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About Lesbians and Cancer
actually a title that says, 'Lesbians and Cancer' - I could not believe
it when I saw that those two words actually existed in the same sentence.
I mean seriously, that's the first time I've ever seen it, you know."
~ Sarah (research participant)
Summary Research Report
The Lesbians and Breast Cancer Project
and Breast Cancer Project was a community-based participatory
study conducted in Ontario, Canada in 2003. We interviewed twenty-six
lesbians diagnosed with a 'woman's cancer' (twenty-two with breast cancer,
three with gynecological cancer, one with both) about their experiences
of treatment, cancer care, and support, and their feelings and ideas
about changes in identity, body, sexuality and relationships. Demographic
information about the women can be found on the last page of this report.
This document is
a summary of our research. Scroll below for details
about how to obtain a copy of the full research report.
Members of the
Lesbians and Breast Cancer Project Team
Maureen Aslin ~ Jennifer Alexander ~ Lisa Barnoff ~ Pauline Bradbrook
~ Miche`le Clarke ~ Teri Henderson ~ Pam Grassau ~ Patti McGillicuddy
~ Fran Odette ~ Samantha Sarra ~ Chris Sinding ~ Anna Travers ~ Danielle
Breast Cancer Project Partner Agencies
The 519 Church Street Community Centre
DAWN Ontario: The DisAbled Women's Network Ontario
The Coalition for Lesbian & Gay Rights in Ontario
The Metropolitan Community Church of Toronto
The Ontario Breast Cancer Community Research Initiative
The Rainbow Health Network
Sherbourne Health Centre
Sunnybrook & Women's College Health Sciences Centre - Social Work
& Professional Advisory Committee
Willow Breast Cancer Support & Resource Services
the draft report (research participants and members of the Project Team)
Danielle, Fran, Glenda, Jennifer, Kate, Laura, Lisa, Liz,
Maureen, Miche`le, Pam, Patti, Pauline, Samantha, Teagan, Theresa
Cancer Community Research Initiative
Lisa Barnoff and Pamela Grassau, Research Facilitators
Chris Sinding, Research Coordinator
project was made possible with the generous support of the
Canadian Breast Cancer Foundation, Ontario Chapter
and Cancer: Coming Out Again
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]
For lesbians, being
public about cancer has parallels with coming out as a lesbian. Cancer
and lesbian identity have historically evoked shame, and we share a
long tradition of hiding both. Often neither identity is immediately
obvious to others, 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. People may - and sometimes
do - back away (and worse); certain aspects of our security (like our
jobs) may be jeopardized.
You get that
look on some people's faces that, you know 'oh, she's got cancer.'
Some of my friends stopped calling me. Some of them couldn't deal
with it. And that's when I needed them the most
It takes a tremendous
amount of courage to go through this, being a gay woman and being
with breast cancer, it really does, it takes everything you've got.
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 - there was the thought that I'm
lesbian but then the other thing about cancer. 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]
These quotes point
to the ways homophobia links up with society's fear of cancer to take
a particular kind of toll on lesbians with this diagnosis, to require
a special kind of courage from them, as Laura says. In what both Laura
and Glenda say, we can see and feel how the social consequences of a
cancer diagnosis may echo the sense of separation and aloneness that
sometimes accompanies living as a lesbian.
Marie talked about
this as well. 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:
from a very young age feeling 'other', you know, like there's something
different about me, even before you know you're queer. So it wasn't
an unfamiliar, that's not an unfamiliar thing for me to feel, other.
And I sort of learned to celebrate otherness and that's okay for me.
Because of its echoes
with coming out as a lesbian, having friends 'fly away' when they learn
about cancer may be an especially complicated and painful experience
for lesbians with cancer. At the same time, as Marie points out, lesbians
have had to develop strategies for dealing with the feeling of being
'other,' and we can see how this might be, at times, a source of strength
for lesbians with cancer.
After Lillian spoke
of the difficult parts about 'coming out again', she noted a flip side:
The other side
is, [after I said I had cancer] people came forward and said, 'my
mother had breast cancer, my sister had breast cancer, my grandmother
had breast cancer, I had uterine cancer, I didn't tell anybody
As Lillian suggests,
coming out about cancer does hold possibilities for connection. Many
of the women who took part in this research felt immensely well supported
by their partners, friends and communities, and some found community
with heterosexual women with cancer.
In fact, some participants
argued that lesbians may be 'better off' than heterosexual women, when
it comes to support. Several of the women we interviewed spoke of feeling
really well understood by lesbian partners and friends. Part of this
capacity for understanding is, as Rosalie says, the shared experience
of having a woman's body:
has ovaries. My partner has a uterus. My partner could be in my position.
