by Libby GoldbergÂ
It’s been four months since I was diagnosed with a rare form of ovarian cancer and six months since my long-term partner and I split up. Needless to say, thirty-one has been a fucking hard year for me. Less than five percent of women with ovarian cancer have my type, germ cell, and most of those who do are between the ages of fifteen and twenty. My diagnosis and treatment have impacted my life in deeper ways than I have words to adequately express, both negatively and positively, and I have faced enormous challenges. One of the major factors contributing to my ability to successfully meet these challenges has been my class identity. My recent experiences with cancer have provided me the opportunity to more viscerally understand the individual and institutional privileges I have access to and have inspired me to share this understanding with others in similarly privileged positions. Early on my process with cancer, I made the decision to use all the angles I could, however unfair it might be, to take care of my body and to save my life. While this decision feels like the right one, my experiences have continued to feel complicated and riddled with questions. What does it mean to be a radical with access to the best medical care in the country? What privileges are okay to use? Can I still be part of the “movement”, even though I belong to the owning class? What is the best way to leverage the resources I have towards social change? For those of us whose fire inside burns stronger with the possibility of a just world, where every human need gets met, where we are collectively liberated from oppression, I am hoping that my story will encourage discussion and action.
I am a young person with financial wealth. I come from a family that belongs to the wealthiest 10 percent of U.S. residents. I have never had to worry about having enough cash to cover my living expenses. I attended expensive private schools my whole life, all the way through college and culinary school. My parents own a beautiful lake house, as well as a spacious home in Houston. I earn a middle class wage at my job as a chef, but I had the privilege of choosing a career that I love without worrying about how much money I would earn because I’m debt free and have a safety net. Because of a family inheritance, I have a very large savings account that has continued to allow me a worry-free financial existence. I can take extended vacations. I can even purchase a home in the notoriously expensive San Francisco Bay Area.
My battle with cancer and my experience overall within the health care system have been shaped loudly and clearly by this class identity. For those of us born into wealth, institutional class privileges can often be tough to concretely comprehend. We might understand, on an intellectual level, that our lives are made easier or more comfortable, but it’s difficult to get a sense of how significant a role class privilege plays because we’ve never been without it. We have never experienced its absence, so it is, in a sense, invisible and normal to us; we don’t have to work at being taken seriously by institutions. In her book, Classified, Karen Pittelman discusses institutional class privilege:
“Because institutions are created and led mainly by people with class privilege, our own privilege gives us the inside scoop on how to act and speak when we walk in the front door. We know how to ask for what we need and how to make sure we get it. All the signs of our privilege, especially the ones that are a part of our bodies, signal to those in charge that they should treat us with respect instead of suspicion.”1
Here’s an example of what I am talking about. My caring gynecologist called me early in the morning to reveal the results of my tumor marker blood test, which indicated I had cancer. I began to hyperventilate. One hour later, I met with a gynecology/oncology surgeon and was told that I needed major abdominal surgery as soon as possible. My parents, as every person should be, were unabashedly confident about the high level of medical care that I deserve. They guided me through a process of choosing doctors and making treatment decisions that relied heavily on the expectation of being taken seriously when walking into a hospital. They encouraged me to ask a lot of questions, helped me devise strategies to get my questions answered by inaccessible doctors, and supported me in getting second and third opinions about my diagnosis and treatment. Because my family moves in circles populated by doctors and medical professionals, getting these second and third opinions was unquestionably easier and faster. Within a few days of receiving my diagnosis, I had the home phone numbers and personal email addresses for three extremely qualified gynecologists and oncologists, one a first-cousin of my father’s best friend, another on the same doctors’ basketball team as a family friend that knows me from Passover Seders. I had invaluable conversations with these physicians that helped me reach a deeper understanding of the monster I faced. In our increasingly profit-driven health care system, I felt confident of my care and treatment decisions.
I am aware that a big part of being able to successfully move through that initial maze of information gathering stems from being socialized as valuable by a dominant culture that genuinely prioritizes the health and well-being of rich white people. As a Jewish woman growing up within a Christian dominant patriarchy, I have at times struggled for a healthy notion of self-worth. But for the most part, I have been taught that feeling healthy should be the norm, not a privilege; and people in power, institutions, and society at large have generally treated me this way. This sense of how my body should feel and a lifestyle that supports paying attention to it factored heavily in to my early diagnosis.
