account online to see which holds are available. I told her, yes, definitely, she can do this from home, and I'll show her how right now. She made some self-deprecating remarks. It was apparent that the prospect of learning something new was stressful for her.

We went to one of the public catalogue computers. I asked her if she knew how to log in to her own account, and she did that with ease. I asked her to search for a movie title, and she did that. Then I showed her how to place the item on hold. We did that a few times, and then she started talking.

"Want to hear a really sad story?" she asked. On the radio, a woman was talking about her son, a teenager. "He's like me," the customer said. "He's slow." At school, instead of being in class, the boy was working in the cafeteria, and washing teachers' cars. His mother didn't know. He was afraid to tell her, fearing he would get in trouble for skipping class. None of the teachers came forward to tell the boy's parents. Another special-needs student told her parents, who told this woman. 

Her son was being used as a slave. He was being deprived of an education, and working, without pay. Pretty clear human rights violations. Teachers and school administrators allowed this to go on - later, of course, claiming ignorance.

The customer said, "I thought those days were over. When I was in school, they used to call us re-tards, they kept us in a special class, they didn't teach us anything, they thought, why bother to teach these re-tards. But I can learn. I can learn. It just takes me more time. My brother taught me to use a computer." Then she said, "I could teach this boy. I wish I knew him, I would teach him, I would show him that if I can learn, he can learn, too."

I was struggling to maintain some professional distance, to avoid tears. 

Later, I looked for the story online, but realized it was not necessarily recent. The customer might have heard this story anytime. Because she identified so strongly and felt so compassionately towards the boy in the story, the story remained fresh to her. 

I wondered, too, about her earlier self-disparaging remarks, wondered what had ingrained anxiety and fear so deeply that the mention of learning - anything - triggered that response. 

* * * *

Back at the information desk, I learned from a colleague that some staff find this customer somewhat annoying. I don't at all, and the colleague who shared this with me - who also loves movies and enjoys helping this customer - doesn't either. She reminded me that we all have our own irritations, different buttons that customers unknowingly push. 

I would like to take this more generous view of my co-workers... but I can't. Bias against people with disabilities is rampant. I feel so strongly about our library being accessible to as broad a range of people as possible, and I see how this customer needs us. Hearing that some staff dislike her raised my hackles.

I later wondered if perhaps the customer already knows how to place holds, and perhaps just wanted to extend our interaction. Or perhaps she knows how to search the catalogue but is still wary of taking another step. Either way, it's okay with me. That's what we're there for.

kind of a not-funny story: ned vizzini, youth fiction, and suicide

It's so hard to talk when you want to kill yourself.

That's the first line of Ned Vizzini's excellent 2006 youth novel, It's Kind of a Funny Story. By the time I read the book this year, the author was already dead. Vizzini committed suicide last December; he was only 32 years old.

Those facts alone are tragic. But now that I've read this book, I find Vizzini's death even sadder. On some level, I chide myself for that: every person's life is of equal value, and every early death is a loss. But we feel the way we feel, and Vizzini's suicide feels, to me, inexpressibly sad, a monumental loss.

Vizzini wrote youth fiction in a natural, straightforward voice, with deep insight and wry humour. It's Kind of a Funny Story is a slightly fictionalized account of the onset of the author's depression as a teenager, and the five days he spent in the psychiatric unit of a hospital in Brooklyn, New York. It's a funny book, often poignant, sometimes very moving, always very honest. It's an excellent book, and was made into a very good movie in 2010.

Vizzini's work touched the lives of millions of young people. We can be sure that untold numbers of teens and young adults with depression recognized themselves in Craig Gilner, the intrepid narrator of It's Kind of a Funny Story, who is trying to save his own life, trying to believe that his life is worth saving.

Vizzini was a very talented writer, and was hugely successful. He found the kind of success as a youth author that I used to dream of - that I worked very hard for, but did not achieve. It's easy to speculate that Vizzini's early success contributed to his depression, but I think those easy answers are just as easily wrong. He was depressed. He sought help, he got help, but eventually his depression overwhelmed him. This happens to successful people, and it happens to people whose depression prevents them from ever achieving success. It happens to talented people, and it happens to ordinary people. For every Ned Vizzini, David Foster Wallace, and Anthony Lukas who kill themselves, there are thousands more, whose names we never know.

