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.

 

 

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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.