UK The Political Issue
In this issue... 2
Editor’s Letter
3-7 Inspiration from the International AIDS Conference
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Debbie McMillan’s Plenary: Making Waves: The Changing Tide of HIV and Drug Use
10-11 Moving from Fear to Empowerment: HIV and the Criminal Law
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Living Conference, 2012
14-15 The Power of Activism
16-17 Going Viral: Using Social Media for HIV Activism
18-22 Stand Tall, Get Snapped: 30 HIV+ People
23-25 Disclosing as a Form of Activism
26-27 The New Activism 28-29 Let’s Talk...
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Engagement
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30-31 Spotlight On... Peer Mentors
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Recently at Pos UK
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Julie: Gender Inequality and the Cuts.
Positively UK Autumn 2012
Editor’s Letter Welcome to ‘The Political Issue’ of Positively UK magazine, inspired by the 19th International AIDS Conference held in Washington DC this summer. 20,000 delegates from nearly 200 countries attended AIDS 2012 for a week of talks, workshops and protests in which they debated and discussed, amongst other things, developments in treatments and the greater involvement of positive people in policies and decision making. It is of great symbolic importance that the conference was held in America as the US entry ban for people living with HIV has only recently been lifted, an achievement which Kate Thomson recognised in her opening speech, “is thanks to persistent advocacy […] from the US and elsewhere.” It seems incredibly fitting that AIDS 2012 was able to take place in the US precisely because of the qualities it promotes: engagement, debate, activism and advocacy. With that in mind, this issue aims to discuss activism in its various forms: On the opposite page National AIDS Map’s Greta Hughson selects her favorite blog posts and photographs from the conference, in which the vibrancy and intensity of the street protests are apparent. As she explains, “the revitalising effect of marching side by side with other people should not be underestimated!” On page 14 HOPE not hate activist Ben Osborn talks about the roots of activism, giving key examples that highlight its power as a mechanism for change. Later Robert James argues that HIV activism has taken on a new form in the wake of treatment and long life. He describes the journey “from protest to involvement” as “activists who had started as outsiders [...] are now talking with clinicians and government departments” (26). We follow Robert’s article with a step by step guide on how to be more involved, knowledgeable and engaged in the issues
that directly affect you (28): after all, who is better suited to shape policy on HIV than those who are HIV positive? From the standpoint that “the personal is political”, HIV activist and blogger Silvia Petretti discusses blogging as a form of activism, stating that “stigma will end when we are visible and our voices are heard” (16). In a similar vein, Dan Hartland, director of HIV awareness charity Saving Lives, talks about disclosure as a political statement: “only openness, solidarity and public advocacy may soothe the fear of stigma felt amongst many” (23). In keeping with this, we have a collection of personal stories in which positive people talk openly and honestly about their status. Edo Zollo’s wonderful photography project ‘Stand Tall, Get Snapped’ (18) aims to discourage misconceptions and generalisations about HIV through a collection of 30 portraits, each depicting a positive person. One participant, Julie uses the project to celebrate the fact that she is “laid bare, for all to see.” Sometimes it is easy to feel powerless, as though we have no bearing on changing things. But, as the stories in this issue show, it is important not to underestimate your own influence. There is still important work to be done. Your engagement will engage others, your involvement will involve others and your activism will make others active. Positively UK
Inspiration from the International AIDS Conference Memories of AIDS 2012 are still fresh in my mind. It was a summers week of heat, colour, noise and inspiration.
with protestors out on the streets and in the ‘global village’ with community organisations and exhibitors from all over the world.
I work for National AIDS Map (NAM) and, as the official online science news provider for AIDS 2012, our team worked round the clock, enabling people all over the world to see the latest research presented at the conference. You can find all this coverage online at www.aidsmap.com/aids2012.
The global village is an established part of the conference experience, with its own programme of debates, art, music and theatre. It’s a vibrant, sociable place, where networking happens easily, activists and advocates can collaborate, and real-world experience is front and centre. Seasoned conference delegates know that the global village is well worth a visit and most take time out of the conference sessions to visit it.
With almost 24,000 participants, there was a hive of activity alongside the conference sessions. I spent my days marching
e s u o H e t i h W sage to the
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Blogpost: Sunday 22nd July 2012
On the following pages I have selected some of my favourite blogposts and photographs from AIDS 2012. I hope they will give you a flavour of the powerful, and often beautiful aspects of the conference.
“There’s been so much build-up, including several preconference events, that it’s almost hard to believe the 19th International AIDS Conference in Washington DC has only just begun! Rumoured to be the largest health-related event in the world, delegates have been flying in from all over the globe to attend.
Activism these days can be a long game, requiring patience, negotiation and working within a system. Attending user groups, responding to consultations, writing to MPs, or meeting with service managers can be really effective and necessary steps towards making things happen. And through online surveys, email groups, forums and social media it is entirely possible to be an activist without ever leaving your home. But the revitalising effect of marching side by side with other people should not be underestimated! There is a release in shouting your demands together, a feeling of strength in numbers and a warmth in the solidarity and support of strangers.
Held every two years, the conference has long been a meeting place for researchers, implementors and activists, and this year is no exception. As delegates were gathering in the conference centre for the opening session, the ‘Keep the Promise’ march was getting started just a stone’s throw away from the Washington Monument. The red umbrellas given out by the organisers were put to good use as shade against the fierce afternoon sunshine and, just before the march set off, they bobbed up and down in appreciation of Wyclef Jean’s performance.
@nadhassen Productive and informative conference with closing ceremony officially over. Looking forward to implementing what I’ve learned! #aids2012
One of the main reasons people come to the conference is to connect with others and feel strengthened and empowered through sharing experiences and ideas. In an era when HIV activism often means engaging with professional bodies and lobbying politicians, there is something joyful and cathartic about marching together and shouting loud!
Photo by Denis Largeron, copyright MSMGF
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Roger Pebody, one of NAM’s editors, at the MSMGF preconference.
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An opportunity to educate
Keep the promise march
Blogpost: Tuesday 24th July 2012 “Today marked another day of activism in Washington DC as people took to the streets in a ‘mobilisation for economic justice and human rights’. Organised to coincide with AIDS 2012, five separate marches were held, each taking a different route before converging in front of the White House. The five strands were defined as: 1. A ‘Robin Hood’ tax on Wall Street 2. People over pharma profits 3. Promote sound policies 4. End the war on women 5. Human rights and harm reduction. A group of nurses from National Nurses United, the largest union of nurses in the US, were vocal supporters of the ‘Robin Hood’ tax group. In their distinctive green felt hats they spoke of their anger with the current inequalities in the US:
“It’s a disgrace, a national disgrace. We want our money back! From across the country, the nurses are here. They stand with everyone involved in the social movement, everyone involved in the AIDS movement... we’re here for the long haul and Wall Street’s gonna pay!” I marched with the ‘End the War on Women’ group and they were in fine voice. The mood was warm and optimistic, strong and defiant: “Women, united, will never be defeated!” With many groups represented, the list of demands from the marchers included: the scale-up of TB programmes; the expansion of harm reduction programmes; an end to the criminalisation of sex workers, drug users and people living with HIV and universal access to HIV treatment. As all the groups converged, the message from the podium was clear. If we have the tools to end the epidemic, it’s not good enough to say that we don’t have the money. Find the money. End AIDS.”
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You can find out more about today’s march at www. keepthepromise2012.org.”
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Lasting impressions A few months on, I feel I’m still processing my first experience of the International AIDS Conference. I’ve heard that, for some people, the conference is lacking in action and outcomes and, to be honest, I can see why some people find it frustrating - the sheer scale of the event is dizzying. I also found the amount of money put into gimmicks by some of the companies and organisations there uncomfortable, given the limited funds available for crucial treatment and care services around the world. With the advent of webcasting and instant news reporting the information delivered by the conference could have easily been received from home. I even felt I had to read all the reporting online when I got back to the UK, as I hadn’t picked up everything during the week. But, for me, the experience was inspiring. I met incredible people, watched and listened to interesting stories and felt revitalised by the passion and motivation on display. In particular, I felt the voices of women were clear and loud, although some have said women were not so visible in the conference halls.