Suicide is called many things: cowardly, selfish, crazy. I find all of these judgements strange, and wrong. One of my little missions is, when I hear or read someone speaking ignorantly about suicide, to  always counter with a more compassionate perspective. Empathy really shouldn't be too difficult: imagine being in so much pain that death seems like the only option.

There is another thing about suicide: shame. In most western countries, suicide is among the three leading causes of death of people between the ages of 15 and 44, and the second leading cause of death between ages 10 and 24. And these figures do not include suicide attempts, which are much more frequent. (Figures from WHO and NIMH.) Most of those deaths also represent survivors: the loved ones left behind. I know many people whose lives have been touched by suicide, including my own and my partner's. Yet it's still rarely spoken of. Many families still change the cause of death in obituaries and fabricate stories for family history. Attitudes about mental illness have changed and are changing, but the stigma associated with suicide speaks to how much work remains.

I wish Ned Vizzini was still here to write more great teen novels, or to do whatever else he wanted. I hope his work has made life a little more bearable for some of his readers.

what i'm reading: the fault in our stars, a truly great novel for youth and not-youth

I am in the middle of reading The Fault In Our Stars by John Green, a book almost too painful to read but impossible to put down. It's achingly funny, profoundly insightful, and utterly heartbreaking, all at the same time. The Fault In Our Stars is supposedly a youth novel, but please don't let that stop you from reading it. It is simply a wonderful book.

Hazel has cancer, and her life expectancy is short. Augustus is a cancer survivor, and has the prosthetic leg to prove it. Hazel and Augustus, two smart, funny, and otherwise ordinary teenagers, fall in love.

How do you cope with cancer as a teenager? How do you cope with love when you have cancer? How do we humans love when we know that our loved one will one day die? Why are we so helpless when our loved ones are in pain? Hazel and Augustus live through all the universal questions of love and loss, and all the universal questions of adolesence, all at once, and with a pronounced urgency. If that sounds sad, it is. But it's also witty and irreverent and funny, and wonderfully sweet, although never sentimental.

Indeed, The Fault In Our Stars is anti-sentimental: it is something of a fiction version of Bright-Sided, skewering society's standard responses to cancer, especially to sick children. Green digs deeper to expose the guilt, the fears, the isolation, and the other-ness faced daily by young people with illness and disability. I found these moments searing in their accuracy.

At the same time, Green reveals the love and joy that might be otherwise obscured by our sadness and sympathy.

The story is narrated by 16-year-old Hazel, and the voice feels unerringly authentic. Hazel Lancaster joins Roddy Doyle's Paula Spencer as Exhibit A in the Good Writing Knows No Gender proof.

When I put this book on hold at my library, there were more than 200 people waiting to read one of the 30 copies in the system. IMDB tells me that the movie adaptation will be released next year. I hope John Green makes a big pile of money and continues to write such masterpieces.

wmtc rebooted

I was in the middle of writing a post about my plan to get back into an exercise routine... when I broke my foot. Doing almost nothing. Walking along in the mall, on my way to get my hair cut and then go to work, my ankle turned over sharply. I was horrified, thinking it was yet another ankle sprain. But no... turns out it's a three-part fracture in my foot.

I was worried at first: if I could break a bone just by walking, is there a problem with my bone density? Are my bones becoming fragile? But I've learned that fractured foot bones are very common among people who have a history of ankle injuries. Every time your ankle turns over, a ligament pulls at those small, friable bones in your foot, weakening them. This was an accident waiting to happen.

I was very sad and frustrated at my ruined plans to be more physically active. But before long, those feelings were replaced with relief that this happened after our trip to Spain and not before.

I'm in a walking cast, like a ski boot, so as far as fractures go, I'm pretty lucky not to have the inconvenience of a plaster cast. I spent a good portion of my early teenage years on and off crutches, an experience that permanently changed my perspective on life. Now, hobbling around the house with a cane, I'm remembering what it's like to be less mobile, to have one or both hands used for stability so you can't carry things, how long it takes to get things done. We live in a house with three floors and no bathroom on the ground floor, so life will be a bit more challenging for a while.

* * * *

This is another opportunity for me to praise Canada's excellent public health care system, and to remind us that Ontario's coverage should be further expanded, not continually reduced. My doctor took x-rays, found the fracture, and sent me to Urgent Care, where (after a wait), I was fitted with a temporary plaster cast, and given instructions about visiting the Fracture Clinic the following day. At the Fracture Clinic, I was seen by the orthopedic surgeon on duty, a specialist who does nothing but treat fractures. They gave me the walking cast, scheduled a follow-up appointment, and here I am.