My partner knows what it's like to live in our world and have a uterus
and ovaries. My partner knows that it can be difficult to talk about
in general society. My partner knows what a check-up means, and submitting
to all that poking. [Rosalie]
A few research participants
felt their partners, because they are women, were particularly able
to be present and to connect emotionally. And some of the women we interviewed
experienced other lesbians as offering especially well-organized and
competent care. In speaking about these qualities, research participants
made reference to traditions of lesbian community organizing; they also
explained that caring for gay male friends and colleagues with AIDS
has provided lesbians with a store of knowledge about care teams and
networks. It was clear from this research that support for lesbians
with cancer in lesbian community can be emotionally engaged, competent,
well organized and immensely meaningful to the woman with cancer.
At the same time,
several of the lesbians we interviewed had experiences that ran counter
to the idea that women partners and lesbian friends are especially emotionally
available, or good communicators; one woman, for instance, regretted
that she and her partner "didn't talk about the cancer hardly at
all." And it was in part comparing her own experience to what she
saw happen for men with AIDS that Marcia found lesbian community organizing
in relation to cancer lacking. She said, "I think we did a terrific
job in terms of the HIV/AIDS epidemic, but ... How do we care for each
other, rather than how do we care for the boys?"
Marcia went on to
describe many ways that lesbians could (and haven't, as yet) create
support for lesbians with cancer using existing services. Along with
other participants, she raised the need for formal lesbian-positive
cancer services where informal networks are not strong and in situations
where care is needed over long periods of time.
Women who did not
always get the support they expected from other lesbians talked about
some of the possible reasons. The main one was the 'could be me' factor.
Theresa identified a number of different aspects of 'could be me' that
may have made it hard for her friends - and may more generally cause
struggle for lesbians who do not have cancer - trying to support lesbians
like 'wow, what if I lost [my breasts] ... how horrible would that
be, you know? Who'd want to touch me?' Like all those issues when
you lose body parts, right? [Theresa]
Fear can also operate
at a community level. Marcia, for instance, said she "did feel
invisible as a cancer survivor, in the lesbian community
like I represented the fear of all lesbians, of getting breast cancer."
And Theresa observed,
other lesbians "know the resistance they've had in the hospitals."
Other lesbians know what it's like to experience and worry about homophobia
in the health care system. Theresa suggests that this point of connection
can lead to lesbians focusing on how hard it would be for them, and
how they would handle the situation, rather than being present with
the lesbian who has cancer.
It seems from this
research that as lesbians we hold certain ideals about support in lesbian
community. Sometimes our ideals match reality really well, and support
for lesbians with cancer can be immensely sustaining for individuals,
as well as a kind of community achievement - something to really appreciate
and celebrate. At other times, the notions we have about how well we
support each other do not come true, making times of isolation especially
It was also clear
from this study that the 'could be me' theme worked both positively
and negatively. It was a source of understanding and connection - the
fact that Rosalie's partner "could be in my position" helped
Rosalie feel understood, for instance. The 'could be me' factor also
seemed to draw some lesbians into support teams for women they did not
know especially well. On the other hand, the feeling that it 'could
be me' may lead some lesbians to distance themselves from lesbians with
In a more general
way, the fear generated by cancer and the lack of dialogue about the
illness in lesbian communities, contribute to the isolation of lesbians
with cancer. Our 'phobia' about cancer - perhaps especially strong in
relation to women's cancers - affects the support lesbian communities
Here's a stereotype: lesbians like hair in places heterosexual women
don't (legs, armpits); lesbians don't like hair in places heterosexual
women do (heads!). Like all stereotypes, it's wildly overly simplified,
yet it links in with ideas that society has about lesbians, and ideas
that lesbians have about ourselves, in ways that are relevant to lesbians
causes hair loss all over a woman's body. Many women cut their hair
short before chemotherapy. For the lesbians we interviewed, having very
short hair, a shaved head or being bald was sometimes linked with a
positive lesbian identity:
I always struggled
with, 'OK, so, how dykey can my hair go and still pass, still be acceptable?'
So it was the first time I could have a legitimate absolute dyke haircut.
And so for me it was liberating
[and] sort of in tune with, we're
queer, we're here, and we're not going away! [Marcia]
For Marcia, as for
Mary Lou and Paddy, having very short hair was a way of affirming a
lesbian or a butch identity and a way of maintaining or connecting to
power. Constance also noted that in queer community, a bald woman is
not necessarily seen as a woman with cancer. She said this meant that
she was treated "like a normal human being." Queer culture
and community lend hair loss a wider range of meanings for women than
does the dominant culture, a fact that may be a source of strength for
some lesbians with cancer.
Yet for some of
the women we interviewed, there was nothing good or normal or powerful
at all about hair loss. Rosalie, for instance, loved her long hair,
and found it "so hard to go bald." For Teagan, losing hair
during chemotherapy was part of "not feeling human." And Laura
spoke about hair loss as "dreadful."
