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by Christina Sinding with the Lesbians and Breast Cancer Project Team
What’s lesbian about lesbians having breast and gynecological cancer?
Plenty, according to a recent study published by the Lesbians and Breast Cancer Project team (LBCP), a coalition of agencies and individuals active in the cancer, queer and women’s health communities. LBCP interviewed twenty-six lesbians (twenty-two with breast cancer, three with gynecological cancer, one with both) about their experiences of cancer treatment and support services, and their feelings and ideas about changes in identity, body, sexuality and relationships.
Coming out, again
The study found that being public about cancer parallels coming out about sexual identity – with significant consequences. Cancer and lesbian identity have historically evoked shame, and women share a long tradition of hiding both. Often neither identity is immediately obvious, and so lesbians, and all women with cancer, face ongoing choices about “coming out.” Being public about having cancer, and about being a lesbian, is still a risk. As one research participant says, “telling other people that you have cancer is like coming out, again. People sit there and go, ‘Oh my God you have cancer,’ like you have cooties. People back away. They still do…” [Lillian].
Participants in the LBCP study also point to the ways in which homophobia links up with society’s fear of cancer to take a particular toll on lesbians with this diagnosis, and to require a special kind of courage from them:
It’s very lonely. I had a very good doctor at that time, very lesbian positive. She was all that I had. Even my family....People just have their own reactions about cancer. Some fly away, some stay beside you. I was very clear about what my needs were, and it just, oh, it was one of the saddest, loneliest times of my life.” [Glenda]
In Glenda’s words, it becomes apparent that the social consequences of a cancer diagnosis can echo the sense of separation and aloneness that sometimes accompanies living as a lesbian. Another research participant, Marie, reflects on the same issue. She continues to sense fear in new people who come into her life and learn she has had cancer. Their fear makes her feel “other” – a feeling that is already familiar:
As dykes…from a very young age you feel “other,” you know, like there’s something different about me, even before you know you’re queer. So it wasn’t unfamiliar for me to feel. And I sort of learned to celebrate otherness and that’s okay for me. [Marie]
Because of its echoes with coming out as a lesbian, the social consequences of coming out about cancer may be especially complicated and painful for lesbians. At the same time, as Marie points out, lesbians have developed personal resilience and community resources to respond to being “othered,” and these might be, at times, sources of strength for lesbians with cancer.
The “could be me” theme
Participants in the LBCP study frequently spoke of receiving impressive support from partners and friends. In fact, some participants argued that lesbians may be better off than heterosexual women when it comes to support.
Feeling well supported was connected in part with research participants’ sense that the women around them felt like “it could be me.” The fact that participants’ partners are women and could be diagnosed with a woman’s cancer was a source of understanding and connection. The “could be me” feeling also seemed to draw lesbians into support teams for women they did not know especially well.
Yet “could be me” worked against lesbians as well. As some research participants’ experiences made clear, ideals of support in lesbian community do not always unfold in real life. Participants said that lesbians, witnessing another lesbian diagnosed with breast or gynecological cancer, sometimes identify with her in ways that make support awkward or impossible. Phobia about cancer – perhaps especially strong in relation to women’s cancers – affects the support lesbian communities can offer.
Feeling “less than a wanted person”
Cancer affected research participants’ partnerships in a range of ways, and tended to make lesbians without partners very aware of being alone. Some of the experiences the women interviewed had with cancer revolved around the idea that, with the diagnosis, they became undesirable as partners: sexually undesirable, and “bad investments.”
Lesbians’ worries about being undesirable occur in a context where dating, and sustaining relationships, have particular challenges. Heterosexism means there are very few supports to facilitate lesbian relationships; it also means that lesbian relationships lack institutional frameworks (like nation-wide legal recognition of same-sex marriage) and often lack the sustaining social support of families of origin.
Sarah, for instance, kept her cancer diagnosis hidden because of her worry about how it would affect her possibilities for a relationship -- a worry especially acute because she lives in a small community. Yet as she moved to protect the possibility of a relationship for herself, she also lost a key source of support. Heterosexism and cancer phobia can combine to put lesbians in impossible positions.
The LBCP research also highlights how lesbians with cancer can become (additionally) vulnerable in their relationships. Circumstances of lesser power – like disability, or less secure housing situations for instance – can combine with a cancer diagnosis to create or exacerbate inequality in relationships. The LBCP study raises important questions about how lesbians define relationships when one partner becomes ill; it became apparent during the study that ideas about desirability, partnership, interdependence and equality developed by lesbians with disabilities have much to offer all lesbians diagnosed with cancer.
Lesbian families – outside of the cancer care box
Several women interviewed in the LBCP study talked about how hard cancer was for their partners and children. A central feature of the worry lesbians with cancer felt about their families was the lack of support available for them. Formal support services – support groups, for instance – were inaccessible. As several research participants note, any support group for children that would be genuinely useful would enable children to speak freely about their mothers. Yet to do this, children have to “come out” about their lesbian mothers, and deal with all the reactions this usually generates, and provide all the explanations it usually requires. As one participant, Kate, says, “Do they really want to deal with their sadness and grief and have to explain all that? ...No, they don’t. And neither did my partner.”
