“Let Them Die“? – The Dangers of Losing Compassion

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This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"


O for God's sake
they are connected
                -Muriel Rukeyser “Islands”

    Several widely-televised incidents recently exemplified the harsh and frightening polarization we are experiencing in our society.  The first was at the Republican debate at the Reagan Presidential Library where the audience spontaneously clapped and cheered when Governor Rick Perry's record of 234 executions was discussed.   The second was a clear shout from the audience of "let them die" when Representative Ron Paul was asked hypothetically if he would treat an uninsured individual who required medical attention.   For me, these were stunning moments of disbelief.

    Themes of independence, personal responsibility, and self-sufficiency have long been at the core of American culture and, overall, I believe they have served us well.  But they have been balanced and tempered by a belief in a role for government that provides services and infrastructure beyond the capabilities of any single individual. Indeed, a functioning democracy surely relies upon a degree of empathic feeling among its citizens.  From a medical point of view, anyone who states they can take care of themselves (and that they will have nothing to do with the needs of others) has either had astoundingly good luck in terms of health or is so blinded by ideology that they have become delusional.

    What does this mean for HIV?   Is it realistic for anyone to be able to pay for their own medications?  Most persons with HIV have experienced periods when they were too weak to care for themselves.  Should they be abandoned?  Earlier this year, I heard a nationally- prominent HIV/AIDS advocate state that every year in Washington, for 25 years, he has believed that politicians would ultimately do the right thing in terms of AIDS funding.  He stated that this year, for the first time, this might not be the case, and that indeed essential funding and the lives are in jeopardy. 

    Ironically, self-sufficiency has been central to the AIDS epidemic.  In the 1980s and 1990s, when government was not responding, we at the grassroots level took matters into our own hands.  We were the ones who cared for the sick, who sat with them when their families turned their backs, and who did not let them die alone.  It was demand from the bottom up that fueled services and drug research, and it was persons living with the virus who gave our own bodies for drug trials.

    It seems now that large (and growing) segments of our society have come to view basic compassion, the emotional capacity to experience another’s pain, as a character defect, yet it is an essential element of what makes us human. Neuroscience is beginning to provide some intriguing clues about compassion.   Each of us has "mirror neurons" in our brain that allow us to emotionally simulate and actually experience the pain of others, which causes us to feel empathic distress.  That is, at some level we experience the emotions of others as if they were happening to us.  Such feelings are thought to motivate pro-social behavior.   These mirror neurons have been observed in both primates and other species, including birds.  And while they certainly play a role in imitation and learning, they appear to have an emotional component as well.

    This begs the question: how can there be applause about executions and shouts of "let them die" if we have these mirror neurons that promote compassion?  Buddhists might say it concerns the self-centered focus that flows from the fundamental delusion of believing one is a "separate self," essentially disconnected from others.    This doesn’t have to be the case.  Intriguing scientific research utilizing fMRI studies is beginning to map out areas of the brain that are activated by compassion.  This research is documenting the increased capacity of experienced meditators (>10,000 hours) to rid themselves of a “self-focused delusion” and thereby understand their integral connection with others and experience more intense compassion for other persons.

    When individuals see themselves as essentially separate from others, normal "empathic distress" can actually trigger memories of emotionally painful or upsetting events from their own past.  This can, in turn, motivate them not to experience painful compassion for someone else but actually throw up a defensive posture that reinforces separateness and disconnection from others. 

    When empathic distress is very intense, it can move someone entirely out of a compassionate mode, according to Martin Hoffman (a theorist in this area).  Other factors that negatively impact the ability of empathic distress to translate into compassion include familiarity bias (identifying strongly only with an “in-group”) which inhibits identifying with the experiences of someone who is “different,” and habituation (repeated exposure to distress over time).   

    What does all this mean for the HIV/AIDS community?  I believe we have to continue our grassroots tradition of activism.  Stigma blossoms where there is invisibility and silence.   Such callous and immoral shouts as "let them die" need to be challenged.   The destructive myth that we are all separate from one another, and that anyone experiencing HIV (or any illness, for that matter) is on their own, will lead to further stigma, cuts in essential funding, and deaths.   It also contributes to the fallacy that our destinies, as individuals and as a society, are not inextricably bound together.

