Lecture Outline: Health Activism & Patient Rights Movements

Section 1: The Disabled Activist

Introduction: Definitions

1. Historical Context of Patient Rights

2. Issues: Redefining Disability

3. Issues: Disabling Practices

4. Issues: Independent Living

5. Issues: Mainstream Cultural Attitudes

Section 2: The Activist Cancer Patient

Introduction: Culture & cancer

1. Patient Activism & Community

2. Issues: Visibility

3. Issues: Research Agendas

4. Issues: Treatment

5. Issues: Fundraising

Conclusion: Common Threads

Activist patient challenges medical establishment & cultural mainstream:

• how his/her situation is defined

• nature of medical practice & treatment

• how their illness is dealt with in everyday life

• activist patients often labeled ‘bad patients’

For disabled people, activism is For disabled people, activism is focused around redefining disability, focused around redefining disability, not in biomedical terms as sickness, not in biomedical terms as sickness, but as people who have to live in a but as people who have to live in a society that disables them.society that disables them.

Cancer activists are critical of Cancer activists are critical of biomedical interpretations of their biomedical interpretations of their disease, critical of treatment & disease, critical of treatment & research, critical of the closeted research, critical of the closeted ‘hidden’ nature of disease, and critical ‘hidden’ nature of disease, and critical of fund-raising tactics.of fund-raising tactics.

Historical Context of Patient Rights

• disability groups from 1890s in Britain & USA

• 1970s inspiration from Civil Rights Movement, polio & Thalidomide survivors

• 1981 United Nations International Year for Disabled People

Issues: Redefining Disability

• discarding medical model

• impairment as universal

• Redefining disability

Issues: Disabling Practices

• social marginalization

• disabled people bring private ‘imperfect’ body into the public world

An An impairmentimpairment is the loss of some is the loss of some

physiological or anatomical function, physiological or anatomical function,

impairment is relatively verifiable in impairment is relatively verifiable in

‘objective’ terms. - But a ‘objective’ terms. - But a disabilitydisability is is

the the consequenceconsequence of such an of such an

impairment, i.e. the inability to climb impairment, i.e. the inability to climb

up stairs independently, for example.up stairs independently, for example.

““Independent Living is about the whole of Independent Living is about the whole of life and it encompasses everything. We life and it encompasses everything. We want equal opportunities. We want want equal opportunities. We want citizenship. It is philosophical, it is citizenship. It is philosophical, it is political, it is about integration and political, it is about integration and disabled people becoming part of this disabled people becoming part of this world and not separate, segregated and world and not separate, segregated and second class.”second class.”

John Evans, 1993John Evans, 1993

Issues: Independent Living

• 1973 Centre for Independent Living, University of Berkeley

• 1979 English Grove Road Scheme

• Camphill Communities

Camphill Communities Ontario will create social environments Camphill Communities Ontario will create social environments that enhance spiritual expression and quality of life with that enhance spiritual expression and quality of life with individuals of diverse abilities. individuals of diverse abilities.

Camphill Communities Ontario contributes to society by Camphill Communities Ontario contributes to society by creating opportunities for people of all abilities to fulfill their creating opportunities for people of all abilities to fulfill their potential through living, learning, and working in community.potential through living, learning, and working in community.

Issues: Mainstream Cultural Attitudes

• disabled people - healthy or sick or something else?

• shifting line between ‘normal’ & ‘disabled’

• Halpern - sympathy vs empathy & the failure of imagination

Illness as MetaphorIllness as Metaphor byby Susan Susan SontagSontag

• cancer - symbol of deathcancer - symbol of death

• cancer - the invading aliencancer - the invading alien

• cancer - a secret stigmacancer - a secret stigma

Breast Cancer• global rates of

breast cancer doubled 1980-2000

• highest rates: USA, Canada, Britain & Europe - Chinese women lowest rates

• breast cancer most ‘hidden’ cancer

Breast Cancer Activism & CommunityBreast Cancer Activism & Community

• Breast cancer organizations early 1990s – links to Breast cancer organizations early 1990s – links to women’s movement and AIDS activismwomen’s movement and AIDS activism

• 1993 Canadian National Forum on Breast Cancer, 1993 Canadian National Forum on Breast Cancer, MontrealMontreal

• Grassroots Activism, i.e. Toronto’s Willow Breast Grassroots Activism, i.e. Toronto’s Willow Breast Cancer Support & Resource ServicesCancer Support & Resource Services

Breast Cancer Activism & Community

VisibilityVisibility

"We continue to feel that others are "We continue to feel that others are doing things to us rather than for us. doing things to us rather than for us. When I decided to speak out When I decided to speak out publicly, I felt exhilarated…engaged publicly, I felt exhilarated…engaged in a personal, meaningful struggle.“in a personal, meaningful struggle.“

Sharon Batt, Cancer ActivistSharon Batt, Cancer Activist

Issues: Visibility

• Femininity & the cancer patient

• looking ‘normal’ & the ‘good’ patient

Issues: Research AgendasIssues: Research Agendas

• research agendasresearch agendas

• funding prevention research funding prevention research

• environmental factorsenvironmental factors

• the economies of treatment vs preventionthe economies of treatment vs prevention

Issues: Treatment

• Dr Susan Love – critical of chemotherapy

• CAM therapies

• % of alternative therapy cancer patients small but growing - younger, higher socio-economic groups

GREENS: Dark leafy greens like GREENS: Dark leafy greens like collards & kale are rich in cancer-collards & kale are rich in cancer-preventing carotenes, preventing carotenes, chlorophyll, anti-toxiodants, folic chlorophyll, anti-toxiodants, folic acid & flavonoids. Greens are acid & flavonoids. Greens are excellent complementary excellent complementary medicine for those choosing medicine for those choosing radiation therapy.radiation therapy.

Issues: Fundraising

C.I.B.C. Run for the CureC.I.B.C. Run for the Cure Toronto, 2004Toronto, 2004

• Marketing the fight against breast Marketing the fight against breast cancer?cancer?

• Informal alliance of cancer Informal alliance of cancer charities, large corporations, the charities, large corporations, the state & mediastate & media