Scrapbook 6-10

Fighting, Caring, Grieving, Surviving: AIDS in the Netherlands


Introduction
In the early 1980s, a few Dutch doctors were following news in America of a deadly disease among young, sexually active gay men. These formerly healthy men were suddenly becoming seriously ill, with a range of conditions more usually seen among people with compromised immune systems.
In 1982, the first cases appeared in the Netherlands. Later that year, the cluster of illnesses and weakened immunity was named Acquired Immune Deficiency Syndrome (AIDS), although the virus that caused AIDS was not identified until 1985.
AIDS Memorial Day, 1988 Courtesy Nationaal Archief Den Haag


Fighting the Emerging Epidemic
From the earliest article in January 1982, the Dutch press referred to a ‘gay disease’, just as journalists in other Western countries had done. Prominent gay scientists in the Netherlands quickly challenged this representation, as part of efforts to prevent the stigmatization of gay men. In contrast to the US, the AIDS crisis did not fuel homophobia in Dutch society, due in part to this strategy, as well as the previous successes of the movement for gay emancipation.
Newspaper headlines declare a “New epidemic threatens gays”, “Serious viral illness threatens active homosexuals” and that the largest gay rights organization, Cultuur- en OntspanningsCentrum (COC), will provide education on “gay disease”
Telegraaf, January 1982; NRC, May 1982; Volkskrant, June 1983, all courtesy IHLIA


AIDS Advocacy Groups Collaborate
Gay organizations helped to shape AIDS policy via the culture of ‘polderen’ (political compromise). This occurred in private meetings with government officials, leading to less public debate over the measures taken.
The organization responsible for AIDS policy was the Nationale Commissie AIDS Bestrijding (National Committee on AIDS Control), founded in 1983 as the Landelijk AIDS Coordinatieteam (National AIDS Coordinating Team).
Their main focus was combating stigma and fear of AIDS and people with AIDS.
The committee was criticized by some high-profile medical professionals, including board member and virologist Roel Coutinho (left in this image), for being too sensitive to gay rights at the risk of public health. Others argued that by discouraging penetrative sex, and not promoting condom use until 1987, their advice was conservative and unrealistic.
National Committee on AIDS Control at the launch of the first Condom Campaign, 1987
SOA AIDS Nederland, Courtesy Nationaal Archief


Relations between the different organizations were sometimes tense, especially between the Belangenvereniging voor Mensen met AIDS (BMA), and the Belangenbehartiging voor Seropositieven (BSP), which was aimed specifically at HIV positive people who did not have AIDS. Joop van der Linden (third on the left) , a long-time board member of the BMA said:
“They were two separate worlds. Especially at a time when having an AIDS diagnosis meant that you were going to die.”
In 1989, the two major advocacy groups for people with HIV/AIDS fused into the Hiv Vereniging Nederland (HVN). The HVN remains the biggest advocacy group for people with HIV/AIDS in the Netherlands today.
(Left) AIDS education at at COC, 1984 Courtesy Erwin Olaf
(Above) Board of the Belangenvereniging voor Mensen met AIDS en Arc ,
the first organization for people with AIDS, founded in 1985, pictured here in 1987 SOA AIDS Nederland, Courtesy Nationaal Archief


The AIDS Campaign in the Netherlands
The first public campaign against AIDS was launched in the Netherlands in 1987. The central motif, of a bee visiting different flowers, struck a very different tone to campaigns in other countries. Instead of evoking fear, as in the “Don’t die of ignorance” strategy in the United Kingdom, these advertisements were less frightening and more direct. They did not name gay men as a specific risk group, to help to the process of onthomoseksualiseren, meaning to break the association between AIDS and gay men. This was a key goal of the largest gay rights organization, Cultuur- en OntspanningsCentrum (COC).
“Don’t Die of Ignorance”, UK educational advertisement, 1986 Courtesy Wellcome Library
Click for the Dutch commercial:
http://bit.ly/2p9rAjy
Click for the English commercial:
http://bit.ly/2oONeIS
Right: The first national AIDS Commercial on Dutch television, 1987
PMSvW/Y&R Courtesy IADDB


