Immediately upon accessing their website, having read “Welcome to cancerland”, I saw the links for “shopkomen.com” and “find an event”, I also noticed the abundance of what Barbara Ehrenreich calls “pink kitsch”.  One important thing to note is that men diagnosed with breast cancer may feel alienated by the focus on women and femininity.  Unlike the Komen website, BCAction does not have any pink at all, doesn’t have testimonials or catchy phrases like “breast cancer touches us all. It’s a journey we take together,” or pictures of “survivors”.  It’s important to note that as a (third-wave) feminist organization, BC Action rejects the phrase “survivor”, echoing Barbara Ehrenreich.

BCAction focuses on systemic interventions to reduce the number of women who develop breast cancer, die from breast cancer, and to eliminate communities bearing disproportionate burdens from breast cancer.  The Komen foundation works to “save likes and end breast cancer forever by empowering others, ensuring quality care for all and investing in science to find the cures.”  Their approach to their mission is raising awareness, fundraising, and addressing breast cancer through research, community health care, global outreach and public initiatives. This reflects their alignment with biomedical and scientific institutions.

BC Action tries to be inclusive to heteronormative as well as non-heteronormative femininities.  Those who identify with this culture want to address the “effects of inequalities, mobilize anger against the institutions of biomedicine, services and treatment activism.” This feminist culture of action also questions the use of the term “survivor”, addresses gender disparity within institutions, challenges medical and scientific authority, and critiques systemic forms of sexism and classism.  This organization fits in the Klawiter’s “culture of action” that focuses on the environment. They look for ties between the environment and cancer rates and holds corporations accountable for actions which may cause cancer – and they make this information available to the public – such that they can make their own decisions.

Komen celebrates normative femininity and is Klawitzer’s “remaining” culture of action. The Komen foundation represents the mainstream breast cancer culture, one which has faith in science and medicine and is aligned with these institutions. They promote biomedical research and early detection and emphasize this over finding the environmental factors that may be causing cancer, which is BC Action’s primary approach.  Within this culture of action, are events like Race for the Cure which is a celebration of normative femininity and in this realm “shopping is activism.”

One of the striking differences between the two websites is that on the Komen website, the ways to get involved are to donate, participate, be involved in corporate partnership, or “shop Komen,” reflecting more of an emphasis on fundraising. This is quite different from the ways that BC Action suggests that individuals become involved, which includes making educated choices and becoming empowered by learning more, petitioning and activism, becoming involved as a volunteer, and fundraising.

Despite the many criticisms that can be made of the Komen Foundation and the mainstream breast cancer movement, I do think that it’s really important to acknowledge that this is an organization that is accessible to many mainstream women and much of this appeal has to be with having a sense of community and solidarity for those who do not identify with feminism, and for this reason cannot simply be discounted.  Breast Cancer Action offers an important resource to those who do and do not identify with normative femininity and may feel alienated by mainstream organizations like Komen. Although their stances differ substantially, “social justice for all” is necessary, but finding a cure (however far out that may seem) is also so important in reaching BC Action’s goals to reduce the number of women who develop breast cancer, die from breast cancer, and eliminate communities bearing disproportionate burdens from breast cancer. I would argue that although the ideologies of these organizations are very different, their goals do not have to be seen as mutually exclusive.

Aimee Mullins, using the story of her friend telling her in all seriousness that it wasn’t fair for her to be able to change her height, beautifully explains how there has been a shift in the conversation about amputees from one of disability, to power, esthetics, and allowing her and other individuals to be the architects of their own identities by designing their bodies from a place of empowerment. According to Arthur Frank’s paradigm, Aimee Mullin’s talk does not really follow the typical structure of life narratives discussed in the lecture material, she focuses less on her own experience (without mentioning any struggles she has faced) and uses it as evidence of changes in society, which is the focus of her talk. However, I would argue that there is an element of the “quest” in that she is a hero to many and focuses on the positive experiences she has had as an amputee (and not as a disabled person) and how she is working towards social change regarding perceptions of disability and amputation, opening up conversations, and improving the quality and esthetics of prosthetics.

As Courser discusses in relation to many illness narratives, Aimee’s narrative is political in the sense that she questions the social constructions of terms such as “healthy”, “beautiful”, and “disabled”. She says in her talk that people often tell her that she doesn’t look disabled and she says laughing that she doesn’t feel disabled. It’s important to note that as discussed in the lecture notes, “disability” refers to a socially imposed category of existence rather than someone who is “ill”.

Her talk highlights that many of the issues surrounding life narratives are interdisciplinary. She discusses specifically how poetry and science can combine to create incredible prosthetics that are also pieces of art, as well as the social constructions embedded in our understandings of disability.

