Of flawed men and dangerous​ ones

For the CBC on November 30, 2017

In early November, Breaking Bad star Bryan Cranston weighed in on the stunning allegations of sexual misconduct levelled against Hollywood icon Kevin Spacey — one of the early casualties of the so-called Weinstein effect — in an interview with BBC Newsbeat.

Cranston suggested Spacey was “a phenomenal actor, but not a very good person,” describing Spacey’s alleged predatory behaviour as “beyond disgusting. It’s almost animalistic … his career now I think is over.”

Cranston’s response was, at the time, a minor entry on the list of celebrity reactions. It was a chat with BBC’s Will Gompertz, just days later, which drew considerable attention — and outrage.

Finding a way back

Cranston was asked if he thought there was a way back for some of the “Weinsteins and Spaceys of the world.” (To be clear, the full conversation was far more substantive than subsequent clickbait-y headlines would suggest.) In response, Cranston spoke of the wider societal problem of sexual harassment and specifically called for male introspection. Then he went on:

“It would take time,” he said. “It would take a society to forgive them, and tremendous contrition on their part … a knowingness that they have a deeply rooted psychological and emotional problem [that] takes years to mend. If they were to show they put the work in and are truly sorry and making amends, not defending their actions but asking for forgiveness, then maybe down the road there is room for that, maybe so.”

It was an admirably honest, thoughtful response to an uncomfortable question of how to deal with perpetrators of sexual harassment and abuse.

Must every offender become a pariah, or is there room for rehabilitation — possibly even forgiveness — depending on the severity of the crime, sincerity of remorse, input from the victims and totality of circumstances?

As Ruth Marcus, deputy editorial page editor for The Washington Post, argued: “The notion of the cleansing purge has its satisfactions.” There’s a tendency, however, to “overcorrect for past sins. If society once ignored sexual harassment — and we certainly did — one risk…is overcompensating for earlier apathy.”

Marcus has a point. That’s not to suggest men like Harvey Weinstein, who embody a particularly heinous sort of sexual predator — those who not only victimize prey, but implicate all those around by terrorizing them into silence — deserve any shot at redemption. Nor do men who prey on children.

But this overdue reckoning with inappropriate conduct will include transgressions that are arguably minor, and not so straightforward; behaviour more ambiguous — boorish and repulsive, perhaps, but not habitual or necessarily criminal, if still wrong. I suspect most — if not all — men have behaved in some regrettable manner at a given time. But it’s a mistake to assume a man’s worst days accurately reflect his character or potential to reform.

Case in point: Senator Al Franken.

Earlier this month, Los Angeles radio personality Leeann Tweeden alleged that the comedian-turned-senator forcibly kissed her while rehearsing a comedy bit back in 2006 on a USO tour. The same tour produced the now-infamous photo of Franken mugging for a camera while reaching for Tweeden’s breasts as she slept.

After the allegations were made public, Franken conceded that he “let a lot of people down,” but said he is determined to make amends: to prove himself a better man and still-worthy senator.

“This is not going to happen quickly,” Franken said. “I have to earn this over time and that’s what I plan to do.”

Long a sincere and fierce advocate for women, Franken recognizes the unique betrayal many women feel and the additional challenge of repairing that bond. “I know I’m not going to regain their trust immediately. There’s no magic words I can say here to make that happen.”

Compare with Weinstein who immediately sought victimhood, claiming his sexual crimes — which were so obviously premeditated choices — were the result of “sex addiction.” The diagnosis has become a handy tool, of late, to absolve sexual predators of responsibility.

After a single week of “intensive therapy” at a luxury Arizona rehab/resort — a choice “treatment” destination for Spacey, too — Weinstein checked himself out. Far from seeking to earn a second chance, Weinstein, who considers himself “the good guy,” apparently feels entitled to one.

Franken, meanwhile, has welcomed a Senate ethics investigation, vowing to fully co-operate and take responsibility.

“I’m going to be held accountable, and I’m going to try to be productive in the way I speak about this,” he said. In addition to his personal, unequivocal apology to Tweeden, which she graciously accepted without hesitation, Franken’s introspection has been laudable. For instance, though he maintains a different recollection of the USO rehearsal, he understands Tweeden’s interpretation differs from what he believes was his intent, and he accepts that some violation happened on account of his actions.

Learning from mistakes

What adds weight to Franken’s words are his actions: he hasn’t just said the right things, he has already taken steps to atone for his sins and learn from his offending conduct. Short of his resignation, what more should we reasonably ask?

Tempting as it is to “burn it all down” amid the torrent of allegations of sexual impropriety — an inclination which gains appeal with each, seemingly daily bombshell (see: Matt Lauer) — tangible progress and lasting change happen incrementally.

Allowing imperfect men to be part of the solution, even if they were, at some point, in some way, part of the problem, can make for a powerful allied force for good. The passion and dedication that those reformed often bring to a cause shouldn’t be overlooked or underestimated.

It’s important we listen to the stories of those who have been targeted and victimized by powerful, horrible men. But careful weighing of the appropriate, proportional response toward all accused will help ensure irredeemable offenders — and their network of enablers — are fully exposed and held to account. Misdirected anger is wasted energy and, ultimately, a distraction from the larger, most crucial end.

 

Advertisements

Confronting prejudice and changing minds

For Maclean’s on August 31, 2017

One year ago on C-SPAN, Heather McGhee—an African-American woman and the president of Demos, an equality-focused public policy organization—was the featured guest of a call-in program in Washington. Half an hour into the broadcast, a caller introduced himself as Garry from North Carolina, and made a remarkable request: “I was hoping that your guest could help me change my mind about some things,” he began. “I am a white male, and I am prejudiced.”