Safe Sex Festival and Market
Promotional poster for the first Safe Sex Market at the Jan van Galenstraat, Amsterdam, 1986 Courtesy Geheugen van Nederland
Promotional poster Safe sex Market at the Nes, Amsterdam 1988
Stichting SOAAIDS Nederland, courtesy Nationaal Archief
Organizations responding to AIDS collaborated on events, such as the Safe Sex Markets held in Amsterdam and Rotterdam, which took a lighthearted approach to preventing the spread of HIV. The Amsterdam event in 1988, which drew 20.000 visitors, was organized by BMA Boardmember Jeanette Kok, a nurse who dedicated much of her career to advocacy for people with HIV and AIDS, and AIDS education.


(Left) Safe Sex Market at the Nes, Amsterdam, 1988
(Above) Dutch rock band De Dijk performing at the Safe Sex market, 1988 Courtesy Jeanette Kok


(Below) Bodypainting at the Safe Sex Market, Amsterdam 1988
Courtesy Jeanette Kok
(Above) Safe Sex education for women at the Safe Sex Market, Amsterdam 1988
Courtesy Jeanette Kok


Caring in the Buddy System
GMHC client with a volunteer from the original Buddy Program, circa 1990
Courtesy Gay Men’s Health Crisis
Having experienced the panic that surrounded AIDS in America, when the government was unwilling to invest in AIDS research and strategies to prevent the spread of HIV, psychotherapist David Stein was inspired by the way the gay community there took care of itself. Activities such as the Shanti Project in San Francisco, and the buddy project launched by Gay Men’s Health Crisis in New York, offered practical and emotional support to people with AIDS with the help of volunteers.


The first Dutch buddy program was organized by the Schorerstichting, a foundation primarily focused on physical and mental healthcare for gay men and women. David Stein played a leading role in the training and recruitment of buddies, who helped their clients with day to day chores, but also with the emotional weight of coping with their life-threatening illness.
The first groups of buddies were admired by others in the gay community for taking on these responsibilities. The heroism associated with the work of AIDS buddies attracted more volunteers, as well as funding to professionalize their training and the organization of the buddy system.
(Right) A client and his buddy at AIDS Memorial Day, 1992
Courtesy Han Singels
(Above) Henk Koers and his buddy in hospital, 1992
Courtesy Han Singels


Grieving on AIDS Memorial Day
Nurse Jeanette Kok, and psychotherapist David Stein, who had played such an instrumental role in setting up the buddy system, were also two of the founders of AIDS Memorial Day. AIDS candlelight marches had been organized as early as 1983, partly to show the public how many people had been affected by AIDS.
Stein had seen the 1985 AIDS candlelight march in San Francisco, and wanted a similar event in the Netherlands. In his view, AIDS brought gay men, “a community of loose sand”, closer together to form a stronger group.
(Right) Poster from the San Francisco AIDS Candlelight March, the event that was the inspiration for AIDS Memorial Day in the Netherlands, 1983 Courtesy GHMC


AIDS Memorial Day, Nieuwe Kerk Amsterdam, 1991
Courtesy Han Singels
The first AIDS Memorial Day was organized in Amsterdam in 1985. People who had lost a loved one, or who were living with HIV/AIDS, could join together with families and friends to mourn the dead and share the burden of grief and worry. Although many gay men with AIDS lived in Amsterdam, their families often did not. In other Dutch towns, many people did not dare to talk about HIV/AIDS because it was more stigmatized outside of the big cities.
The first AIDS Memorial Day was quite small, but attendees encouraged Kok and Stein to continue organizing the event. Each year it grew larger, with the rising number of AIDS diagnoses and deaths in the Netherlands and its impact across different groups, including hemophiliacs and intravenous drug users. Because of its growth, AIDS Memorial Day had to switch venues several times, first to the Oude Kerk, then the Nieuwe Kerk and to the Beurs van Berlage.


