Building a new way

Chris Jimmerson
November 30, 2014

December first is World AIDS Day. As the world pauses each year to remember the losses and recommit to the struggle against HIV, it’s important to also remember what community responses to HIV can teach us about working for social change.

I have always been kind of a science and technology nerd. Knowing that, it may not surprise you to hear that many, many years ago, I found myself so excited to test out my new handheld digital organizer that you could plug this accessory into and turn it into a cell phone and wireless internet enabled device. It was sort of a prehistoric precursor to today’s smart phones. The whole thing assembled together was about the size of my head. I dutifully entered the contact information for my friends and coworkers from out of the paper address book I had previously been using.

In those days, I had been working for several years in HIV / AIDS research, treatment and advocacy. In those days, we only had a few approved treatments for the disease, and they didn’t work very well.

Fast-forward about five years, and thanks to the efforts of lots and lots of people, we were beginning to have drug combinations that were working and were keeping people alive.

I was synching my contacts onto a new device, by this point, an early actual smartphone, called a Treo, and I realized there were a bunch of them I needed to remove because the people they represented were no longer alive.

I deleted 37 names that day. Thirty-seven friends and coworkers for whom 5 years had been too long to wait – for whom the new drugs hadn’t come soon enough. Only one of them had been over 40 years old when he died.

In the years since, every so often I have looked back on that time and wondered how people in HIV -related work kept going. Amongst all the sickness and death, how did we sustain the fight and stay in the struggle, when at times it seemed it might never end, never get better?

Ultimately, I think it was because, even in the midst of all the dying, we chose life. We tried our best not to withdraw, not to look away from the suffering, not to sanitize the messiness or anesthetize the pain because to do so would not be living – not really, not fully.

We stayed in the struggle and let ourselves experience and remember the losses, even as they accumulated, because it was the only way to keep fully living; to keep the ability to love without limits; to wholly experience joy; to keep being able to see beauty.

Tomorrow is Word AIDS Day, a day when we are asked to stop and remember. We pause to recognize the real and often unspoken heroes who have stayed in the struggle and helped bring about vast improvements in our ability to prevent HIV infection and to offer treatment to those who are infected. We recommit to the ongoing, worldwide struggle against a disease that still affects far too many.

This morning I think, also, it is a moment to look back on those difficult earlier times of which I just spoke because they may contain lessons that can inform how we fulfill our mission, especially that part of it that compels us to do justice – to work for social change in so many different areas – certainly, given the events of the past week, to work against systemic racism and structural oppression.

Let us begin then by taking a moment now to pause and remember – a time of silent reflection – a time of meditation or prayer if you wish – or simply to focus on your breathing, as we join together in the silence.

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Today, there are an estimated 35 million people living with HIV worldwide and 2.1 million new infections every year. And while we now have the ability to manage the disease and keep HIV -infected people healthy, there are still tens of millions of people worldwide without access to these life-saving treatments, and far too many we have not reached with HIV prevention education. Here in,Texas, the rate of new infections among young gay and bisexual men has more than doubled in recent years, due at least partially, I think, to a reduction in prevention messages resulting from our current political climate.

I think it is important always to remember though, that behind all of those statistics are actual, individual human lives. One of the lessons we learned in the early days of the struggle against HIV is the power of telling and remembering stories from those lives. Storytelling is an essential element of any social change effort. It is a powerful way to raise consciousness, especially in the face of ingrained prejudice and systemic oppression.

So I would like to share with you briefly part of the story of just a couple of those 37 folks I mentioned earlier.

Raul was a friend and co-worker who had moved to Houston from Puerto Rico as a young adult. He was a wiz at all things computer related; a relative rarity in the days when having a computer on every desk was still a fairly new part of office life.

I had hired Raul to work with me on maintaining the human ethics documentation the government required of us for the HIV -treatment studies we were conducting at a non-profit organization in Houston.

Raul was also a DJ, so in his off time, he was working with a vocal coach and English-language instructor because he wanted to be better understood when he got gigs as a DJ. A few blocks away from where Raul and I shared an office, we had a clinical space where our research nurses and volunteer physicians actually saw the people participating in the research studies. Our head research nurse’s name was James.

How shall I describe James for you?

James was in his early 30s. He somehow managed to get his hair to stand up to about here and then fold it back in a kind of semi tidal wave. He wore a ring on every finger of his right hand and had been known to show up for work in a full-length fur coat, even when it really wasn’t very cold out. James could be, oh, how can I say it nicely … flighty.

He was also the best research nurse we ever had, and our patients loved him.

One day, we had just gotten James a computer and printer for his office, and he was trying to get them set up. Raul and I were working on some particularly difficult and detailed ethics paperwork. Every few minutes, the phone would ring, and it would be James calling because he couldn’t get his printer to work. This went on for a good half of the day, until I finally asked Raul to go over and help James get the printer going.

A few minutes later, James called again, about something else this time, and as we were was talking, in the background, suddenly, I heard Raul say in perfect English, “You silly queen. You have to plug it in.”

This elicited a giggle from James who went on to acknowledge that indeed the printer did work much better when connected to a source of electricity.

Six months later, Raul started getting sick.

He fought until the very end. Even after he had been placed in a hospice, he never really accepted that he was dying. I guess very few 27 year olds would.

A couple of years later, James was gone too.

