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Tuesday, December 8, 2015

The costs of invisibility for sexual minority women

When an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.
I am conducting a study of the social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.
Over a series of blog posts, I will be sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.
SGM women are essentially invisible in academic and mainstream breast cancer survivor literature and in breast cancer advocacy movements.  Books written to guide breast cancer survivors through treatment or recovery assume that all women with breast cancer are heterosexual and traditionally gendered. Commonly available breast cancer memoirs are also written by heterosexual women. While SGM women may still find useful information in materials written from and for the female heterosexual perspective, the heterosexism in these written accounts of breast cancer and recovery experiences tells SGM woman that their breast cancer experiences are unimportant. The heterosexism in breast cancer and recovery literature also reflects the heterosexism many SGM women encounter, or expect to encounter, in health care settings. An additional result of this invisibility is that care providers lack a real understanding of how their interactions with SGM women and the different influences in the lives of SGM women function as sources of stress or support for SGM women facing breast cancer.
For SGM women, heterosexist assumptions in the breast cancer literature and in health care settings may serve as sources of stress and as barriers to seeking the help and support they need during one of the most difficult times of their life. Because SGM women with breast cancer may not have access to a community of other SGM women with breast cancer for support, breast cancer can be a stressful and isolating experience. Women may hunger for information from other SGM women who have been through the same experience. As one survivor in the Lesbians and Cancer Project (LBCPT) stated:
I don’t have other lesbians who are survivors around, or I don’t know other lesbians who’ve had breast cancer. And so I haven’t really had a chance to explore other issues that could come up (2004, p. 6).

This study asks if sexual orientation and gender identity are related to stresses and support in the lives of SGM women with breast cancer. This is an exploratory study, using personal stories to learn about the experiences faced by SGM women who have breast cancer. Data is collected using an online survey. The specific aims of this study are to: 1) learn about the breast cancer experiences of SGM women; 2) to explore sources of stress encountered by SGM women facing breast cancer; 3) to explore sources of support available to and needed by SGM women facing breast cancer; and 4) to develop written resources for SGM women facing breast cancer.