Garry said his views were rooted in fear—among other things, the fear of black crime and “young black males” needing to turn to crime “to get money for drugs”—and he didn’t want to think or feel that way. But he didn’t know how else to feel.

McGhee, recognizing that Garry had for some reason found a friend in her, took a deep breath and thanked him for being honest, and for opening up a conversation that, too often, isn’t had. “Asking the question you asked, ‘how do I get over my fears and my prejudices,’ is the question that all of us … people of all races and ethnicities and backgrounds hold onto these prejudices … your ability to just say ‘this is what I have, I have these fears and prejudices and I want to get over them,’ is one of the most powerful things that we can do at this moment in our history.”

McGhee recognized Garry’s aversive racism—“I don’t want my fears to come true, so I try to avoid… and I come off as prejudiced”—and gently and non-judgementally addressed the racist assumptions Garry listed before offering concrete suggestions of how he could work to counter and confront those fears, like visiting a multi-ethnic church, getting to know non-white community members, fostering conversations about these fears with family, and learning more about African-Americans in the country.

The compassion offered by McGhee not only allowed for a truly constructive bit of discourse, it provided a direct refutation to Garry’s belief that blacks were inherently angry, aggressive, and dangerous. Had McGhee mocked or chided Garry for his beliefs, or responded in the way that’s become far too common across social media—vindictiveness or dismissal—Garry’s fears would seem justified, and that small window for change would be forever sealed.

When it comes to racial prejudice and intolerance, there are far more Garrys than there are David Dukes or Richard Spencers—a sentiment that, in today’s charged climate, can feel false. On its own, that August weekend in Charlottesville where toxic male aggression, combined with seething racial tensions and overt white supremacist ideology, inevitably ended in violence, would seem to prove otherwise. But while this degree of far-right extremism and neo-fascism needs to be explicitly called out and unequivocally denounced, it would be a mistake to assume that racist, bigoted, or discriminatory beliefs are wholly indicative of the individuals who harbour them.

However morally satisfying, viewing racism through a Manichean lens—where people are either evil or good, “racist” or “not racist”—misunderstands the complexities which drive the formation of irrational beliefs and misguided assumptions of someone else. It assumes—wrongly—that all people who hold racist views explicitly choose to hold them. Quiet, implicit biases, for instance, are often come by honestly. And while no one is free of them—within every race and ethnicity you’ll find varying degrees of prejudice toward specific others, as it’s part of an evolutionary in/out group tendency—there are differing degrees of awareness to individuals’ own soft bigotries.

Knowing this makes it easier to accept that good people—including those you may know and love—can hold deplorable views without being fundamentally deplorable human beings, and in getting beyond the desire to write off those who maintain such views as entirely irredeemable, you can actively work toward challenging—and changing—their flawed mindset.

While some eagerly embrace intolerance, many are reluctant to acknowledge—or may be entirely blind to—their own prejudices, because those quietly acquired beliefs are so far out of line to their consciously held morals. As Ta-Nehisi Coates observed in 2013, “we believe racism to be the property of the uniquely villainous and morally deformed, the ideology of trolls, gorgons, and orcs. We believe this even when we are being racist.”

 It’s easier to cling to the “white hood” theory of racism—the notion that hateful people like Duke are the epitome of the problem—than to confront our own subtle, insidious views about a given other. This makes harmful beliefs pertaining to race and matters of social justice so notoriously resistant to change. While there’s no single foolproof approach to changing misguided ideas, what’s been proven the least effective and most counterproductive effort is the shaming method.

“When people have their self-worth validated in some way, they tend to be more receptive to information that challenges their beliefs,” said Peter Ditto, a psychology professor at UC Irvine—that is, treating the person as worthy of debate, no matter how unworthy you’ve deemed their opinion, creates opportunity for constructive dialogue. Because mood factors into how receptive we are to new information or different ideas, direct antagonism—whether through point-scoring, name-calling, or the use of epithets (which includes the allegation of being “racist”)—immediately puts the other on the defensive, which not only kills any chance for discussion, but instinctively drives a doubling-down on the problematic beliefs.

Further, by separating the person from their views, thus removing any sense of moral failure or shame on their part, you can more effectively, even directly, challenge the faulty beliefs without attacking at a personal level. In acknowledging someone’s identity outside of a particular view, you provide assurance that while you may find their point of view detestable, you don’t hold them personally so. When people respect your approach and feel they’ve been fairly heard—that care has been taken to consider a point of view they may hold passionately—they are increasingly likely to consider your counter-argument.

Once you’ve started some dialogue, asking the other to expand on their specific idea—giving them full opportunity to explain, in detail, precisely why they hold that opinion—will open them to the limits of their own understanding. It’s easy to hold some gut-level belief, but given how those often arrive without conscious effort, asking for in-depth reasoning will expose the absence of it, and without any effort on your part. Even if the person’s mind isn’t changed, the introduction of doubt to one’s certainty can help begin the education process. And if you can’t offer a thorough response yourself, to help fill the information gap the other has revealed, then chances are your own knowledge of the matter isn’t as complete as you believe it is. This presents an opportunity for you to broaden your own understanding and deepen your knowledge, which will then strengthen your argument down the road.

In The Knowledge Illusion: Why We Never Think Alone, co-authors Steven Sloman and Philip Fernbach explore the limits of knowledge, and the precise role that groups play. The way we rely on the expertise of others to make personal sense of the world is what sets the stage for over-confidence in what we think we know. Leaning on others’ knowledge without a full understanding, over time, creates the illusion that we ourselves possess the expertise. 

