Long-Time Activist’s Reflection on LGBT and End-of-Life Movements
By Mickey MacIntyre
I came out as an advocate for end-of-life choice at the same time I did for gay rights. In the ‘80s, it seemed like everyone I knew was dying of AIDS. As the sole survivor of my eleven-member family of friends in New York, I couldn’t believe that my government refused to respond to the so-called “gay disease” while my friends were dying, helpless and hopeless, in the basement hallways of hospitals or not able to get inside at all.
Every year in June, I remember, honor and take stock in those that I have loved and those I have lost. Lesbian, gay, bisexual and transgender (LGBT) Pride month commemorates and celebrates the life, culture and tireless advocacy of my communities. Each year, I remember my fallen friends, like Jaye, Tito, Cris and Rodger, for whom peaceful and dignified deaths were denied by the dual discrimination — fear and hatred levied at LGBT people and the very basic of idea of end-of-life choice — that, not surprisingly, comes often from the same corners. Pride helps me remember the amazing advocates, volunteers and legislators who have literally lost their lives in pursuit of justice and equality. It has been my privilege to work toward advancing the course of change. And I remember every celebration and setback.
This Pride Month, I think about the tremendous success that both my social movements have achieved. I also think of the fragility of those successes, much like life.
And in my over 30 years in this work, Pride helps me remember that our success in achieving human dignity, like access to aid in dying or gay rights, should not be taken for granted or left unguarded. Social change requires vigilance: two steps forward, one step back. Movements have patterns — they start to see success, but the pushback intensifies. Opponents begin to overstep, but we will undoubtedly see a surge to justice.
Coast-to-Coast Activist Reflects on his Journey
By Vincent J. Patti
I came out as gay in 1966. I was 12. My adoptive family would put me out regularly for this. I marched in the New York City Gay Pride March from 1971 until I left the city in 1998.
AIDS descended on NYC in 1979. It was chilling, stomach turning and produced a nuclear level of anxiety in gay men as we began dying in droves. At this time it was called “GRID” (Gay-Related Immunological Deficiency). This ignited an old scapegoat that societies almost all over the world had exploited. “Gay” became the personification of evil, criminality and death that had systematically been associated with gays since the discovery of the word “homosexual” (circa 1870). It was inescapable.
Throughout the early AIDS scourge, we had to go into the hospitals and feed our dying because the nurses were too afraid to serve them their meals. We had to protect gay families because their straight familial cohorts would swoop into their homes and strip everything away from the surviving partner. We had to find funeral homes that would take our diseased and then fight (against their fear of contagion) for open caskets.
In 1982, I became a co-owner and co-director of Chelsea Psychotherapy Associates, the first openly gay group psychotherapy practice in New York City. Two years later our practice had shifted drastically from addressing client issues involving sex and gender to matters involving death and dying. We unwittingly became experts in the field. My three male business partners were lost to AIDS. I survived because I have lupus (these are diametrically opposite immunological diseases).
Very strange things began to happen to my body by the time I came to California in 1998. Nevertheless, the fight for “LGBTQ” rights was marching on. Proposition 8 hit in 2008 and was meant to eradicate any support for marriage equality. We fought hard (especially here in Long Beach) and lost by two percent! A couple of years later same-sex people in California were granted the right to marry.
It was about 10 years ago that I could no longer deny the toll that “full-blown” AIDS and lupus had taken on my body and my mind. I could readily see how close I was coming to a bad death. I joined Compassion & Choices in 2014. All of a sudden I was out there with a sign on my chest and flyers in my hands canvassing throughout Los Angeles and Orange Counties. I must say that I resented some of the initial spokespeople. They were straight, affluent white women who had lost or were losing one nuclear family member to a bad death. AIDS stultified gay culture for two decades, almost completely eradicated the bisexual revolution and bled the emerging LGBTQ community to the bone. I got over it.
What surprised me was nothing I didn’t know but it seemed I had to experience for myself in order to comprehend. One of these things was the (almost animalistic) strength of denial many people showed toward the concept of having to think about the dying process. The other was the multigenerational power of awareness that I found as expressed by families asking question and sharing feelings together.
“I keep returning to my first loves: hospice and palliative care.”