This would have all been "free" - paid for by our taxes - but Ontario covers only plaster casts. Walking casts are out-of-pocket. If you have supplemental health insurance, you're reimbursed, and if you don't - as is increasingly the case - you're on your own. The friendly technician who made my temporary cast said that some people opt for plaster because they can't afford, or don't want to pay for, the walking boots. That's wrong. Everyone should have the same options, regardless of ability to pay. I'm sure in some cases this is regardless of desire to pay, not ability, but I don't like to see that two-tiered system creeping in. I'd much rather my taxes fund someone's increased mobility than fighter jets or worse, the Conservative Party's slush fund.

* * * *

Now, time suddenly has been returned to my life, time in which I had been planning on walking, hiking, swimming, or doing exercise classes on Roku. This seems like the perfect opportunity to write. If I'm successful, this blog will again reflect something other than my own small corner of my world.

marxism 2012 program notes: from each according to their ability: the role of socialists in disability movement

This is the final post of my notes from the 2012 Marxism Conference. This was the first Marxism conference to include a talk on disability, an exciting development full of potential. I wanted to blog about it in great detail. A friend was recording the talk, so I stopped taking detailed notes... and then the audio didn't come out.

Melissa Graham was kind enough to give me her notes, but the others didn't have anything written to share. What follows, then, is the general idea. What does disability have to do with capitalism and socialism? Where do disability and socialism intersect, how do they relate to each other?

* * * *

From Each According to Their Ability: the Role of Socialists in Disability Movement
May 25, 2012
Melissa Graham, Michele Macaulay, Patricia Reilly

Melissa Graham
Member of IS Canada, Social Worker, Disability Rights Activist, Wheelchair User

Melissa began by praising Marxism 2012 for being the first of the annual conferences to include a talk on disability, but emphasized that radical activism within the disability community is nothing new.

In the UK, the British Deaf Association and the National League of the Blind and Disabled were both radical groups. The NLBD was founded as a trade union in 1899. Members included blind war veterans, mainly working in sheltered workshops, who campaigned for better working conditions and state pensions. The league organized a national march of blind people on Trafalgar Square in 1920, carrying banners with a new slogan: "Rights Not Charity". Despite the small numbers, its aims were widely supported. The first legislation specifically for blind people was passed in the same year, followed by more in 1938.

Much later, in the 1960s, many people with disabilities started to reject being labelling as deviants or patients, and to speak out against discrimination. Inspired by many social movements, especially by the US black civil rights struggle, the disability movement really began in the US.

One example of this shift was the "Rolling Quads", a group of student wheelchair-users at the University of California Berkeley, who established the first Independent Living Centre in 1971. Within a few years, hundreds more ILCs were created across the US and other countries, including Canada. The Independent Living Movement opposes institutionalization and stresses self-reliance; through this, it has had a lasting influence.

These days the movement has shifted again. With the development of the Accessibility for Ontarians with Disabilities Act (patterned after the US's Americans with Disabilities Act), many organizations that were once active advocates now take their direction from government legislation, while they fight each other for funding. While there are individual activists rising to the challenge, the movement is still divided by disabilities and class.

Image from PeaceNews

The disability movement, said Melissa, needs to rebuild its history, to get in touch with its radical roots. The first-ever Disability Pride march in Toronto took place last year, calling attention to how austerity budget cuts disproportionately affect people with disabilities. The government thinks people with disabilities are compliant and quiet, and will swallow the cuts quietly.

Accessible transportation is a huge issue for people with disabilities, and an enormous obstacle to organizing. During the recent struggles in Quebec, many students with disabilities were afraid to strike, afraid of losing their grants. Many people with disabilities work for agencies funded by the government, and are afraid they'll be targeted and fired if they agitate.

The recession in the UK has hit disabled people hard. Massive cuts to public spending further reduce already inadequate - but vital - disability benefits. The cuts hit all working-class people; understanding disability discrimination can play a part in uniting resistance to the attacks.

All struggles for freedom from oppression share common ground with Marxism. Ironically, a primary source of oppression of people with disabilities is their exclusion from capitalist exploitation. Many disabled persons are unemployed or underemployed against their will. Their non-conforming bodies are deemed less (or un-) exploitable by the owners of the means of production. The ideal worker is one whose body can work like a machine for the ruling class.