“This is how a community of knowledge can become dangerous,” they observe. “As a rule, strong feelings about (fraught political) issues do not emerge from deep understanding.” Exploring the complexities of an issue and patiently working through the details offers the best chance to “shatter the illusion of explanatory depth and change people’s attitudes.”

Another promising approach deals with the precise framing of debate. By appealing to the moral concerns of the person whose beliefs you’re challenging, you can work toward finding common ground. “There’s this tricky difference between moral difference and the absence of morality,” notes Matt Feinberg who, along with Robb Willer, studies effective persuasion across ideological lines.

Jonathan Haidt studies the psychological foundations of morality, and his book The Righteous Mind: Why Good People are Divided by Politics and Religion introduced the Moral Foundations Theory, positing that liberals and conservatives are uniquely motivated by five distinct moral dichotomies that frame their thinking. Liberals, for instance, place greater importance on matters of care/harm and fairness/cheating, while conservatives value the concepts of loyalty/betrayal and authority/subversion. These competing values, in part, fuel the Black Lives Matter vs. Blue Lives Matter fight.

Take, for instance, the case of Jeronimo Yanez, an officer with Minnesota’s St. Anthony Police Department, who was acquitted in June on all charges of criminal wrongdoing in the shooting death of Philando Castile, a black man who he’d pulled over on account of a broken tail light. Castile was, by all accounts, the sort of man conservatives routinely suggest are absent in black communities—his record was clean, he was a role model for local youth, he had a job and a girlfriend and served as a father to her four-year-old daughter. Castile’s life approach, described by a longtime friend, was always “‘play it by the books.’ ”

Dashcam video revealed Castile as attentive and respectful toward the officer when he was pulled over, and showed he proactively informed Yanez of the presence of a gun which he was fully licensed to carry. Mere seconds later, Yanez opened fire, unloading seven rounds into the car, five of which hit Castile.

Conservatives who’d always found reason to justify previous deaths of black men at the hands of police, but who decried the officer’s acquittal in this case, were able to find common cause with Castile largely because of the Second Amendment aspect. That moral frame forced them to see not a black man—someone who was “other”—but a fellow patriotic American whose black life should have mattered.

That’s no small revelation. And yet, while many champions of police reform welcomed the conservative advocacy, some couldn’t help but fall back on the call-out/shame cycle, admonishing for “not listening” to what the black community had long been saying.

While frustration is understandable, scolding someone you’ve been trying to reach for making real progress—no matter how delayed—is ultimately self-defeating. What’s more important here: self-righteous point-scoring, or welcoming an ally from the other side to help work toward a now-common goal?

There is courage in admitting to beliefs which could be deemed a moral shortcoming. Making oneself vulnerable in order to become a better person is a harder choice than it ought to be. Making that choice an impossible one—by always greeting honest effort with hostility—guarantees an end to progress. There is also tremendous bravery in responding with compassion when, throughout life, you’ve been afforded none. Though it seems unfair that the bulk of effort to counter harm rests with the those who’ve borne the brunt of it, that’s what social justice activism is about: to persuade those who feel they have nothing to gain by challenging an injustice, to see themselves in the cause, and join it.

You cannot force someone’s change of heart. But you can lead in a way that might entice one.

 

She’s someone.

For the Ottawa Citizen on October 12, 2017

In the wake of allegations swirling around Harvey Weinstein, a powerful, dominant figure in Hollywood, where the emerging picture suggests decades of sexual predation, many women are finding their voice in this rare window for candid dialogue and raw confession.

The response from some of Hollywood’s leading men, however, has been a standard refrain, one that helps maintain the power dynamic which allows abuse to happen. When Matt Damon claims “as the father of four daughters,” Weinstein’s alleged behaviour is the sort of thing  “that keeps me up at night,” he offers no hint of understanding the root of the problem.

On Wednesday, writing in The New Yorker, Jia Tolentino explained how “one of the cruellest things about these acts is the way that they entangle, and attempt to contaminate, all of the best things about you … a powerful man sees you, a woman who is young and who thinks she might be talented, a person who conveniently exists in a female body, and he understands that he can tie your potential to your female body, and threaten the latter, and you will never be quite as sure of the former again.”

This is a familiar, abusive dynamic which exists far beyond Hollywood and touches every industry – though the menacing behaviour may not always be sexual in nature. No matter the method, abusing one’s power at the most personal level is about eroding the agency of women, ultimately assuming control and enforcing compliance by way of threats, coercion and humiliation.

When a woman’s talent resides in her physical abilities – the abuse some female athletes experience occurs on multiple, concurrent levels – that fallout, as noted above by Tolentino, is compounded. When a woman’s value and potential depends on a body that performs above all else, the relentless pursuit of a more-perfect – stronger, faster, leaner – physique inside a sport results in a body that doesn’t fit neatly outside of it, and the degradation met from either side of that divide ultimately ends in doubting and hating every aspect of oneself.

Anyone who understands the type and extent of damage done by deeply personal mistreatment will find the now-standard refrain when abuses comes to light – she’s someone’s sister/mother/daughter/wife – completely hollow.

It’s a line that reinforces the notion of a woman’s inherent worth being dependent on another’s evaluation: In this case, her importance centres around her direct relation to another. She can be more readily humanized and related to here because she fits squarely into some female box and afforded a basic value.

When Ben Affleck, in response to the allegations against Weinstein, (hypocritically) says he is “saddened and angry that a man who I worked with used his position of power to intimidate, sexually harass and manipulate many women over decades … we need to do better at protecting our sisters, friends, co-workers and daughters,” he is suggesting women are simply in urgent need of defending.

