Last month was breast cancer awareness month, which got me thinking about my time interning at the non-profit organisation Breast Cancer Action (BCA) in downtown San Francisco. For two summers running I worked there, learning about political activism and the issues surrounding breast cancer and women’s healthcare. My summers at BCA were some of the most inspiring times for me, working alongside brilliant and strong-minded women and exploring the city of San Francisco. I spent many afternoons amassing rap records in the Amoeba dollar crates and writing in Dolores Park.
The first interview I ever conducted was in the summer of 2009 with former BCA board member Dawn Surratt. I remember taking the bus out to the UCSF campus on Parnassus one brilliantly sunny San Francisco afternoon to chat to Dawn in her office. It was my first experience of probing a person with big and personal questions, and I remember feeling so amazed that someone I had just met would share so many experiences and feelings with me.
Dawn and her stories really inspired me, so I wanted to share the interview here. Enjoy!
Dawn on Breast Cancer Action
There are so many nonprofit organizations concerned with breast cancer in the U.S. BCA really stood out from the pack. Their work really challenged the status quo. Their stance was not about employing pity or sorrow for women who had died of breast cancer or were living with breast cancer. It was about how do you take this illness and turn it into something that is more of a political agenda and more incisive in terms of getting to the roots of the most common cancer with causes unknown. Also, the Think Before You Pink® campaigns caught my attention. They are simple and clever. I think they really help to expand awareness on issues around environmental injustices and the links between what we consume and illness and disease. All the campaigns really drive home the reality that there are businesses, corporations, manufacturers, even breast cancer organizations that don’t “walk their talk.” Every October the market floods with these products that claim to be about raising awareness and saving women’s lives. In reality, they are more about “how do I make my company look good” than about doing anything substantial to end the breast cancer epidemic. So I think this really clever campaign has shed a bright light on these shortcomings, and they’ve not been afraid to spotlight some pretty big players involved in the whole pink frenzy.
On Healthcare Reform and Big Pharma
I don’t know if having a single-payer system will come to the U.S. People will have to get more pissed off. I think people are pissed off, but they need to get more organized at a federal level. I think a lot is happening at a local level—there is a whole lot of drive and energy around getting a single-payer health care system in place. However, whether that’s going to be at a federal or national level, I’m not sure. So I think to the extent that this administration can really overhaul this system, it’s not just about covering the uninsured. That’s part of the issue. Roughly one in four or five [are uninsured], but that’s only a part of the problem. There are people who have insurance, but the premium is really horrible, or families with private insurance whose insurance doesn’t cover certain treatments. What does that mean to cancer patients and someone’s longevity and level of treatment? Ethically, our health care system is perverse. The new administration needs to address these problems. The government needs to take their cue from those who have had serious illnesses or people close to them, not insurance companies or drug companies. I wish I could say that I was hopeful, but I’ve become very cynical. I know what I want to see, but what can I expect? In four years? I hope that the new heads at the FDA will be much more conservative concerning the “fast-tracking” mantras and off-label use, that people in positions of power will use their training to say “no” to the pharmaceutical companies.
On Putting Patients First and Social Inequities
One of the things that this recent presidential election did was to wake up a lot of apathetic voters. So if that level of civic participation can be sustained and that kind of energy can transfer over to the realm of health care, that would be an amazing thing. Regarding breast cancer specifically, I think people need be less lulled by the whole pink ribbon madness.
People talk about breast cancer and raising awareness, which is like running fingernails down a chalkboard for me. Awareness is not the issue anymore; the issue is about who gets treatment. What kind of treatment do they get? What groups of people get treatment? What’s the quality of the treatment? Who lives with this disease? Who dies?
More white women are diagnosed with breast cancer, but in terms of outcomes, if you look at who dies sooner, you are looking at women of color and women who are poor. It has to be a broader discussion. It has more to do with social injustices.
“BCA’s stance is not about employing pity or sorrow for women who have died of breast cancer or are living with breast cancer. Rather, BCA puts women in the driving seat when it comes to self-advocacy.”
BCA’s stance is not about employing pity or sorrow for women who have died of breast cancer or are living with breast cancer. Rather, BCA puts women in the driving seat when it comes to self-advocacy. Their campaigns show people, women in particular, that our bodies are not just things that have things done to them. We can have a say, a big say, in what gets done.
BCA enables ordinary people to get to get in and have their say. For example, recently Breast Cancer Action did a survey on the effects of aromatase inhibitors. For some women these drugs work, but for a lot of others, the side effects are horrible and not worth it. People being prescribed these treatments need to be able to access this kind of information. A scientific advisory board refers information back to the staff. The sheer amount of information is overwhelming—new research findings, conferences, information that needs to be acted on. BCA has taken on the role to be the watchdog of the breast cancer movement. It’s about helping women get to a place where they have a collective voice that gets heard. A collective voice is more powerful than an individual voice. One of the things I’ve heard a number of survivors say is, it’s hard to be your own medical advocate. One of the most important roles you can have for people living with cancer is as a personal advocate. Putting together a team is important. I feel like BCA acts as that advocate; they assume the role as part of that team.
The entire “who lives and who dies” issue is not going to be addressed until we approach some other issues about who lives where, what kinds of foods do they have access to, etc. There is so much emphasis on individuals’ behavior without making the link between choices and what is in a person’s environment. Studies are constantly showing up the gaps in breast cancer diagnosis and breast cancer survival rates between different races and classes of women.
On Sustained Involvement
I was born in 1964, the year of the Civil Rights Act, and there were things that I saw that made me very aware of racism. I know what it was like for my mother. I was not the first black girl at my school. My mother was the first black girl to go to her high school in Texas, and so the kinds of things she encountered I did not have to. I worked in Africa. That was a really humbling thing, in terms of the degree of suffering that I saw. I witnessed absolutely preventable deaths caused by poor nutrition and a lack of access to clean water and anti-malaria drugs and vaccines. These were early and untimely and unnecessary deaths. I befriended some nursing students while I was there, they would tell me about their experiences in the maternity wards. As a nursing student in the U.S. or U.K. or Canada, it is rare to see someone die in childbirth. It happens, but it’s not commonplace. It is just the flip in a lot of African countries—to see a woman bleeding to death, and there is nothing you can do because you don’t have the right drugs. She was too anemic when she came in the first place, and all you can do is watch this woman bleed to death. This is something these nurses witness routinely and experience throughout their work. Breast Cancer Action has taken the experience of breast cancer and said, “This doesn’t need to be as bad as it is.”
You ask how I stop becoming disheartened. A good friend of mine who is an activist in Austin told me she would often say, “Those of us in positions of privilege cannot afford to be disheartened.” If these young nurses cannot be disheartened knowing what they are stepping into, then, well…
“Things change because of people…”
There were many days that I would cry listening to stories in the clinic, but you see what your colleagues deal with day in, day out. I have respect for what these people are trying to achieve with very few resources, not just in terms of money, but human resources. Things change because of people like that. BCA operates on a shoestring budget. Yet they achieve so much. They make changes that matter. What sustains me? Knowing history, knowing fully that people who made really radical change happen did so with far fewer resources than us. They didn’t have the Internet. If they were able to make things happen, then we can, too.