Why women with HIV are persistently invisible – and how we can challenge it
Theo Gordon, The Conversation, March 15, 2018
The night
before International Women’s Day, I volunteered behind the bar at “A Catwalk for
Power, Resistance and Hope”, a fabulous fashion show for women with
HIV organised by ACT UP London Women (AIDS Coalition to Unleash Power), and Positively UK, an organisation that runs
peer-led support groups for people with HIV.
before International Women’s Day, I volunteered behind the bar at “A Catwalk for
Power, Resistance and Hope”, a fabulous fashion show for women with
HIV organised by ACT UP London Women (AIDS Coalition to Unleash Power), and Positively UK, an organisation that runs
peer-led support groups for people with HIV.
After a
poetry reading by the incredibly talented writer and motivational speaker Bakita, these women led the call and
response chants, derived from the anti-apartheid movement, of “THE POWER! – IS
OURS!” and “AMANDLA! – NGAWETHU!” in front of a packed-out house at London’s
Brixton East. Then the main show began: 25 women with HIV strutted their stuff
on the runway with confidence, humour and pride.
poetry reading by the incredibly talented writer and motivational speaker Bakita, these women led the call and
response chants, derived from the anti-apartheid movement, of “THE POWER! – IS
OURS!” and “AMANDLA! – NGAWETHU!” in front of a packed-out house at London’s
Brixton East. Then the main show began: 25 women with HIV strutted their stuff
on the runway with confidence, humour and pride.
In her
introduction, Silvia Petretti, an AIDS activist and deputy CEO of Positively
UK, described how this fashion show was a huge step for women with HIV.
“Openness about HIV can lead to being harshly rejected, and even being at the
receiving end of violence,” she said. Positively UK was founded in 1987 (then
called “Positively Women”) by two women with AIDS who had noticed the paucity
of services for women with HIV, most of which were responding to the
devastating impacts of AIDS on the gay community.
introduction, Silvia Petretti, an AIDS activist and deputy CEO of Positively
UK, described how this fashion show was a huge step for women with HIV.
“Openness about HIV can lead to being harshly rejected, and even being at the
receiving end of violence,” she said. Positively UK was founded in 1987 (then
called “Positively Women”) by two women with AIDS who had noticed the paucity
of services for women with HIV, most of which were responding to the
devastating impacts of AIDS on the gay community.
 |
|
Women
strutting their stuff. ACT UP London Archive, 2018 |
Petretti
continued with some illuminating facts on women with HIV. 18m women across the world
have HIV, making them the largest global demographic. In the UK, women with HIV
make up 31%
of all cases, the second largest group, “although you rarely hear about us”,
and 80% of those
women are black or from other ethnic minorities.
continued with some illuminating facts on women with HIV. 18m women across the world
have HIV, making them the largest global demographic. In the UK, women with HIV
make up 31%
of all cases, the second largest group, “although you rarely hear about us”,
and 80% of those
women are black or from other ethnic minorities.
She also
spoke about how women with HIV are disproportionately burdened by poverty, the
impact of austerity and welfare cuts, racism and migrant hostility; and
highlighted the links between HIV and violence against women. One study
conducted by Homerton Hospital, Hackney, found a 52% prevalence of intimate
partner violence among women with HIV. This, Petretti stressed, is “more than
double that of the general population”.
spoke about how women with HIV are disproportionately burdened by poverty, the
impact of austerity and welfare cuts, racism and migrant hostility; and
highlighted the links between HIV and violence against women. One study
conducted by Homerton Hospital, Hackney, found a 52% prevalence of intimate
partner violence among women with HIV. This, Petretti stressed, is “more than
double that of the general population”.
In
defiance of these devastating statistics, the event contested any status of
“victimhood” for women with HIV, showing instead their incredible power and
presence as they walked the catwalk. One wore a red shawl with “I AM HERE”
inscribed on the back. Another shimmied and goose-stepped her way down the
runway with a cheeky smile on her face, the whole room laughing with her. They
were all totally in control, the audience whooping and cheering as the show
continued. It was an absolute privilege to be there, to witness such a
beautiful celebration of empowerment and the joy of living.
defiance of these devastating statistics, the event contested any status of
“victimhood” for women with HIV, showing instead their incredible power and
presence as they walked the catwalk. One wore a red shawl with “I AM HERE”
inscribed on the back. Another shimmied and goose-stepped her way down the
runway with a cheeky smile on her face, the whole room laughing with her. They
were all totally in control, the audience whooping and cheering as the show
continued. It was an absolute privilege to be there, to witness such a
beautiful celebration of empowerment and the joy of living.
 |
| Silvia Petretti, Angelina Namiba and Susan Cole at Catwalk for Power. ACT UP London Archive, 2018 |
Unrecognised,
unheard, unseen
Especially
so because I have spent the last four years researching the invisibility of
women with HIV/AIDS as part of my PhD, in which I examine the art of the
American AIDS crisis. In particular, I looked at two exhibitions on women with
AIDS, Until That
Last Breath: Women With AIDS, a selection of photographs by the
photographer Ann P Meredith, and Overlooked/Underplayed: Videos on
Women and AIDS by various artists. Both exhibitions were held at New
York’s New Museum of Contemporary Art in spring 1989, and both are missing from
many accounts of the history of art responding to HIV/AIDS.
so because I have spent the last four years researching the invisibility of
women with HIV/AIDS as part of my PhD, in which I examine the art of the
American AIDS crisis. In particular, I looked at two exhibitions on women with
AIDS, Until That
Last Breath: Women With AIDS, a selection of photographs by the
photographer Ann P Meredith, and Overlooked/Underplayed: Videos on
Women and AIDS by various artists. Both exhibitions were held at New
York’s New Museum of Contemporary Art in spring 1989, and both are missing from
many accounts of the history of art responding to HIV/AIDS.