His response maintains the hierarchy and imbalance of power that fuels abuse, one where men reign supreme and women are always regarded as the lesser, weaker beings: easy prey.

The “she is someone’s” framing fails to recognize women as worthy of dignity and respect in their own right. Each woman is something apart from her body.

She is someone – period.

Women are doctors, lawyers, teachers and mentors. We are athletes and builders, academics and scholars. Yes, women are daughters and mothers and sisters; we are friends and partners, too. But we are fierce, capable individuals independent of any given familial, professional or intimate relationship.

Daughters don’t need a future of white-knight defending, they need an environment where their ideas, abilities and potential are allowed to stand or fall on their own merits. That requires effort from men in teaching their sons to do and be better than they were, while challenging fellow men, and toxic cultures, to change.

Rather than seeking ways to humanize women, men should ask why that effort is necessary at all, then determine their role in correcting that. This isn’t so much about your mothers, wives, sisters as it is about sons, brothers and fathers.

 

 

On Charlie Gard, medical harm, and fate

For Maclean’s on July 18, 2017

It’s the most commonly cited phrase from the Hippocratic Oath, the binding document—one of the oldest in history—upon which physicians swear: “First, do no harm.” However, that four-word axiom doesn’t itself appear in the classical text of the pledge. Instead, there’s a promise to “apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.” That distinction is important: In medicine, harm can be mitigated, but it cannot be avoided. Every procedure carries risk, and the value of beginning or continuing treatment is weighed against the merits of withholding, suspending, or abandoning it. No course of action—or inaction—is free of trade-off. While harm cannot be the intent, it’s inevitable that harm, to some degree, will be done as a result.

And so physicians and surgeons, knowing the limits of their capacity as doctors and that of medicine itself, strive to achieve the best possible outcome while doing as little damage in the process. This includes situations where the “best possible outcome” means sparing a patient prolonged suffering, protecting against futile interventions sought out of desperation, and allowing death to occur as gently as possible. The modern interpretation of the oath includes a vow to “apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.”

This commitment to hold the patient’s best interest above all else, to practise with tenacity and skepticism in equal measure, is of particular importance when patients cannot speak for themselves—even more so when the patient is a child, and there’s denial or defiance from caregivers regarding a diagnosis, prognosis, or proposed treatment.

Which brings us to the wrenching saga of Charlie Gard, the terminally-ill British child at the centre of what’s become an international, ideological brawl over parental rights and the boundaries of intervention when caregivers and medical experts are at odds; a case which demonstrates the delicate balance between optimism and realism in both treating and coping with disease. It raises questions regarding the ethics of medical professionals who provide false hope—a practice known to be predatory and harmful—exposes the moral bankruptcy of those who so often position themselves as defenders of morality, and reveals the callous politicization of a dying child for selfish, partisan purposes.

Taken together, the push to assign blame and assume control over what’s ultimately a genetic tragedy speaks to a broad misunderstanding of disease and how it’s treated—and our stubborn reluctance to concede to the cruelty of fate.

Born Aug. 4, 2016, Charlie has lived all but the first nine weeks of his life in London’s Great Ormond Street Hospital. He inherited a rare, genetic defect which hinders the mitochondria—the powerhouse of the cell—from producing energy. Charlie’s diagnosis of infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS) is incurable, untreatable, and fatal.

Though his parents, Chris Gard and Connie Yates, insist Charlie remains responsive, his MDDS has reached the terminal phase—his body is dying—and the life support that’s artificially sustaining his existence cannot halt the natural progression of the disease. What it can do, however, is temporarily prolong the agony of Charlie’s life: MDDS starves Charlie’s muscles, kidneys, and brain of the energy needed to function, and because of his epileptic encephalopathy, Charlie also suffers from frequent seizures and has extensive, irreversible brain damage at both the structural and cellular level.

Charlie can’t communicate the extent of his discomfort. But in Britain, courts intervene when there’s a dispute between doctors and families over a proposed course of treatment, and judges help determine what’s in the best interest of the patient. And in siding with the doctors selflessly dedicated to the child’s care—ruling against his parents’ desperate appeal to the right-to-try—the U.K. Supreme Court established that Charlie “is suffering [pain] and at more than a low level … it was in his best interests for the clinicians treating him to withdraw [all life-sustaining support] and to provide him only with palliative care.” That ruling upheld decisions from the British Court of Appeal and the Family Division of the High Court of Justice, which had granted the hospital permission to “withdraw all treatment, save for palliative care, to permit Charlie to die with dignity.” The European Court of Human Rights in Strasbourg then declined to intervene.

But Yates and Gard found an American neurologist willing to subject their son to a costly, experimental therapy, and they have been fighting in court since April for the right to take Charlie to America and treat him as they see fit. The couple launched a GoFundMe campaign to finance the therapy—an effort which has raised more than £1.3 million to date—with Yates writing that Charlie “literally has nothing to lose but potentially a healthier, happier life to gain.” Problem is, when Charlie’s medical team asked for evidence of the proposed treatment’s efficacy, the American neurologist—known only as Dr. I through court documents—admitted that “there is no direct evidence, but there is a theoretical scientific basis for saying it could [help].” After learning the full extent of Charlie’s “catastrophic and irreversible brain damage,” Dr. I conceded it was “very unlikely” the experimental therapy would benefit the child in any meaningful way, which aligns with the London hospital that has always maintained the desired nucleoside therapy “would be futile and would prolong Charlie’s suffering.”