@anhavana Glad I got to come to #AIDS2012 today. Being inspired by a man who became positive when HIV was a death sentence. Nearing 70, still strong. For a few days, the world’s media focused on HIV, with big speakers like Hilary Clinton drawing attention to the conference and activists finding themselves in demand for interviews. Although media coverage isn’t an end in itself, it does present an opportunity to increase understanding and awareness of the issues and to challenge the stigma attached to HIV with a mainstream audience. Personally, I also left the conference with a renewed interest in the issues affecting drug users and sex workers. US immigration law denies entry to people who are identified as current or previous drug users or sex workers and many people were unable to attend the conference this year as a result. But, the issues were well represented in the global village and through a parallel conference held in Kolkata. This is a key point in the history of the HIV epidemic – as has been said many times before, we now have the tool to end
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We can end AIDS march
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Behind the scenes, organising the marches The Sex Workers’ Freedom Festival in Kolkata.
AIDS. An important aspect of the conference was people finding their voices, making demands on policy makers and taking the action needed for the epidemic to an end.
If you would like to get involved, as a delegate, a speaker or a volunteer, keep an eye on the AIDS 2014 website and more details will be released nearer the time. There is some support available in the form of scholarships, for people who would otherwise find it difficult to attend – over 800 attendees in Washington had received scholarships – and the conference is heavily reliant on support from volunteers.
Image by Luca Stevenson, Sex Worker Open University
Activists being interviewed
The next International AIDS Conference will be held in July 2014 in Melbourne, Australia and the conference organisers are already hard at work planning it. It is organised by the International AIDS Society, in partnership with the Global Network of People Living with HIV (GNP+), the International Council of AIDS Service Organizations (ICASO), the International Community of Women with HIV/AIDS (ICW), the United Nations Joint Programme on HIV/AIDS (UNAIDS) and other local partners.
As the conference draws nearer, you’ll be able to find out more at www.aids2014.org. Unless otherwise specified, all images are copyright Greta Hughson/aidsmap.com
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@StephanieGlover Inspired by the work of individuals, governments, and community orgs coming together for an AIDS free generation. #AIDS2012 w w w. p o s i t i v e l y u k . o r g
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Debbie McMillan’s Plenary: Making Waves: The Changing Tide of HIV and Drug Use Debbie McMillan of Transgender Health Empowerment delivered the following speech as a plenary address at AIDS 2012 on Thursday, July 26.
Who am I? Like most people, the sum of who I am is much more than my individual traits. However, there are facts that categorize me as “high risk” in the HIV world: I’m African American; I’m a transgender woman; I used to be a drug user; I used to be a sex worker; I used to be incarcerated. For 20 years I lived a life that virtually guaranteed I would contract HIV. But that shouldn’t mean that I was then, or am now, irrelevant. That would gravely underestimate me and miss an important opportunity to address HIV. I’m here today because I represent people at the heart of the AIDS crisis – a small group with a big HIV problem. If this is true, then it should be equally true that the solution lies with people like me. When people like me are included in the design of policy and programming, these programs are much more successful. […] The broad outlines of my story are not uncommon: I went to the street alone at 14. […] I became a commercial sex worker because I believed it was the only occupation available to me. I got high to dull the reality of what I had to do to survive that life. Crack smokers – my drug of choice when I was using – are three times more likely to be infected with HIV than nonsmokers. For many years injection drug use directly and
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© IAS/Steve Shapiro - Commercialimage.net
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indirectly accounted for more than one-third of AIDS cases in the United States. […] Research consistently demonstrates the effectiveness of syringe exchange in preventing transmission. But syringe exchange programs are prohibited from receiving federal funds in the United States. […] Drug use and sex work go together like power and money [and] I can tell you that out there infection is considered inevitable. […] And in [the US], drug use and sex work are themselves crimes. No matter how risky your life is on the outside, being in prison is worse. […] I was sent to a men’s prison – and housed in the wing with the murderers and rapists. I’m sure you can guess what happened. Nothing is gained by describing the details. I could have gotten HIV anywhere, but I’m convinced I got it in prison. […] The United States incarcerates more of its citizens for drug use than any other country on the planet. This ensures that we get multiple public health problems instead of just one. […] If you really look hard at drug addiction, you’ll see that it’s just a symptom. For me, it was a product of the stigma I experienced for most of my life as a transgender woman, a chick with a dick. […] Data isn’t uniformly collected for the transgender population so we don’t know how many of us in the US are infected with HIV. What data there is indicates high rates. My mother was an IV drug user and a sex worker. She left me with my grandmother. For some my mother represents everything that’s wrong with America; someone who could have risen above her circumstances if she’d stayed in school, but who chose a life of drugs and prostitution instead. For others she represents the failure of society to take care of the most vulnerable among us. To me, my mother was the only person who ever completely accepted me just as I am. […] At some point, my mother was infected with HIV. […] During one of my incarcerations for solicitation, my mother died of complications of AIDS. I had to view my mother’s body alone… in shackles and handcuffs.
[…] I got into the Bridge Back recovery program, which was specifically for HIV positive LGBT people. The key to its success was that they accepted me one hundred percent. […] I came to the organization called Transgender Health Empowerment, the only agency in Washington DC that provides services specifically for transgender people. Through them I found supportive housing. I got a cosmetology license but my heart was with the family I found on the street. So I got a job with HIPS. And then three years later I started working at Transgender Health Empowerment as a specialist in Comprehensive Risk Counseling. Our primary goal is to help drug users, sex workers, and transgender people get connected to the social services they need to prevent or live with HIV.
[...] And in [the US], drug use and sex work are themselves crimes. Now I’m Debbie in every sense. But the Bridge Back program is gone. It died of lack of funding. The lesson I want to impart today is that if you include people like me in your program design, you get solutions like Bridge Back, solutions that work. […] If you include people like me in your advocacy efforts you get powerful proponents for syringe exchange funding and changes to drug laws. […] As you know, the United States, while generous with HIV funding around the world, has policies that make it extraordinarily difficult for current or former sex workers or drug users to enter the country. […] I, like the IAS, applaud President Obama for lifting the ban that prevented people living with HIV from entering the US – and I’ll tell him that if I get to meet him. However, it would be far more productive for our government to eliminate policies that are moral judgments and have nothing to do with good public health. The U.S. entry ban sends the message that people who have a history of drug use or sex work are not actually included in this dialogue. This is a serious setback in the fight against AIDS. In fact, peer driven programs often prove the most successful in combating the epidemic in both the sex work and drug user groups. Over and over, my peers and I have proven our value. Don’t underestimate our knowledge and our potential for contribution. […] If we are truly Turning the Tide Together, then transgender people, sex workers, and drug users – people like me – should be part of the solution. To read Debbie’s speech in full visit: http://www. hivhumanrightsnow.org/blog/debbie-mcmillans-plenaryspeech-making-waves-the-changing-tide-of-hiv-and-druguse/
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© IAS/Steve Shapiro - Commercialimage.net
Two months later, I was diagnosed with HIV. I was 20 years old and convinced I was going to die. So there I was; a stigma on top of a stigma.
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Moving from Fear to Empowerment: HIV and the Criminal Law FionaP, who has been involved in the global response to HIV for 17 years, gives feedback on HIV and criminalisation at the International AIDS conference.
A key topic at the International AIDS Conference in Washington DC was the global trend towards prosecuting people living with HIV for HIV non-disclosure, potential or perceived exposure and transmission. Discussions looked at whether prosecutions are based on evidence or on ideology, the impact on people living with HIV and the negative impact such laws can have on public health and human rights. A number of speakers explained the complexity of the legal situation. The law and prosecutorial guidelines differ in different countries (for example, laws in England and Wales are different to those in Scotland). Some countries punish exposure even without transmission of HIV, punish transmission even if the person wears a condom, or punish transmission even if the person has an undetectable viral load and prosecute despite the medical near-impossibility of determining who transmitted to whom. In some countries people living with HIV are punished for spitting while in others women are prosecuted for vertical transmission to their babies. Sentencing varies from country to country, and there are examples of people living with HIV being jailed for 25 years; in many cases, if found guilty, you are placed on a sex offenders list, sometimes for life. As one speaker said: ‘Just as we are told HIV is being normalised, we are being criminalised’. The US has a particularly high rate of prosecution for people living with HIV. We heard stories from people living with HIV in the US who have been prosecuted:
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Monique was in the US Army and discovered she had acquired HIV when she was pregnant. She went on to have a relationship in which she did not disclose her status, but did use a condom. Somehow the Army found out about the relationship, and she was arrested and charged. Fortunately, her partner took responsibility for his own actions and confirmed she had asked him to use a condom. She wasn’t convicted, but was still discharged from the Army.
