Last month watching the Oscar winning film Milk made me reflect more deeply on the role gay men have had in creating and developing HIV activism. Milk is the moving life story of Harvey Milk, the first openly gay man elected to public office in San Francisco 1978, and his subsequent tragic assassination. The film made me reflect on the connections and influences between the movements for gay rights and the movement of People Living With HIV and AIDS (PLWHA). It also made me reflect on the present weaknesses of activism in the UK.
Of course the first connection between the movement of PLWHA and the gay movement is historical. In 1981 the first name for AIDS was GRID: Gay Related Immune Deficiency. The acronym was created by the Centre for Disease Control (CDC) following the death of a group of men in Los Angeles who were openly homosexual from PCP (pneumocystis carinii pneumonia), a type of pneumonia that at that time was ‘almost exclusively limited to severely immune suppressed patients,’ such as older patients or those receiving cancer chemotherapy. GRID was soon changed to Acquired Immune Deficiency Syndrome (AIDS) as the number of gay men dying continued growing, but other groups started dying inexplicably from similar infections, mainly injecting drug users and haemophiliacs.
Gay men came to the tragedy onset of the AIDS pandemic equipped with a lot of experience in fighting for their rights. Many of the men who were supporting Harvey Milk became in the 1980’s, AIDS activists, and set up organisations such as ACT UP – which I think has the coolest acronym in the history of AIDS activism, it stands for AIDS Coalition to Unleash Power!
The official birth of the Self Empowerment Movement of People with AIDS (PWA) – as it was called then, before HIV was discovered – was in 1983 in Denver during The National Lesbian and Gay Health conference in which the first manifesto for a political network of PLWHA was launched. The manifesto is known as the Denver Principles. I think you would agree with me that those principles are as valid as ever:
The Denver Principles
We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness and dependence upon the care of others. We are ‘People with AIDS.’ [sic]
RECOMMENDATIONS FOR ALL PEOPLE
1. Support us in our struggle against those who would fire us from our jobs, evict us from our homes, refuse to touch us or separate us from our loved ones, our community or our peers, since available evidence does not support the view that AIDS can be spread by casual, social contact.
2. Don’t scapegoat people with AIDS, blame us for the epidemic or generalise about our lifestyles.
RECOMMENDATIONS FOR PEOPLE WITH AIDS
1. Form caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies.
2. Be involved at every level of decision-making and specifically serve on the boards of directors of provider organisations.
3. Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.
4. Substitute low-risk sexual behaviours for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.
RIGHTS OF PEOPLE WITH AIDS
1. To as full and satisfying sexual and emotional lives as anyone else.
2. To quality medical treatment and quality social service provision without discrimination of any form, including sexual orientation, gender, diagnosis, economic status or race.
3. To full explanations of all medical procedures and risks, to choose or refuse their treatment modalities, to refuse to participate in research without jeopardising their treatment and to make informed decisions about their lives.
4. To privacy, to confidentiality of medical records, to human respect and to choose who their significant others are.
5. To die — and to LIVE — in dignity.
The film Milk also made me think about another strong connection between one of the crucial issues of the Gay movement and the movement of PLWHA. A central part of the film is when Harvey Milk has to deal with Proposition 6, an initiative to ban gays and lesbians from teaching in public schools. While addressing homosexuals around the US, Harvey Milk urges everybody to come out, so that all in society can realise that they know and love somebody who is gay or homosexual. Harvey Milk’s words made me realise the fact that the great number of people, just in the past few decades, who have come out as gay and lesbians has contributed enormously to an increase in the acceptance of gay and lesbian people in society, and the recognising and upholding of their rights. I am also painfully aware that we still have a lot of ground to cover and our society is still very homophobic. However, huge steps have been taken just in recent times, such as the legal recognition of gay marriages through civil partnership, in the UK. That advancement would have not been possible without the courage of so many homosexuals who in spite of society’s widespread prejudices have been open about their identity and vocals in reclaiming their rights.
Milk made me once again realise that being ‘out’ and ‘open’ about living with HIV is key if we are to eliminate HIV related stigma. It is only when people realise that HIV is not about ‘Us’ and ‘Them’, when everybody realises that they know and love somebody who is HIV positive or has been affected by HIV, that prejudice will diminish and maybe even disappear. This cannot happen until more of us are open about our status.
I know it is hard, I know it is impossible for some of us, who fear they will harm loved ones, or that they could experience rejection, isolation or even violence… However, this is what gay people too had to face and many of them in conjunction with HIV! Living openly with HIV is a crucial weapon to challenge the stigma and discrimination that are still rife in society. If we are not going to do it… Who is going to do it for us?
I don’t mean that we all have to go public and speak on the 6 o’clock news! But I believe every little act of openness is a manifestation of self-acceptance and a further step towards creating a more compassionate and supportive world for PLWHA. It may just start with a few friends, our neighbours, somebody we work with, our children, our families… Every time we disclose to more people safely, we become more empowered and we push prejudices and shame away.
So if you disclose to somebody new in the next few days, weeks, months or years… pat yourself on the shoulder because it is an important action for all of us living with HIV!
Reflecting on openness has made me realise that the group that have been most closeted about their HIV status are heterosexual men, especially white men (with a few exceptions mainly among haemophiliacs and injecting drug users). I guess the main reasons could be: firstly because of their general ‘advantage’ in society they are the ones who would lose the most (income, social status, opportunities for sexual partners etc.). Secondly, maybe, most men are brought up to express less their feelings and emotions and therefore stay longer in denial around many of the issues around HIV. Thirdly, they have been often demonised in the world of HIV as ‘vectors’ of infection, unwilling to wear condoms and the main cause of growing infections among women (who in return have often been ‘victimised’). Those are the main reasons I imagine, but I would be curious to know more.
Probably the small number of people who are open about their HIV status in the UK is also due to lack of support and a weak activist community. It is interesting to see that in the US, the National Association of People with AIDS (NAPWA) in collaboration with POZ magazine have launched this year a new initiative called the Denver Principles Project, which aims to recommit the HIV community and increase their membership. They are aiming to have 100.000 members by the 1st of December 2009, World AIDS Day. I would really like us, in the UK, to join the activists from the States and recommit ourselves to the Denver Principles; and, in order to do this, to create a Network of People Living with HIV. Of course, there are organisations that campaign and speak on our behalf. However, it is not the same thing as having our own voice, and such a network would make the existing campaigning organisation more effective. With the number of us living with HIV always increasing it is crucial that we form a network which includes HIV positive men and women of any sexuality and race… It is almost unbelievable we don’t have one yet! What are we waiting for?
For more info on the Denver Principle Project http://http://www.napwa.org/denverprinciplesproject
