Illness and Internet empowerment: writing and reading breast cancer in cyberspace
Victoria Pitt’s article explores the Internet as a medium for women with breast cancer to educate themselves and others about their illness. The Internet also acts as a freeing realm where these women can go against traditional roles and figure out their identity for themselves. Pitt’s study explores “cyber-agency” a term she uses, to explain the Internet as a potential tool for empowerment.
As we explored in class discussions, the beginning of cyberspace was one-sided. Recently the potential for a two-way dialogue has emerged. In the case with women with breast cancer, the Internet is a site where women not only read information but also write about their own experiences. This study looks at personal web pages of women with breast cancer.
Her question: Is the Internet really a space for women’s empowerment?
Cyberagency: Virtual space and the interactive body/self
This section poses a really interesting perspective about identities on the Internet, in a way I have never thought of before. There is a notion of disembodiedness of interaction on the web because your body isn’t actually present; “Corporeal bodies are absent in cyberspace, and thus individuals are left to represent the body through words, images, codes, and symbols” (nicely put!) Therefore, we are able to more freely shape our identities on the web; “Thus, choice in what our identity is and how others will identify us is part of the promise of the on-line world.” (This is also a theme we have talked about in class—authentic personalities)
Some theorists believe that because of the ability to construct our identity online, (“fluid notions of self and body”) the web becomes a space where “gender does not matter.” Is a neutral space created then? This then allows women to deconstruct traditional gender roles and definitions of self. So does this make the Internet a liberating (“cyberliberation”) space for women? Not, exactly. There are problems with this:
- Homophobia has not disappeared as well as extreme conformity in these online communities.
- Although the Internet has potential to be an open, diverse forum, it is highly consumerized, homogenized, a “monoculture” (corporate and media power)
- The idea of flexible identity, is not as radical as believed by theorists, it benefits a postmodern consumer culture
Illness, breast cancer and agency
Women with breast cancer face challenges to control their own self-definitions and experiences. Their bodies are often referred to in masculine and high-tech terms. Women’s experiences are also shaped by consumerism in particular, beauty brands. These companies pressure women to look beautiful again, and erase the signs of illness. These pressures shape the way women present their story and experiences. A good way for women to present their story through their words is by writing a memoir (healing experience for writer/reader as well as create solidarity). However, feminist scholars argue that these autobiographies “have reproduced heteronormative, consumerist and gendered ideologies regarding women’s bodies.” Such as women feel pressure to “put on a brave face” and hide the true nature of their experiences. These blogs often “circulate conventional messages of individualism, personal responsibility, and femininity.”
Researching breast cancer web pages
The Internet has allowed more women to write about their experiences with breast cancer. Their personal web pages (there are thousands) are not tied to institutions or organizations. They function as diaries and can include photos, cancer timelines, etc.
For her research, Pitts looked at 50 (which she chose at random) of these personal web pages. She notes that she does not know the off-line identities of these authors and operated her study under the belief that the author’s are being “truthful” on their blogs (however she acknowledges that this is a limitation of her research).
Her research methods include: content analysis (to explore themes)
She considers three questions in regards to the issues of agency and empowerment:
1. “How web pages describe the use of the Internet to negotiate medical relationships
2. How the pages contribute to the development of an on-line breast cancer culture
3. The ways in which the ill, female body and identity enter these sites through their textual composition, including through narrations of the body’s appearance, gender and phenomenological experiences of illness.”
Medicine, information technology and empowerment
The Internet has become a virtual library, where one can easily access information about cancer research/information. In Pitts, research she finds that the women’s web pages she studied felt that finding info about treatment online helped them manage their illness.
Available research/info online also levels the hierarchal relationships that exist between doctor/patient/medical industries (we talked about this idea last week with patientslikeme.com). This access demystifies the elitist medical world.
Reading and surfing the net is a crucial part of breast cancer virtual tech. but also writing is equally important. Women create and share their narratives that otherwise might have been a “secret.” Women incorporate medical jargon into their writings, but also break it down for their readers.
Quote I like:
“Cyberspace presents individuals with opportunities to self- describe, inscribe and ‘rewrite’ their bodies because they are faced with tasks of identifying themselves”
Creating support networks and giving advice
Despite medical knowledge circulating on the web, another important knowledge for women with breast cancer is reading about others experiences. The web offers possibilities for women to connect with each other through email, chat room, web pages, etc.
Constructing the body and the self in virtual space
Cyber culture is also an important way for women to air their “embodied experiences of sickness, healing, recovery, mourning and survival.” Web pages can become quite personal with photos, poems, and other personal things. Most web pages have a form of “statement of purpose.” These pages become a form of “home.” These pages complicate, “ordinary divisions between public and private (and also self and other, mind and body) is demonstrated in these narratives.”
Humor (“cancer-specific culture of humor”) is a powerful resource for women in their narratives, concerning breasts and hair loss. Using humor, “suggest both that women are acknowledging the powerful norms of femininity and beauty that surround them and actively negotiating the social meanings of the body’s changed appearance.” Humor is a way for women to take control of their bodies and reject traditional beauty/consumer standards.
Politics and problems of writing the body-self in cyberspace
These web pages allow women to feel in control. Pitt concludes that the Internet is not completely a place of liberation for women. She argues, “It is important to remember that women’s narratives are not immune to powerful systems of representation, including medicine and consumerist popular media, and that cyberspace is not a neutral territory in which to construct these narratives.”
The Internet allows women “cyberagency” to an extent. They are able to read/write and have free speech. However these women are still faced with institutional pressures.
The following articles are in response to Breast Cancer Blogger Lisa Bonchek Adams
Forget funeral selfies. What are the ethics of tweeting a terminal illness?
By Emma G. Keller
- Keller’s article is extremely insensitive with inaccurate facts; her first line is “Lisa Bonchek Adams is dying.”
- Another insensitive comment: “Adams is dying out loud. On her blog and, especially, on Twitter.”
- Keller, is obviously against Adams’ public presentation of her cancer, however she mentions that she is obsessed with keeping up with Adam’s journey (it is as if she views Adam’s as an attraction—like reality T.V)
Heroic Measures
By Bill Keller
- Keller writes this article a few days after his wives’ article gets intensely scrutinized.
- This article feels as if he wrote it to defend his wife.
- I think Keller has a bias (in addition to defending his wife) he talks about how his father-in-law died of cancer. He died in Keller’s view in a “humane and honorable” way instead of Adams’ “frantic medical trench warfare” or “war of attrition.”
- He consistently connotes Adams’ battle with cancer with war metaphors (which she doesn’t do)
- He thinks she is trying to be a hero with “heroic measures”
- He says, “Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures. I think this clearly shows a bias. He seems to judge Adams for fighting for her life, which angers me. If I was in her place, I would fight for my life as well.
Social Media is a Conversation, Not a Press Release
By Zeynep Tufecki
I pretty much agreed with all of the points that Tufecki wrote about. She points out the hypocrisy of the Kellers’ articles, especially clarifying inaccuracies. She is a supporter of Adams’ cyber journey.