    Ironically, despite my anger, I have some level of compassion for these rigidly self-focused, "self-reliant" people.   While this certainly doesn't mitigate their destructive potential, I believe that anyone who applauds executions or shouts "let them die" is, at some emotional level, in pain.   They might benefit from the words of the Dalai Lama: "if you want others to be happy, practice compassion…if you want to be happy, practice compassion."     
   

POSITIVE LIVING 15: CONNECTING HEARTS AND MINDS

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Gulf of Mexico at Fort Walton Beach, Florida, site of the Positive Living Conference

Thebody reduced   This article was originally posted on TheBody.com on David's blog "Riding the Tiger: Life Lessons from an HIV-positive Therapist"

 

Several attendees drove fifteen hours from St. Louis.  Others came by caravan from Atlanta.  In the hotel lobby there were happy reunions of friends who hadn't seen each other since last year.  Overall nearly four hundred and fifty people made their way from 22 states to the white sandy beaches of the Florida panhandle in early March.    It was spring break, but their purpose was much more a matter of life and death.  They were gathering for Positive Living 15, the largest conference in the nation specifically for people living with HIV.

For fifteen years Butch McKay and his small staff at OASIS, the Okaloosa AIDS Support and Information Services, have somehow patched together a variety of funding to create a world-class conference where nationally-known figures share information and support with hundreds of persons living with the virus.  A generous scholarship program underwrites the hotels and meals for most who otherwise would be unable to attend.  Many have no other access to workshops where state of the art information as well as life-saving skills are shared in an atmosphere saturated with both laughter and heart.  

The information provided is first rate.  Martin Delaney, a prominent activist and founder of Project Inform, attended every Positive Living conference until his death.  Other well-known figures continue to lead workshops and deliver keynote addresses.  NMAC, the National Minority AIDS Council, provided support for an update on the 19th CROI (Conference on Retroviruses and Opportunistic Infections) which occurred just days before in Seattle.  Additionally, the North Florida SHARP (State Healthcare Access Research Project) report was unveiled.  This document, a project of the Harvard Law School and the Treatment Access Expansion Project, was one of several that have assembled critical data concerning states' capacities to meet the healthcare needs of people living with HIV.  An annual Activate U Advocacy Academy provided invaluable training on basic advocacy skills and encouraged attendees to make their voice heard.

The workshops were informative, interactive and fun.  Topics ranged from housing to ADAP, intimacy to trauma, and faith-based prevention to laughter therapy.  There were groups for woman, transgendered, and men who have sex with men.  In my own workshop about managing the effects of living with the virus year after year ("When the Crisis Lasts a Lifetime: HIV, Burnout, and Emotional Survival"), the attendees were hungry for information about both the physiological and emotional effects of stress and trauma as well as for solutions and skills to manage that stress.

The real magic of Positive Living doesn't happen in the breakout rooms, however, it takes place in the person-to-person connections made throughout the weekend.  It could be felt in the moving heart-circle on the beach in memory of those who are no longer here, or at the dance where everyone loosened up to rhythms and moved their bodies among somewhat surreal remote-controlled, large-scale inflatable fish.  Most of all, it was evident in the casual socializing where, perhaps for the first time, attendees could relax in a space where everyone they encountered was either living with HIV/AIDS or was an advocate and understood how it feels to survive and thrive with the virus.  

It is this universal acceptance that was truly profound.  Even after thirty years, HIV carries enormous stigma.  The majority of people attending this conference come from the south, many from rural areas where they survive in relative isolation.    Some typically drive one hundred miles to access care, many have been irreparably separated from their families, and each one lives with the burden of social stigma and isolation.  It was a gift to witness the magic of people moving from isolation to connection with others living with HIV.  It was a respite, at least temporarily, to the isolation imposed by AIDS.  When stigma and barriers of serostatus are neutralized, a playfulness emerges.  Strangers feel, and indeed are, connected in profound ways.  People make eye contact, say hello, and smile spontaneously.  There is a conscious acceptance that we are all on this journey together.

The Positive Living conference is a powerful reminder that living with the HIV virus requires much more than medication access, adherence or good medical management.  People living with the virus need information, skills, and social support.    As professionals, we must recognize that the spirit of our patients also needs to be nurtured, because it retains the hurt and shame and fear that accompanies HIV.    