Heading into July, their legal options exhausted, it seemed Yates and Gard were finally ready to let Charlie go. “We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie,” Yates said on June 30, the day Charlie’s ventilator was set to be disabled. The hospital granted an extended window for goodbyes.

Enter the Pope and the Vatican, the President of the United States, and a range of conservative activists, from notorious right-to-life warriors to fervent champions of free-market health care, some referring to “death panels” blocking Charlie from accessing care in America. One week later, Charlie’s parents were again in denial, and poised to fight on; Yates credited the international attention brought by the Pope and Trump as the “single biggest factor” for Charlie’s life support remaining in place.

On July 13, Yates and Gard were back in court, again pleading their case to Judge Francis, a hearing requested after the hospital—amid intense international pressure—agreed to hear the “new evidence” the parents claimed to have. There remains no resolution, though lawyers from both sides have agreed to arrange for a meeting in Britain between Charlie’s doctors and the American neurologist, who has not yet examined the child, yet remains willing to cede to the parents’ demand for hypothetical cause to hope.

But all these intervenors continue to miss the point. The fate of the child is not open to ruling; Charlie’s genetic disorder remains his death sentence. There is no question of whether or not to discontinue the infant’s life support—that will and must be done—nor is this a matter of medical resources or “death panels.” In fact, it’s the remarkable care of Britain’s socialized health care system that has enabled Charlie’s survival to this point, and at no cost to his parents. Spending millions on private, experimental therapy will neither slow nor reverse this painfully terminal situation.

This is the fundamental, brutal truth at the heart of this case. And while Charlie’s parents believe themselves sincere in their claims—“We’re not doing this for us. He’s our son. We want what’s best for him. If he is still fighting, we are still fighting”—the fact remains that they’re not actually fighting in the child’s interest. The pain of losing their son is being prioritized over Charlie’s own sustained agony. Further, Charlie isn’t “fighting”: He’s dying. He’s not engaged in this battle. For most observers, these are difficult notions to consider; for those intimately involved, they’re impossible to admit to.

By and large, society’s grasp of death and understanding of illness is selective and flawed. Disease is presented as something to be valiantly fought against as opposed to professionally treated; when people die, they’re said to have “lost the battle,” suggesting failure on the part of the individual for circumstances well beyond their ability to influence. Medicine and doctors treat disease as best they can, but not every illness can be remedied or managed—that’s not failure, that’s nature. The need to believe one can assume control and triumph over adversity, no matter the circumstance, stems from an unwillingness to accept that, more often than not, stories of medical hardship don’t conclude in straightforward, tidy, or even satisfactory fashion. The widespread, fierce denial of the inevitable outcome for Charlie is the social issue worthy of attention in the Gard case.

Medical misfortune and dying—and the hard truths of their realities—are realities I know well. There have been two distinct periods of my own life where I endured a sustained, tortuous march toward death. The first, caused by a should-have-been manageable, inherited disease which went undiagnosed and untreated, resulting in the widespread damage and complete shutdown of a major life-sustaining organ, the intestine; the second, after proper diagnosis and years of intensive treatments and surgeries, a rare post-operative complication resulted in catastrophic, multi-organ failure, and further damage to what remained of the intestine.

It’s the second period of being alert and aware in an imminently dying body that was most physically excruciating and emotionally traumatic. There’s the “air hunger,” or chronic sensation of suffocation, which compounds the already intense state of anxiety and what’s known as terminal agitation; in addition to frightening hallucinations and intense nightmares, this second experience was also intolerably, relentlessly painful.

Every day during this period, I’d ask my doctors if I was going to die, and each horrified query was met with some form of this honest, if unsatisfactory answer: “We’re taking good care of you.” Though lacking certainty themselves, my family quietly prepared for the worst. They chose to control what they could while maintaining hope, but granted that—like before—they ultimately had no sway over my fate. There were no end-of-life discussions directly with me because everyone knew clearly that I did not want to die, and at the time, I was unable to cope with the prospect enough to properly discuss it.

I can’t say why I’ve survived impending death—twice—but I do know I cannot take credit. It remains my own medical team, and chance, that saw me though. Were my diagnosis undeniably terminal and prognosis clear, palliative care would have been the route to follow. Though I’d have been devastated, that certainty would have forced my hand on many things—including facing my mortality. Rather than cowering in death’s shadow, perhaps I’d have danced in it.

There is undeniable—though unavoidable—harm in learning that a prognosis is fatal and nothing more can be done. But that finality, however devastating in the near term, offers both patient and family some degree of control over the remaining days. It provides a meaningful window for final goodbyes or final adventures, and allows for an uninterrupted focus on quality time. These moments, down the road, are what help those bereaved find their way through the sorrow.

This long-term benefit is lost on those who, desperate to bypass immediate grief, are seduced by false hope and empty promise. In chasing what they believe to be a miracle cure, patients are robbed of time as their families are robbed financially. Those who suggest there is “nothing to lose” in seeking “alternative” treatments are not allowing themselves to see the intangible, irreplaceable things that remain, all of which they forfeit to follow a mirage. Yates and Gard are both victims of this dreadful, depressingly common, trap.

Of all those claiming to be fighting on Charlie’s behalf, it’s those who’ve been demonized—his medical caregivers, and the British courts—who’ve offered the selfless, ethical, unwavering commitment to the child. The medical fight for Charlie’s right to die is an extension of the life-sustaining treatment provided to this point.

End-of-life support is an under-appreciated element of health care; to know the excruciating experience of dying-of-illness firsthand is to appreciate the importance of preventing that sort of drawn-out agony whenever possible.

