Dr' Shani Orgad

1
The pink side and the darker side of women and
the InternetThe case of breast cancer
patients online communication
A lecture in the CRI Scholar Program Series
Gender and Technology

• Dr. Shani Orgad
• London School of Economics and Political
  Sciences.s.orgad_at_lse.ac.uk

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The relationship between gender and technology
Troubled and problematic
Empowering and liberating

• Technology as reproducing traditional gender
  power relations exclusion of women
• Masculine cultural dominance of technology
• Women as incapable of using technology
• Women as passive users of technology
• Technology as constructed around mens
  interests

• Technology as liberating women from their
  constraints, endowing them with powers they did
  not have before
• Subverting the intended purposes of technology
• The potential of technology to challenge gender
  power relations
• Reconstructing technology around womens
  interests
• Women and interpersonal communication technologies

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1924
Sourcehttp//scriptorium.lib.duke.edu/adaccess/
4
Sourcehttp//scriptorium.lib.duke.edu/adaccess/
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Commodore 1981
VisiSchedule 1982
Source http//www.aci.com.pl/mwichary/computerhis
tory/ads
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IBM 1981-2
Source http//www.aci.com.pl/mwichary/computerhis
tory/ads
7
Verbatim 1982
Source http//www.aci.com.pl/mwichary/computerhis
tory/ads
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France, 2001
Source http//www.gracenet.net/events_disgrace.ht
m
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Women and the Internet
Reproduction of masculine dominance
Empowerment and liberation

• Political economy the embeddedness of the
  Internet and CMC within wider public discourses,
  societal and economic power relations
• Flaming, trolling and online practices of sexual
  harassment the persistence of traditional
  gender power relations and domination in CMC
• Women in developmental contexts what are the
  consequences of their online activity for the
  material conditions of their lives? Have
  these conditions changed or m remained
  disregarded?

• Cyberfeminism, women weaving the web the
  capacity of the networked organisation of the
  World Wide Web to erode or subvert the culture of
  masculine dominance.
• Online spaces as safe spaces, enabling women to
  evade unpleasant practices
• Post-modern approaches CMC as enabling the
  experimenting with a new sense of self,
  gender-free and fluid reconfiguration of gender
  categories.

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The online communication of women who suffer
from breast cancer
Centrality of the disease in public discourse and
communication
High prevalence of the disease
Proliferation of online resources, particularly
patients forums
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www.breastcancer.org
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www.youngsurvival.org
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www.bcexperience.org
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(No Transcript)
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The pink side and the darker side of the online
ribbon
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The pink side of the online ribbon
The ways in which breast cancer patients online
communication shapes and challenges gender power
relations
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Translating silence into visibility

• Women should translate the silence surrounding
  breast cancer into language and action against
  this scourge (Audre Lorde, The Cancer Journals,
  1980).

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Critical debate by lay-expert women

• The possibility of the marginal (women
  patients) to enter into a dialogue with the
  dominant (medical authority, predominantly male).

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Control of representation

• Control over time and space (when their story
  will be published and where)
• Control over the content of the representation of
  their experience After absorbing all the
  information garnered from the net and from
  anecdotal information provided by the people
  genre Ive arrived at several personal
  conclusionsThe most important conclusion for me
  is that each persons breast cancer is uniquely
  their own. No two people reach the same medical
  treatment, nor do any two people with the same
  diagnosis and survival stats have identical
  chances of survival (online interview 24).
  

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Personalisation and specificity

• The availability of hundreds of patients
  disclosures on numerous forums reflects the
  variable and unpredictable nature of the illness
• The recognition that there is no
  one-size-fits-all treatment
• The capacity to perform highly specific searches.
  
• Example http//www.sharedexperience.org/experienc
  esearch.lasso

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Bonding and sisterhood

• Camaraderie, collaboration and support
• Realisation that one is not aloneI found the
  web sites for cancer, because I was searching to
  see if I was the only one who experienced this
  type of tumor. Your sometimes feel all alone when
  its happening to you and I was greatly impressed
  at the wealth of information out there. And the
  letters I have received because of it. I'm
  hoping that by sharing this with people, maybe I
  won't feel so alone and perhaps we can get either
  a glimmer of hope, some insight, or, if this
  the beginning of the end, some courage.
• (posted on Shared Experience message board).
  