This conference is one of the few places where a large group of individuals can get together and connect at the level of the heart.  It is every bit as essential as daily medications.
It is troubling that every year this conference becomes more difficult to organize.  Dollars are increasingly scarce and the constituents of Positive Living, diverse both in terms of race and sexual orientation, have traditionally been marginalized.   We need to protect this conference and any others that directly serve people living with the virus.  They are unique events that provide skills as well as emotional and spiritual nourishment to a starving population.   It is, or course, necessary to quickly disseminate scientific knowledge but let's not forget the most important constituency in this fight – people living with HIV/AIDS.

 

NATIONAL GAY MEN’S HEALTH SUMMIT TO BE HELD IN FORT LAUDERDALE AUGUST 25 – 29

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Hundreds of gay men and their allies from throughout the country and beyond will gather on August 25 – 29, 2010, at the Sheraton Fort Lauderdale Airport and Cruise Port Hotel to participate in the 2010 National Gay Men’s Health Summit. The theme of the event is  “Creating a Brighter Future: The Next Decade of Gay Men’s Health” and will be held jointly with the 9th annual Southeast Regional Gay Men’s Health Summit.   Over 250 gay men (as well as, bi, trans men, other men who have sex with men and their allies) will gather to reflect on and celebrate gay men’s lives while working on a brighter future for gay men’s health and wellness.

The summit is open to all and registration has been underwritten for residents of Dade, Broward, and Palm Beach Counties by the Broward County Health Department and the Florida Department of Health.   Pre-summit workshops begin on Wednesday, August 25, and include a panel featuring an intergenerational dialog around gay youth, adults, elders and ancestors; another focusing on body image and weight issues; and a gay men’s leadership institute.

The formal summit begins on Thursday, August 26, and concludes on Sunday, August 29, and features a number of plenary speakers and nearly 70 workshops on topics as diverse as addictions, mental health, HIV, wellness, dating and relationships, and spirituality.  Many of the workshops will address special topics and populations, such as HIV negative youth of color, building community among Hispanic gay men, return to work issues for those on disability, and addictions recovery.  The summit is designed to promote social interaction and fun.  A significant number of the workshops are experiential, such as laughter yoga or meditation, and are intended to be edgy, such as the impact of GRINDR on our community and the use of social media to improve gay health and wellness.  Besides casual interaction with gay men from around the country (and beyond), there will organized social events such as a show and a pool party.

The gay men’s health movement grew from an interest in expanding the scope of gay men’s health beyond (but certainly including) HIV to a full range of other issues that impact our health and wellness.  At the Summit, gay men and their allies will have frank and open dialogue about race, racism, identity and gender politics, aging and class. We will discuss these and other domains and paradigms for thinking about gay men’s health. Our conversations will cover the broad spectrum of interests for gay men with key focus on strengths-based organizing, emerging issues, and other hot topics.
One of the key challenges facing gay men is to ensure that we continue to be involved in the strategizing and implementation phases of Health Care Reform. Another key challenge is to develop creative funding strategies and work alongside key policy makers while we simultaneously work with fellow advocates to shape policy such as ADAP and the National HIV/AIDS Strategy.

Walk-up registration is available beginning at 10:00am on Wednesday, August 25.

Finding Your [Spandex-Free] Inner Hero

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Several times a year at New York’s Stonewall Inn (yes, that Stonewall) a number of gay superheroes (well, gay men wearing spandex and fabric superhero costumes) gather together to discover their extraordinary powers.   There are plenty of X-Men and Transformers and even a hunky Superboy or two.   This is “Skin Tight USA,” a gay costume-fetish party that can attract several hundred masked, caped, and otherwise heroically-adorned men (photo by Casey Kelbaugh of The New York Times).

Gay superhero

    It’s great fun, but gay men don’t need to invest in spandex to be heroes – that potential is in every one of us.  Most people think that heroism is a characteristic that one either has or does not (and most of us think we don’t).  Others suspect that heroic behavior is related to some genetic trait, probably inherited by someone else.  Each of us, however, easily has the potential to be a hero because, simply put, heroism is a decision that we make within ourselves to figure out who we really are, how we fit into the world, and then act accordingly.