Poor women, women of color, transgender people, immigrants, and people in prison are often not treated as valuable by the U.S. medical system that reflects our racist, capitalist, heterosexist, and transphobic society. In fact, western medicine has historically been used in deceptively colonialist and violent ways against indigenous populations and women of color, both domestically and abroad. The “Father of Modern Gynecology,” J. Marion Sims, experimented with surgical procedures on African-American women slaves and Irish-American women without anesthesia. “African-Americans, Latinos, and American Indians have the highest rates of death attributable to preventable diseases that include heart disease, cancer, strokes, diabetes, and AIDS. People of color often cannot access care until the disease is too advanced for successful treatment.”2 The case of Robert Eads, a self described Georgia hillbilly, is a striking example of these disparities. He was a female-to-male transsexual diagnosed with ovarian cancer in 1996. He was refused treatment by over a dozen doctors, and nearly a year went by before he was accepted as a patient by the Medical College of Georgia. Mr. Eads passed away in 1999 at the age of 53.
My privilege as a white person with wealth was present as I faced surgery, in a subtle, yet powerful way: I was spared the legacy of forced sterilization and fear or mistrust about receiving an unwanted hysterectomy. Part of what has been so challenging about my experiences and treatment is that the cancer invaded an especially precious and vulnerable place in my body. Still, I don’t come from a community whose reproductive viability has been directly targeted by the state as a threat to our nation’s “health and well-being.” With historical and current examples of forced and incentivized sterility campaigns against whole communities of African American, Native American, and Puerto Rican women, it is no surprise that many women of color don’t trust the medical system.3 The case of Norma Jean Serena, a Native American (Creek/Shawnee) is an example of what I mean. She was a victim of sterilization abuse in 1970, while living in Apollo, Pennsylvania. Having just unfairly lost her children to the welfare system, Ms. Serena was then coerced into undergoing what she thought was a medically necessary hysterectomy. Years later, she realized that the only reason for her sterilization was being a poor Native American woman. I overwhelmingly trusted my surgeon when he told me that he wouldn’t touch my other ovary or uterus. My privilege afforded me the belief that my doctor had my best interests in mind and that I would not be used as a tool by a racist and capitalist “population control” agenda.
Having never experienced surgery as an adult, the idea of a stranger (however qualified) cutting my flesh open and rooting around in my reproductive organs was almost too much to bear. I was terrified. Nevertheless, my fears were not based in the reality of botched medical care that is too often provided at the overburdened and underfunded hospitals that treat uninsured patients.4 I was understandably nervous about the procedure and hospital stay, since not even rich people are safe from the profit driven system that hospitals have become, but I knew that I would be given some of the best care that San Francisco has to offer.
Next came chemotherapy, of which there is so much I could say. Chemo is really, really weird and really, really horrible. It is quite something to have one’s body flooded with poisons that simultaneously wreak havoc in the body and eliminate life threatening cancer cells. Nevertheless, I am grateful beyond words for the benevolent aspect of western medicine and the researchers who discovered this treatment. As with every step of this path/experience, I again accessed institutional class privilege as I got ready to start chemotherapy. Because of the doctors that my family knows, I was fast-tracked into getting a second opinion on the pathology results from my surgery. I started chemo at the top rated cancer hospital in the country. (I am also lucky that this hospital is in Houston, where I grew up and where my family lives.) Having access to this hospital did prove to be significant medically, as the pathology results came back different there, and it was recommended that I have a second surgery I might otherwise not have had if I received treatment in San Francisco.
Throughout the three months that I underwent chemo and this additional surgery, I continued to access privilege in multiple ways. Unlike many working class women, I did not have stress about money, paying rent, or paying hospital bills while not working. I also could afford complementary therapies. I saw an acupuncturist at least once a week throughout that period, paying for it out of pocket, and I absolutely believe that this increased my body’s capacity to handle the toxicity of chemo as well as the many other physical and emotional stressors I faced. I consistently ate nourishing foods brought to the hospital by my caring family. My mother, who is self-employed, was able to take time away from her job to stay with me in the hospital for all three rounds of chemo, each one requiring a five-day hospital stay. When my outpatient doctor visits and tests swallowed up an entire day, my father did not have to go back to work and I did not have to face those experiences alone.
I try not to cash in on privilege. My anti-racist training was strongly rooted in the concept of “unpacking” white privilege and not allowing it to go unchecked. When faced with the overwhelming reality of my class privilege and its impact on my battle with cancer, I felt the urge to not use all the connections available to me. It’s simply not fair that I can circumvent weeks of bureaucracy in getting a second opinion on my pathology report from the top cancer hospital in the country because one of the doctors there is a friend of the family. Every human being deserves this type of urgency when faced with a life-threatening illness, but so few people get it. Given this disparity, I sometimes felt unprincipled in my behavior. While I was accessing so much privilege, my housemate’s (a physician’s assistant) homeless and transgendered patient was killed on the streets of San Francisco. My intention with this essay is not to make myself and others in my position feel guilty. We deserve excellent medical care and sufficient resources. Everyone does. The problem is that most people in this country don’t get it. Those of us with wealth have a responsibility. It is important that we work to understand the privileges we possess and that we make contributions, of our money and our time, towards ending oppression and a more just distribution of wealth. There are many, many ways to contribute and we all have an enormous amount to gain. I hope that my story inspires reflection, discussion, and principled activism among people with wealth.
