By that time her anger had turned to rage, so she turned her rage into direct action. She joined ACT UP/Boston . It wasn't as if this transformed her. Nothing really transformed Keri, except the end stages of AIDS. It was more like she transformed ACT UP/Boston. She became a driving force within that group.
Keri was a loud, in-your-face, smart dyke. There are lots of folks, including some AIDS activists, who didn't like that a whole lot. Keri was into action. She had no patience for talking that went nowhere, no matter who was doing the talking. She didn't see AIDS activism as the "in thing" to do and was angry at the people who did. It was her life on the line and she wanted to make change for herself and others.
I met Keri in 1990 when she came to Atlanta to take part in a demonstration at the Centers for Disease Control that was focused on changing the CDC definition of AIDS to include the infections of women and drug users. We didn't have much of a chance to talk because there were so many actions going on and, of course, Keri was one of the people at the center of it all.
Two weeks later she came to the first women's HIV conference which we had forced the government to hold. It was an eye-opening event for her. The thing that blew Keri away, and made her even more committed to activism, was the way government representatives would try to buy-off activists.
At the conference she went to a reception and the Secretary of Health and Human Services was there. She went right up to him and said: "You know, you've got to change the CDC definition because I can't get disability. Even though I have all these infections they keep turning me down." He took her name and other information, and lo and behold when she got back to Boston she got disability benefits.
Someone else might have stopped right there, but not Keri. What it meant to her was that most infected women were not at that conference, could not meet James Mason, and would keep on getting denied. She got involved in the CDC campaign with a vengeance.
Everything Keri did was with a vengeance, including partying. But, there's no doubt that her activism is what kept her going.
There was no way that she was going to be nice to people who were, in her eyes, trying to kill her by not helping her to live.
It was because of this that she was not accepted as a member of the Community Constituency Group (CCG) of the AIDS Clinical Trials system. Keri had been a member of community advisory boards in Boston and Worcester; she had taught herself about clinical research and pharmaceutical treatments and was very well versed on those topics.
The CCG said they were looking for women, lesbians, and former drug users. Keri fit all three criteria and had done all kinds of AIDS activism. She worked hard on her resume. It was pages long because she had done so much. When she was turned down she found out that certain key members of that group didn't want her because they said she "wasn't a team player."
What that meant was that she was smart, she would tell the truth, she would raise hell, and she would challenge the system. By this time, that group had become part of the system. Even though they were supposed to represent PWAs, all they were doing was making suggestions for minor changes in research protocols and basically rubber stamping research trials. Keri felt that this didn't have much of an impact and really didn't actually mean anything to any one's life.
I also remember when we went to D.C. to do an action at those first meetings about the beginning of ACTG 076, the research about AZT and perinatal transmission.
One of the biggest disappointments in Keri's life was that she was not ever going to have a child. She loved kids and it was always her dream to have one. She desperately wanted to believe that research would find a way for her to do that without putting her baby at risk. But, she was a realist and not an idealist. She felt this was not the research. In her view it was unethical and had no scientific foundation.
Imagine how she felt when everyone, including some members of the AIDS activist community, trashed the action she participated in to change this bad research. They said there were no infected women who took part in the action. Or, how she felt at group meetings afterward, where she was told that she didn't know what this trial was about because she didn't have a child! It infuriated her. So, she kept working against the trial, educating other women about its problems. This is what made her "not a team player", since the CCG never once stood up to fight clearly against this poorly designed project.
Keri worked hard at her activism. She studied and kept up on the latest treatments. She knew her stuff! And, even when she was starting to get really sick, she kept doing AIDS activism. Women AIDS activists, including Keri, had forced the government to finally begin a natural history study of women and HIV (The WIHS, which many of you have heard about). We also forced them to put knowledgeable women AIDS activists and women who actually had HIV/AIDS themselves on the panel to review the grant applications for that study. Keri agreed to be one of those women.
They sent her several boxes full of applications, hundreds of pages long. She and Linda Meredith, who was on the review panel with her, actually read all of it. They talked on the phone, figuring out what was good and what was bad. It was a good thing that they went to the review meeting, because they found out that the "scientific readers" had hardly read any of the material. The "scientists" on the panel wanted to give the money to the people who they knew instead of the people with the best proposals. Keri and Linda stuck it through. It was because of their efforts that in the end, some decent researchers got the money.
Closest to Keri's heart was doing work about drug users. She was part of the AIDS Brigade, one of the first groups that illegally gave out clean needles to drug users. She was proud that she adhered to the principles of civil disobedience and was arrested many times for doing what she believed in.
It infuriated her (Keri was always infuriated) that infected people in methadone programs in Boston had to come to clinics for daily doses often standing in lines that were outside in freezing weather. There was no regard for people who were terribly sick. If they missed appointments because they were sick, they were treated like shit and dropped from programs. She tried her best to do something about that.
She also worked to change the exclusion criteria for AIDS treatment trials. Drug users are often excluded because of stereotypes and judgements from researchers doing studies.
Besides all of her direct-action activism, which included far more than I can ever tell, Keri tirelessly gave educational talks, anywhere that someone would invite her (and in quite a few places where no one invited her). She was an incredible speaker and loved to be in the limelight. She definitely had a big ego but was never selfish, always fighting for other PWAs.
She desperately wanted people to know about how women, especially lesbians, and drug users are treated in this epidemic. She kept a journal all through those years. Once she read parts of it to Linda and me. She told the truth about how she had been treated by all different kinds of people, and it was not very nice. About two and a half years ago she started trying to get all of that into a computer so she could put a book together. She died before this could happen. Now, I want to see if I can help to get it published because I think it would be an amazing book.
During the last year, in and out of hospitals, her saddest feelings were that she was so sick, she couldn't be in anyone's face. She felt she was letting people down. She was going to come to the Women and HIV conference in D.C. last February to give the keynote address with me and Mary Lucey. Two days before the conference, she was trying to decide whether to come or not. She had terrible stomach pains, had an appointment with the doctor the next day, and would probably have to go to the hospital for tests. She wanted to know if I would be very upset if she didn't come. I knew that she needed to go to the doctor. I knew she didn't have the strength to come to D.C. I also knew that she really wanted to be there with us, and that what she had to say was important. I told her the decision was up to her but, I thought her health came first and though Mary and I would miss her, it didn't seem too smart to make the trip. She stayed home. Afterwards, she said she cried because she heard that I had dedicated my talk to her and told people about the important work she had done.
I am not a "spiritual" type person. Keri is dead; she is not here anymore. But, when I am ready to give up, I remember her strength of purpose, her willingness to put her body on the line, I remember her love and I remember her rage. And I go on.