There are three qualities necessary for heroism, and all involve “other oriented behavior:”

o    Empathy:  relating to someone in such a way that you see similarities between their feelings and needs and your own;                                       

o    Compassion: adding understanding to empathy, and wishing to alleviate another’s discomfort or pain; and

o    Kindness:  being considerate and helpful

 

    We don’t have to lift an automobile off a struck pedestrian or discover a cure for AIDS to be a hero.   Patricia Omoqui, a trainer and coach, wrote that the potential to be heroes lies within all of us if we act from our hearts, see the need of the moment, and step forward.    There are heroes all around us.  Are you one of them? 

David Fawcett, PhD, LCSW

Living Longer by Living With Purpose

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    Purpose Some years ago a friend of mine sold his successful veterinary practice in the midwest, bought a van, and headed to California to pursue his lifelong dream of writing music.  People no doubt thought he had lost his mind, or at least regressed from being a responsible adult to a frivolous adolescent searching for himself.   Years later, he has had some success with his music, but most of all, he has experienced the thrilling notion that he followed his heart.

    Not all of us, of course, have the opportunity to drop out of our lives and begin anew, but we all certainly have the chance to discover what gives our life meaning and follow it to our best ability.  The daily satisfaction is enormous, and so are the health benefits.  A study at Rush University Medical Center in Chicago found that people who followed their life’s purpose were only about half as likely to die over the follow-up period as compared to people who expressed less sense of purpose.   These findings have been replicated in other studies: following your dreams is a protective factor for your health.

For many of us, identifying our personal mission, goals, and objectives is not an easy task.  There are many helpful resources, one of which is Martha Beck’s Finding Your Own North Star.  She outlines several steps that are useful in identifying and following through on living your dreams.

    The first step is articulating what is important to you.  Many experts recommend sitting down without distraction and writing freely about questions such as what makes you smile; what activities cause you to lose track of time; what do people ask you for help with; or what would you regret not fully doing, being, or having in your life.    It will take time and numerous lists before a convergence of themes appears, but it will.  These are your core desires.

    Once you have a notion of your own purpose, it’s important to compare it to how you live your life.   Many of us have unconscious beliefs about ourselves that hold us back – these need to be identified and repaired.  For example, a client of mine had a childhood learning disability that affected his performance in school   He not only had trouble studying, he also believed (and was told) that he wasn’t as smart as others and would never be able to succeed in school.   As an adult he wanted to become a nurse, which required college courses in biology and chemistry.  He took a chance and enrolled, asked for help where he needed it to overcome his learning problems and develop good study habits, and became an “A” student.  He realized his core belief about his intelligence and learning was wrong.

    A second critical step is to compare what life offers you with your own mission and objectives.  The opportunities we accept must align with our goals.  Without the guidance of our life’s purpose in making choices about which to pursue and which to let go, we can become frustrated, disillusioned, or simply burn out. 

    With practice it becomes increasingly easy to know when we our activities resonate with our life’s purpose.  Nurturing our intuition can be a corrective force when we temporarily get off track from the real source of satisfaction and health: cultivating and living our dreams.

David Fawcett, PhD, LCSW

This article first appeared in Out in the News, Volume 3, Issue
21 (April-May 2010), a publication of the Broward County Health
Department, S-Men Campaign for a Safer, Healthier Community.

A Different Longtime Companion: Reflections on World AIDS Day 2009

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 David Fawcett, PhD, LCSWRed_ribbon


It was 1982 when my friend Andrew developed an odd pneumonia that put him in the hospital and ran through his body with such ferocity that he was dead in three days.  My friends and I were stunned, until it soon happened again – this time with another acquaintance who survived longer, but ultimately succumbed to an illness the New York Times called “GRID,” gay-related immune deficiency.  GRID soon became AIDS, and one by one almost all of my friends became sick.

Thus began a journey that continues to this day, first marked by terror, then sadness, then overwhelming grief, and then by sheer determination as we stepped up to care for each other.  My life as a thirty-something gay men in New York was quickly transformed from exuberance in the aftermath of Stonewall to determination marked by caretaking and political advocacy. 

The energy on streets in the Village and the Upper West Side, once both high-spirited and sexually charged, became heavy with sadness.   Many men simply disappeared as the disease confined them to their homes, or their friend’s homes, or hospital wards.  Many died.  Others were out using the patchwork of services that began to develop in response to the crisis.  The streets were filled with the odd sight of thin men with wide terrified eyes walking awkwardly with canes.   I vividly recall one very cold winter day when I helped one frail young man struggle across Seventh Avenue through slippery frozen slush on his way to St. Vincent’s.