Courser asks what social factors cause certain illness narratives to materialize in particular ways, Aimee Mullin’s addresses this question in her story about using children’s curiosity about the world around them as empowerment and allowing them to make their own ideas about what it means to have a prosthetic leg. She says that children’s fears come from adult’s discretion, there is something so honest about this statement that children are curious and its not knowing, rather than knowing things that could be scary that is frightening.

Having seen my uncle struggle with adapting to life as an amputee, I have a huge appreciation for what Aimee Mullins is working towards. Having said that, I also think that it’s incredibly important to take into account the huge costs associated with being an amputee and needing prosthetics, the battles that some go through to have insurance coverage, the struggles of getting used to “new legs” and all of the malfunctions that go along with them. Nonetheless it’s really incredible to see how far prosthetics and we as a society have come and the huge changes that this translates to in the quality of life of these individuals.

Foucault defines culture as “a hierarchical organization of values, accessible to everybody, but at the same time the occasion of a mechanism of selection and exclusion.” What we perceive as culture, is a manifestation of the deeper meaning of culture – what we do, what we think, and how we feel.  Culture is symbolic in that it allows us to attribute meaning to behavior, words, and objects.  Culture is also embedded in how we understand health and illness, what we attribute to these “states”, and how we approach changing them.  This is pertinent in “The Spirit Catches you and You Fall Down” in that although Lia’s family has a strong connection to Hmong culture, they are somewhat estranged and at odds with American culture. This is evidenced in small details like the fact that Hmong families arriving in America were forced to make up birthrates in order to fill out various forms as well as in the different cultural understandings of illness and its treatment.

As illustrated in “The Spirit Catches You and You Fall Down”, the Hmong culture attributes illness and healing to spiritual matters that relate to all parts of the universe. This striking contrast to the medical community in North America that sees illness as having a biological cause to be treated with medicine, surgery, or another procedure to repair this biological error is a main focus throughout the book.  The Hmong understanding that Lia’s condition was caused by her soul fleeing her body as a result of being so frightened by the sound of a door slamming is very different from a Western medical perspective of the origins of epilepsy.  These differences in cultural understandings of medicine illustrate the dire importance for cultural competence in the health care system. This involves medical professionals recognizing their own cultural influences, developing knowledge about the cultural backgrounds of their clients, and developing appropriate skills to be able to intervene in ways that are culturally sensitive and relevant.

The fact that Lia’s parents did not agree with or carefully follow the treatment prescribed by the doctors emphasizes the difference in the cultural understandings of illness between Hmong and American medicine. This also brings up the important notion of health literacy, the degree to which one has the capacity to obtain, process and understand basic health information and services necessary to make appropriate health decisions. Although Lia’s parents seem to have a very good understanding of Hmong health and medicine, through the ways in which the author describes Foua’s previous labors and the spiritual rituals the family and shamans perform to “cure” Lia, they have very little understanding of the American medical system and understandably, because of this do not follow medical instructions very well early on in the book. This is compounded by the language barrier between Lia’s family and the American healthcare system.

When I am ill, my experience of reality changes. My subjective experience of illness rather than disease alters the way that I approach things.  As a consumer of health care and as someone who hopes to go into the health care profession, I found the article “The Social Construction of Diagnosis and Illness” very impactful.  At times in psychology courses, I have found that the focus is on treating the pathology or disease, rather than the illness that the patient experiences.  The theoretical shift to a focus and legitimation of the patient’s experience is an important one in many ways, especially when we look into aspects of treatment such as adherence.  The article highlights that some illness are stigmatized, some are contested, some considered disabilities and others not, illustrating some of the struggles that individuals can face in seeking treatment for their ailments.  When I am ill I know my experience of illness, but conveying that can be a challenge. This challenge is especially relevant to those suffering from diseases that cannot always be seen or that are not understood.  It is interesting to note that at times as patients we face both the challenges of having to battle to have a set of symptoms legitimized with a diagnosis of a contested illness and on the other hand having to be wary of doctors over-prescribing (sometimes) unnecessary drugs. When I am ill, I must now choose where to seek symptom relief, and there are some things that a call to my mom or cup of tea cannot fix.  Ben Goldacre reminds us of the importance of examining the research and taking the evidence into our own hands, to see for ourselves what the data say. We must choose between medicine, supplements, lifestyle changes, dietary changes, homeopathic treatments, and other alternative forms of medicines.  As a patient, I have chosen a combination of these approaches – I believe in medicine, I believe in the biological basis of disease, but I also understand that not everything needs to be treated by medication and that we do not always have a perfect treatment that comes without important side effects.  I am also wary that my doctors may be prescribing drugs because of the monetary benefit that that may provide rather than because I need them.

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