These are difficult and painful stories, and yet they are a part of much larger narrative – a story that while encompassing great loss and sorrow also reveals a defiant sense of hope among a growing community of people who refused to allow disease, discrimination and irrational fear to triumph – refused to accept the notion that it was somehow our own fault for being who we were – refused to accept that our lives didn’t matter. That people of color have had to raise their voices once again and proclaim very similar sentiments over the last weeks has seemed so eerily familiar.

Raul and James were a part of a community of folks who came together to struggle against what at the time seemed to be almost impossible odds. In those early days of the epidemic, it was primarily what we called the gay community – but it was broader than just the gay men being so devastated by the disease. I will always be go grateful to the gay women who joined in the fight and took care of their ailing brothers, even when they themselves were at relatively low risk for the disease. Likewise, I will always be grateful to the folks who were not gay but who joined in this community of hope and struggle out of compassion and a sense that we are all in this together, even though they risked being ostracized themselves when they did. In Houston, it was a bunch of folks from the Unitarian Universalist church who often volunteered with us at the research clinic. I remember one young woman was actually let go from her job because she did. It may seem hard to believe now, but then I just look at the hysteria and prejudice surrounding just a few Ebola cases in the U.S., and, again, it all seems so eerily familiar.

Recent scholarship on how successful social movements occur asserts that creating real social change requires us to do at least three things:

1. Provide services and support to help those harmed by social problems until the change can be made.

2. Raise our prophetic voices – speak truth to power and dismantle oppressive structures and institutions.

3. Realize that those first two things are necessary but not sufficient. That to bring about real and lasting change we have to build new institutions and social policies to replace those we have critiqued.

And we have to do all of this at all levels, from local community organizing to building powerful institutions at the national and worldwide level.

As we have seen in Ferguson, Missouri, and indeed across our nation in the past weeks, sometimes the very institutions meant to provide justice, to protect and serve, have themselves been permeated with racism and injustice, so we have to envision new institutional forms and policies. We have to build a new way.

That early community that joined together in the struggle against HIV disease did exactly that.

When the government was not providing adequate HIV prevention messages, they created them.

When there were far too few clinics for HIV testing, counseling and treatment, they built them. When the existing research institutions were too slow to test promising new therapies and get them to folks who had run out of treatment options, they created community-based research organizations.

When the disease spread to new populations, they were the first to adapt and to invite new people into leadership.

When there was no voice in the halls of power in Washington DC for those suffering from the disease, they stormed the barricades and built institutions with real political power. They built new ways, and I think that this idea of creating institutions, building new ways that may not yet exist, can inform how we do justice regarding a variety of social challenges, whether it is dismantling systemic racism or our struggle to save a severely threatened environment.

So let us now dwell for a moment in the spirit of this idea by rising in body or spirit and singing together hmn number 1017 in the teal hymnal, “Building a New Way”.

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During the first Bush presidency, a group of us had gone to Washington DC to participate in a March on the Capital to demand greater support for HIV prevention, treatment and research. On the day before the march, we went to see a display of the AIDS Memorial Quilt, which had been laid out on the National Mall across from the capital. The quilt was built of rectangular panels sewn by the loved ones of persons who had died of AIDS. Often, they had sewn in photos and used fabric from something their loved one had worn to commemorate them.

The crowd that day was a patchwork of people much like the quilt itself – gay, straight; a variety of nationalities and ethnicities; men and women who had lost partners and spouses; parents who had lost children.

As we walked around the panels, above the noise of our murmured conversations, a group assembled on an outdoor stage that they had put up nearby, and one by one, they stood at a microphone and began reading names – the names of the dead represented by each of the panels of the quilt.

And after only a short moment, a quite fell over the crowd, we became very still, standing in silence and a sense of timelessness until only the sound of the names being read remained.

I did not consider myself religious at the time, but looking back on it now, I can sure understand where a concept like the Holy Spirit may have come from.

It was as if a spirit began moving among us during the reading of those names, and together we somehow all knew, each of us, that we had to keep going. We had to sustain the fight. We had to stay in the struggle until there were no more panels to be sewn – no more names to be read.

No more contacts to be deleted.

And even in our sorrow, maybe even because we were allowing ourselves to fully feel it, there was a beauty we could still see.

Looking back on it now, it was a moment of clarity that informs me even today. To do justice and to make community and nurture the spirit, far from being opposing dualities, these efforts, they need each other. Together, they form spiritual experience. They sustain us and help us stay fully engaged.

And though, as I outlined earlier, there is still much work to be done, people stayed in the struggle against HIV disease, many of them for 30 years now, and they have made huge differences throughout the world, even up against what at one time seemed impossible odds.

They built new ways, and so can we, whether we are doing justice in our world or facing the challenges of our daily lives. Even when the way forward seems long and difficult, as it has for many of us this past week, we must not give in to despair. In fact, these may be the times when it is most vital to:

Stay in the struggle. To live fully. To love without limits. To wholly experience joy. To keep finding ways to see beauty.

I think that is what religious community is for. We help each other live in these ways.

These are the ways that will move us toward creating institutions of compassion and justice. These are the ways through which we nurture our spirits. These are the foundations upon which we build.

Amen.

Benediction

Know that, as you go back out into the world now, there is a love that you carry with you beyond these church walls.

Know that the great mystery of our interconnectedness cultivates seeds of hope for justice and compassion.

Know that nearly boundless possibilities are still ours to create.

Go in peace. Go in love. Go knowing that this beloved community awaits you and holds you until we are together again.

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