While lesbian identity
might allow some women to buffer or even find power in the impact of
hair loss, it was also clear from our research that hair loss can disrupt
identity and be traumatic and disempowering for lesbians.
of physical strength
Many of the women we spoke with talked about how physically active they
had been before their diagnosis. A few had regained their fitness levels
and were feeling strong again after treatment. Other women told of how
cancer treatment had stopped them - in some cases over long periods
of time - from being active and strong in the ways they had enjoyed.
A few of the women specifically said that being athletic was, for them,
part of being a lesbian.
We can understand
the connection between being athletic and lesbian identity in at least
two ways. Again risking a stereotype, we can say that women's physical
strength and competence are especially valued in lesbian culture (in
contrast with norms of femininity valued in the wider society). It is
also the case that, especially outside urban centres, sports teams are
a rare safe public space for lesbians. A cancer diagnosis and the effects
of treatment, then, can challenge a lesbian's valued identity around
physical strength and fitness, and it can disrupt her connection with
Paddy, for example,
was once an athlete, and, in her own words, a person who would "never
back away from a fight." The effects of cancer treatment along
with severe arthritis and heart problems mean she can no longer walk,
run or dance; she takes a three-wheeled scooter when she goes out. As
she said, "I am this butch dyke who's falling all over the place
like a lost lamb." Paddy spoke about the ways cancer may be an
acute challenge for butch lesbians whose identities are especially linked
to physical strength. The challenge may be even more severe and complex
for lesbians for whom cancer is part of a series of physical changes,
changes that are experienced by some women as ongoing losses.
One thing that became clear over the course of this research is that
lesbians have very different understandings of what breasts mean and
how to deal with breast loss. Some of the women we interviewed believe
that lesbians rely less than heterosexual women on the social symbols
of womanhood, including breasts, and are thus less affected by breast
loss. Several said they think that heterosexual women struggle more
with breast loss because men value breasts.
emerge here - that lesbians with cancer are less affected by breast
loss than heterosexual women and that lesbian partners (and potential
partners) care less about breast loss than male partners do.
How did these themes
play out in our research? Several of the lesbians we interviewed told
us that they knew their partners were still attracted to them; breast
loss had not diminished that attraction. One woman said she knew women
around her continued to find her sexy. Another told us about the tattoo
she has on her chest and how it inspires other lesbians.
Yet some women did
say that breast loss affected partners and potential partners in negative
ways. One woman talked about the strength she initially drew from 'the
lesbian belief' that changes to her appearance would not affect her
desirability or lovability. It was especially hard, then, to find out
that sexual partners sometimes did not want to touch her breast.
And most of the
lesbians who spoke about these issues described some level of personal
struggle about what had happened to their breasts. Contrary to the idea
that breasts matter less to lesbians than to heterosexual women, some
women we interviewed felt strongly that breasts, and breast loss, matter
more to lesbians:
I think lesbians
really identify with their breasts, you know, as a sexual thing
As a woman
who loves women and loves women's bodies it's hard for me to imagine
that another person could love me completely without having all of
my body there. [Jessica]
It is not especially
a problem, of course, that some lesbians think breasts matter more to
us, and some think they matter less, than they do to heterosexual women.
What becomes a problem is when these messages turn into prescriptions
and judgments for lesbians with cancer. For instance, lesbians in our
research heard 'shoulds' about breast loss - that as lesbians, they
should wear prostheses or have reconstructive surgery, or conversely,
that they should not.
Theresa talked about
how for a lot of her lesbian friends, Pride Day (and lesbian community
more broadly) is "all about their bodies." Her friends label
the women around them as dykes or femmes. In this context, her friends
encourage her to wear a prosthesis. " A lesbian femme, that's what
they call me," she says, "with ... no breasts! So where do
Lillian heard an
opposite message. She talked of reading accounts about "the patriarchy
forcing implants upon you," and lesbian survivors saying "'I
was proud to not have boobs'... It was like that, sort of strange, judgmental
bit about, you know, somebody wants to be femmy, 'oh, well, they're
Here, Theresa gets
the message that she can't be a proper lesbian (at least not a proper
femme) without breasts, while Lillian hears that she can't be a proper
lesbian if she chooses to have breast reconstruction.
Perhaps the central
lesson here is that the beliefs we hold in lesbian community about breasts
and breast loss are contradictory and linked with our relationship to
societal ideas about what women should look like. Certainly as lesbians
we have been oppressed by these ideas, and we have good reason to be
wary of them. Yet this research shows that our beliefs about breasts
sometimes suggest there is one 'right way' for every lesbian with cancer.
With breast and gynecological cancer, sexual parts of a woman's body
have disease; they are screened, monitored and repeatedly examined.
Cancer treatment is in many ways violent, albeit unintentionally. The
procedures and feelings of being violated can become entwined with sexuality.