On the other hand, people who receive disability benefits are routinely portrayed as cheats and freeloaders. Even though it's been shown that fraud accounts for less than one percent of benefits - and even though the benefits themselves take up a minute portion of the overall budget - the media and conservative governments create a perception of rampant fraud and waste. Melissa quoted a study in Glasgow showing that people in focus groups believed 70% of disability claims were fraudulent.

The UN Convention on the Rights of Persons with Disabilities (of which Canada was one of the last countries to sign) creates a paradigm shift: from charity to rights and inclusion. There is a very real fear that current and future austerity measures will drastically infringe on the rights contained in the CRPD - including social protection (Article 28), the right to live independently in the community (Article 19) the right to mobility (Article 20).

The European Disability Forum has been compiling data from across Europe on the impact of austerity budgets on people with disabilities. Cuts are affecting people's lives in very real, very scary, and very permanent ways, affecting people's ability to live independently. The cuts also contribute to negative stereotyping of people with disabilities. The language and messaging - describing disabled citizens as "expenditure items" and "drains on economic efforts" - further contributes to stigma and exclusion.

And yet in the UK and Canada, people with disabilities are better off than in many other places in the world, a very sad commentary. In many countries, people with disabilities live in a de facto state of apartheid. They are forced to the fringes of society, ostracized from things that many of us take for granted, such as getting a job or taking public transit.

So what can we do as a movement? Build connections. Reach out to people we see doing activist work, and connect with them through related struggles. One of the biggest barriers people with disabilities faced is isolation. Even when groups of people with disabilities do become active, it is rare for allies to reach out.

Melissa is a great comrade with a lot of energy and a wry sense of humour. You can read her blog here: B-tch on Wheels.

Michele Macaulay
Psychiatric Consumer Survivor

Michele described how the neoliberal governments of the past ended or defunded the office of psychiatric advocates in hospitals. Now there is no one in hospitals to ensure that people with mental illness are not mistreated, or retraumatized, or denied access to services they need.

The health care system is completely inadequate when it comes to mental illness. She described the attitude as "be quiet and take your meds". Michele spoke briefly about the anti-psychiatry movement, which I also heard about in this talk.

Lack of mental health services disproportionately impact low-income communities, racialized communities, aboriginal people - people dependent on the public system with no resources to opt for private care - and people who the dominant culture would rather not deal with. She described the anti-psychiatric movement as an "equity-seeking movement," with much in common with other people's movements.

Psychiatric survivors often can't find work, can't even get interviews, and are often put in "sheltered workshops" where they are paid below minimum wage.

I wish I could tell you more about Michele's moving and important talk. But sadly...

Patricia Reilly
Ontario Network of Injured Workers Groups

ONIWG is a nonfunded, grassroots group advocating for injured workers. Patricia described the history of workers compensation funds, and it was an eye-opening view.

The concept of workers' compensation - of a system whereby employees who were injured on the job could be compensated - arose in response to corporate complaints about workers' lawsuits. To get the compensation system, workers gave up the right to sue.

In the early years of the 20th Century, there was a great deal of social unrest, all over North America. In Canada, a royal commission created a system meant to quell that unrest, to alleviate the burden on families of caring for family members whose work left them disabled, and to protect companies from the growing unrest. The idea was to take care of people for as long as they were injured, including for the rest of their lives, if necessary.

The Harris Government destroyed all that. (For non-Canadian readers, Mike Harris governed Ontario from 1995-2002. In brief, he destroyed as much of the social safety net as he could. Most of the difficult and unjust conditions Ontarians struggle with today can be laid at the feet of Mike Harris.)

The Harris Government changed the Workers Compensation Board to the Workplace Safety Insurance Board. Think of the difference in emphasis; the agency's name change reflects a change in orientation. Where once workers were compensated, now workplaces are insured. Now, injured workers are left to battle it out with their employers through a system whose goal is to pay out as little as possible.

Under the Harris Government, the province's vocational rehabilitation program was first privatized, then discontinued altogether. The person who oversaw that change is now the chair of the WSIB.

With the change, the WSIB has overseen a 50% increase in claims denials, with $630 million in benefits cut, vocational retraining slashed from 19 months to nine months, a 30% reduction in permanent impairment awards, and similar reductions on every level.