Here are a few of my ideas of ways to take action:
* Develop a giving plan and donate your money to social justice organizations that prioritize the leadership of oppressed people in fighting for their own liberation. Inequitable health care is just a symptom of the larger injustices present in our society. It is so important to support community organizations working towards revolutionary change. Resource Generation (reourcegeneration.org) is an excellent place to get support with a giving plan. There are folks on staff who can provide guidance in your process and there may be local chapters in your area hosting community dinners and events for other young people with wealth. The RG published book, Classified: How to Stop Hiding your Privilege and Use it for Social Change is also a great resource.
*Start conversations with your family and friends who have wealth about class privilege and inequity. Encourage them to generate giving plans of their own.
*Support, with your time and money, a local organization that works to improve access to quality health care and cancer treatment for affected communities. Most organizations have systems in place to help you support their work. I’ve compiled a list with the best organizations I’ve come across, many of which are specific to the SF Bay Area.
1) The Women’s Cancer Resource Center, wcrc.org
The WCRC was founded to empower women with cancer to be active and informed consumers and survivors; to provide community for women with cancer and their supporters; to educate the general community about cancer; and to be actively involved in the struggle for a life-affirming, cancer-free society.
Volunteer needs: They need bilingual, English speaking volunteers in their Cancer Navigator program at Highland Hospital in Alameda County. (contact for this program is Joanna Cuevas, 510.601-4040 x109) The center uses volunteers in many other ways. They are a great resource for all questions related to cancer support; and if they don’t have an answer, they will spend time researching for you.
2) Charlotte Maxwell Complementary Clinic, charlottemaxwell.org
The Charlotte Maxwell Complementary Clinic was founded to provide access to alternative complementary modalities of treatment for women with cancer. By providing these services we hope to empower women to have control over their lives and health care choices. The clinic was also founded specifically to treat women because of the particular social, economic, and political realities women face in our society and in relation to the health care system.
Volunteer needs: If you are a practitioner of one of the healing modalities they provide, please consider volunteering with them.
3) Breast Cancer Action, bcaction.org
Founded in 1990, Breast Cancer Action was started by women in a San Francisco breast cancer support group who were frustrated by the lack of knowledge about their disease. Led by the late Elenore Pred, they created an organization that would help transform breast cancer from a private medical crisis to a public health emergency.
Contact Alison Young, ayoung@bcaction,org, to volunteer
4) CARE (Cancer Awareness, Resources, and Education), caresfgh.org
The CARE program was initiated in October of 2002 to provide education and psychosocial support to cancer patients who receive their medical care at San Francisco General Hospital (SFGH).
Contact Blue Walcer, at (415) 206-5901, to support this project.
5) The Second Opinion, thesecondopinion.org
The mission of the secondopinion is to provide multidisciplinary second opinions (free of charge) to adults in California who have been diagnosed with new or recurring cancer. The secondopinion provides a unique service not duplicated by any other agency. Our approach empowers patients and family members because, by receiving clarity of their diagnosis and treatment options, patients have the information necessary to manage their disease, improve their well-being, and to face potentially difficult choices. Often we make suggestions that enhance treatment choices or even confirm the benefits of an existing treatment course.
Please consider making a donation to support this project.
6) Alameda County Cancer Navigator Program
The Cancer Navigator Program is a joint program of Alameda County Medical Center and the American Cancer Society. The volunteers in the program assist patients in following through with their cancer treatment programs. The program can help by making referrals to social and support services, linking patients with translation services, giving emotional support, accompanying patients to appointments, and researching questions about treatment options and about their type of cancer.
Please call the Cancer Navigator at (510) 437-4064.
7) Fertile Hope, fertilehope.org
Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility. They provide fertility preservation financial assistance options for patients whose medical treatments threaten reproductive function.
Please consider making a donation to support this project.
1 Karen Pittleman, Molly Hein, and Resource Generation, Classified: How to Stop Hiding Your Privilege and Use It for Social Change, (Brooklyn, NY: Soft Skull Press, 2005), p.61
2 Taken from Ana Clarissa Rojas Durazo’s essay, “The Medicalization of Domestic Violence”. This essay is included the Color of Violence, the incite! Anthology and is an excellent resource on the historical and current uses of medical violence against women of color in the US.
3 For more information the state’s historical and current use of forced sterilizations and “population control” methods, check out Policing the National Body: Race, Gender, and Criminalization, edited by Jael Silliman and Anannya Bhattacharjee.
4 According to the latest available information from the Census Bureau, a record high percentage of the US population, nearly 16 percent or 47 million people, were uninsured in 2005. The real number is likely significantly higher due to the number of undocumented immigrants not counted in the Census.