 

(Un)civil discourse

For the CBC on July 31, 2017

“It is simply impossible to overestimate the love, bordering on worship, that reporters in Washington long had for McCain, and to a great degree still do,” Washington Post contributor Paul Waldman wrote Tuesday as Senator John McCain, diagnosed with an aggressive form of brain cancer, returned to Capitol Hill to vote on the Republican effort to repeal and replace Obamacare.

“He alone is written about as though he never considers politics or his personal advancement,” Waldman continued, “but makes decisions only on the basis of his unimpeachably virtuous ideals.”

McCain’s “maverick” credentials have always been part of a carefully-crafted persona, though closer examination of his voting record reveals a predictable toeing of the Republican party line — roughly 87 per cent of the time, to be precise.

Indeed, he continued to toe that line last Tuesday, voting to move ahead with debate of the Senate’s health care bill while vowing to block any final passage of the proposed legislation unless substantive changes were made. As The Atlantic’s David Graham put it: “[McCain] delivered an impassioned critique of partisanship, haste, and win-at-all-costs legislation, just moments after casting a vote to debate a bill that exemplifies all three.”

It’s not unreasonable to suggest McCain’s calculated performance was hypocritical and largely self-serving, nor was it wrong to voice disappointment, even disgust, at the display. Pointed commentary, when offered fairly, is both necessary and constructive. Yet the viciousness of much of the Twitter backlash, in response to a vote which merely allowed a bill to proceed to debate, crossed far beyond righteous indignation.

“Would have been better off if he died in Nam. I have no reservations saying those words. Evil person, who just chose to kill thousands,” read a top response to one particularly popular tweet noting that “McCain left hospital stay paid by taxes on flight paid by taxes to remove health insurance from taxpayers.”

“Ted Kennedy fought cancer while trying to ensure healthcare for all. McCain fights through cancer to take healthcare from millions,” read another of the gentler, viral missives.

Kennedy, the Democratic senator who died in 2009 of the same brain cancer now threatening McCain’s life, considered comprehensive health care reform his life’s mission — a cause to which he remained dedicated to the end.

Those of the far-right, then — like those of the far-left now — were happy to use Kennedy’s mortality as a weapon against his political positions. At a rally against Obamacare in 2012, signs were printed to read: “Bury Obamacare With Kennedy.”

This brand of ugly, partisan warfare has become standard on Twitter, an arena where the in/out group dynamic punishes moderation and stifles same-side dissent. This serves to bolster the extremes which fuel the most savage polarization: it’s not enough to disagree — the other side must be despised, shamed and demonized, even if that means finding delight in another’s terminal cancer diagnosis.

Regardless of circumstance, those in positions of power are open to honest reproach. But this sort of conduct is abhorrent, full stop. Excusing or engaging in the very behaviour you’d never tolerate, were it directed at one of your own, directly contributes to the toxic and abusive atmosphere routinely bemoaned on Twitter.

Broader civility is cultivated through individual actions. Granted, there are times when emotion runs high and judgement falls short, and there’s plenty of room for both good-natured teasing and intense disagreement. It’s the routine, unchallenged maliciousness that’s destructive. Abuse is a choice. So is decency. Holding yourself and your allies to the higher standard will serve your cause better than dropping the calibre to meet the level of an adversary.

One of the few who gave McCain the benefit of the doubt after his procedural vote last Tuesday was Adam Jentleson, former deputy chief of staff to Harry Reid, the Democrats’ minority leader in the Senate.

“There are those rare moments when one person can alter the course of history,” he tweeted Tuesday. “If McCain is serious, he can vote for whatever amendments he likes but will vote against final passage. If (he) folds, he will end his career as a toady for Trump. But I will sleep well at night and never regret choosing to have at least a little bit of faith in an American hero.”

In the wee hours of last Friday, when it mattered, McCain cast one of three decisive Republican votes to defeat his party’s destructive health-care legislation. His credibility and legacy were always his own to lose. All the vitriol directed his way, in the end, undermined only the integrity of those from which it came. And ultimately — and ironically — that abuse helped McCain emerge as the maverick once again.

 

 

How the far-right co-opted “free speech”

For Maclean’s on May 1, 2017

It was the third time in as many months that supporters of President Donald Trump gathered in Berkeley, Calif., the historic birthplace of America’s Free Speech Movement and the cradle of anti-war protests in the Vietnam War era—but when met with counter-protesters on Apr. 15, the confrontation escalated into “something resembling a war zone.” Even after confiscating numerous makeshift weapons, police say fireworks and pepper spray were slung amid the mass street fights. In the end, some 20 people were arrested and 11 injuries were reported. By far, the most remarkable image to emerge from the day’s brawl saw Nathan Damigo, a former Marine—and convicted felon, and white supremacist—punching a black-clad, female counter-protestor square in the face.

To the casual observer, these violent confrontations involving far-right internet personalities, their extremist militant allies, and so-called anti-fascist activists—ostensibly defending freedom of speech—were just another example of an increasingly censorial left shutting down voices that offend them.

But it’s clear that the attendees’ fundamental motivation for the “Patriots Day” gathering wasn’t, as billed, to “stand united against censorship”—it was to use free expression as a shield, to incite a physical encounter with an anarchist opposition, to live-stream the experience for an online audience, and position themselves as martyrs. Damigo, after all, has since become the alt-right’s latest folk hero, celebrated in the darkest corners of the internet and added to the growing list of cult-like figures promoted as a draw for future mass provocations.