Image from Diary of a WorkCover Victim (AU)

Patricia described the massive disconnect between disability brought on from workplace injury and the compensation system - how she lost her home, and cashed in all her retirement savings, in order to survive. This may sound familiar to US readers, who know these stories affect millions of Americans who lack basic health insurance. In Canada the bar is a little higher, but it doesn't cover nearly enough. A huge number of injured workers live in poverty. ONIWG's studies show that after injury, 80% of injured workers lost full-time employment, fully half lost their homes, and half were forced to rely on food banks for survival.

The Ontario Network of Injured Workers Groups are workers organizing to creat change. They run a speaker school to train people for public speaking, they hold letter writing campaigns, and they teach about the history and social basis of their work. Among their greatest allies are the United Steelworkers, Ontario Federation of Labour, and OFL President Sid Ryan.

From the ONIWG website:

What we are fighting for!

Reform of the Workers' Compensation Act and Policy and return to the founding principles.

Dignity, Respect and Justice must be the foundation for a renewed Workers' Compensation System. We want a new Workers' Compensation Act, with stated purposes to truly assist and compensate workers injured, made sick and disabled at work.

You can read injured workers' stories here.

* * * *

The discussion after this talk was particularly powerful. UK organizer Judith Orr spoke about how the cuts to social benefits have brought an increase physical attacks against people with disabilities, with government rhetoric legitimizing the idea, framing people with disabilities as "draines" on the system and freeloaders. People with disabilities are not considered valuable under a capitalist system, because they don't create profit.

Dr J said that the struggles of people with disabilities is the most damning indictment of capitalism - capitalism at its most raw. People need time off work. They need accessible transit. They need safer workplaces. They need shorter working hours that can still meet their material needs. But capitalism cannot accommodate conditions that do not augment the labour market, that do not create profit. If there's anything most damning about capitalism, it's this inability to deal with any deviation from the profit-making norm.

follow-up memo to children's aid: we told you so. happy christmas.

Back in May, I blogged about a family in my area who faced a nightmare: social services had threated to remove their child from their home. Both parents have disabilities, and although they had proved themselves completely capable of taking care of a baby, Children's Aid said they must hire round-the-clock assistance, or the family could not stay together.

When the story came to light, there was a huge outcry, not only from the disability community but from the general public, too. Children's Aid backed down, and, according to this follow-up story, has become their support and their ally.

Today, because reason won out over prejudice, the family celebrates its first Christmas together. I wish them a beautiful day.

from the archives: paralympics integration with olympics, the athletes' perspectives

Oscar Pistorius' historic run as the first double-amputee Olympic athlete has revived the ongoing discussion of whether or not the Paralympics should be integrated into the Olympics. (Stories in The Guardian, Slate, and on CBC's The Current.)

Integration sounds like a great idea, and on the surface, the fierce opposition of many athletes with disabilities may seem purely self-interested. The issues, however, are far more complicated than most mainstream media is willing to take on.

I wrote about this issue when I covered the Atlanta Paralympics in 1996, and I thought some readers might be interested. I uploaded one story through Google - Change, Growth and Exclusion: A Paralympic Identity Crisis - and a second story I found archived on the New Mobility website: Where are the Paralympics going? Both are written from the perspective of athletes with disabilities.

in defense of drugs: anti-depressant medication saves and improves lives

Friends, if this post sounds like a conversation we've had, please don't take it personally. I've had the same or similar conversations with many people. This is a subject that seems to arise periodically - here, on Allan's blog, on Facebook, in any forum I frequent. That's why I thought it was time to gather my thoughts and put them in a post.

The conversation is about the illness known as depression - also called clinical depression - and the treatment of that illness with anti-depressant medications. Every so often, an athlete or an artist will go public about their struggles with depression, or a new study about either the good or evil of anti-depressants will appear, and I find myself having this familiar conversation. Often, I agree with many of the arguments, but disagree with the conclusion.

I don't use anti-depressants myself, but many people I love do. I've seen anti-depressants, especially the class of drugs known as Selective Serotonin Re-uptake Inhibitors (SSRIs), do tremendous good. I've seen them change lives and save lives. Without these medications, many people I love would lead dire, desperate, lonely lives. In some cases, I don't think they'd be alive at all.

These are some arguments I've heard against the use of anti-depressants, and my response to each.

