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Where's the hope? Dialogues for Solidarity - Session 1

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Session 1: GIPA Principles for the 21st Century with guest, Sean Strub, Sero Project, USA
Where’s the Hope?, a year-long series of dialogues for solidarity, is coordinated by ReShape, an independent London-based think tank formed to respond to the ongoing crisis in sexual health.
Working together, activists and organisers will share their experiences and explore new op- portunities to address explore chronic obstacles to successful organising in HIV, HCV and re- lated sexual and mental health concerns. Emerging advocates and organisers are especially welcome.

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Where's the hope? Dialogues for Solidarity - Session 1

  1. 1. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 1 Where’s the hope? Dialogues for Solidarity 23 March 2017 Session 1: GIPA Principles for the 21st Century with guest, Sean Strub, Sero Project, USA Where’s the Hope?, a year-long series of dialogues for solidarity, is coordinated by ReShape, an independent London-based think tank formed to respond to the ongoing crisis in sexual health. Working together, activists and organisers will share their experiences and explore new op- portunities to address explore chronic obstacles to successful organising in HIV, HCV and re- lated sexual and mental health concerns. Emerging advocates and organisers are especially welcome.
  2. 2. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 2
  3. 3. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 3 Background to the series Huge gains have been made in HIV and HCV, related sexual and mental health con- cerns. We have the science and practice to prevent and treat HIV and HCV; we know more than ever about related sexual and mental health concerns. We are reframing our problems to aim toward sexual health and social wellbeing. Yet individuals, organisations, the media and systems continue to stigmatise people living with these diseases and conditions and they often stigmatise themselves. One could al- so argue that these conditions are less stigmatised within the healthcare system today, than they once were - at least HIV - but MORE stigmatised outside of the healthcare system. Where’s the Hope?, the result of extensive dialogue with UK and international activ- ists, is a ReShape series of inter-related community dialogues, in partnership with leading UK HIV/HCV/sexual health and well-being sector organisers, organisations and out-of-country experts. The series will explore the key challenges and gaps of the day, and seeks to promote solidarity, community engagement, organiser mentoring / co-mentoring and effective initia- tives. Where’s the hope? intends to be inclusive of people living with HIV (PLHIV), people living with HCV, BAME (Black, Asian, Minority, Ethnic), trans people, elders and young people, as well as social researchers. The ReShape series is designed to assist organisers, activists, advocates and service users impacted by HIV, HCV and related sexual and mental health con- cerns, with a special focus on emerging advocates and organisers. All dialogues will be documented, disseminated and posted to contribute to local and international dialogue. The series will run monthly for a year, on the last Thursday of every month. Shenna McCormack European ChemSex Forum, 2015 We can’t keep compiling our lives as a series of problems one after the oth- er, HIV, Chemsex, hepatitis C, de- pression... We need to create institu- tions where people can get support for themselves in a holistic way around sexual health and well-being, rather than having their siloed expe- i e n c e s d
  4. 4. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 4 GIPA Principles for the 21st Century The series launched on Thursday 23rd March 2017 at 7pm with Sean Strub from the US, writer, activist and director of the SERO Project, introducing the series with an explora- tive look at the GIPA principles for the 21st Century. Can these principles be reconfigured to jump start more effective, more community- engaged advocacy for PrEP, HCV, testing and sexual health and social wellbeing? Guest Presenter: Sean Strub Sean Strub is a long-time activist and writer who has been HIV positive for more than 33 years. He is the founder of POZ Magazine, the leading independent global source of information about HIV, and served as its pub- lisher and executive editor from 1994 to 2004. He presently serves as the executive director of the SERO Project, a network of people with HIV fighting for freedom from stigma and injustice. He served on the board of directors of the Global Network of People living with HIV/AIDS from 2009 to 2012 and as co-chair of its North American affiliate from 2011 to 2012. He is a popular speaker and is frequently cited in the media as an expert on HIV preven- tion and treatment policy and the intersection of sex, public health and the law. He is a rec- ognised global leader in the effort to empower people with HIV to be meaningfully engaged in the response to the epidemic and in combating HIV-related stigma, discrimination and crimi- nalisation. Sean Strub was active with the People With AIDS Coalition/New York in the mid 80s, co-chaired the fundraising committee for ACT UP/New York in the late 80s and in 1990 be- came the first openly HIV positive person to run for the U.S. Congress. He was the producer of David Drake’s hit play, The Night Larry Kramer Kissed Me, which has now been performed in more than 20 countries. In 2010, he co-founded the Positive Justice Project and produced the short documentary film, “HIV is Not a Crime,” about HIV criminalisation in the U.S. He is the author of Body Counts, A Memoir of Politics, AIDS, Sex and Survival (Scribner, 2014).