In our interview, Marie said that for years after her diagnosis of cervical
cancer, she could not separate the fear and sadness cancer had generated
from sexual practice:
It was very
emotional for me to be sexual for many, many years
I felt very
protective of my body, my cervix, my vagina
I was afraid, sort
of, you know, if I got fucked too hard
In some totally irrational
part of my brain [I]was thinking, 'it's going to activate the cancer;'
that's where the crazy place was. [Marie]
Several women we
interviewed spoke about missing (or anticipating missing) their breasts
and nipples in their sexual lives - and also about how infrequently
this particular issue is talked about.
Some of the participants
spoke about the specific ways that a woman's cancer affects lesbian
sexuality. Kate explained that when two women are being sexual, and
one has had a 'woman's cancer,' it is hard to avoid awareness of the
cancer. As she says, "the fact that my body and her body are different
in that way is always present in that relationship." In very basic
ways, women's bodies mirror one another; with cancer, the mirror shows
a change, an absence, a loss. As well, of course, lesbians know what
it is like to touch another woman's body sexually. When a lesbian loses
a breast, she knows what her sexual partner misses in a very personal,
The loss or changes
in a breast, or the changes to the function, appearance and feel of
sexual organs that can come with gynecological cancer, are a kind of
double loss, then, to lesbians with cancer. The sameness of bodies in
a lesbian relationship may make the effects of treatment for a 'woman's
cancer' especially complicated and difficult.
than a wanted person'
Several of the women we interviewed spoke about the feeling that, with
a cancer diagnosis, they became undesirable. Worries about being undesirable
were especially present for women who were dating or thinking about
You feel like
you're never going to be in a relationship again. You go through that
mentally in your head, 'OK, who's going to want to deal with this?'
you know. And then you feel less than
oh, less than a wanted
person, I guess. [Laura]
Sarah 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
about finding partners occur in a context where dating can be a serious
challenge. Heterosexism limits lesbians' capacities to be out and visible
and makes it harder to find or identify potential partners. Heterosexism
means there are very few supports to facilitate lesbian relationships.
Women who were in
relationships at the time of diagnosis sometimes faced the possibility
that their partners might leave. Even women in very established relationships
felt a niggling worry. These worries are heightened in a context in
which 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, for example. As Marcia said, lesbians
"don't have the supports in terms of relationship stability to
handle [the added] pressure [of cancer]."
and inequality in partnerships
Our research uncovered many ways that cancer made lesbians vulnerable
in their relationships. Liz spoke about how cancer created a situation
where her (now ex-) partner emphasized her 'failings.' Liz felt she
wound up in this diminished position "partly because I was aware
of the fact that I was no longer perfect. You know, half a breast gone,
and always the fear." She went on to talk about the other factors
involved in this changed dynamic, including an accident in which her
feet were permanently injured. As she says, her mobility limitations
were not related to her cancer diagnosis. Yet it was clear in Liz's
story that circumstances of lesser power, like disability, can combine
with cancer to create inequality and vulnerability in relationships.
It was in fact two
women with multiple health problems and disabilities who spoke about
their 'second class' status in the bluntest language. Liz told a potential
partner, "you don't want to take this on." Paddy, who lives
with heart problems and severe arthritis, said, "I'm afraid to
try and find another mate
Who in the world is going to take on
somebody like me?"
These words link
with the general worries that lesbians with cancer have about their
desirability as partners. Yet the strong language here alerts us to
the ways women with disabilities and multiple health problems may already
be viewed, and come to internalize a negative view of themselves, as
'burdens.' A cancer diagnosis, for lesbians living with disabilities,
may go beyond anxiety about desirability; it may exacerbate existing
power imbalances between them and lesbians who do not deal with the
Theresa talked about
the ways cancer and cancer treatment meant she could not live up to
her ideas of what it means to be in a relationship. In a relationship,
she said, there is growth - and her growth stopped. She and her partner
could do very little together because she was so ill. Similarly, Pauline
had a hard time thinking about herself as a 'partner':
What does partnership
mean when it's unequal? What does equality mean ... in a partnership
in which one can barely manage to tie up her shoes? Can't, in fact
... can't bend over to reach them. [Pauline]
Like Liz, Pauline
talked about the personal cost of dependency, the personal struggle.
She also pointed to the ways that broader social factors - her inability
to work and her financial situation - affected her capacity to "give
back" in the ways she had before her diagnosis.
Pauline, Liz and
Theresa raise important questions about how lesbians define relationships
when one partner becomes ill or acquires a disability. Both independence
and relational equality tend to be valued in lesbian communities; it
is possible that cancer, and especially metastatic cancer, challenges
these values in ways that are particularly difficult for lesbians. Yet
we must remember that we draw our ideas about equality and independence
from a society that focuses on 'ability' as a measure of desirability
and that values certain kinds of independence over others (physical
and financial independence are especially valued, for instance). The
understandings of desirability, partnership, interdependence and equality
developed by lesbians with disabilities have much to offer lesbians
diagnosed with cancer.