The noble pursuit of defending, even pushing the limits of, free expression has been co-opted by far-right status-seekers grasping at relevance through the misappropriation of a previous generation’s moral activism. It’s not the first time we’ve seen this well-rehearsed performance—this protest-violence theatre—which has become essential to fundraise and recruit for, but more importantly, further mythologize, the so-called alt-right. But in the wake of recent protests over University of California, Berkeley’s cancellation of a February talk by now-disgraced professional troll Milo Yiannopoulos, and this past weekend’s demonstration following UC Berkeley’s initial nixing of a planned lecture from Ann Coulter, it’s clear this act is on an extended run.

While Berkeley was responding to “very specific intelligence” of credible threats to the security of Coulter, and acted on “the assessment and recommendations of law enforcement professionals whose primary focus is the safety and well-being of our students and other members of our campus community,” it is worth noting that the outright cancellation was a gross violation of Coulter’s First Amendment rights. After warranted condemnation from across the political spectrum, the university reversed course, offering to host Coulter at “an appropriate, protectable venue” on campus just days later than the initially planned appearance. But no matter the facts or the circumstance —“everything we’re doing is so the speaker and students can actually exercise their rights without disruption,” explained university spokesman Dan Mogulof—the early mishandling provided Coulter and her supporters cause for martyrdom.

Coulter contended the school “just up and announced that I was prohibited from speaking.” Last Monday, the Young America’s Foundation and the Berkeley College Republicans filed a suit against UC Berkeley, claiming officials sought “to restrict and stifle the speech of conservative students whose voices fall beyond the campus political orthodoxy.”

But Bridges USA, a politically moderate organization involved in Coulter’s invitation, seems to have clued in to the swindle. Pranav Jandhyala, who founded the group’s UC Berkeley chapter, admitted fears “about it turning into a huge battle between [Coulter’s] conservative militia and antifascists and others …We’re worried about violence and student safety and our own safety as well. It’s a huge concern.” More importantly, Jandhyala acknowledged that it was now clear that Coulter’s intention wasn’t to engage in any real dialogue, but to prove her own point.

Coulter declined the university’s offer to reschedule, as framing the matter as one of pure censorship offers maximum propagandistic value—a strategy of capitalizing on free-speech issues that has proven to be something of a PR coup for grievance-mongers.

Berkeley’s far-right agitators routinely invoke the memory of activist Mario Savio, the standard-bearer of the FSM, going so far as to declare themselves “the new Free Speech Movement.” This, while boasting of the endorsement of America’s highest office: “The more abuse and harassment we suffer,” warned the Berkeley College Republicans in a joint op-ed following Yiannopoulos’s cancelled appearance, “the more controversial speakers we will invite to campus. We proceed fearlessly because we know we have the president of the United States on our side.”

Indeed, in February, President Trump implicitly threatened to withhold federal funds from the university for failing to cater to Yiannopoulos who, amid the renewed controversy involving Coulter, has announced a comeback, sensing an opportunity to regain status and rehabilitate his ego—not to mention, profit mightily.

“We will give out a new free speech prize—the Mario Savio Award—to the person we believe has done most to protect free expression at UC Berkeley and its surrounding area,” proclaimed Yiannopoulos in promoting Milo’s “Free Speech Week.” “Each day will be dedicated to a different enemy of free speech, including feminism, Black Lives Matter and Islam.”

This co-opting of Savio’s legacy is a calculated provocation, one that his son Daniel calls “some kind of sick joke.” Savio led the FSM to victory in ending all restrictions to political activity on campus, which included the rights of orators from all political perspectives. “Rather than ban speakers he disagreed with, Savio debated them, whether they were deans, faculty, the student-body president, or whoever,” wrote Robert Cohen, author of Freedom’s Orator: Mario Savio and the Radical Legacy of the 1960s. “And this was the spirit not only of Savio but of the FSM, which had an almost Gandhian faith that through open discourse anyone had the potential to be won over” to a cause.

Savio was a veteran of the civil-rights movement, and as Cohen details, “sought to convince the editors of the student newspaper there that their use of the term “n—-r” in the paper was hurtful and irresponsible … Savio did not deny students had the right to print what they chose, but asked that they reach out to their black classmates and reflect on whether in the future they could be more thoughtful about the impact their words had on the campus community.”

The FSM’s quest was decent and honest—it was about engaging in open, rigorous debate and the exchange of ideas, no matter how inflammatory or loathsome, with a goal of making progress. What’s happening now isn’t about discussion: it’s pure political tribalism. People like Coulter and Yiannopoulos aren’t brought to campus to contribute substance—hearing either speak for a few minutes quickly puts lie to claims of their brilliance. They are skilled antagonists who can reliably incite backlash from a perceived enemy; they are, as Dorian Lynskey of The Guardian describes, the “outcome of a grotesque convergence of politics, entertainment and the internet in which an empty vessel can thrive unchecked by turning hate speech into show business.”

Where trauma, real or perceived, has become a sort of morbid currency in some circles of the left, often used to justify unworkable demands of individuals and institutions, the self-described “politically incorrect”—adults who consider childlike behaviour to be heroically subversive—are in the grievance trade. Because each provocation inflates the value of a carefully-crafted persona, victimhood is actively—and ironically—sought; they prey on the vulnerable, ridicule targets of well-documented discrimination, then cry persecution when met with resistance.

While it’s vital to uphold and protect the right of all speech on campus—even the most abhorrent rhetoric from the ranks of the alt-right—it’s crucial to identify this new game being played and, as Savio desired, critically judge “whether the speech … is really free, or merely cant.”

And it matters that influential voices, while rightly demanding institutions uphold free speech norms, explicitly make that distinction.