  5. 5. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 5 The event started with Sean looking back at the historical context behind the GIPA prin- ciples, before moving forward to the present time. Historical Context The People living with HIV self-empowerment movement goes back to the very first days of the epidemics in New-York, where a group of people who had been diagnosed found each others in 1982 and started to organise. The Denver Principles’ document was created in Denver, Colorado in 1983 by the Ad- visory Committee of the People with AIDS. It was the first time that PLWHs from around the USA gathered together to strategise politically and to speak with a collective voice. It was also the first time in history that a group of people sharing a disease organised and asserted their rights to have a place at the table. The document was inspired by the women’s health move- ment in the 60s and 70s and drew on the collective wisdom of a community and not just ex- perts imposing their wisdom. The statements include recommendations on how to support those with disease and suggestions for people who have AIDS. It concludes by listing the "rights of people with AIDS." The documents remains as relevant today as it ever was. The Denver principles began their global influence a couple of years later with the WHO Ottawa Charter for Health Promotion which refers to the Denver Principles’ model of empowering people to improve their health, and the UNAIDS Paris declaration in 1994 defin- ing GIPA/MIPA (Greater involvement of people with AIDS/Meaningful involvement of people with AIDS). Those years of the early epidemics were a very important part of the response to HIV, supporting people who had a virus, organising and working with each other. Whether it was for pure social support, or for creating an agenda and/or setting priorities, through those newly developed networks all over the US, people living with HIV were able to define their own agenda, select leadership of their choosing and hold them accountable. This is where PLWHs learnt how to disclose and how to live with the consequences of their diagnosis. Although the ideals of the Denver Principles are as important today, the context is very different. Diagnosis today obviously means something very different for people who have ac- cess to treatment. With the biomedicalisation of prevention and treatment, we have wit- nessed a retreat in the support of people with HIV. When someone was diagnosed in the past, 2 things would usually happen in the US: Firstly, people were told not to tell anyone until they had a supportive network of people around them who could help the newly diagnosed person cope with the consequences of dis- closure and secondly, they would be connected with a support group of other people with HIV who could help them through this process. Today, in the US, as soon as one is diagnosed, at a moment of deep distress and life changing news, people are usually asked to sign a legal document acknowledging the criminal statute in case of non-disclosure. Additionally, there are very few support groups and net- works tend to be very separate from service providers.
  6. 6. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 6 The biggest difference however is that, for many people being diagnosed, in the early days of the epidemic AIDS was a singular challenge, particularly for the people who became the most visible: white gay men. Although there was social stigma in being gay, their gender and skin colour gave them the privilege to withstand it. ACT UP, at its beginning, was driven by the energy of middle and upper middle class white gay men, who when they realised gov- ernments were perfectly happy to let them die, became enraged and started to organise. Gay white men were also the ones who had access to the media, a reality that impacted the future representation of the epidemic in exhibits, films, memoriums, books etc. However, for many other people, the diagnosis had to get in line with a series of other challenges in their lives. Racism, poverty, addiction, sexism rendered a lot of their efforts in these earlier years, relatively invisible. Today, anybody serious about the epidemic knows that to be effective in our approach, it has to be in context with all the other challenges faced by PLWHs. The look back on the epidemic can probably be traced back to the last 10 years, when people finally became able to grieve and honour and recognise the people who were lost. ACT-UP is generally recognised for its contribution of expediting the drugs approval process in the US but people are now realising that they were in effect doing the drug companies de- regulated dirty work. What happened went too far but people were trying to survive and only now are we able to reflect on it. One of the most important milestones for people with HIV was the publication of a book called Surviving AIDS, written in 1990 by Michael Callen, an early activist. The book documented both his own story and, through in-depth interviews, the stories of thirteen oth- er long-term survivors. These men all had 3 things in common:  they believed that someone would survived,  they could identify a purpose to waking up in the morning and articulate a reason for living, and  they were all incredibly proactive with their care, with a very long list of strategies such as taking supplements, having acupuncture, going for massages and any other means to keep them in good health. At the time, the book was criticised for offering cruel hope to people, but the very concept that someone could survive brought light to the hopeless. Individually today, the experience of HIV is very different. HIV related stigma is worse today that is has ever been. With more knowledge about the epidemic, the fear of contagion is not so great, but stigma, as experienced by the stigmatised, is more nuanced. It’s about people making a moral judgement about one’s values when they find out about their diagnosis. To- day’s stigma is about internalised stigma, mainly driven by isolation. Before the advent of ef- fective treatment, the visibility and the mortality rates of the illness made the need to disclose much more obvious while today, faced with the presumed consequences on one’s career, so- cial life, family life, and the risks of violence, many people choose to keep their diagnosis se- cret. Today people have to ask themselves what disclosure will mean for their life. Up until the introduction of antiretroviral treatment, people with AIDS were viewed through a sympathetic lens. They were seen as victims, as people suffering, as people likely to die soon. With treatment, the perception of people with HIV changed, they started to be seen as an infectious and dangerous population which needed to be identified, tested, reported, controlled, monitored and increasingly criminalised. The media covering also changed from