Several women we interviewed 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. The women we interviewed did describe friends attempting to offer
support to their partners and children. Yet formal support services
- support groups, for instance - were inaccessible.
As several research
participants noted, any support group for children that would be genuinely
useful would enable children to speak freely about their mothers. This
would mean that they would 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. Children of lesbian parents
are in this situation frequently. As Kate said, when a parent has cancer,
"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."
That support was
so unavailable for partners meant that lesbians with cancer often ended
up putting a lot of their own energy into offering support, or trying
to arrange support from friends for their families. It was clear in
this research that the isolation lesbians with cancer experience is
made all the more acute, with the recognition that their partners and
children are also alone.
Families of Origin
In lesbian communities it is well understood that our relationships
with families of origin can be strained, sometimes entirely hostile.
Breast cancer forced Sarah into very difficult conversations with family
members who had told her she would go to hell for being a lesbian and
had disowned her. She makes the point that instructions from health
professionals that might seem relatively straightforward - for example,
for a woman with breast cancer to gather her family's cancer history
- can be immensely complicated and painful for some lesbians.
A few of the women
we interviewed were coming out around the same time they learned they
had cancer, so their families learned about both at once. Teagan's mother
had been "in denial" about Teagan's sexuality. The cancer
diagnosis, and the requirements of treatment, led Teagan to be much
more explicit about her relationship than she had in the past. In one
sense, cancer and treatment forced Teagan out of the closet. And while
she's glad she came out, she certainly would have preferred it to have
happened in circumstances "of our own choosing, rather than in
the midst of a full-blown crazy time, with a life- threatening diagnosis."
Cancer and its consequences
sometimes brought to the fore how a woman's family of origin felt about
her lesbian identity and relationships. For Theresa, lesbian identity
and the consequences of cancer became joined together as a series of
painful losses in her mother's mind. Her mother cannot, as Theresa says,
get her head around the fact that her daughter is a lesbian, has lost
her breast, and will not have children. "She can't even really
look at me anymore because she just feels inside so much pain for me.
And I think pain for herself."
Yet for some research
participants, cancer shifted the feelings of families of origins about
lesbian relationships in a positive direction. Jessica, for instance,
spoke about how her mother needed to trust that Jessica was being cared
for, and has come to "appreciate [my partner] differently, seeing
how completely there she is." Other participants described similar
Several of the women we interviewed said that cancer and cancer treatment
had been difficult financially. Women in early stages of treatment worried
about the toll that a period of not working would take and were already
thinking about ways to make up for the financial losses. Women without
benefits spoke about the strain of having to work during treatment,
and the cost of drugs affected women who had no benefits plan. Some
of the women found alternative therapies important to their recovery,
and a few really struggled to pay for them. Single women were finding
things especially difficult. Lou said, "I have nobody else to help
me out financially. Like, even though I have friends ... you know, they
have their own struggles." Laura also made the point that financial
strain sometimes extends well beyond the time of treatment; some women
are unable to return to their previous jobs and must live on considerably
women diagnosed with cancer face similar issues. However, lesbians as
a group may be less able than heterosexual women to rely on their families
of origin for financial support. As well, men as a group have higher
incomes than women, and lesbian couples in general thus have less access
than heterosexual couples to financial resources.
One of the heartening
things about doing this study was hearing most of the women we interviewed
say that they had not encountered homophobia in cancer care:
went with me right
as far as just before the operating room,
as far as she could. And she was there to meet me. So there was no,
no doubt about that
I didn't encounter anything
part of that is because I don't expect to encounter anything. [Paula]
I made no bones
about identifying [my partner] as my partner
never once was
there a single indication that she was not an appropriate person to
have around, for all the consultations. So I didn't encounter anything
that I could point my finger at and say, 'that was homophobic.' And
I was in a sense looking for it, because we were so out. [Pauline]
While the lesbians
we interviewed cannot be said to be representative of all lesbians with
cancer, this study seems to indicate that, at least in certain settings
and for some women, homophobia may be less pronounced than it has been
in the past. This is clearly something to celebrate; Ontario's impressive
history of queer and women's health activism seems to have made a difference
in cancer services.
At the same time,
the comments women made about their positive experiences with cancer
care sometimes tell us as much about the ongoing reality of heterosexism
as they do about lesbian-positive care. Several women spoke about how
they appreciated the ways health care workers and support staff related
to their partners. Paula B, for instance, told us about a surgeon who
could have spoken first with her mother or father about how the surgery
had gone, but who instead spoke first to Paula B's partner.
It made such
a difference to me that she went to [my partner] first. Just that,
in legitimatization of who we are, because she would have for sure
gone to my husband if I were married, right? Um, it just, normalizes
it, and you've got so much to deal with emotionally. [Paula B.]
The physician here
is clearly acting in lesbian-positive ways, and Paula B.'s appreciation
is very real. Yet as Paula B. herself points out, a heterosexual woman
would not even have to think about the possibility that a physician
would not address her spouse first. What's 'normal' for heterosexual
women is something that lesbians remark on. It is clear that a legacy
of heterosexism leaves lesbians in a position of being grateful for
things that heterosexual people take for granted.