This
artistic invisibility parallels a medical invisibility. AIDS (Acquired Immune
Deficiency Syndrome), is diagnosed
by the presence of HIV (Human Immunodeficiency Virus) in the blood, a T-cell
count of less than 200, and the presence of two opportunistic infections.
artistic invisibility parallels a medical invisibility. AIDS (Acquired Immune
Deficiency Syndrome), is diagnosed
by the presence of HIV (Human Immunodeficiency Virus) in the blood, a T-cell
count of less than 200, and the presence of two opportunistic infections.
But it
was not until 1993 that AIDS, as defined by the US Centers for Disease Control (CDC), included
opportunistic infections specific to womens’ bodies. This meant that prior to
the change, some women with AIDS could not be diagnosed as such, rendering them
medically and socially invisible. As described in Jim Hubbard and Sarah
Schulman’s film United in Anger: A History
of ACT UP, this change in 1993 came after four years of activist
campaigning by ACT UP and other community groups, which eventually forced the
CDC’s hand. Women with HIV and their queer allies alike fought hard for these
basic rights.
was not until 1993 that AIDS, as defined by the US Centers for Disease Control (CDC), included
opportunistic infections specific to womens’ bodies. This meant that prior to
the change, some women with AIDS could not be diagnosed as such, rendering them
medically and socially invisible. As described in Jim Hubbard and Sarah
Schulman’s film United in Anger: A History
of ACT UP, this change in 1993 came after four years of activist
campaigning by ACT UP and other community groups, which eventually forced the
CDC’s hand. Women with HIV and their queer allies alike fought hard for these
basic rights.
In Sue
O’Sullivan and Kate Thomson’s book
recounting the founding of Positively UK, researcher Emily Scharf writes:
O’Sullivan and Kate Thomson’s book
recounting the founding of Positively UK, researcher Emily Scharf writes:
Why are
women invisible? When we begin to ask this question, we see through the ‘spotlight’
of HIV all the problems that exist in our societies worldwide, including the
familiar ones for women. HIV highlights all the issues around womens’ positions
in society: often poorer; less access to health care for themselves; little
support in their roles as carers for others; and in less powerful positions to
negotiate relationships, including the sexual aspects of relationships, most
specifically safer sex.
The
invisibility of women with HIV is the result of a complex interplay of violence
and discrimination.
invisibility of women with HIV is the result of a complex interplay of violence
and discrimination.
At the
catwalk event, there were polite requests stuck around the walls asking that
the audience not take any photographs to protect the privacy of the women, many
of whom had not disclosed their status to anyone outside their support group.
The history of HIV/AIDS is a history of violence, and in today’s world,
violence against women is persistent and widespread, perpetuating stigma which
silences and disempowers women with HIV.
catwalk event, there were polite requests stuck around the walls asking that
the audience not take any photographs to protect the privacy of the women, many
of whom had not disclosed their status to anyone outside their support group.
The history of HIV/AIDS is a history of violence, and in today’s world,
violence against women is persistent and widespread, perpetuating stigma which
silences and disempowers women with HIV.
Speaking
up
up
Catwalk
for Power was all about empowerment and pride. It was the product of months of
workshops at Positively UK with ACT UP Women, where women with HIV talked about
their experiences, wrote poetry, learned about the history of HIV/AIDS
activism, “stitched and bitched” as they made their costumes all the while
discussing, arguing, laughing together.
for Power was all about empowerment and pride. It was the product of months of
workshops at Positively UK with ACT UP Women, where women with HIV talked about
their experiences, wrote poetry, learned about the history of HIV/AIDS
activism, “stitched and bitched” as they made their costumes all the while
discussing, arguing, laughing together.
The
anti-apartheid activist Steven Beko once said: “The most powerful tool in the
hands of the oppressor is the mind of the oppressed.” Petretti told me how in
her view, this sums up what events like the catwalk show can achieve for women
with HIV:
anti-apartheid activist Steven Beko once said: “The most powerful tool in the
hands of the oppressor is the mind of the oppressed.” Petretti told me how in
her view, this sums up what events like the catwalk show can achieve for women
with HIV:
It has
enabled us to shift our awareness and embody the fact that we are agents of
change, we can overcome stigma, and create a world that treats us with justice
and respect, and it starts with us feeling confident and demanding it.
Prior to
the event, which was choreographed with the help of the incredible runway coach
Madam Storm, the group had
made a set of masks that they were planning to wear on the runway, to cover
their faces at the moment when they would be openly seen as women with HIV.
the event, which was choreographed with the help of the incredible runway coach
Madam Storm, the group had
made a set of masks that they were planning to wear on the runway, to cover
their faces at the moment when they would be openly seen as women with HIV.
At the
end of the show, the pile of masks was still there on a table backstage,
untouched. They had all walked out without them.
end of the show, the pile of masks was still there on a table backstage,
untouched. They had all walked out without them.