  7. 7. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 7 inspiring media stories of brave individuals fighting the disease, to stories of “AIDS monster” or “AIDS predator” more often than not in a criminal context. Isolation, lack of networks and social support, change in media covering, institutional structures are all contributing to increased stigma. In 2015, the SERO project launched an initiative to document the state of networks for and led by HIV positive people in the US. The Network Empowerment Project aims to re- energise networks of people living with HIV. The results of the survey can be downloaded here. The survey has shown that the past few years have seen a surge of networks, many of them started as a response to a threat, criminalisation in particular. Some started online, as Facebook groups, some were pop-up social events, dinner clubs etc. Many felt that people with HIV were often allowed to speak but were rarely taken seriously. To move forward, they wanted funding and assistance getting funding; toolkits, templates & resource directories; help to share skills and news; help in supporting each other in facing common problems; help in coordinating advocacy on national issues, such as HIV criminalisation and assistance con- necting to people who are underserved or ignored by their local HIV groups. Going forward – Key points from the discussion Varying points of view We need to stop focussing so much on HV prevention and start focussing on teaching sexual health to young people. At present, at the current rate of infection among African American MSMs, half of this population will be positive by the time they are 30. In the US, the focus on PrEP has made it harder for people to have access to condoms, it has also ignored people who for a variety of reasons might not be able to talk about their sexuality or their health, making it difficult for people to have a conversation with a doctor about risks. PrEP has accelerated the changing social norms around condom use. These unintended conse- quences need to be considered. In terms of the GIPA principles, there are similarities around PrEP activism. On the whole, people living with HIV are the PrEP activists; very few HIV negative users have a pub- lic profile. Thousands are using PrEP but only a handful are talking about it and the secrecy around disclosure is reinforcing stigma. Furthermore, public health and media coverage have made PrEP into a sexual freedom issue rather than a prevention issue, linking it to notions of choice and irresponsibility. Without sexual education, the communities are stigmatising each other and PrEP and HIV have suddenly become a gay disease again. By not being available freely for all who demand it, the deficit of the health service in the UK and of our disjointed activism are reinforcing inequalities. PrEP presents an opportunity: the opportunity to open conversation between positive and negative people, so PLWHs can stop talking to themselves. It’s also the opportunity to go back to the communities to continue the discussion around treatment and around living with HIV. PrEP should not be talked about in isolation; we need to broaden the conversation to sexual health rather than HIV prevention alone.
  8. 8. Where’s the hope: Dialogues for solidarity – Session 1 Coordinated by ReShape 8 Issues around stigma and challenges around disclosure are increasing and need to be acknowledged. Campaigns, service organisations are always talking about disclosing but we need first to focus on making it safer for people to do so. We need to start challenging percep- tions around stigma and disclosure. For many of the key population, stigma is one facet of their identity. They are scared of talking about HIV, sex, and condoms because of the stigma in their own communities. It’s an issue of poverty, of class, of multiple vulnerabilities. This is what needs to be addressed. HIV so closely intersects with other challenges, around power, racism, drug abuse, ad- diction, mental health, trans* issues etc, that people with HIV have a role to play as leaders. They can be the solution and organise and put forward a vision with hope. People with HIV need to embrace their pathfinder role. We need to think about the othering issue, the ability of each in our own community to point at other people and blame. It’s very difficult to find hope when there is so much destruc- tion. There must be a way to connect the dots, join up together and have one common mes- sage. We need to look for commonality so we can campaign and advocate together on com- mon issues. People under 30 do not have experience of the early days of the epidemic. To invigor- ate community action and make things go forward in the long-term, we need to create the space and the opportunities for young people and involve them in creating community action programmes. It’s not just about teaching them but also about learning from them. We need to find alternative ways to network, more dynamic, go to universities and start discussions out- side of small groups like this. It is time to go back to small groups of people meeting in coffee shops or other safe places to organise and find our voice. We need to find new forms of networks and invest re- sources as organisers, as a community, in creating opportunities for people with HIV to con- nect with each other. Maybe by focussing on the small answers to start with, we can think about sharing solutions and ways to work together. Next event Where’s the Hope? Dialogues for solidarity Life experiences: Women as service users and providers With guests Memory Sachikonye and Sophie Strachan, Sophia Forum, London Session 2 of the series Date & Time: 27 April 2017 @ 7pm Location: Stillpoint Spaces, 23 Clerkenwell Close, London EC1R 0AA Please print out a map when you come the first time. It’s hard to find if you don’t. Very near Farringdon Station.

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