By Yvette Robinson
In 1988, I began volunteering with a community-based organization providing care to AIDS patients. I am not even sure to this day why I chose that path, but I wanted to make a direct difference in the lives of people at their most vulnerable. This was a grassroots organization with no government funding; just a group of people wanting to be part of a turning point in history.
This was way before “treatment cocktails” and other therapies had been developed, and death was fast, but at the same time, agonizingly slow. The vast majority of cases were young people confronted with gruesome, painful symptoms from which every day was torture. Suicide was a choice some made when the situation became intolerable. The method of self-deliverance was not the gentle death they had hoped for, but traumatic methods that left those who loved them with horrific memories of the brutal ways in which they died.
That was probably the most interesting experience of my life and certainly played a part in my decision to become a clinical social worker. Through the years I have worked in just about every area of medical social work, but I keep returning to my first loves: hospice and palliative care.
My commitment to this work and my support of Compassion & Choices has led to more than a few frank discussions with friends and family. More often than not, people with whom I spoke were interested and often conflicted. Medical advances, while brilliant, have placed us at a point where ethics and compassion sit side-by-side, not across the table from one another. I am so thankful I get to be part of this movement. It is the right of every terminally ill patient to make this most personal decision.
“The AIDS crisis is how medical aid in dying first appeared on my radar.”
By Alina Hammer
It was early 1980; our friend Michael had just died of a mysterious disease in NYC. Next, Danny died, again of a mysterious disease. And so it continued. Within a couple of years it became clear that an unknown disease was attacking the gay community. Soon they began calling it “The Gay Cancer”! We thought it was both homophobic and ridiculous that they had assigned sexual preference to illnesses. We sat around making fun of them. Diabetes: gay or straight? Pneumonia: gay or straight?
As it turned out, the joke was on us. Little did we know, the AIDS epidemic was about to strike our community full force. The virus attacked the immune system, so we saw people suffering horribly and eventually dying agonizing deaths. There was no known cure at the time. Folks were asking for help to escape the long and painful deaths they were inevitably facing. We used to say it was like a nightmare we couldn’t wake up from.
Our government ignored what was happening in our community. It was only from within our community that we got help. In the midst of dire circumstances, folks stepped up! In the darkest of times, we showed ourselves to be brave, fearless, loyal, smart, caring and loving. Our unity has remained strong, and now we celebrate our great community every year in June with Pride!
The AIDS crisis is how medical aid in dying first appeared on my radar. So it only seems appropriate to write about this during Pride Month. We promised back then that we would never forget. And we never have. It had been a 35-year struggle when medical aid in dying finally became authorized in California. All the work for aid in dying that I have done, every trek I took to the state capitol to get this passed into law, every presentation I’ve done, every paper I’ve written (including this blog), I’ve done in honor and memory of all those who suffered so unnecessarily during the AIDS epidemic. And every year, throughout the years, I still carry in my heart the memory of my closest friends, Patrick, Bobby, John, Barron … we were all supposed to age together. But instead, they’ve died, and we are the survivors. So I’ve dedicated my life to this cause in their memory. I truly believe this is the civil rights issue of our generation, whose time has come.
And now the End-of-Life Option Act is under legal attack in California. But our community knows what it’s like to have to fight for our rights. We also know what it’s like to make gains, rejoice in the gains we’ve made, only to have them challenged again. I point to marriage equality as an example. Things changed drastically from 1996, when Defense of Marriage Act (DOMA) was signed into law, to 2013, when The U.S. Supreme Court ruled DOMA unconstitutional. During that same session, they dismissed an appeal over same-sex marriage, leading the way for same-sex marriage in California! Our light was shining brightly that day! We went on to see marriage equality become legal nationwide in a June 2015 Supreme Court ruling. Gays and trans folks became accepted fully in the military and more. And now we are seeing those rights we fought so tirelessly for being challenged again.
Since the End-of-Life Option Act is being legally challenged in California, we must once again circle the wagons, rally the forces and stand together in support of our cause. This is part of the ebb and flow of civil rights issues. We know how to do this. It’s important that we remain positive and hopeful. We must keep our spirits up, fight tirelessly and remember this is just a bump in the road. The struggle continues!