The impact of the September 11 disaster on people living with HIV/AIDS

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On September 11th the world changed permanently and unalterably for all Americans. Watching the tragedy unfold, it soon became clear that our previous standards of what had been “normal” for all of us, were now obliterated and rendered obsolete. There are some parallels between the AIDS crisis and the World Trade Center and Pentagon attacks that are interesting both in their similarities as well as the differences.

Just prior to the first plane striking the World Trade Center, I saw it flying dangerously low, directly over me as I was coming home from the gym and thought to myself “that plane is in trouble and is going to hit a building.” Of course I had no idea of what was about to happen and how it was going to change all of our lives. Similarly, picking up the New York Times that July morning in 1981 on Fire Island and reading the article about a rare form of cancer reportedly affecting gay men, I also had no idea of how intimately that report was going to change my life and the lives of so many people within the gay community and worldwide.

New Yorkers rallied together to respond to the emergency resulting from the bombings of the World Trade Center. As a result of this tragedy, New York ceased to be viewed with distrust and contempt by the rest of America. One New York Times article reported that as a result of this attack, it was as if New York City had suddenly become “part of the United States” again for a lot of people. Americans from all over the country flocked to New York to volunteer their services in the relief effort. Countless others donated blood, food and money to aid the victims and relief workers, while simultaneously offering heartfelt support to all New Yorkers, especially those directly affected by the disaster. Since the disaster on September 11, New Yorkers have also come together in an unprecedented way. In the immediate aftermath strangers began speaking to each other and physically helping and comforting one another. There was an enormous amount of comfort in the solidarity and support given to us.

In the early days of AIDS and during the two decades since, the gay community came together and rallied our energies, monies and lives to fight that crisis. Those of us on the frontlines of AIDS care and prevention drew strength and solidarity from one another and were proud of our activism and service to all people affected by HIV and AIDS. But the AIDS activist communities felt abandoned by the rest of America as all too often we were going it alone without the support or even acknowledgment of the majority of Americans.

Just as the spokespersons of the “religious right” used the onset of AIDS to vilify and blame the gay victims, true to form Jerry Falwell and Pat Robertson said that it was the liberals, the ACLU, the abortionists and homosexuals who had led this country into the state of godlessness that left us open to such an attack. Much to the surprise of many who do not think highly of our current president, within hours of this bigoted and divisive tirade the White House released a statement rejecting what Falwell and Robertson had said and pointedly reaffirmed that this was the time for all Americans to pull together. This was a far cry from the too long silence of former President Reagan regarding the evolving AIDS crisis during his presidency.

Prior to the onset of AIDS, middle-class and affluent gay men had begun to revel in the progress we had made politically and socially. Many of us had begun to grow complacent in our growing sense of the inevitability of the gains gay people were making. This led to a sense of safety. Many of us had erroneously assumed that medical science could cure any of the sexually transmitted diseases we contracted during the days of sexual Camelot. Our sense of safety and trust were demolished as HIV and AIDS confronted the hubris with which too many of us had regarding our trust in the invincibility of medicine to keep us healthy and prolong our lives. Likewise, the recent terrorists attacks has destroyed all traces of the complacency with which Americans took our sense of safety for granted. In hindsight we now realize that it was a fragile privilege, just as good health had been for middle class gay men prior to the onset of AIDS. And, as with AIDS, the pain of seeing so many lives cut so brutally short has caused us to lose our emotional balance.

In addition, as AIDS began its decimation, people would just disappear from our lives. Neighbors, shop keepers, and acquaintances from the gym, neighborhoods, clubs, churches and drug treatment facilities would cease to be part of the social and communal fabric. At some point, we would learn that he or she was in the hospital gravely ill or had suddenly died. In the wake of the WTC disaster, people I never knew well, but well enough to nod hello to or regularly see in passing are now suddenly missing. As during the early days of the AIDS epidemic, I am learning of people who never made it out of the buildings or were killed escaping or trying to help. The firehouses in my neighborhood have been devastated, one with five firefighters killed and the other with seven. I would nod hello to these men as I walked passed the fire station. Now I get choked up as I pass and the flowers, tributes and candles honor irreplaceable heroes.

Are People With HIV better prepared for crisis?