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Nick Rhoades used a condom, had an undetectable viral load and did not transmit HIV but was sentenced to 25 years by
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Concerns were raised about existing laws doing more harm than good in terms of public health and human rights. Presenters spoke of the impact of prosecuting people living with HIV, with people being scared to take an HIV test on the basis that if they don’t know their status, they can’t be prosecuted, resulting in a lack of treatment access as well as a lack of trust in health professionals, who it is feared may breach confidentiality and disclose the patient’s status to a partner. One speaker was pushed to press charges shortly after being diagnosed. She believes it was not the best way to proceed as she was not given time to think or to speak face-to-face with her ex-partner. In addition, the negative media reporting (using terms like ‘AIDS Assassin’, ‘HIV time bomb’, ‘dangerous’ and ‘evil’) surrounding trials of this kind increases stigma against people living with HIV and makes some withdraw and become isolated. It can also lead to reduced disclosure. “I refuse to be judged by this disease for I am much, much more than the disease. So, I keep this a secret. As a teacher, I could lose my job. Not disclosing could get me jail time. Therefore, I no longer date. It’s tough being the leper of the 21st century.” In some US states women who go for an HIV test have to sign statements saying that they will not become pregnant, despite interventions that substantially reduce the chance of transmitting the virus to their babies. Brook Kelly, a HIV human rights attorney for the US Positive Women’s Network highlighted that “While the laws were supposedly designed to protect women, they’ve been used as tools of coercion to force women to stay in abusive relationships with partners threatening to report them to the police if they leave.” Against this background of injustice and fear, incredible work is being done by civil society globally, particularly by members of The HIV Justice Network. Laws are being challenged, justice systems engaged with and communities are being educated about criminal prosecutions. In the UK, civil society has moved from a position of fear to one of empowerment and action through working together with prosecutorial authorities to develop policy and guidance, as well as providing support, information and resources for people living with HIV. Earlier this year the Oslo Declaration (http://www.hivjustice. net/oslo) was launched as “a roadmap for policymakers and criminal justice system actors to ensure a linked, cohesive, evidence-informed approach to produce a restrained, proportionate and appropriate use of the criminal law, if any, to cases of HIV non-disclosure, potential exposure and nonintentional transmission.” I came away realising that we need to know our rights and responsibilities. If charged, we have a right to be treated fairly by judicial systems whose representatives are up to date with
advances in science, understand the complexities of living with HIV and do not stigmatise us. Our representatives in court must be knowledgeable – people in this country have gone to prison because they have been incorrectly advised to plead guilty. Most importantly, if you are charged or thinking of making charges against someone, do seek advice first from organisations like THT and Positively UK.
“I refuse to be judged by this disease for I am much, much more than the disease. So, I keep this a secret. As a teacher, I could lose my job. Not disclosing could get me jail time. Therefore, I no longer date. It’s tough being the leper of the 21st century.” This is a short feedback article and I cannot hope to cover everything in it, and this area is constantly evolving. Please do keep up to date and educate yourselves on this important topic. You can find out more about what the current situation is in the UK here: My HIV/Telling People/Law http://www.tht.org.uk/myhiv/Telling-people/Law Prosecutions for HIV transmission: A Guide for People Living with HIV in England and Wales by NAT & THT: http://www.nat.org.uk/Media%20library/Files/ Policy/2010/NAT-THT%20Guide%20re%20Prosecutions%20 DOWNLOAD%20UPDATE%20MAY2010.pdf If you are in a situation where you might be affected by criminalisation or are thinking about making charges, please do call THT Direct between 10am and 8pm from Monday to Friday on 0808 802 1221 or speak to someone at Positively UK. For more about The HIV Justice Network, visit their website: http://www.hivjustice.net And the Sero Project http://seroproject.com For more general information, please visit these websites: ‘10 Reasons Why Criminalization of HIV Exposure or Transmission Harms Women’ – http://www.athenanetwork. org/index.php?id=39 Doing HIV Justice video – http://vimeo.com/45843618 IAC2012 press conference – http://vimeo.com/46774647
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an Iowa court. Later reduced to a year served, he now must register as a sex offender for the rest of his life.
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Living Conference, 2012 Maureen Kiwanuka, the youth peer mentor at Positively UK, talks about her experience of the Living Conference, the Pre-Conference to the International AIDS conference. As the youth representative for Positively UK at ‘Living Conference, 2012’, I felt a strong sense of responsibility to young people living with HIV back home. I was in the presence of many older, experienced professionals so I took the stance that I would learn from these individuals and, on my return to the UK, share what I had discovered.
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While waiting for the conference to start I was greeted by a Church leader from Senegal who told me about the hard battle he faced in Africa living with HIV. He said that, despite it being difficult, it had ultimately made him into a stronger person and encouraged him to travel to Washington for the conference. I left the conversation inspired by such a wise, articulate man and hopeful for all those living with HIV. A motivating start!
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Day One included a speech by Kate Thomson who talked about the symbolic importance of the conference being held in the U.S., commenting that ‘‘it is thanks to the persistent advocacy […] from people within the U.S. and elsewhere that the ban on entry for people living with HIV has been lifted’’. But she also expressed disappointment that drug users and sex workers were not allowed into the country, saying that ‘‘it is our responsibility to advocate with and for them […] and, over the coming days, we must think creatively and boldly.’’ Cornelius Baker also challenged us to be creative and ultimately ‘‘turn the tide’’ stating that “addressing the HIV epidemic is more than addressing cells, it’s about addressing peoples lives...” There were also ‘break-out’ sessions where we were challenged to take a specific topic, identify the problem within it and construct potential solutions. I enjoyed these very much as often these solutions where very optimistic and I admired the
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many passionate responses. As a youth peer mentor I have witnessed, first hand, the effectiveness of psychosocial support and this was a major topic within the sessions. We identified a growing need for more people to support HIV services and we decided that, ‘‘adherence increases when people have support around them’’ and ‘‘HIV is more than a health issue. It should be dealt with as a social aspect’’. On Day Two we collected information and ideas in order to could construct a document for those in power to read. We spent the morning in more break out sessions and I chose to be part of the group discussing Religion and HIV and Funding. I was interested in this, in part, because I am a Christian, but some of the stories discussed were painful to hear. Many people die due to religious leaders delivering misinformed messages, while there are others who have been rejected from their religious groups due to their HIV status and sexual orientation. It also broke my heart to hear that countries such as Africa, Romania, Sweden and even the USA are still facing huge hardships when it comes to the treatment and funding of HIV while 46 countries worldwide still deny ‘our movement’. Human rights is not always put into consideration for people living with HIV, and the basic things that we in the UK take for granted such as free health care are still major issues elsewhere. The Living conference brought the world’s issues into perspective, identifying problems that I hadn’t previously anticipated. Other issues that particularly caught my attention in the course of this week were treatment as prevention, human rights and the education of sexual health delivered to young people. Ultimately it was agreed that, for change to happen, people living with HIV need to get involved and speak up to those in influential positions and that more must be done to address the stigma surrounding HIV. Maureen Kiwanuka
World AIDS Day Positively UK are taking part in the 5K Red Run organised by Positive East on the 25th of November. Support us by sponsoring our staff and volunteer runners at positivelyuk.org/5k_Red_Run.php
Or simply text POSU01 to 70070 followed by £1, £3 or £5
www.positivelyuk.org
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Watch out for us at tube stations on the 30th November and 1st December and pick up UNDERGROUND a red ribbon to show your support.