If gratitude for
equal treatment is one of the consequences of heterosexism, so too is
an anticipation of problems, and a readiness to fight for care. Rosalie
said she felt her partner was always given respect as her partner; yet
"I think she would've clobbered anyone that didn't [respect her]."
We learn at least
two things from these comments: that we cannot underestimate the value
of lesbians and lesbian relationships receiving respect equal to that
given heterosexuals, and that much needs to change if lesbians still
do not assume or expect to encounter equal treatment in cancer care.
in Cancer Care
While most of the women we interviewed said they had not encountered
homophobia in cancer care, several did describe clear instances in which
they were denied standard care or targeted as lesbians. As well, research
participants described many situations in which lesbian realities were
ignored or dismissed. Several women spoke of being treated differently
- not as well as other patients - by health professionals. Theresa,
for instance, spoke about how the nurses around her in hospital didn't
quite believe she was a lesbian, and showed both their disbelief and
I found a lot
of the nurses just couldn't get their head around it and were saying,
'you're a nice looking girl, you can find someone ...' So, it was
very hard, and they would pull faces, and all different kinds of stuff.
A few women described
blatant examples of heterosexism. In some instances, health professionals'
discomfort with lesbians affected the quality of medical care women
received. Paddy has heart problems, so she could not have a general
anesthetic; her lumpectomy was performed with only a local anesthetic.
She described looking away as the physician started to cut. Yet as he
proceeded, Paddy could feel it. "I told him that he was beneath
the level of the freezing," she recalled, "and he told me
that I was a dyke, therefore I should be able to tolerate pain."
When a physician who had just learned Lillian was a lesbian examined
Lillian's breast, "she stood about as far away as a person could,
you know, like she was moving a computer mouse from across the room."
Kate described her
interaction with the physician with whom she discussed her unusual vaginal
bleeding. The physician pulled herself back in her chair in the middle
of the Pap test and posed her first (and only) question to Kate: when
had she last had a sexual relationship with a man? Kate responded that
it had been about 20 years prior. The physician then told Kate that
she thought there was "something wrong" and that she could
either finish the test or refer Kate to a specialist.
I was pretty clear
at that point that she was making me uncomfortable. And I was making
her uncomfortable. And I don't know which was worse. But at that point
I didn't want her to finish the exam, because I felt like she had disappeared
on me, because of her anxiety about the fact that/ first of all I guess
because it wasn't a normal Pap. And secondly the fact that I was a lesbian
and I don't think she knew how to handle even talking to me about cervical
health, because I'm sure everything she's been taught has been about
heterosexual women, and if somebody had cervical dysplasia you ask them
about their relationships with men. [Kate]
In these stories,
health professionals demonstrate anxiety and lack of competence in relation
to lesbian health. Heterosexism unfolds in these situations in at least
two ways. Firstly, lesbians trying to get care are treated as if they
are somehow contagious or so outside a framework of 'normal' that physicians
are unable to proceed in a professional way. Secondly, the medical knowledge
required to take an adequate history from a lesbian with cervical changes
is unavailable to the physician. In the encounter she describes, Kate
was essentially denied care. The Pap test - which might have offered
Kate more information about what was happening with her body - could
not reasonably proceed; the physician's discomfort and lack of knowledge
were so apparent that continuing would have only made things worse.
Among the many lessons
from these stories is the critical role that lesbian-positive family
physicians play in securing quality care for lesbians. In two of the
situations described here, the women were being seen by someone other
than their regular family physicians. Both felt confident that things
would have happened quite differently if their regular doctors - whom
they had 'screened' and knew to be lesbian positive - had been available.
In recounting her
experiences with the health care system, Sarah described an incident
in which an aspect of her lesbian identity was casually dismissed. As
she says, "I'm a lesbian woman and my breasts are my core sensuality
piece of my body." She had to draw on her courage to raise the
question of breast removal with her surgeon:
And he said,
'oh well, we'll just cut them off, you'll be fine. If you want to
do it, call me in a couple of weeks' and he left. And I just, I just,
I just, I crumbled
and then he came back in and he goes
'if breasts are important to you and your husband we can always do
implants and we can talk about reconstructive surgery after you do
that' and he left. And I remember sitting there thinking, he forgot
who I was and he forgot who I was, you know, and he left and I just
thought, oh my God, I'm never going back to see that guy ever again.
Clearly this physician,
in his failure to recognize Sarah personally and as a lesbian, jeopardized
her cancer care. In the small city where Sarah lives, this physician
is her only option. Yet Sarah cancelled her next scheduled appointment
and seriously considered not going back at all as a result of this interaction.
