“I Don’t Want to Write the Book” – AIDS and Listening to Women

“I Don’t Want to Write the Book” – AIDS and Listening to Women

By Sharon Walton

Idistinctly remember the first time that I heard the word “AIDS.”  It was 1985.  I was on Castro Street and I heard two gay men talking.  One of them said to the other, “You know what AIDS means? America In Deep Shit.” 

I had been reading about this new disease in San Francisco, and how it had been attacking gay men.  As the disease expanded, I learned that it was spread mostly through the transmission of fluids during sexual intercourse.  I knew immediately that women would be affected, and that women of color would be struck particularly hard.  Insisting that their partners use a condom is the last thing that women would want to do.

Identifying the Hatred

When the panic heightened, it also became clear to me that those with the disease were suffering discrimination.  I felt a great sense of wrong.  Yes, it was first and foremost (at the time) gay men, so there was the hatred of homosexuals.  But the HIV virus didn’t discriminate. 

This was playing out in the press and in public policy as hatred for people who were different.  As an African American, I knew about discrimination.  I remembered the Civil Rights movement; my grandmother had been at the March on Washington. 

This was a new level.  I wanted to be prepared when women of color contracted AIDS/HIV.  At least one woman should have the knowledge to share with women who would — I predicted — encounter this terrifying disease.  I didn’t see any heterosexual women involved at the time, but I figured at least I should do something.

I heard of Shanti Project and the work that volunteers were doing for Persons With AIDS.  At the time, there were practical support volunteers, and emotional support volunteers.  A practical support volunteer was there to do the laundry, cleaning, grocery shopping, take the client to the doctor. 

An emotional support volunteer was there to listen, and basically be there for the PWA.  I was dealing with health issues of my own, and couldn’t commit to the important services of a practical support volunteer.  In February 1988, I went through the training to be an emotional support volunteer.

Holding Secrets for PWAs

There were 70 people in my training.  I think there were five women, and I was the only woman of color. 

One memory stands out.  We were discussing “safe sex.”  The talk focused on how gay men should insist on the use of condoms, and how different that was, and how the men had to get used to having that conversation with their partners.  There were so many people that we had to use a microphone for everyone to hear.  Finally, I felt compelled to take the microphone.  I asked: “What’s the big deal about wearing a condom?  Women have had to deal with the idea of ‘safe sex’ for centuries.  If I’m going to put out, then he should put it on.”

In a nanosecond, I heard my voice through the speakers, and I saw the reaction on the faces in the room.  All of those gay white men were in shock.  I laughed nervously “Oh, my God, did I say that?”  And then everyone laughed.  It obviously was not a point of view that they had heard before.

An emotional support volunteer’s job was to listen to your client. You had to leave yourself and your issues at the door. You listened and validated your client’s feelings, whatever they were.  Your beliefs and opinions had no place in your conversations, unless your client asked about them.  All of your conversations were confidential.  Your client could have the support and love of family and friends, but you could never discuss with them what the client had said to you. 

I held the secrets of my clients. I was the emotional support volunteer for nine gay men with AIDS.  I stayed with three of them through their deaths. 

Soon, I co-facilitated Shanti’s first, and only, group for women who were friends, family, and lovers of persons with AIDS. 

Wishing for the Book

I had not imagined how the disease would affect so many women. We had the mothers of gay men, sisters of gay men, daughters of gay men, fiancées of bisexual men, mothers of heterosexual women, daughters of heterosexual women, and the partners of lesbians.  So many women, from so many walks of life, for whom the only bond was this disease. 

This was 1990, and even in San Francisco, support for women dealing with AIDS was still limited.  There were many questions, and we didn’t have many answers.  One of the clients said it best: “I don’t want to write the book, I want to read it.”

Over the years, I also worked with Shanti staff to better confront the concerns of people of color and women.  As more women got the disease, everyone had to deal with any issues they had about sex industry workers or IV drug users.  And yes, most of those women were African American. 

I became the resource that I had foreseen years earlier.  But I truly didn’t predict that it would become personal.  And then I spoke to my friend, Lillian. 

A Continent Away, Close To Home

Lillian and I had known each other since we were ten years old. We were in the same elementary school, always in friendly competition for first in the class.  She had been living in Zimbabwe with her husband and children for about ten years in 1995 when her husband died of AIDS.  She was tested and received her diagnosis after his death. 

Lillian had had two operations in Zimbabwe before blood was tested.  Treatment for HIV in Zimbabwe always has been next to criminal, in my opinion, and for a woman, no services existed. 

I arranged for Lillian to see doctors in San Francisco, where she was able to get a prescription for one of the “cocktail” treatments.  I sent her information and studies on how HIV affected women differently from men, so that she could stay informed.  I took her on vacation to Cape Town, South Africa. 

Cradling A Powerful Gift

And, as I had done for so many others, I listened.  I could have offered my opinions or been judgmental of her decisions, but instead I kicked into Shanti mode.  I had learned over the years what a powerful gift it is to listen and not to judge.  As hard as it was for me, I was glad to give that to her.  Lillian died in Zimbabwe on September 30, 2003. 

At this time, twenty years after becoming a Shanti volunteer, I no longer have clients.  I occasionally train volunteers. 

Greeting the new trainees, I feel like an old soldier, hardened by years of battle. Although I wish that there were no need for them, I’ve always very glad to see them.

Sharon Walton is an award-winning theater director, arts administrator and museum docent.  She received the “Making Every Day Count” Award from Shanti in 1990 and its “Charles Garfield Inspirational Service” Award in 2002.  She lives in San Francisco.