On assisted death and psychological suffering

For Maclean’s on March 28, 2017

In 2015, a landmark ruling by the Supreme Court of Canada struck down the federal ban on physician-assisted suicide, solidifying the charter right of competent, consenting adults who are “suffering intolerably as a result of a grievous and irremediable medical condition” the right to die on their own terms with medical assistance.

Criminal prohibition on assisted-death, the unanimous Carter v. Canada decision noted, condemned the “grievously and irremediably ill … to a life of severe and intolerable suffering. A person facing this prospect has two options: she can take her own life prematurely, often by violent or dangerous means, or she can suffer until she dies from natural causes. The choice is cruel.”

That callous dilemma was rectified only in part by the assisted-dying legislation put out by the federal government in June, which restricts physician-assisted death to “grievous and irremediable” illness where natural death is “reasonably foreseeable.” In effect, the law prohibits assisted-death beyond the end stages of terminal disease, a limit that defies the underpinnings of the Carter ruling and fails to provide medical professionals with straightforward criteria or substantive guidance on this delicate matter.

The instinct to prioritize extreme physical suffering above all else is a deeply human tendency. Even without first-hand experience, people can relate to tangible pain. Compassion is natural. But abstract torment—the sort of ongoing suffering caused by an unquiet mind—garners far less empathy and even scarcer latitude. However unsettling it is to discuss, it is time for honest, open dialogue to begin on the matter of physician-assisted death for psychological disease.

Where the government’s narrow approach to assisted-dying has sown confusion and doubt around patient eligibility and physician liability, the distinct exclusion of psychological suffering further compounds uncertainty, as it inadvertently establishes an hierarchy of disease and opens the extent and validity of another’s suffering to broad debate. When the legitimacy of an illness can be arbitrarily called into question, people living with proven-irremediable torment will be denied their charter right to die simply because their anguish stems from a disrespected diagnosis.

The government will at some point, by choice or by force, amend its assisted-dying legislation which, in its current form, has been deemed unconstitutional by Peter Hogg, Canada’s foremost authority on constitutional law. When the required independent review regarding the scope of eligibility reports back in 2018, a comprehensive understanding of mental illness will prove crucial to making the law right.

Though significant gains have been made in demystifying mental illness and eroding the stigma attached to various diagnoses, there remains a reluctance to candidly discuss, or even admit to, an uncomfortable reality: As is the case for any severe or chronic health condition, for some, recovery from mental illness simply will not happen—not for lack of effort or will, mind you, but because the brain cannot right itself. Be it unrelenting depression or ruthless OCD, psychiatric disorders which prove not-responsive-to-treatment can, like a terminal cancer, slowly destroy the individual without mercy and without reprieve.

A point will be reached where there is little, if any, quality of life, and deterioration will only continue. It will not get better because in those specific, extreme cases, it cannot get better. Though painful to confront, this truth cannot be ignored. It’s key to understanding the true nature of mental disease.

To date, medical conversations around aid in dying have largely omitted this component of psychological illness. In arguing against assisted-death for psychiatric suffering, Euthanasia Prevention Coalition (EPC) president Jean Echlin insists: “If somebody loses their life now, they’re put to death, and two weeks from now there’s a breakthrough, they’ve lost their life when they could have had quality.”

But that’s a false premise. In making that argument, the EPC and similar organizations appeal to a misplaced faith in some imminent, miraculous recovery. They endlessly debate what if scenarios because they refuse to acknowledge the distressing reality of what is.

Forcing someone to exist for decades in what amounts to an excruciating purgatory is no morally or ethically superior than granting those living a ceaseless hell some control over their circumstance by allowing the option of a merciful end should they, at some point, choose.

Because, to be clear, these individuals will end the pain. Bioethicist Udo Schuklenk, who chaired the Royal Society of Canada’s 2011 panel on end-of-life decision-making, confirms “a large number” of those suffering from intractable mental disease will “at one point or another commit suicide, and it often happens in terrible circumstances”; these methods often further traumatize those left behind. Physician-assisted death offers “a better way for them to end their lives,” and provides a peaceful, controlled conclusion, where no loose ends remain to painfully fray. In this sense, state-facilitated “suicide” is a form of harm-reduction.

There’s understandable apprehension about “normalizing” suicide or being seen as encouraging—or worse, glorifying—death over treatment and recovery for psychiatric suffering. But suicide and assisted-death are two entirely different phenomena and should not be confused.

As the Centre for Suicide Prevention notes, suicidal urges are temporary and the act itself is one of desperation. At their point of crisis, a suicidal person “cannot see alternatives to their situation beyond death.” They do not want to die, but they lack the means to help them live. “Given help,” the CSP says, “they will choose help”; with proper intervention, recovery is not only possible, it can be expected.

Those qualifying for assisted-death explicitly want to die. They have sought and exhausted all available medical resources, and further treatment would not yield results. With no prospect of recovery or further improvement, their decision to die would be neither rash nor ill-considered, but carefully planned and, if carried out, done so mindfully.

A proper framework for assisted-death in cases of physiological suffering would see final approval granted to those who undoubtedly qualify while safeguarding the most vulnerable. Stipulating alternative pathways be encouraged throughout the screening process and mandating meetings with medical and psychiatric professionals who would offer the proper course of treatment to those who perhaps, to that point, had gone without or were unable to access it could, over time, save lives.

The right to assisted-death needn’t supplant or replace proper mental health funding and treatment, either. Where already available, in cases of terminal disease, aid in dying doesn’t replace or supersede comprehensive palliative care, but serves as an option in addition to it.

An excruciating life voluntarily cut short is undeniably tragic. So too is condemning others to an unending misery because the distress of those uninvolved—over the mere notion of an alternative—is deemed the greater bother.