POZ Exclusives : The Mother of All Battles - by James Wortman

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May 14, 2008

The Mother of All Battles

by James Wortman

Sue Caves

POZ: You are now 81; your son Michael died of an AIDS-related illness in 1986, at the age of 35.  How did his diagnosis transform you into an AIDS activist?

Sue Caves: Michael and I had been volunteering at an HIV testing program at the Gay and Lesbian Center in Long Beach, California. One of the things we had to do to be a volunteer was be tested, and we both did. I didn’t even go back for my results—I knew there was no way I would have HIV—but Mike, of course, did.

When he got sick and then died, I realized that he was number 200 in Long Beach that had died at that time. And I realized how many of those young men were throwaways. Their families had thrown them away.

And I also realized that there were parents out there who were so hidden and so closeted. They were more closeted than their gay sons, practically. So I started hanging out at the Gay and Lesbian Center and volunteering my time. Which was a very small thing. Mike died in October. The first big thing I did, I guess, was deliver Christmas presents to people living with AIDS. And then I started a support group called Families Who Care. I had a job selling real estate, but one of the AIDS agencies in town ended up asking me to go to work for them and I did. And I also continued doing volunteer work. I didn’t want Michael’s name to not be forgotten. I’ve worked with Being Alive [an LA-based HIV social service agency] and the Comprehensive AIDS Resource Education Program at St. Mary’s Medical Center in Long Beach. I’ve also done a lot of public speaking. I brought the AIDS Quilt to Long Beach; I was the president of the first Quilt chapter here.

How did that come together?

Through Families Who Care, I learned that some guys up in San Francisco were making a quilt, and I made a panel for my son. And all it said on it was J. Michael Caves and the dates of his birth and death. And it was done in black and white, because that’s how he had just redone his room. And when I got done with it, I just thought, “Oh, it’s so ugly.” And I had it hanging over the back of a chair.

I ended up taking it up to San Francisco, where I have another son who’s married. I told him and his wife, “It’s ugly. I don’t want to take it in; I’m not going to do anything with it.” And they talked me into going down to the Castro and seeing if we could find these guys. Because all I had was a PO box, that’s where I was supposed to mail it. So we did.

We wandered the streets of the Castro, and we saw the quilts in the window, and sure enough it was the right place. [AIDS Quilt founders] Cleve Jones and Mike Smith were there, and I think they thought I was just a crazy little old lady who had gotten loose in a quilt shop, but they were very nice. And I went wandering around, looking at all the panels that were on the wall. And as I was walking out, they said, “Is there anything we can help you with?” And Cleve Jones was up at the door by then. And I said, “My son Michael died of AIDS, I made him a quilt and it’s too ugly and I’m not going to bring it in.” And he said, “None of them are too ugly. Please bring it in.”

And so we went home, my daughter-in-law stitched it up on the sewing machine—I had only pasted it before, I didn’t have a machine—and we brought it in. And they asked me to go to Washington with them. And that was the first time the quilt was ever in DC. And I went to that, and I was a reader in that first year in 1987.

So I ended up reading and doing all the stuff for the AIDS Memorial Quilt. I was so full of myself, I guess, that once I was walking down the halls of the Senate building and saw Teddy Kennedy’s office. And believe it or not, I walked in. And he saw me. And he said he would do something. The Ryan White Care Act was originally a Kennedy bill. So he did do something. He did what he said he was going to do. So that was a wonderful experience. And I went every year with the quilt to Washington for a number of years. One year they asked me to speak, and I spoke standing on the steps of the Lincoln Monument. That was a thrill.

Even after Michael’s passing you kept involved with AIDS work. What do you think Michael would say about the work you’ve done?

I don’t know. A lot of different people have come up to me and said that he’d be proud of me. I was one of the first mothers who was out there screaming, but I didn’t know, I had no idea. I think he’d be glad that I’m such a big booster for the community, because I am. I’ve gotten into lots of quarrels over the years. But things are better now, they really are.

What advice can you give to mothers experiencing what you did?

Support your son. Don’t throw him away. I don’t think people are doing that anymore. I have always said loudly “My son died of AIDS.” And you could feel people cringe almost for a long time. Now they just say, “I’m sorry, Sue, you lost your son.” So that’s the biggest thing. Just hold them close and make sure they get care and get to the right doctors.

How has AIDS activism changed your life?

Wow.  It completely changed my life. I’m 81, a product of a 1930s upbringing. I was such an innocent, about as green as grass about everything. I’m from a generation where women didn’t march in the streets. We didn’t raise our voices for a lot. But AIDS caused me to. And I still do. If I believe something, I believe it and I yell it from the housetops. I’ve got the courage to do it now, and I didn’t before. I could never believe that I actually picketed the White House to try and get Bush Senior to see the quilt. It gave me a life. It gave me a reason. I’ve got other kids—I’ve got seven grandchildren—but this became my passion.

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