Lesbians with cancer often end up putting a lot of their own energy into offering support or trying to arrange support from friends due to lack of formal supports. It was clear in the LBCP research that the isolation some lesbians with cancer experience is made all the more acute with the recognition that their partners and children are also alone.
Cancer support services: no place for lesbians?
The LBCP research documents obvious homophobia and heterosexism in cancer care. In the face of this, it may seem that the lack of lesbian-specific support services, or explicitly lesbian-positive services, is a less serious issue. Yet it was clear from interviews that the absence of services reflecting lesbian realities sometimes ends up in the same place: as an exclusion of lesbians, a denial of standard care. One research participant, Jessica, speaks specifically about her reluctance to be part of a support group where she might encounter homophobia:
You have enough on your plate to deal with, with your diagnosis or your treatment, that you don’t want to deal with [homophobia]….And you sort of feel like, a bit of camaraderie with other women who are going through the same thing and you don’t want to be shunned away from the only place that you can go. Right? You know what I mean? Like what if you got into a support group, came out [as a lesbian] and then had to deal with homophobia on top of everything else? Then you’d be left with no place to go. So it’s almost better to go and hide, or not go at all, than deal with the stigma.
Taking the first step to become part of a cancer support group can be difficult for any woman. But Jessica’s comments point to the need for cancer support workers and volunteers to recognize what it takes for a lesbian to join a support group or service. Lesbians, like women marginalized along lines of race or class, face particular risks, and the decision to join may be more complicated than many health professionals expect.
Paddy and Theresa reported experiences that exactly confirmed Jessica’s worries: they came out, and experienced very difficult reactions from other women in a support group. Even when responses were not obviously negative, the feeling of being “not quite part of it,” not quite “there” in the group, was common among the women who took part in the research. Anticipating this, some of the women interviewed never even attempted to access existing services.
In a few instances, research participants were told that addressing lesbian realities was beyond the mandate of a cancer service. The “not our mandate” line was heard in relation to other dimensions of lesbians’ lives and social realities, as Glenda noted:
[The health professional] said to me, “I can only work with you and your cancer, you’ve got too many things going on.” I was too poor, I was too busy figuring out what I was going to eat.
The notion that lesbians and poor women are “not our mandate” clarifies the position of many agencies; they do not intentionally exclude anyone, but lacking a critical perspective of their own services, they wind up excluding many women. This process of exclusion is much more subtle and hard to identify than outright homophobia. Service providers can easily claim that lesbians are welcome, and some can even point out that lesbians participate in their services. Yet it is often the case that heterosexual, middle class, white, able-bodied women are at the centre of what they do; it is this reality that defines the scope and landscape of many cancer care and support programs.
What’s needed?
“It’s about people with cancer, queer people with cancer talking about their experiences publicly, writing about it. Cancer has to come out of the closet in our community.” [Marie]
“I don’t think we have to reinvent the wheel. I think we can become part of [cancer agencies], but we need to become more visible.” [Marcia]
The LBCP research report ends with a call to cancer care agencies to identify access for lesbians as a priority, and engage in the task of improving accessibility. At the same time, the team looks to leadership from agencies in the lesbian community to identify health issues (and cancer in particular) as a priority, and to develop programs, services and advocacy initiatives.
For the full research reports, visit the DAWN Ontario website, http://dawn.thot.net/lbcp. For a summary report, contact Willow Breast Cancer Support & Resource Services: 1-888-778-3100.
This study was funded by the Canadian Breast Cancer Foundation, Ontario Chapter; Partner groups included the 519 Church Street Community Centre; DAWN Ontario; Coalition for Lesbian & Gay Rights in Ontario; Gilda's Club; Metropolitan Community Church of Toronto; Ontario Breast Cancer Community Research Initiative; Rainbow Health Network; Sherbourne Health Centre; Sunnybrook & Women's College Health Sciences Centre – Social Work & Professional Advisory Committee; and Willow Breast Cancer Support & Resource Services.
Caring for Lesbian Health
Health Canada has reissued Caring for Lesbian Health: A Resource for health care providers, policy makers and planners, as well as a tip sheet and postcard series.
Co-ordinated by the BC Centre of Excellence for Women's Health, the project was funded by Health Canada and Status of Women Canada to raise awareness about the health needs of lesbian and bisexual women, and to improve their access to quality health care.
Available at:
www.hc-sc.gc.ca/english/women/facts_issues/lesbian_health.htm
or call: (613) 957-2991.
Breast Cancer Action Montreal, presents
Think Before You Pink
Breast Cancer, Corporations and You
A lecture by Barbara Brenner, Executive Director of Breast Cancer Action San Francisco.
More and more, we read and hear about "pink ribbon" causes. Not only are there a number of runs, walks and marches for the cure, but manufacturers and retail organizations are asking us to buy goods with the promise that a proportion of each dollar spent will be directed toward research into breast cancer.
How valid are these claims? How much money actually goes to breast cancer research? How many of these dollars are directed toward research into the potential causes and prevention of breast cancer?
Barbara Brenner, Executive Director of Breast Cancer Action San Francisco, will illuminate the politics behind pink ribbon causes -- causes that often divert us from the main goal of stopping breast cancer before it starts.
Where?
D.B. Clarke Theatre, Hall Building, Concordia University 1455 de Maisonneuve Blvd. West, Montreal
When?
Tuesday, September 28, 7:30pm
Simultaneous translation will be available.