Singing on Dam Square, AIDS Memorial Day, Amsterdam 1991
Courtesy Han Singels
Every year the same rituals were followed, with speeches, music and displays of the AIDS Memorial Quilt, another project to commemorate those lost in the epidemic. A candle was lit for every person who had died of AIDS and their name was read aloud. At the end of the day, the attendees would all go to the Dam Square and sing The Rose, a song popularized by gay icon Bette Midler. After that, the group released white balloons inscribed with the names of their loved ones into the air.


Preparing to release white balloons on Dam Square, 1992 Lighting candles at AIDS Memorial Day, 1994
Courtesy Han Singels Courtesy Stichting NAMEN Project


Display of the AIDS Memorial Quilt, AIDS Memorial Day 2003
Courtesy Stichting NAMEN Project Nederland
Performance at AIDS Memorial Day, 2002
Courtesy Stichting NAMEN Project Nederland


An End to Grieving?
After the introduction of the effective AIDS treatment known as Highly Active Anti-Retroviral Therapy (HAART) in 1996, public interest in AIDS Memorial Day started to wane. The communities involved wanted to focus on living with HIV, not on dying of AIDS.
In 2013, after nearly 30 years of support, the HIV Vereniging Nederland stated that the world of HIV had changed and that AIDS Memorial Day no longer corresponded with their goals. In 2016, the AIDS Monument was unveiled. Instead of memorializing the dead, the monument, reminiscent of an abacus, also commemorates the living and “counting away the days until HIV and AIDS are out of the world.”
AIDS Monument “Living by Numbers”, Amsterdam 2016
Courtesy IHLIA


A Personal Perspective: Eric Windhorst
Eric Windhorst (right) and his buddy Pieter, 1990
Courtesy Eric Windhorst
Eric Windhorst talking about living with HIV, 2017
Eric Windhorst (Haarlem, 1962) is an artist and a street musician. In the summer of 1987 he developed a persistent cough and suffered weight loss of which he thought was due to stress. In September 1987 Eric was diagnosed with AIDS. He was one of the first people in the Netherlands to be treated with the antiretroviral drug Azidothymidine (AZT), the earliest available treatment for HIV.


Eric Windhorst marching and playing the bagpipe in front of Ijsselvliedt Manor Courtesy Eric Windhorst
Eric Windhorst remembers IJsselvliet:
https://goo.gl/qeMNvf
Eric Windhorst on his friend from IJsselvliet, Julien de Vries:
https://goo.gl/CFk7wt
From 1988 until 2004, the Dutch Red Cross organized holidays for people with AIDS. As many people with AIDS were unable to work and depended on government benefits, they could apply for funding for the trip from the Hiv Vereniging Nederland.
With the help of many buddies and other volunteers, they could then travel to IJsselvliet, nearby the Dutch town of Wezep, to spend some time relaxing in comfort and safety. IJsselvliet still exists as a private care hotel for people with disabilities and illnesses.
Eric attended AIDS Memorial Day until the last one in 2013, usually leading the parade in full traditional Scottish attire whilst playing Amazing Grace on his bagpipe.
Eric Windhorst on AIDS Memorial Day:
https://goo.gl/gk9Png


Eric Windhorst on living with HIV today:
https://goo.gl/em2ceJ


Credits
This AIDS Digital Scrapbook was researched and co-authored by Hugo Schalkwijk, with co-author and editor Dr. Manon S. Parry
Special thanks to:
The Amsterdam Center for Cultural Heritage and Identity and the Amsterdam School of Historical Studies at the University of Amsterdam, for funding for this project.
Interviewee Eric Windhorst, who also shared his extensive photo archive. Jeanette Kok, Han Singels, and Jörn Wolters, who shared their personal archives.
David Stein, who shared his recollections on his role setting up the Schorer buddy project.
Also thanks to the archives IHLIA, IISG Amsterdam, Stichting NAMEN Project Nederland, Nationaal Archief Den Haag, het Stadsarchief Amsterdam and Gay Men’s Health Crisis.