Despite persistent optimism and a strong sense of spirituality, for me the eighties became a human tragedy.  My life was entwined with AIDS at every level: intimate, social, and community.  As we lost one friend after another there was nothing to do but go forward, caring for those who were dealing not only with physical illness but also struggling with the emotional pain of rejection and stigma.  And AIDS kept coming.

One price we paid, among many, was never really stopping to grieve because so much needed to be done.  We hardened our emotions and our resolve – there was simply too much to do.    Men of my generation live with a great wound that, for many, remains unacknowledged and unexpressed.  We need to heal, even in the face of the ongoing epidemic.

Now, nearly thirty years later, AIDS continues to create suffering.   For many, it has lost its urgency.  A new generation has grown up with the disease and new medications, and view it as a manageable illness, but it is relentless and continues to demolish lives.  Long term survivors have developed an acceptance of the unknown.  They have given their bodies to drug trials and dealt with multiple losses, either through the death of partners and friends, or alienation from family.  Ironically, they now face a new wave of heart, liver and kidney disease as a result of the medications that have kept them alive. 

We need to remain vigilant about AIDS.  We need to advocate for new treatment alternatives like rectal microbicides and redesigned prevention efforts.  We need to remain informed and fight complacency.  We need to end the stigma that surrounds AIDS to this day, undermining both prevention and treatment.  Mostly, on this World AIDS Day, we need to remember the pain, the lessons, the courage, and the successes of the past and use them to renew and reenergize our continued work to end AIDS once and for all.  

Bikers, Bears, or Beauties: Are We More than Labels?

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Labels lifelube Gay men have perfected the art of labeling themselves in ways that are creative, yet at times, constraining to our identity. After fighting to move beyond stereotypes imposed by straight culture, there is something slightly disquieting about self-imposed categories typically based only on external characteristics and sexual behavior. This is a logical outgrowth of life online, especially social (well, sexual) networking sites where we package ourselves as commodities for quick review by the outside world.

The list of gay labels is long and ever-changing, but provides us with a common lexicon by which to classify ourselves and each other: bears, daddies, boys, twinks, tops, bottoms, barebackers, clubkids…even labels related to drug culture such as PNPers and slammers. Some categories are broad and general, and some are more obsessively developed such as the bear codes, which cleverly quantify characteristics such as furriness, the grope factor, and even the slut factor.

Are these useful? They certainly make finding a compatible sex partner as easy as finding a great shirt on the sale rack at Macy’s. But such labels are also valuable helping gay men forge an identity in the relatively hostile environment that we call gay life. Labels provide guidelines for many men both during the coming out process and beyond, laying out a rich menu of sub-cultures which provide both identity and a sense of belonging.

While labels provide a level of comfort in a homophobic world, I wonder if they don’t confine us as well. I sometimes get concerned that people too often define themselves by externals alone and don’t push themselves to completely discover who they might be as individuals, daring to express that to the world. Labels too often provide cover for ignoring the internal thoughts and feelings that make us unique and, ironically for someone seeking to fit in, for what makes us both likeable and lovable as individuals.

I don’t mean to imply that people are simply slaves to whatever category they have adopted, or that they are confined to just one label, or even that what we call ourselves doesn’t change as we age. I do feel, however, that too often we are complicit in oversimplifying the identity we express to the world which reinforces the stereotypes about our community such as hypersexuality and superficiality.

Another downside of labels is their power to polarize. Too often they reinforce what keeps us separate instead of allowing us to experience what we all share in common. It is as if we have created our own little ghettos by which we limit ourselves from recognizing our strength as a gay community. We can find unity, however, as evidenced recently by the turnout at rallies against Proposition 2. It was truly moving to see a diverse group of gay men and woman as well as our allies coming together as one community to express our unified voice.

Do labels reflect who you want to be? Next time you consider how you fit in or how you are perceived by others, don’t be limited by pre-packaged descriptions. Customize your identity and express yourself in a way that reflects who you really are, inside and out.

Interested in finding out more about this topic and others related to how we connect with other gay men both socially and sexually? Check out my “Connections” group as well as two other groups, “Becoming Mr. Right” and “Finding your Inner Artist,” beginning in January at Fusion Wilton Manors).