Since the attacks on September 11th, I have been asked whether the collective history of people with AIDS, and gay men in particular, in view of the tragedies faced in the early AIDS crisis, brutal hate-related murders, and the experience of discrimination has made us better prepared to handle the current crisis. Prior to the September 11 bombings I would have most likely answered that after coping with the wide-scale decimation wrought by AIDS and the onslaught of hate crimes that we as a community were better prepared to face tragedy. But the scale of the current disaster seems to make our old concepts of normality obsolete. I can only hope that as members of communities who have always lived with adversity and been intimately affected by HIV and AIDS, we have developed the emotional stamina and resilience to give us more emotional, psychological and spiritual muscle for the days ahead.

The process of grieving for gay men has been different than that of heterosexuals in several important ways. Traditionally many lesbians and gay men experienced something known as “disenfranchised grief.” What this means is that the grief of the survivor, and his or her relationship to the deceased individual, went unacknowledged. Thus many gay men and women are not able to be honest at work when a lover is critically ill or to use bereavement leave to mourn immediately following the death of a beloved partner. This results in a lack of social supports during a person’s most emotionally vulnerable time.  Since the entire country is grieving the losses of September 11, it is less likely – I hope — that anyone who has lost a lover or close friend in these tragedies will experience disenfranchised grief.

The New York Lesbian, Gay, Bisexual, and Transgender Community Center offers a grief counseling program called CenterBridge (212-620-7310). Likewise, many mental health professionals who have worked closely with people with HIV/AIDS and with lesbian and gay people are by now experienced working with grieving people. On the Friday and Saturday following the attacks, I volunteered my services at the Armory where family and loved ones went to try and find information about loved ones who were still missing. During those days I worked with numerous other mental health professionals offering what very small comfort we were able to those families. We counseled several gay and lesbian individuals whose lovers were among the missing. Again, this was not a time where sexual orientation was or should have been the paramount concern.  It was just people reaching out to others in their time of dire need.

Support in the weeks and months ahead

People who lost one or more loved ones in these attacks are going to be in need of a lot of support in the coming days, weeks and months. The first thing that anyone can do to show support is to sincerely inquire about how a person is doing. When the bereaved individual begins to tell us, we need to just listen, hold them if they seek that kind of comfort, and inquire about what we can do specifically to assist them at this time. Do they need us to get them food, walk their dog, stay with them, or whatever?  It is imperative that we not give them platitudes like “he or she is in a better place now.” Even if someone is religious in a traditional way and is very comforted by his or her religion, that may not be what they want to or need to hear right now. It is also important that we not tell them that we know or assume that we can know how they are feeling. Even if we ourselves have lost a loved one, each person grieves idiosyncratically and the individuality of how much or how little one cries or grieves publicly must be respected.

We also need to be careful not to pathologize the experience of mourning, making it seem unhealthy to grieve. A lot of people are throwing around the term “Post- Traumatic Stress Disorder” (PTSD), yet in the first month following a tragedy of any kind it is completely normal to experience any combination of the following: nightmares; sleep disorder; general disorganization; bewilderment; irritibility; loss of appetite; loss of sexual desire; bursting into tears or a host of other reactions. Only if the intensity of the emotional reaction does not begin to lessen after about a month after the tragedy is there the possibility that an individual may be experiencing PTSD.

Another crucial thing to know is that immediately following the death of a loved one is when mourners are most likely to get a lot of support. This is wonderful, needed, and appreciated. Yet the weeks and months after the initial mourning has subsided are also a time when he or she will require a lot of ongoing support, and this is the period of grieving and adjustment when a person can feel abandoned or neglected by friends and loved ones. The survivor may also feel afraid of burdening those close to him or her. Weeks and months from now, each of us should remember to call and make plans to socialize with people who have lost a loved one.

Living in New York I observed and participated in integrated efforts by people of all walks of life to try and help. There were spontaneous food banks for the rescue workers. I got continuously choked up just seeing this and trying to do my part to help these efforts. Everything else each of us had been dealing with is now filtered through the lens of our trying to make sense of this unimaginable horror. None of us will ever have the same sense of safety in our lives. As has been true in the HIV/AIDS community for two decades, we all once again have a lot of crying and grieving to do. I hope that we can do that within our communities and as part of the broader American and human society.

Category: AIDS/HIV Articles

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I’ve hurt myself while trying to help myself more than you can imagine, that’s why I want to scientifically analyze every popular self-help technique and ‘method’ there is.