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The Power of Activism Ben Osborn, who worked on the 2011 HOPE not hate campaign against racist groups including the BNP and EDL and who now works for the trade union UCU, discusses the roots of activism and what activism means today. I would argue that activism is a defining feature of our time. It shows an awareness of what the systems around you are, a sense that aspects of them are unstable, and a will to change them. It’s telling that one of the most potent descriptions of modern society is the Communist Manifesto. Its clarity is striking (whether or not you are a Marxist). Marx showed that the economics and culture of capitalism meant that people now lived in a time of constant change, and that they had, for the first time, the potential to recognise their own power. Marx said ‘you have nothing to lose but your chains’ by gaining this new awareness.
In the 2010 General Election, Conservative leader David Cameron’s buzzword was the ‘Big Society.’ He wanted to change the image of his party, who will be forever associated with Thatcher’s claim that ‘there is no such thing as society.’ But in practice, for the Coalition government he would lead, it meant cutting government spending and increasing privatisation in services, from healthcare and education to policing and roads.
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HIV has a long relationship with activism. Writing for AIDSmap last year, Keith Alcorn said that ‘the responses of the communities affected, and of the medical professionals who cared for the first people diagnosed with AIDS, set the tone for the global response to AIDS for the next 30 years... emphasising human rights, compassion, solidarity, activism and generosity.’ Alcorn gave the example of New York activists writing the first safer sex advice, ‘How to Have Sex in an Epidemic’, in 1983. Activism has a long and diverse history, taking many forms and addressing many issues. Its role today should not be overlooked.
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Henry David Thoreau was writing around the same time as Marx (though in a very different context). His essay ‘Civil Disobedience’ – an important term in activism – explained that he would not pay taxes because his government was complicit in slavery. His overall point, that conscience is more important than law, and that people should defy and protest against laws that go against their morality, is central to modern activism: ‘Unjust laws exist: shall we be content to obey them… or shall we transgress them at once?’ Thoreau defined one aspect of activism: refusing to take part in something you disagree with, and demanding a change. A great example of civil disobedience, when an individual was brave enough to stand up against an unjust society, is the famous case of Rosa Parks refusing to give up her seat to a white passenger in 1955. Following Parks’ arrest, the AfricanImage copyright HOPE not hate www.hopenothate.org.u
Politicians rarely use the term in 2012; opinion polls show that people are still uncertain about what it actually means. But it seems a different kind of big society does exist in the UK in 2012: every time a library is threatened with closure, every time racist groups plan to march, every time an environmentdestroying powerplant is opened, every time a corporation is revealed to be dodging taxes, every time a policy is proposed that threatens the welfare state, communities stand up and make themselves known. This big society is made up of activists: people taking action, protesting against some ideas, promoting others.
His idea was considered ‘revolutionary’ and ‘radical’, but activism itself – which isn’t necessarily either of those things – relies on the same notion: that society isn’t stuck in one way of being, and that it can and should be changed by better ideas.
Speaking at Goldsmiths College last month, activist Lindsay German from Coalition of Resistance noted that the most worrying tactic was ‘divide and rule’: trying to increase divisions and prevent unity among activists. ‘We have to reject the idea,’ she said, ‘that the person next door is to blame.’ In fact, activists come from many different sectors of society, of all ages and backgrounds.
Image copyright HOPE not hate www.hopenothate.org.u
While activists today can take inspiration from great individuals, they should never forget that united communities are extraordinarily strong. The HOPE not hate anti-racism campaign, which has helped oust the fascist British National Party from councils all over the country, has shown this. ‘People working tirelessly in local communities are often overlooked,’ writes Nick Lowles, founder of the campaign, ‘but it is vital that they are not. Victory is won by slow community work… rather than seeming to parachute into areas or lecturing [people] about how to think or behave.’ So activism is not just about dramatic moments and inspirational individuals, it is about building strong communities that can stand up to oppression and prejudice, and demand an alternative.
American community in Montgomery responded by boycotting all public transport. Of course, this was not just about segregated seating on buses, but was drawing attention to a culture of prejudice, inequality and injustice.
and g n lo a s a h Activism y, taking many diverse histor dressing many forms and ad today should issues. Its roleked. not be overloo
This highlights some important points for understanding activism now, because it shows that one person’s willingness to take action can become an unstoppable force – when backed up by a sustained movement and a united community.
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The same basic ideas are at the heart of activism today, but the last few years have shown how much methods have changed. The 2010 ‘Arab Spring’, for example, showed activism in a new light. Using social networking sites such as Facebook and Twitter, activists were able to organise actions, develop communities and spread awareness of the struggle they were engaged in. The watching world saw that online tools, combined with traditional forms of protest, could bring about huge and even revolutionary change. When the UK’s coalition government formed in 2010 they agreed on a programme of ‘austerity measures’. They were supposed to reduce the deficit and help move the economy out of recession (though in fact they have had the opposite effect). This took the form of massive cuts to funding for public services. The coalition use ‘Shock and Awe’ tactics, hitting the nation with an onslaught of cuts of overwhelming breadth and aggression while giving the police special powers to repress protests against them.
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Going Viral: Using Social Media for HIV Activism HIV blogger and activist Silvia Petretti talks about the potential of blogging as a modern, powerful form of activism and takes us through her favourite HIV blogs.
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2012 wasn’t my first time at an International AIDS Conference, but it was the first time that I had the honour of being invited as a Media representative. This meant I had access to the media centre the press releases and special press conferences. I was also invited to run a skill-building workshop called ‘Speaking Up…Going Viral with Social Media’ on using social media, particularly blogging, to create social change
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I believe that stigma will end when we are visible and our voices are heard so, in 2008, I started my blog, ‘Speaking Up – The Diary of an HIV Positive Activist’ (www.hivpolicyspeakup.wordpress.com). At the time I was feeling very frustrated about the lack of female voices in the debate around policy in HIV so I decided to argue my point. In my first blog post I made a case that the 2008 National Aids Trust report didn’t include enough input from women, at the end of the post I wrote; ‘‘how do you feel about the report? Do you feel it reflects your challenges and experiences? Speak up! Or others will do it for you.’’ I decided to keep it going as a resource people who may want to know more about being an HIV activist and to show that anybody could be an activist. I believe that the personal is political and that just by
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telling our stories, and lifting the burden of secrecy around HIV we are actually doing a lot to create a world free of stigma, a world where we can share power with others and where our dignity and participation are celebrated. ‘Speaking Up…Going Viral with Social Media’ was organised by the beautiful Sonia Rastogi from the US based Positive Women’s Network and I shared the stage with two amazing bloggers: Maria Meja and Mark King. Maria writes a moving blog, which is hosted on the ‘Girl Like Me’ portal (www.girllikeme.org), where women of all ages can share their stories and promote understanding of HIV through online storytelling. In her blog she talks openly about her life: being diagnosed at 17, growing up in an abusive family, running away to live in the street and joining gangs. She has become an HIV social networks celebrity, her Facebook page has reached the maximum number of friends and thousands of people follow her blog. Mark King, another blogger on the speaking up panel, is an HIV positive Gay American man and a recovering addict. He has been living with HIV since 1985. He has by far the best titled blog in the
I’d also recommend a particularly moving blog post on ‘Girl Like Me’ is ‘In Memory of Cicely Bolden’ by Michelle Anderson who was the first openly HIV positive woman to win Miss Plus America. After disclosing her HIV status, Cicely was tragically murdered by her partner in September 2012. Michelle uses this blog as a call for positive women not to react to Cicely’s death with fear of disclose, but to continue share stories. She writes, “Once we have done our best, shared our stories and begin to live our lives outside of our diagnosis, we can all stand in solidarity and say, “HIV positive women are free at last!” Free from shame, guilt, stigma and blame. We are free to be the person we were born to be!”
(www.ukpositivelad.com) by Sam, a twenty something HIV positive gay man who started his blog just a few weeks after his diagnosis as a coping mechanism and a source of connection and support. It is an informative mix of personal pieces (subject matter has so far has included suicide, being stood up on a date and Cher), related news stories and advice on getting support. The result is frank, personable and entertaining. The work of HIV blogger is important. We produce accessible, accurate information, we help dispel blurred and distorted ideas about HIV, we have a sense of humour and we ensure that we are visible and our voices are heard. So why don’t you give blogging a try?
