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Silence = Death
David Lott

Whether or not they have been actively engaged in the current debate over health-care reform, almost everyone has a story about an encounter with the health-care system that in some way encapsulates their opinion. Regardless of whether it’s filled with misinformation or is in any way refuted by other, contradictory stories, that story becomes the truth for that person about what’s important, what is sacrosanct, what the government’s role should be.

As I try to formulate my own thoughts on these matters, I keep thinking back to an encounter I had at the National Gallery of Art many years ago now. While wandering through the museum’s then newly reopened sculpture gallery, I was approached by a young security guard with this polite query, “Excuse me, sir, may I ask you a question?” It’s the sort of approach that one expects from a street person looking for a hand-out. Coming from a uniformed guard, however, I knew there must be some other agenda. Still, I was totally unprepared for what followed.

Reaching underneath his arm, he looked into my eyes, and asked, “Is it a serious thing to have a lump in your armpit?”

Shocked, I stammered, “Well, I suppose it could be.”

“Could something like that be cancer?” he continued.

“It’s hard to say; that’s something you’d have to ask a doctor.”

“But it could be nothing, too, right?”

“Yes, but I’m not a doctor, so I can’t say for sure.”

For the next several minutes, this exchange continued, the man looking pleadingly in my eyes as he repeated his queries, seeking reassurance, direction, anything, from a stranger, someone he seemingly randomly picked out from the many museum-goers that day. Bringing the conversation to a close, I urged him to get a doctor’s attention, did my best to reassure him that whatever it was could be treated, and wished him well. I still wonder if this man sought medical help, and, if so, what his outcome was. But, even more, I wonder why he felt the need to approach a stranger with these sorts of personal questions, what might have held him back from revealing his worries to someone he knew, and why he approached me in particular. Was he afraid of causing his loved ones needless worry? What was it about me that drew him to ask about what could be a life-or-death issue?

Now, in August 2009, watching the health-care town hall forums that have erupted into shouting matches, I wonder if today this man would have the courage to ask his question at all. If this person, in what was likely an urgent situation, would turn to a stranger for medical wisdom, can we be particularly surprised by the fear and misinformation that underlies these explosive gatherings?

Clearly, few things in life can spark terror in people as much as the threat of illness. This terror makes all of us vulnerable not just to bad information but also to exploitation by those who want to assert political power or make a fast buck. Our vulnerability, in turn, can easily turn to rage due to both real and imagined manipulation by vested interests, whether from politicians, insurance companies, the medical establishment, or from some unnamed “other” that seems to be the cause of the problem in the first place. A sense of injustice, no matter how inchoate or misguided, can bring out the obnoxious bully in the best of us. The real problem comes when that sense of outrage becomes detached from moral obligation.

We do in fact, however, have a recent historical example of where such obnoxiousness and a sense of moral obligation worked in tandem. Just over two decades ago, ACT-UP—the AIDS Coalition to Unleash Power—burst on the scene to advocate for increased funding for and hastened availability of experimental treatments of the HIV virus. The urgency of their efforts was understandable and palpable. AIDS was rapidly decimating significant segments of the US population, particularly gay men and IV drug users, and was starting its devastating race through many African nations as well. The federal government seemed to be dragging its feet in responding to this threat to a population of marginalized Americans, and this slow response aroused profound anger and protest. ACT-UP’s haunting motto “Silence = Death” captured the desperation and determination that marked the movement.

Few look back on the heyday of ACT-UP with particular fondness. The coalition’s in-your-face tactics, including “die-ins,”  disrupted worship services and many public institutions, such as the New York Stock Exchange and the National Institutes of Health. But despite the controversy over their tactics, the strategy arguably worked. Since the early 1990s, a growing array of treatments available for those living with HIV/AIDS permit them to have reasonably normal and long lives. Many who, following their diagnoses in the late 1980s, might have hoped to live only a few years or even months, are still alive today. While a cure or vaccine is still not clearly on the horizon, the felt need for ACT-UP’s extreme measures has dissipated, along with the attendant anger and fear, and been replaced with a sense of tentative hope.

Members of ACT-UP were acting on behalf of friends, partners, and selves whose lives were threatened and in memory of those already lost to the pandemic. Although some of their actions were wrongheaded or self-defeating, ACT-UP was, in many ways, heroic in its efforts to save populations that many would rather overlook or condemn to death. Despite its faults, it was a genuinely important cultural phenomenon.

More importantly, ACT-UP’s antics were balanced by the actions of other individuals and groups that overcame fear and fought against marginalization of HIV/AIDS patients by providing profoundly compassionate acts of care and building awareness. The extraordinarily moving AIDS quilt, made up of panels honoring the disease’s victims sewn by family and friends, was shown around the country and drew millions. Gay men broke through their promiscuous or flamboyant stereotypes to model sacrificial care giving and to promote safe-sex practices.

silence

If there are echoes of ACT-UP’s tactics in the recent blow-ups at the town-hall meetings on health-care reform around the United States, unfortunately, they resound mostly with the group’s most misguided and disrespectful efforts. In their attempts to shut down debate and circulate misinformation about legislation, we’ve seen plenty of people who have got the obnoxiousness and disruptiveness down pat.

But where ACT-UP was motivated by the need for positive changes on behalf of the sick and dying, it is hard to detect any sort of mitigating compassion among the most vocal of the town-hall protesters. Instead, we see amazing declarations of illogic and sheer senselessness. Some demand that the government “keep their fingers out of Medicare,” seemingly oblivious to the fact that it’s a federal program. Posters depict President Obama as both a Nazi and a socialist. Even people you hope would know better, like former Alaskan governor Sarah Palin, accuse legislators of plans to set up “death panels” to weigh the fates of the terminally ill, the elderly, and the handicapped.

In short, these folks aren’t acting up, they’re acting out.

And so, my thoughts return to the worried young security guard. How could this man’s gentle, humble question stand up to the harsh, bullying invective that has marked the health-care debate? His concern wasn’t about coverage of a preexisting condition, or of tax ramifications, or about government control, but for his very life. This was a person for whom ACT-UP’s slogan, “Silence = Death,” could be literally true. Yet taken to heart, that slogan perhaps could also give him courage and hope to ask his questions, something that a catch-line like “Keep the government’s hands out of my health care” could never do.

We all have true stories to tell in this debate, but no individual story on its own can hold the whole truth and tell us about what lies underneath the passions at work here. One person’s glowing accounts of an experience with the Canadian national health system can too easily be countered by another person’s horror story. My story of the security guard certainly doesn’t tell us much about the health-care system or about the medical insurance industry. It can’t frame any policy initiatives. But, unlike many of the stories that shape people’s places in the health-care debate, it does say something about the sort of fear and questioning that drive human hearts and minds. It reminds us of the moral obligation we have to one another as human beings, as we seek answers and peace of mind. Neglecting such obligations, not imaginary “death panels,” is what is evil. As AIDS activists reminded us so vividly twenty years ago, our capacity for such abandonment is what is worth acting up about.

 

 

David Lott is a religious book editor and a graduate of St. Olaf College and Luther Seminary. He lives in Washington, DC, where he does freelance editing and writing.

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