When and how did you get involved with SHARE?
I had my mastectomy in late October of 1975. I was taking a class at the 92nd Street Y and I heard there was a breast cancer group forming. It was just to sit and talk. In those days you didn't just sit and talk about breast cancer because there was nobody to sit and talk to. So the idea was to bring a group together to do just that.
In what ways have you been involved with SHARE?
The first year we met there were about ten of us. We talked about having breast cancer, about the emotions, and about the fact that there was nobody to talk to. We began thinking about getting more organized and bringing more people in.
We had no formal name at the time. Suddenly we heard from NOW, the National Organization for Women. There was a woman who had been hired by Saks Fifth Avenue as a salesperson. When they found out that she had breast cancer, they told her she couldn't stay because she wouldn't be able to do the work, she wouldn't be able to reach the merchandise. She said she was perfectly able to but they fired her anyway. So NOW asked us to picket Saks Fifth Avenue.
The members of our group were probably not "out" to much of anybody except their closest relatives. But we picketed and we were covered by NBC television. Of course then we were really out, but we were still not formally a group. There was such a need for a place for women to come together to talk that we began to organize. It was the time of the self-help movement. We became a group in 1976 and incorporated as a not-for-profit. Sandy Berger was president and I was vice president.
At the time, some members wanted only to do support groups. Others thought that the issues were so important we should pursue some kind of action. In the beginning SHARE was mainly a support group organization; it didn't become involved in action with doctors or speaking with legislators until the 80s.
How has SHARE helped you?
SHARE helped me immensely. First of all, I had nobody to talk to. Second, my marriage was in the process of breaking up. I got a tremendous amount of support from SHARE, which gave me courage to know that I could get through this on my own. A bunch of us were very close; talking to others made cancer less isolating.
We then found the courage to become resources for other people who would call us. This gave me a sense that we could do something to help. At the time, the issue wasn't so much about getting information, or knowing what was coming next, because not much of anybody knew what was coming next. Chemo was very new. Sandy Berger went through a second mastectomy and reconstruction, and she was the first person I knew who had ever done that.
I learned from being around SHARE how organizations begin. When people have a disease, they want immediate help. I used to divide the population who came to us into groups. Of 20 people who come in, about five would stay for a couple of months—they got what they wanted, which was somebody to talk to. And a few others might volunteer or answer phones for a while. The smallest group, maybe three, become part of the network that is SHARE, and help it expand.
What is your 40th anniversary wish for SHARE?
That it continues to look for new populations to serve--for example, serving the needs of trans people. And I think SHARE should do something for mothers of daughters with breast cancer. Keeping up with changes in treatment, medication and legislation is essential.