Finally, I would like to recommend another blog UKPositiveLAD
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world of HIV: ‘My Fabulous Disease’ (www.marksking.com) which, in Mark’s words ‘‘presents glimpses of my life with HIV and assorted other challenges, told with as much honesty as I can muster and often with the strongest medicine in my arsenal: a sense of humour.’’ It is mainly a video blog and if you want to know more about the conference he has done a hilarious reportage of it. Each starts with the words, ‘‘we all have the same condition – it’s called LIFE!’’. One to watch is ‘Holiday Spectacular’ where he goes back to Louisiana and interviews his family about HIV, with funny and moving results. The video of his drag queen alter ego, Anita Mann battling herself in a locked TV set is completely hilarious; a delightful and clever act.
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Stand Tall, Get Snapped: 30 HIV+ People The inspiration for this project came directly from my experience of taking PEP (Post Exposure Prophylaxis) after exposure to the HIV virus, following impulsive unprotected sex with a partner who I knew was HIV+. The medication had severe and very unpleasant side effects, which aroused intense feeling and prompted on my part, as to what it must be like to actually have a positive HIV diagnosis. I was determined to undertake this project with the intention to expose the still widely held misconception, that HIV is largely restricted to gay men and people of black African origin. In addition to that I wanted to offer affected individuals a unique opportunity to share their experiences by being included in this photographic exhibition. This year marks the 30th anniversary since Terrence Higgins, the
Amanda, 42 yrs old 4 yrs living HIV+ Glasgow
first man to die of AIDS in the UK, was officially recognised by the NHS and it is also the recognition of HIV and AIDS as an epidemic by the American Medical Authority. Over the past year I have travelled from Glasgow to Bournemouth, photographing 30 people living with HIV, young to old, female and male, nonwhite and white, straight and gay. The most recently diagnosed was 3 months ago and the longest, 28 years living with HIV.
challenging, some sad, but surprisingly full of hope and optimism for life. I have also learnt that life can be very difficult sometimes, yet each of these 30 people have an amazingly positive approach to life. This exhibition is my take on 30 years of HIV. Edo Zollo http://www.edlondonphotography. co.uk – watch the video tweet: @STGTproject
I visited them in their home locations across the UK, photographing each in their chosen settings, which illustrate their individual stories. It has been a positive life-changing experience for me, and I have met some amazing people. My life has been touched by their personal stories, some
My HIV positive diagnosis was a relief. Finally I knew what was wrong with me, and was looking forward to feeling better. The following weeks and months were spent attending clinic appointments, and meeting positive women for advice and support.
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During this time I spent a lot of time at Glasgow Botanic Gardens. I found that being surrounded by plants and not people, helped me to accept my HIV.
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It was here that I decided on the name Betsy for my little visitor. I thought that as we both had to share the same body for the foreseeable future, I needed to name her. I am in a much happier place now because of my journey with Betsy, and am proud to be positive, and to stand tall, and be snapped.
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Tony, 63 yrs old 27 years HIV+ London
1975 I met my long term partner, Robert. 1985 In April I tested positive after a routine sexual health check. I was aged 36, the same age my grandfather died in battle. I was advised I’d live five years max but most likely two. I was told not to inform my employer, GP, friends or family.
1986
Life continues, friends/ former lovers become ill – some die tragically. I seriously doubted I would even reach 40. I was very concerned my loving parents would outlive me and I would be unable to support them.
1991
My father drowned at Hove beach doing what he loved.
1994 My Mother died. 1999 My 50th birthday, I retired from City Corp after 20 years.
2001 Three new planning consultancies and my professional life continues.
2005 Dec 23rd – the date of my Civil Partnership at Chelsea Registry Office.
2006 I had declined medication until I contracted HIV related viral encephalitis and was hospitalised for two months... I was wheelchair bound at first, then Mr Zimmer… Weight: 6st.
2009 On the 11th of January, three days before my 2011
Now fully mobile and doing well on combination therapy.
2012
Blood test: Viral load undetectable, CD4 count 420 X 106/L, Weight: 10st. February 13th marked my first encounter with Edo Zollo, and this great project.
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60th birthday, I got 1st runner up in ‘Rear of the Year’ contest. A great morale boost!
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the career in theatre that I had only just begun would end. But I didn’t become ill and I didn’t die. I had a good run for many years. However, in 1994 things started to go downhill, I had memory lapses and an episode of amnesia which landed me in hospital. I was given an AIDS diagnosis and six months to live. From then on, I lived each day as if it were my last. There have been some very dark moments, but I have never ceased to be amazed as goals that I set were reached and passed. At first it was just a matter of getting through the day, and then I aimed higher.
Maurice, 71 yrs old 28 years HIV+ Stoke on Trent
When I was told that I was HIV positive in 1984, I experienced a mixed bag of emotions. At that time there were no treatments. I feared that I would quickly become ill and die and was angry that
Stand Tall, G
et Snapped:
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During 2004 I felt unwell with unpleasant symptoms, several ulcers appeared on my body and I was referred to the GU clinic and diagnosed as being HIV positive.
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Initially terror, shock, self-pity and despair overwhelmed me but these feelings changed to anger and determination to conquer this. I surfed the internet, finding out information and learning all I could do to keep myself as well as possible. Medication was prescribed very quickly, although I had a fear of this, with the support of a local group in St. Albans I found the courage and strength to commence with this treatment.
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As the years have passed I have learnt to live with HIV. My health is good, I have a positive attitude and I seldom give my status any thought. I have become actively involved with the support group and do all I can to help. I chose St. Albans as it means a lot me and was where I came for my support. HIV is not to be feared.
Now, I am a graduate, a bit of a Globe trotter, an active trustee of several charities and busier than ever.
30 HIV+ Pe
Rachel, 47 yrs old 8 years HIV+ St. Albans
I am truly grateful for the blessings I’ve received and look forward to fresh challenges in the future.
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Max, 24 yrs old 3 months HIV+ Brighton I was diagnosed on the 3rd April 2012 I didn’t expect a positive result so it felt like I had been smacked across the face. I went into work only to reveal to a friend and colleague moments later of my new status. I had to tell someone and unburden myself right away. In the week after the result I told my family, work and a few friends, everyone had varying degrees of a negative reaction but were all based on their concern for me. In regards to my mum I felt a lot of guilt, she was hysterical. I already knew the death sentence days were over which was an immediate and continued source or comfort for my loved ones and myself. It is still early days and I’m unsure of any obstacles that might come up but I’m feeling I will be able to confront them if they do.
‘Stand Tall, Get Snapped’ will launch at the Reading Room gallery (http:// www.readingroom.com/gallery) on Frith Street, Soho Square, from the 22nd of November till the 4th of January. The project will also be visiting the Nexus Art Café (http://nexusartcafe. com) in Manchester for all of March 2013 and The Virginia Gallery (http:// thevirginiagallery.co.uk) Glasgow for the last two weeks of June and the first two weeks of July. (Free Entry)
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Now, looking back, those minutes before my diagnosis, standing in the cold night, were my last moments thinking I was negative and, while I’m accepting my status, I find comfort thinking back to that time.
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‘LAID BARE’ When I was diagnosed in 2005 I was deeply hurting inside but had to carry on with ‘preparing’ for my future. I was deeply shocked and angry that this had happened to me. I wore a thick blanket of makeup to hide my true feelings and hid myself away to wallow in my own self pity. Never would I have expected to be presented here before you 7 years later, laid bare! I have learnt to love myself for who I am and what I am, not what I have! Here I am photographed in public with no makeup, no pretence and no fear! Laid bare for all to see, for people to judge, but most of all for my community.
Julie, 50 yrs old
But I am who I am and what I am and I love that, my family love that and my friends love that… and everyone else has a choice!
7 yrs HIV+ Leicester
Stand Tall, G
et Snapped:
30 HIV+ Pe
Mikey, 24 yrs old 2 years HIV+ London
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March 31st 2010: being diagnosed was actually a big shocker. Normally I’d go and get tested regularly for that purpose, but this time it was to check out a mystery lump in my groin.