Big Pharma is evil. True. Pharmaceutical companies are purely profit-driven, and will stop at nothing in their quest for a fatter bottom line. They falsify data from clinical trials. They create biased studies driven by marketing. They re-package normal behaviour into "syndromes," then market drugs to treat the fake diseases. They are engines of the capitalist un-health system that has more incentive to perpetuate disease than to promote health. All this is true.

However, some people need anti-depressants in order to live decent, productive, balanced lives. And Big Pharma is where those drugs come from.

I've never heard the greed and deception of pharmaceutical companies used as an argument against taking medication for arthritis, diabetes, hypertension (high blood pressure), or any other chronic disease. Only for depression.

We don't know how they work. Somewhat true. It is known how SSRIs work, but it's not clear why different SSRIs have such different effects on different people. The chemistry of the brain remains, in many ways, uncharted territory.

However, "we don't know how it works" may be a partial statement of fact, but it's not an argument against taking the drugs. No one knows what causes fibromyalgia. But I know I have it and I know how it affects my life. Science advances unevenly. One day the medical science behind SSRIs may be fully known. Until then, why should that knowledge gap bother us?

They are over-prescribed. True. They are also underprescribed. I have no doubt that since the advent of SSRIs, some doctors prescribe medication for conditions that might be treated equally well (or possibly better, in some cases) with talk therapy, or perhaps not treated at all. At the same time, many people who suffer from serious depression could be helped by these medications, but won't take them, because of bias from their doctors, their families, or themselves.

The simple fact of over-prescription does not mean all prescriptions for anti-depressants are unnecessary. "Baby with the bathwater" caution applies.

Every mood does not need to be medicated away. True. But depression is not a mood. People who use anti-depressants to treat clinical depression still have bad moods. They still feel anger, sadness, pain, and so on.

Consider this. How many people would go to the trouble of seeing a doctor, asking for a prescription, trying different medications, struggling with the inevitable side effects, and so on, because they feel normal sadness? Generally by the time a person seeks help for depression, they have been suffering for a very long time. Just as these medications are under-prescribed, they are under-requested.

The drugs are institutionally abused. True. The United States Army hands them out like Tic Tacs to any soldier feeling the effects of trauma. Many hospitals use them routinely. This fact does not change the condition of people with clinical depression, nor change the fact that SSRIs help them.

There are side effects, some of them potentially dangerous. True. This is true for most, if not all, drugs. Each of us weighs the costs and benefits, the risks and rewards, of taking medication. When conditions are serious enough, most of us are willing to put up with some risk. This is as true for depression as it is for arthritis, diabetes, and high cholesterol.

Medication is a shortcut. The only real treatment for depression is talk therapy. First of all, what's wrong with shortcuts? The moral imperative to do things the hard way should be tossed in the trash next to the whalebone corset and carbon paper. More importantly, many people with serious depression cannot participate in effective talk therapy without first taking medication. Medical therapy and talk therapy often work together to produce real results.

A study proved they don't work. I've noticed that articles about anti-depressants often graft sensational headlines onto banal stories, or present skewed and sketchy non-arguments. The headline "Study Shows Anti-Depressant Drugs Use Placebo Effect" may sit atop a story saying that one-quarter of the people studied experienced no results. But it's already known that these drugs don't work for everyone. On a website promoting non-pharmaceutical medication for depression, I saw: "Only 1 in 4 had positive results with the first medication tried." That only tells us that most people had to try several drugs before they determined whether medication was effective or not.

People who use anti-depressants know that they work. A friend of mine who struggled with suicidal thoughts and uncontrollable sadness and rage every single day of her life is now a happy and productive person. Without the drugs, the black cloud descends. These are facts for millions of people.

Depression is not a disease. It's part of the human condition. It's a normal part of life. I submit that the person who says this does not understand what depression is, or else has experienced a form so different that it rightly could be called something else entirely.

To split hairs, everything that humans experience is "part of the human condition". Arthritis and diabetes are part of the human condition, but we don't suggest that people suffer and die from those chronic illnesses when they can be easily treated.

It is not normal to be unable to get out of bed every morning because one's limbs are weighed down with despair. It is not normal to fight thoughts of suicide, every day. It is not normal to find no pleasure in anyone, anything, any time.

I'm not suggesting that feelings of depression are never a normal and temporary state, a reaction to a tragic or traumatic event in one's life. But when those feelings persist over time, drowning out all other feelings, until life doesn't seem worth living, separate from any situation or event, something else is going on.