A womens thing?
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Anonymity and disembodiment

• The capacity to remain anonymous and disembodied
  while communicating the most private, intimate,
  and highly embodied experiences publicly
• lurking as a central communicative practice
  controlling the degree of ones visibility
• A very different kind of transformation from that
  described by post-modern views.

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Publicity, privacy and safety
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The darker side of the online ribbon
Do patients proliferating online voices
necessarily exist outside gender power relations?
To what extent is this CMC context indeed
transformative and empowering for women?
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Anonymity and invisibility

• Anonymity as a double-edged sword
• Im very loud within the online breast cancer
  community, but not in the general public
  (Barbara, interview 2).

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Can women patients online anonymous and
private experiences translate into meaningfully
visible, and thus publicly recognised terms?
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Privatisation of experience

• Patients discussions focus predominantly on the
  individual and the personal There is awful
  sentimentality about it. I just felt I couldnt
  relate to it... I didnt ever post ever any
  messagesit just seemed like these women
  weresilence involved in a form that was about
  mutual support, it wasnt about having arguments
  (Kate, interview 11).
• The connections and relationships that emerge
  between women online remain private affairs
  rather than translating into some kind of a
  collective form of political action

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The bias of self-responsibility

• RE STILL TRYING TO DECIDE (Tamoxifen)
• I guess I would look at it this way. Ask
  yourself why you took Tamoxifen in the first
  place (Im sure the percentages were about the
  same back then). Then ask yourself about the side
  effects and your tolerance to them. (Source
  Breast Cancer Online In Our Own Words).
• The ones who stick around are the
  fightersthose that come on and are passive and
  feel its just too hard to fight it, give up and
  give in to their disease and dont stick around
  (Online interview 15).

See also http//www.onein9.org.il/health-movie.ht
m
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Information is power
Educate yourself
Empower yourself
Inform yourself
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Limited reach

Online resources and patients disclosures are
proliferating, but can CMC create the awareness
and political action facilitated by mass media?

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Self-sufficient closed spaces
http//bcans.ca/forum/help.htm
ALL WALKS OF LIFE? Participants in breast cancer
online forums are mainly educated,
English-speaking women patients.
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Conclusions

• While CMC contributes to the widening of the
  communicative infrastructure of the illness, and
  to its coming out into the public arena, at the
  same time it seems to reinforce the opposite.
• The combination of a disembodied, anonymous,
  patients-only and highly personalised space and
  discourse on breast cancer sites seems to
  separate, rather than integrate the illness
  experiences and the public political realm.

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Questions

• How can online spaces such as breast cancer
  patients forums transcend their invisible
  private boundaries?
• Can they constitute more than anonymous
  confessional spaces, providing resources for
  therapy, interiority and self-elaboration?
• Can CMC truly help women recognise themselves as
  publics?
• So long as the material reality of breast
  cancer does not change, and its dominant
  representation remain unchanged, the so-called
  empowerment of patients by CMC remains highly
  limited.

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Implications for website design Transforming
private exclusive issues into an inclusive
political agenda

• Creating more inclusive forums - Stop treating
  issues such as breast cancer as exclusively
  womens personal issues
• - Open forums for non-patients, men, from
  varied educational and multi-lingual backgrounds
  (at the same time maintain safety).
• Providing patients with communicative spaces and
  tools to talk outside their private realm,
  creating a dialogue with others.

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Contribution of this kind of study for a critical
understanding of gender and technology

• Exploring whats behind the screen
• Attending to users voices and experiences
• At the same time, taking a a critical distance
• Thinking about gender as a source of technology,
  and at the same time a consequence of technology
  (Wajcman, Technofeminism,2004).
• Examining the relationship between technology and
  gender in its complexity, rather than in utopian
  or dystopian terms