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“That lump is benign, it’ll go away, but you are HIV positive.” I just said “Erm, okay.” The next day it hit me, I panicked a bit at work and was sent home, over time I attended my appointments and was generally good, if not a bit self destructive. I reunited with a previous partner, Colin, and eventually entered a civil partnership with him. Being
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diagnosed positive really stops you from the stereotypical 24 year old gay lifestyle, my workplace has been really good with it and I’m so grateful for that.
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Disclosing as a Form of Activism Dan Hartland, Founding Director of Saving Lives, talks about how people living with HIV talking openly about their status can help diminish the fear of stigma felt amongst many. This will, in turn, encourage more people to get tested, and ultimately save lives.
Saving Lives is an HIV awareness-raising charity which we devised with a simple belief: HIV testing is crucial in saving and improving the lives of those living with HIV. In the 1980s, the only thing a mass media campaign could find to say about HIV was: ‘Don’t die of ignorance.’ Now, with excellent drug regimes and fantastic support networks, we can say that awareness can set you free as treatment can offer a long and full life. But a charity like ours is only as strong as the positive voices. We rely on advocates who are living with HIV to help us devise our messages and communicate the realities of today’s HIV-positive people. We’ve benefited from the input of some fantastic individuals, who have featured on our website, talked about the importance HIV testing on the radio and appeared in television coverage of our campaigns. What they have said has been brave, eloquent, passionate and inspiring. But it has also been, more than occasionally, delivered on the condition of anonymity as advocates often request that photographs of them, and sometimes even their voice, do not appear anywhere in the campaign materials.
Saving Live’s latest campaign sees Olympic athletes and Premiership footballers endorsing HIV testing in the UK for the first time. We hope this will have a real impact, not just on the rates of early diagnosis but on the tenor of the conversation surrounding HIV. And, as HIV-positive people speak out, we have faith it will become ever easier for more people to feel free to follow suit. Here are four personal stories from Saving Lives and Positively UK advocates in which they share their own experiences of disclosing or talk about their HIV publicly for the first time. We hope these stories will further encourage an openness and normalisation of the discussion of HIV, and, in turn, inspire you to get tested yourself or to consider your own disclosure to family, friends and colleagues.
We respect these decisions, and we are so grateful for every bit of effort made in support of our work, but it also saddens us that it is still so difficult for people living with HIV to be open and honest about their status. Society has a long way to go. Stigma still exists and is a key factor in dissuading people from taking an HIV test. One in four people with HIV in the UK are unaware of their status as a result of this. This is why normalising the way we talk about HIV is very important.
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It is naïve, of course, to imagine all prejudice can be eradicated – but Saving Lives are committed to ensuring it is much less pervasive, and entirely unacceptable in the public eye. Disclosure has a huge role to play in achieving this aim. It is precisely because disclosing is still such a difficult thing to do that it is such an important move to make. Only openness, solidarity and public advocacy may soothe the fear of stigma which is still felt amongst many.
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Peter Saving Lives
Peter
I have been undergoing treatment for HIV for some time but I only decided to ’come out’ recently. I did this because I’ve been through so much that could well have been avoided if awareness about HIV was better. By speaking openly about my experience I hope I can contribute to the creation of a world where stories like mine won’t be as common. I probably became HIV positive in 2003 while in a stable, monogamous relationship. My partner suffered from persistent coughs and colds, as well as itchiness and a few other symptoms that ten different GPs in total couldn’t explain. She had X-rays and was referred for bone marrow investigations but again and again, there was no diagnosis. It was only through our own research that we realised my partner should be tested for HIV. I was frustrated that, until this point, no doctor had suggested it. My partner
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Chris
Early in 1986 I was diagnosed with HIV and told that I had just 18 months to live. I’d moved up to London in ‘79 and was the new young guy around town having fun. A lot of my close friends died within a few years of being diagnosed. I was emotionally very vulnerable so I decided to tell a few people at my church. One of those people was absolutely superb and, to this day, have supported me. But, sadly, another of the people had other ideas – and talked to the papers. I found myself in The Sun, described as an ‘AIDS-carrier organist’ and photographers invaded my church. At
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tested positive with a CD4 count of 28. She could so easily have died because of all those missed opportunities for testing. I tested positive too with a healthier CD4 count of 450. But there was an abnormality with my liver function and I was diagnosed with cancer of the liver and recently doctors discovered a rare complication with my liver transplant: half the blood flow to my liver stopped, and half of my liver died. I’m now awaiting a liver transplant. Nevertheless, I’m coping. I don’t want other people to come as close to death just because of the widespread reluctancy to test, amongst the public and, from my experience, doctors. There is a stigma around HIV that needs to be countered. This is why I’m speaking out – disclosure, simply talking about your own HIV, can help not just you, but others.
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the time it was worst than getting the virus, I lost my job, my friends at my church shunned me and no one would shake hands with me. At that time disclosure was a very difficult thing to do. Thankfully, by the end of the ‘90s perceptions of HIV improved and it became more accepted. But nowadays I worry it’s becoming much more secretive again. HIV just needs to be talked about more. It needs to become part of everyday life – we can’t hide away from it because it exists. Disclosure still requires great bravery but it has a big part to play in making things better.
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Angelina Positively UK Disclosing hasn’t been a bad experience for me as every family member I have told has accepted me has reacted in a very caring way. However, the most anxious I have felt about disclosing was telling my young daughter, as she is the most important person in my life. I thought about it for a long time, and did my best to prepare. One day I was on the phone to a friend who told me she had disclosed to her 12 and 13 year olds and I decided to tell my daughter there and then. She was eight and I felt it was only a matter of time before she Googled my name and found out from the various articles and interviews I have done in which I talk openly about my HIV. So I told her and I asked her if she had suspected anything. ‘No mummy she
said, you go to work, you do people’s hair…’ As far as she was concerned, I was just a regular mum. I explained to her that she was not positive because I took medication during pregnancy, had a caesarean section and did not breastfeed her. She was upset of course, but she also asked me why I hadn’t told her earlier and I just replied that I felt she wasn’t old enough. She has accepted me for who I am, our relationship hasn’t changed and I have always made it clear that she can ask me anything. We also go to Body and Soul where she can mix with children who are positive or have positive parents. I am now relatively open about my status. If I disclose to someone and they don’t like it then tough. HIV is just a virus, it does not define who I am.
Angelina
s
ie d u t S e s a C : Activism
Positively UK During my first year of my return to study I was having lunch with a fellow student who asked me what I did over the summer. When I said “I volunteer for an HIV charity” she was horrified to say the least and asked how I could work with “those” people. When I challenged her and asked what she meant she went on to describe how sick and feeble ‘‘they’’ looked – “just skin and bones” she said. These are the kind of moments I love! So, I gave her a task and told her to go home and Google people with cancer and people living with HIV and tell me what the differences were the next time we met. As I anticipated, she came back acknowledging that there was no difference at all. I then said to her
“So if I told you I had HIV, what would you say?” She looked at me and said, “Rubbish – you don’t have HIV. You look so well. You are just saying that to make me feel better.” I then asked her why I would want to do that and of what benefit it would be to me. She thought about it and agreed. Now, whenever she has a question, she asks me. Recently, her close relative was diagnosed in Africa and was being encouraged to seek the help of a “Sangoma” (witchdoctor) so she sought my help in how she could broach the seriousness of the consequences of not taking medical advice and treatment. The best part of it though is that she has now chosen to volunteer in an HIV organisation – now tell me what can be more empowering than that?
Bex
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Bex
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The New Activism Robert James looks at how the idea of being an ‘AIDS activist’ has changed in developed countries since the era of treatment and long life.
