INTE 398 Lecture Notes - Lecture 5: Our Bodies, Ourselves, James Gillett, Visual Impairment
5 May 2018
School
Department
Course
Professor
Ffar 291/Inte398 – Intro HIV Class
Lesson 5
5.1 Intro Video
-explore the dev of an identity for ppl living w HIV and AIDS
-what it's like to live with HIV/AIDS
-are HIV+ ppl members of a community?
-community - think of where born or share culture commonality (religion, speaking similar
lang, similar set of values and experiences)
*if threat to mainstream society, try to talk about it to similar ppl instead of isolating
themselves
-how do you create a posi identity when you are HIV+?
5.2 Meet Yves Video
-man living with HIV - part of COCQ-SIDA (Qc/HIV stigma campaign)
-he's 53, contracted HIV at 25
-brought many complications: became legally blind (still travels, listens to 2 books per week)
-does prevention week, gives testimonials to students at college/uni students
-need to talk about HIV whether it's for prevention or perception
-his husband is HIV- = shows that w basic precautions, can prevent HIV transmission
-he encourages ppl to be open and tolerant
*AIDS is the prob, not the ppl living w it
5.3 Activism Lecture
Health from Below
-Those most affected by health probs and social issues are encouraged to org in order to
question and challenge the expertise exercised by health professionals and state officials
-in doing so, they have demanded that health be treated not exclusively as a physiological
cond, but as a social and pol issue that MUST be addressed
-James Gillett - did lots of research
-notion that health care should NOT be delivered top down by health officials
-ppl that experiencing HIV should not only be relied on to articulate those experiences to help
shape responses to those experiences
-should participate to dev treatment and responses
-how this health prob functions in terms of what ppl need in their lives to address it better
Our Bodies, Ourselves
-i s, olletie of oe i Bosto = frustrated i as dos did’t take ed issues of
women seriously
-either dismissed concerns they had, said that they were making them up and not
listening to them articulate their experiences
-whether or not should be on birth control, whether or not being allowed to terminate a
pregnancy
find more resources at oneclass.com
find more resources at oneclass.com
*FRUSTRATION of not having a role in determining health decisions and priorities
-what made more sense for them in terms of their options
-started to share stories for each other, first informally and then more formally
-published a book
-this is the info we need to make the best health care decisions for ourselves
-in this spirit - ppl living w HIV initially began to address their own health needs,
understanding that they had to ACTIVELY exist as ppl living w AIDS
The Denver Principle
-expressed a fundamental truth: to be successful, the fight vs the epidemic MUST include the
ppl who have the disease as equal partners in the battle
*that model empowered our community to create a massive AIDS service delivery system,
from scratch, in a remarkably short period of time under difficult circumstances
Milestones - Mobilization
-1982: San Francisco AIDS Foundation
Gay Men's Health Crisis
-1983: Denver Principles
-about what they wanted to be recognized, treated and participated (ppl living w HIV)
-1988: AIDS ACTION NOW! Is founded in Toronto, published Treatment Info Sheet
-happened a bit later in Canada, took a bit longer for same urgency to hit in Canada, for
same number of ppl infected and affected
-this sheet we saw in lesson 2
*1981 when found first cases in NY Times (saw this in lesson4)
-1 yr later so in 1982, gay men and San Francisco went a step further and recruited docs and
health care providers to help provide services to and within the community instead of having to
work w potential resistance, judgment or bias on part of mainstream service providers
5.4 How the Denver Principles Changed AIDS (and Health Care) Forever Reading
-grp of activists met in Denver as part of a gay and lesbian health conference
-among them, a dozen men w AIDS
-they wanted to speak for themselves towards end of the conference
-identifying themselves as such was startling at the time
-they outlined 17 principles that covered everything from health care decisions to civil rights to
sexual conduct
-their impact on all of us is so obvious today that it can easily be taken for granted
-they demanded that physicians see their patients as "whole ppl" and provide "accurate info"
-they believed their opinion on their care should be awarded equal weight
*this was revolutionary
-they asked "all ppl" to fight vs AIDS discrimination in the workplace and in housing
*provocative concept in 1983
-even advocated for "as full and satisfying sexual and emotional lives as anyone else" for ppl w
AIDS
*at the time, grp of ppl suffering from it wanted sexual rights
-lesbians and gay men worked together really effectively
find more resources at oneclass.com
find more resources at oneclass.com
-these principles influenced the doc/patient relationship in every disease category, benefiting
millions of patients
-Sean Strub - created Denver Principles Empowerment Index
-holds AIDS grps accountable to the ppl they serve
-would chart similar criteria for AIDS orgs and other health care providers
-by measuring the degree to which their clients feel empowered and involved in
their own decisions
-rate things like fundraising, transparency, HIV+ rep and the delivery of
services
5.5 Power to the People and Grassroots Activism Reading
Early to Mid-80s: Igniting Hope
-young, healthy men suddenly dying across the country (inexplicably)
-no one knew the cause even after identification in 1984
-ongoing controversy over the role of the virus in the syndrome
-treatment for opportunistic infections = largely INEFFECTIVE plus no cure
-gay communities established orgs offering support and counselling
-"only" w marginalized grps
-tended to be restricted to preventing the virus from spreading to the "general pop"
-Brown - worked for speedy access to AZT (1987)
Info and Access
-treatment info = the foundational element of treatment activism
-fact that treatment may be within reach helped combat resignation and despair that they faced
an imminent death sentence
-ppl were not so much dying of virus as they were dying of neglect and indifference
-activists wanted docs to recognize that patients often knew as much as they did about
the disease
-so more COLLABORATIVE approach was needed
Foundations of an Infrastructure
-activists recognized the limitations of grassroots, local efforts in spreading the word
-a year later, still no national treatment registry
-so activists did it themselves instead of waiting on the gvt (CATIE)
New Access Issues
-by 1992, strategies employed by treatment activists were changing and so was the face of AIDS
-epidemic no longer confined to the gay community
-more women were now infected
-scientific understanding of AIDS deepening, more drugs tested
-get them to participate in trials knowing that they were receiving the drug and not the
placebo
-cost becoming a factor
Mid 90s to 2005 - Managing Service
-AIDS becoming a "chronic manageable infection" was a real possibility w treatment now
find more resources at oneclass.com
find more resources at oneclass.com
Document Summary
Explore the dev of an identity for ppl living w hiv and aids. Community - think of where born or share culture commonality (religion, speaking similar lang, similar set of values and experiences) *if threat to mainstream society, try to talk about it to similar ppl instead of isolating themselves. Man living with hiv - part of cocq-sida (qc/hiv stigma campaign) Brought many complications: became legally blind (still travels, listens to 2 books per week) Does prevention week, gives testimonials to students at college/uni students. Need to talk about hiv whether it"s for prevention or perception. His husband is hiv- = shows that w basic precautions, can prevent hiv transmission. He encourages ppl to be open and tolerant. *aids is the prob, not the ppl living w it. Those most affected by health probs and social issues are encouraged to org in order to question and challenge the expertise exercised by health professionals and state officials.