I tried them and didn't like them. I hear this often, and I think this response gets closest to the heart of the problem with all of these arguments - and with so many arguments. Our experiences are not universal. Each of us is unique. The word "depression" may be - probably is - used to describe several different conditions. Your experience with depression may be totally different than someone else's. It may feel different, and respond to treatment differently.

I suffered from depression as a teenager. I didn't have medication. My depression passed from a combination of events: leaving an abusive home, stopping or reducing recreational drugging, and talk therapy. But why should I assume that my experience will apply to anyone else? In the grand mosaic of humanity, nothing seems to be one-size-fits-all - not sexuality or worldview or learning style or anything else, including mental health.

A few assumptions underlie most of these are arguments.

One assumption is the persistent stigma surrounding mental illness and mental health. Very few people would urge someone with diabetes, arthritis, or hypertension (all chronic conditions) to not seek medical treatment. Most of us believe we should extend our life expectancies by using medications when needed, in addition to making whatever lifestyle changes we can. Yet so many people won't extend that latitude to mental health, and insist that lifestyle changes should be enough. Get more exercise, suck it up, and get on with your life.

Another assumption, as I wrote above, is the universality of our own experience. If you tried anti-depressants and they either didn't help you or made you feel worse, then surely you shouldn't use them. If your own depression passed without using drugs and you are glad for that, then so be it. The challenge might be to own your experience without trying to apply it to anyone else.

And finally, I believe that many of the arguments against the use of anti-depressants stem from a lack of understanding of what clinical depression is. It's not "the blues," it's not a moral weakness, it's not a deeper understanding of life, it's not the price we pay for living. For a view into that heart of darkness, I recommend reading William Styron's Darkness Visible, and The Noonday Demon by Andrew Solomon. These works bring you as close as you will ever come to understanding another human's experience.

memo to children's aid: people with disabilities can be capable parents

This story makes me so angry and frustrated. I can only imagine how the parents feel! I've reached out to some activists I know who are people with disabilities for suggestions on how we can support this family.

A disabled couple in Mississauga are fighting to keep their newborn son after social workers threatened to take the boy away unless he receives round-the-clock care from an “able-bodied attendant.”

Maricyl Palisoc and her partner, Charles Wilton, are the parents of a healthy month-old baby boy named William. Both parents have cerebral palsy, a disorder that limits their motor skills and slurs their speech, but has no effect on their cognitive abilities.

However, the Peel Children’s Aid Society is concerned about the couple’s ability to take care of their son and has expressed an intention to remove William from their home unless his parents secure 24-hour care from an able-bodied person.

The boy’s mother told CBC that she and her partner do not want to lose their son.

"We know that we need help, but we know that we are the best thing for our boy right now,” Palisoc said. "We both wanted to be parents and now we are, and we don't want do give anyone control of our family."

So far, the couple have been receiving the type of help that the CAS has demanded, thanks to Ryan Machete, a program co-ordinator with the Coalition for Persons with Disabilities, which provided the funds for the services since William's birth.

Machete said he’s not convinced it is necessary to spend $2,000 a week for a caregiver when Palisoc is able to change diapers, breastfeed and to “do the necessities” that come with caring for a newborn.

“From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do,” Machete told Metro Morning.

However, he said, it is possible matters will become more challenging as William grows, but that doesn’t mean she won’t be able to look after her son.

“I think that maybe when William grows up to be six years old and hurts his knee and needs his mom to pick him up, and he’s 60, 70 pounds, maybe that might be a little bit more difficult for her to do,” Machete said.

The Peel Children’s Aid Society says confidentiality rules prevent it from commenting on the case. The organization is due to meet with William’s parents on Friday to try to work out an arrangement.

canadian profile: justin hines

In the March issue of New Mobility, I have a cover story about Canadian musician Justin Hines. You can see it here.

I wrote this over my winter break - just as the library job came through! Not exactly the restful vacation I was hoping for. Fortunately I had a lot of help; Allan should really have a co-byline on this one.

The print edition looks terrific, full of great photos. It was a pleasure to interview Justin, he seems like a terrific guy. I add this to my profiles of interesting Canadians: Chantal Petitclerc, Stephen Fletcher, and the great Alyssa Manning.

For those of you who can't get enough of my scintillating prose, I posted this with the Children's and Youth Advocacy group at the iSchool: A View from a Children's Library.