As she put it, "if I have to battle this one emotionally, I'd rather
The poor care that
lesbians received was sometimes linked to their economic class as well
as their identity as lesbians. Glenda told us about situations in which
she was denied services from cancer and health care agencies. At home
with a drain after her surgery, she needed nursing care, but "Welfare
wouldn't pay for it; welfare said Community Care Access should send
And Community Care Access said welfare should send you somebody, so
nobody got to you?
Glenda: No, no, all they did was argue.
Later in her treatment,
Glenda called to see if she could get a ride to the cancer centre. The
agency told her that welfare should pay for her cab. The welfare worker
told her that the cancer agency provided the service free to other people,
so refused to pay. Glenda ended up walking, every day, for 28 radiation
treatments. At community-based cancer services, Glenda's request for
tokens to cover the cost of transportation was not met.
make it very clear that lesbians' experiences of cancer care are related
not only to their identity as lesbians; other systems of privilege operate
in concert with heterosexism to diminish lesbians and deny them access
outside the cancer care box
As noted above, several of the women interviewed in this research felt
that their partners had been granted a status equal to that of male
partners in consultations with health professionals and in hospital
settings. This was not true, however, for all of the women we interviewed.
Gerrie said that
her physician had asked 'who is this?' when her partner arrived with
her for an appointment (a question unlikely to have been asked if she
had shown up with a man). "At first he didn't look at her
Yet after the second visit the physician was, as Gerrie says, "fine."
Her story reflects the capacity of health professionals to change -
later, this physician began to ask Gerrie about her partner.
Lesbians who spoke
with us also described not having certain 'privileges' that heterosexual
couples and traditional families had, like extended visiting hours.
A series of conflicts that Theresa experienced with health professionals
draws several issues to the surface. Because she was in isolation, health
professionals would only let Theresa's 'family members' come into her
room. "And so [my partner] would stand out in the parking lot and
wave. So she was pretty heartbroken."
to convince the nurse to let her partner in, saying, "this wouldn't
happen if I was a straight person, right?" The nurse refused, making
reference to the hospital regulations.
Here, the heterosexist
definition of family excludes Theresa's partner from the room. Then
the nurse declines any personal responsibility for the decision by referring
to 'rules,' denying her role in reinforcing and supporting heterosexism
in health care. Finally, the hospital ombudsperson, the person designated
to protect patients' human rights in the broader system, failed to return
It is telling that
Theresa speaks about feeling like "they suck away your power -
the little bit that you have!" Certainly the power of heterosexism
- the systemic power, and the ways individuals use their own power to
maintain it - is evident in her story. The effect of this power, in
terms of Theresa's own feelings of being diminished and worn down, was
services: no place for lesbians?
In the face of obvious homophobia and heterosexism in cancer care, 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 our 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.
a situation where a social worker told her about a support group at
the hospital, and asked if she would like to come. The social worker
asked it casually, as if it were an easy decision. But it was not: Jessica
was pretty sure she would be the youngest woman in the group, as well
as the only lesbian; she wasn't at all sure that she wanted to go. (Being
younger than most women with cancer was an experience a few of the other
women we interviewed shared; age very much mattered, along with lesbian
identity, in their experiences of care and support.)
Jessica spoke specifically
about her reluctance to be part of a group where she might encounter
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. [Jessica]
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 care professionals
to recognize what it takes for a lesbian to join a support group or
service. Lesbians, as well as other marginalized women, face particular
risks, and the decision to join may be more complicated than many health
Paddy and Theresa
reported experiences that exactly confirmed Jessica's worries about
coming out and experiencing 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 this research. Anticipating
a similar experience, some of the women we interviewed never even attempted
to access existing services.
In a few instances,
research participants had made deliberate efforts to get their needs
as lesbians met. After a session in which members of the group Theresa
was part of had reacted negatively to her coming out, Theresa asked
the facilitator to talk with the group about different kinds of relationships
and how important partnerships are for coping with cancer.
said], 'well, it's really not my mandate
it's for the group
to talk on its own and for me to give guidance,' right? And I go,
'so, what you're saying is, you're not willing to help me integrate
into the group, right?' [Theresa]
The 'not our mandate'
comment was heard by more than one of the lesbians with cancer we interviewed.
With this comment, efforts to provide care and support that includes
lesbians are made out to be 'above and beyond' what the service does.
Yet unless the service has been created and designed with the intent
of only serving heterosexual women - which none of the services claimed
to be, of course - then obviously the service should work to integrate
and reflect lesbians and lesbian realities.
The 'not our mandate'
line was heard in relation to other dimensions of lesbians' lives and
social realities, as Glenda noted:
professional] said to me, 'I can only work with you and your cancer,
you've got too many things going on.'
So they couldn't help you because you had other things.