What is an HIV activist? Perhaps more than with any other disease, people with HIV have always been subject to stigma and discrimination, jeopardising their lives, rights and dignity. HIV activism grew out of the response to this and its philosophy was enshrined in ‘The Denver Principles’ in 1983. AIDS activism in the US had a reputation for being loud, brash and dramatic, and the UK also saw its fair share of protest and drama. At the start of the epidemic, AIDS and HIV activism attracted huge interest from writers, academics and journalists, but now, since effective ART became available to stop HIV developing into AIDS, almost the only activism studied is about expanding access to HIV treatment beyond the developed world. This change has been significant and profound. To find out about current treatment activism, as part of my PHD, I interviewed 15 HIV activists and 15 professionals, including doctors, nurses, commissioners and policy makers working in HIV. Many had been involved for over a decade but some for only the last few years; they included British and African people and men and women who were both gay and straight. Everyone agreed that HIV activism had changed from protest to involvement: activists who had started as outsiders, demanding the right to be involved in discussions about their treatment by medics and the state, were now talking with clinicians and government departments. In the words of one activist, “People won’t listen to you these days if you just rant and rave.”
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Dialogue and engagement
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The activists interviewed felt involvement and dialogue were effective approaches: “Engagement makes a difference, absolutely.” This has been shown in the development of guidance by the Crown Prosecution Service on prosecutions for HIV transmission, the shift in drug trials to include more women, and the development of equality laws to include everyone with HIV. Today the HIV voluntary sector is a group of professional organisations with a calm and considered working relationship with medics and the government but many started out using
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very different tactics. A good example of this is the relationship between activists and BHIVA, which – amongst other things – writes the clinical guidelines about managing HIV treatment and care. The first set of guidelines, produced in 19971, prompted angry protests from treatment activists, including the disruption of conferences, for not allowing positive people a voice in the writing of the guidelines and for over-cautious recommendations on the use of new treatments. Now, not only do people with HIV sit on the BHIVA Guideline writing committees, but a draft version is also made publicly available for patients, activists and other interested parties to comment on. BHIVA also have representatives chosen by UK-CAB and not by medics. Getting involved in treatment activism, patient involvement in the NHS, volunteering in - or even setting up - a community organisation means engaging with systems that all have their own structures and languages, whether relating to medicine, commissioning, management or law. This knowledge barrier can be intimidating, but those who overcome it become empowered by their deeper understanding to debate with professionals on a more equal basis. The change from protest to involvement has put greater emphasis on knowledge of where and how to get involved, which has become a common goal of conferences for people with HIV in the last few years. Patient involvement was a relatively new and unusual development in health care at the time the HIV epidemic started, and the success of partnership working between patients and doctors in HIV gave added impetus for it to become one of the primary goals of NHS policy.
“Everyone agr eed that HIV activism had from protest to involvement changed ” Patient groups
their primary focus is the clinic and care of people with HIV at their hospital.
Another important change since ART has been the formation of patient groups rather than community groups.
The internet, too, has enabled a migration of peer support to online, virtual communities such as PozFem and myHIV.org.uk.
From the 1980s onwards, a multitude of community-based HIV organisations appeared: some, such as the Terrence Higgins Trust in London and George House Trust in Manchester, were set up to do HIV prevention work and provide services to people with HIV and AIDS; others were self-help groups where people with HIV met to support each other. In London, Body Positive, Positively Women (now Positively UK) and later the UK Coalition formed as self-help groups and went on to become large organisations employing staff and providing services. Many local groups adopted the Body Positive name and attached the name of their town or area, such as Brighton Body Positive or Thames Valley Body Positive (now Thames Valley Positive Support).
In summary
Since his HIV diagnosis in the late 1980s, Robert James has, for much of his time, been involved in HIV groups and advocating for people with HIV. He has recently completed a PhD thesis looking at the history of HIV activism in the UK. He is planning to co-author a book on HIV activism and would like to contact people involved in HIV activism in the past. This is an edited version of an article by Robert James, which first appeared in issue 212 of NAM’s HIV Treatment Update, Summer 2012. For more information on NAM and HTU, or to subscribe to HTU, go to www.aidsmap.com. The illustration also first appeared in HTU
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Many smaller groups have since closed, partly as a result of funding cuts but also because needs changed with the arrival of ART. Community groups such as Positively UK and OPAM (the Organisation of Positive African Men) continue to exist but ART, and the fact that many people with HIV are now working, has led to a relocation of peer support from the community to the clinics. During the last ten years patients and staff at a number of clinics, particularly in London hospitals, have set up groups for people with HIV using those clinics. Although these groups are concerned with social issues affecting people with HIV,
The change that ART brought to people with HIV was extraordinarily dramatic in its impact on lifespan and quality of life. But it has changed activism too: angry, dramatic protest has mutated into a more subtle form. From being outside protesting about decisions made by other people and demanding to be let in, activists have now come inside.
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Let’s Talk... Engagement Around a year ago the Government gained a new mantra, “No Decision About Me, Without Me”, saying patients should share decision-making, know their options and have more control. It is important that you have a say in the issues that directly affect you, both in terms of your own treatment and in terms of healthcare policy in general. The direct involvement that this allows, and the knowledge that you can gain from it, can empower you to make your own decisions and know what is best for you. Being informed gives you a good grounding to know what needs to change and what you can do to make sure these changes happen. There are a range of networks, patient forums and organisations that can provide chances to engage.
Confidence and Knowledge Joining a group can seem daunting: the set-up may feel a bit formal at first and the language used is sometimes quite technical. But don’t be put off! Researching health and social care on the Internet or talking with a local HIV support charity will increase your confidence and knowledge. You can also join their service user forum, if they have one, which provides an opportunity to engage as part of a group and build your skills and confidence in a supportive environment.
Talking about your HIV
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HIV patient groups and specific HIV consultation events are places to discuss services for people living with HIV. Forums that seek wider patient and public participation such as the new Healthwatch will not necessarily have the same confidentiality. If you don’t feel confident talking about your experiences with HIV services in this context, that doesn’t prevent you from participating as you can still access other services such as GPs, dentists or social services. As there are a lot of changes in healthcare, and expectations that people with HIV will access more care away from their clinic, it’s important that you can have your say in all health and social services.
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“No Decision Positively UK Autumn 2012
Networks There are a number of HIV Networks out there. Many operate online, which could be a good place to start if you don’t feel ready to talk in a group. The National AIDS Trust (NAT) runs the HIV Activists Network. You don’t need to be loud, visible, and knowledgeable to be an activist, you just need a desire to bring about change and take part, whether through letter writing or talking face-to-face. The HIV Activists Network has been active in shaping the impact of the NHS reforms. Recently they asked members to write to Local Authorities, who will now have responsibility for health promotion, to ensure HIV prevention is a priority. They’ve also been working to improve HIV testing rates in TB clinics and to highlight the impact of benefit reform on people living with HIV. Other networks include Ffena, a network for Africans in the UK living with and affected by HIV. This helps people participate meaningfully in AHPN activities and the wider policy society (http://www.ahpn.org/ffena). The UK Community Advisory Board (UK-CAB) is one of the biggest networks, with over 440 members and 120 organisations. UK-CAB is a community network around HIV treatments and support and develops treatment advocates across the UK. It is responsible for the election of the community representative to the British HIV Association (BHIVA). The representative ensures that members’ views are fed back to BHIVA and that patient needs are understood and addressed in any guidelines and research they produce (http://www.ukcab.net/join/).
Statutory Bodies Until now the main bodies for public and patient engagement were the Local Involvement Networks, also known as LINKs. A new body called Healthwatch is replacing these, and there will be a local Healthwatch set up in your area. Healthwatch will independently influence your Local Authority (which will be responsible for social care and public health, including HIV prevention) and the new Clinical Commissioning Groups (responsible for healthcare and support). The Department of Health says Healthwatch will “give citizens and communities
About Me, W
ithout Me”
management and co-ordinates a unified voice for HIV patient groups across the UK. Its growing membership represents thousands of patients. ALhivE in Leicester is a member of ForumLink. Julie, coordinator of ALhivE, says the group was established “to provide a voice of lived experiences of the HIV community of Leicester, Leicestershire & Rutland. We know that not everyone has the opportunity, confidence or ability to have his or her say. As a core group of 15 positive people covering all ages, experiences, ethnicities and time since diagnosis, we want to ensure that positive people have a say in the care, treatment and support services offered. We are all different with differing needs and this needs to be reflected in the variety of services offered.”
It won’t be possible for Healthwatch to address everything: with each area setting its own priorities, it may be difficult to get some issues such as sexual health on the agenda. But with so many areas for Healthwatch to address, it’s very important that people living with HIV are represented. You can became a member individually or as part of a Patient Forum.