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 on their own services, they wind up excluding
lesbians and other marginalized 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-boded 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.
good care, avoiding bad care
Screening is a big part of cancer care. There's lots of talk about mammography
screening for breast cancer, for instance, and Pap smears to detect
cervical cancer. In this study, a whole other kind of screening came
into play - the screening lesbians do to detect heterosexism. Maureen,
for instance, described going for her first appointment with the primary
nurse assigned to her care, and deliberately asking about the nurse's
beliefs and values about lesbians:
I just said
'you know, my partner's a woman, do you have a problem with that?'
And she said, 'absolutely not.' So it was okay. Because if she had
said [she had a problem], then I would say, 'send someone else in'
because I don't have time to have this be an issue at all. [Maureen]
As Maureen and others
pointed out, a screening strategy that involves coming out usually assumes
that lesbians have other options for care. Of course, this was not always
the case for the women we interviewed; for instance, women in rural
areas of Ontario often do not have a choice of care providers.
Mary Lou also described
how her family doctor took a role in ensuring that specialists to whom
she referred Mary Lou were lesbian positive. Mary Lou appreciated her
family physician's efforts. This kind of commitment by health professionals
represents real progress. Yet the fact that health professionals have
to make a deliberate effort to protect their patients from the heterosexism
of some of their colleagues reveals the ongoing nature of oppression
in health care.
Being out, and
not being out
The lesbians who took part in this research help us see how coming out,
and remaining closeted, can both be strategies to affect care in a positive
way. Sarah, for example, came out to a nurse and explained what her
breasts meant to her as a lesbian - and, thus, explained just how difficult
it was for her to think about losing her breasts. She felt it would
not be possible for the nurse to adequately support her without understanding
this. Mary Lou spoke about the commitment she and her partner have to
be out as much as possible in their lives, to allow others, including
health professionals, to learn.
Some research participants'
statements reveal the importance of cancer care professionals recognizing
coming out for what it is - often quite a deliberate effort on the part
of lesbians with cancer to help professionals understand what 'good
care' looks like for them.
On the other hand,
several of the women deliberately remained closeted in an effort to
avoid homophobia in cancer care. Laura, for instance, kept her sexuality
to herself over the course of her treatment for cancer. She is out to
her family physician, but the physician is based in a city. "Had
I come out here in my town, I don't think it would have gone over so
well" she said.
Both Glenda and
Kate make the point that to be safe in the cancer care system, women
may work to conform to norms and expectations not only around sexuality,
but also around class, gender and 'patienthood.' "Of course, I
didn't say I was lesbian," said Glenda. "I was just an aging,
nice lady, not a woman, a lady. I did all I was supposed to do, didn't
raise any questions or whatever." Similarly, Kate spoke about masking
her working class background when she spoke with health professionals,
working to "talk the talk ... act in a certain way to get what
you need, which is stressful, due to the situation."
A few of the women
explained that the cancer care system was one of the very few places
in which they were not out as lesbians. Like Laura and Glenda, they
worried that their care might be compromised. They also reminded us
about just how energy draining it is to deal with heterosexism, to come
out over and over, to anticipate and deal with awkward or homophobic
reactions, to explain what it means to be a lesbian. And because dealing
with cancer is itself incredibly depleting, lesbians with cancer may
not feel able or willing to expend extra energy battling heterosexism.
partners and friends along
Several of the women we interviewed spoke of the benefits of having
partners and friends around when meeting with cancer professionals,
or spending time in hospital. As Lillian put it, "the positive
part about being a lesbian is, I had chosen family. I had a nice gang
of female friends, fearless dyke female friends who would take shit
off no one and who looked after me."
And Kate said that having supporters "countered some of the lesbiphobia
around." Sarah has told her friends that it's their job to "fight
those heterosexual verbal battles" - to respond to health professionals
who want her to pee in a cup to ensure she's not pregnant, for instance
- and to "answer all those stupid questions" about her 'husband.'
this research had different levels of support around them, from those
with virtually none to others with well-organized and well-resourced
networks. Where some women went to all of their health care consultations
alone and struggled to figure out the system, others had health professionals
as part of their family and friendship networks or were health professionals
themselves; the latter seemed able to get what they needed more easily
and quickly. Some women, as well, made a point of assigning their partner
power of attorney for health care, and doing what they could to establish
their relationship as legitimate in the eyes of health professionals.
In a practical way, when a lesbian could not be sure that her partner
would be welcome, lying was not an uncommon strategy: partners became
friends, sisters, roommates - whatever seemed likely to work at the
The efforts lesbians
with cancer made to get good care and avoid bad care were often strategic,
creative and defiant. The fact that lesbians feel the necessity of this
work calls attention once again to the need for change in cancer care.
We look to
leadership from cancer care agencies (starting with Boards of Directors)
to identify access for lesbians as a priority, and engage in the task
of improving accessibility. In a parallel way, we look to the leadership
of agencies in the lesbian community to identify health issues (and
cancer in particular) as a priority, and to develop programs, services,
and advocacy initiatives.
ATTENTION TO CANCER IN LESBIAN COMMUNITIES