Patient Forums Most Patient Forums are part of an HIV clinic and were initially established to ensure hospital services met patient needs. While still continuing to do this, many groups have expanded to take on additional functions and responsibilities. Some have a consultation role, working with commissioners to ensure effectiveness in both hospital services and wider health services such as GPs. Others provide peer support within the clinic, with patients supporting other patients, providing newly diagnosed courses or workshops. There may already be a patient forum in your clinic. If there isn’t and you want to set one up it’s useful to identify someone at your clinic who is a patient champion such as a consultant, nurse or health advisor. The clinic may be able to provide a room to meet in and refreshments for an event. You can talk to other patients and put up posters around the clinic to promote the group. You should also talk to Forum Link. Forum Link strengthens local groups, providing support on procedures and financial
Policy makers, commissioners and NHS service providers find it useful to engage with these groups in order to really understand the needs of patients when planning health and social care services. Existing agencies such as Local Authorities who have new powers around sexual health, and the new Clinical Commissioning Groups, will be seeking the views of public and patients. There could be role for patient groups to influence and engage these agencies, directly or through Healthwatch. Want to talk about any of the issues raised in this article?: Thinking of setting up a patient group, or have an established group wanting support and to link up with others? Contact Forum Link; phone: 020 7738 0258, email: admin@forum-link. org Living in the Leicester area and want to know more about ALhivE, contact To learn more about the HIV Activists Network Contact HIVactivist@nat.org.uk on 020 7814 6767 Article funded by Abbott with no editorial control or input.
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a stronger voice to influence and challenge how health and social care services are provided within their locality”.
“We need to take responsibility for ourselves and provide a lived experience of HIV. ALhivE provides a platform and a voice for the diversity of positive people in the area. Patient organisations are peerled and fulfil the obligation of commissioners to involve patients in their consultations.”
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Spotlight On... Peer Mentors Marc Thomson, Positively UK’s Peer Case Worker, talks about our unique Peer Mentoring programme and how it benefits both Mentor and Mentee.
Peer Support is central to the work of Positively UK. It has long been our ethos to ensure that people living with HIV are able to receive advice, information and one to one support from others living with HIV. In recent years Mentoring – a one-toone, non-judgmental relationship in which an individual voluntarily gives time to guide and encourage another – has become a popular tool in a range of settings, from big businesses to services which help disadvantaged young people.
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I write ‘I have no fears’ because I instantly feel I am in a safe place, away from judgment.
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Our Peer Mentoring programme combines elements of Peer Work and traditional mentoring to create a unique agenda in which we train people living with HIV to support others with any eventualities they may encounter. This often includes advice with diagnosis, treatment options or disclosing. Depending on what the mentee wants to talk about, topics of discussion could include immigration, housing, benefits, relationships and domestic violence. Ultimately, the mentor’s role is to provide a friendly, relatable, reassuring voice and to be a source of guidance. In November 2011 The British Psychological Society, British HIV Association and the Medical Foundation for AIDS and Sexual Health published
Positively UK Autumn 2012
the official standards of psychological support for adults living with HIV. The standards highlight Peer Support as an effective intervention for improving the mental well-being of positive people and specifically recommend the ‘engagement of people living with HIV in the planning, delivery and evaluation of psychological support services’.
* * *
Enhancing their CV
*
Improving their ability to manage their own health and well-being
Sharing their understanding and experience of living with HIV can be a powerful and rewarding experience for mentors. Many of the people who volunteer tell us they want to ‘give something back’ and ‘make a difference in people’s lives’. There is no denying that the impact they have and contribution they make to the life of their mentee is very important but the programme can also bring many other benefits for the mentor, such as:
For a mentee it may be the first time they have ever met or spoken to someone with the same condition as themselves. This can be a very powerful way of gaining reassurance and reducing any sense of isolation they may have. Often mentees find hope at a time when they may be angry, confused or frightened.
* *
Developing their mentoring skills Developing their knowledge of HIV and related issues
Building their confidence Gaining skills that could be useful in the workplace or getting employment
Being a mentee can also have a longterm, positive impact on a person living with HIV as it will help them to:
*
Increase their ability to self-manage and make informed decisions
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Improve their adherence and understanding of treatments
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Increase their ability to have good sexual health
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Increase their ability to talk about HIV
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Increase their uptake of health and social care services
* * *
Increase their emotional well-being Increase their confidence Reduce any feelings of isolation
Here, Mel, one of our new peer mentors tells us about her experience of the mentor training: Catching the tube to Angel for my first day of Peer Mentor training at Positively UK, I enjoy the thought that none of my fellow commuters are aware of the long journey it has been for me… 12 years! That is the distance I have traveled, from first being diagnosed to finally feeling strong enough to support others.
mind is completely blown, I thought I’d had a good understanding of how the virus worked, and now all I have is more questions! Similarly, I believed I had a good grounding in mental illness, but I had never associated post-traumatic shock disorder with diagnosis. And, on the last day, when we all write a word describing one another, I am truly touched by everyone’s comments.
because, even a week after the course, I am still burning with enthusiasm and a belief in how beneficial Peer Mentoring can be. For me it has reconfirmed that I would like to work in counseling, and the training has been a great stepping-stone toward this. But, more importantly, it has helped me understand how to do more than just survive with HIV, now I can thrive.
‘Four amazing days’ is how I would summarize the experience and I would recommend it to anyone who can keep an open mind and are interested in mentoring. When I was asked to write this piece I thought ‘great, I could be the spark that lights someone else’s fire’,
As a mentor, I have a monthly support group, access to the latest information and advice, expert training, personal development, and a chance to meet up again with eight fantastic, diverse people, all of whom can shock, share, care, laugh and have fun!
I know from personal experience how valuable peer support is: the internet groups I belong to have been invaluable for advice, guidance and much needed laughter. Even though I gave myself a different identity I found lots of friends through these groups. It was an online ‘peer’ who first suggested I work with positively UK and the Pregnancy and Beyond programme. Otherwise I wouldn’t have had the encouragement and support to go for it.
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But here I am, going for it, the real me! I am full of anticipation and excitement. I’m not nervous, (which is not because I’m a confident person if you’d seen me last year when I enrolled on a counseling course you would have seen sweaty palms and heard me stutter ‘my names M M M Mel!’) I just feel calm. When we discuss our hopes and fears I write ‘I have no fears’ because I instantly feel I am in a safe place, away from judgment. And, over the next four days, I learn so much more than I was expecting. I find I am perhaps not as emotionally resilient as I thought but that I am far less prudish than I ever believed possible! When Simon from ibase shares his seemingly limitless knowledge my
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Recently at Pos UK Recently we welcomed a new member to the Positively UK Case Work Team. Tomasz has been volunteering as a peer mentor for over a year and running the Gay Talk support group. He will be providing outreach at Royal Free Hospital and heading up a new outreach service for men at the Royal London Hospital. Women from across the HIV sector gathered at Positively UK to discuss the impact of healthcare reforms and budget cuts on services for women. The event was organised by Positively UK as part of the Women’s Health Equality Consortium, a strategic partner of the Department of Health. Organisations including George House Trust, Sahir House and Positive East heard from commissioners, service users and debated how to protect key services for women and ensure areas such as gender based violence and reproductive rights were fully addressed. A report from the day is being produced and will be distributed to commissioning bodies across the UK.
World AIDS Day is fast approaching and Positively UK has its running shoes on. We’ve teamed up with Positive East and taking part in their Red Run to raise funds for our organisations. So dedicated are we’ve even set up a running club to spur each other on. You can sponsor a member of the team by visiting our website www.positivelyuk.org/, clicking on red run and selecting a team member of your choice.
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A SERVICE OF
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WO RL D A ID S DAY S AT U R D AY 1 D E C E M B E R 2 012 S T P A U L’ S ( T H E A C T O R S ’ ) C H U R C H COVENT GARDEN 11 A M FOLLOWED BY THE PLANTING OF A TREE OF REMEMBERANCE IN THE CHURCH GARDEN F O R M O R E I N F O R M AT I O N V I S I T M A D T R U S T. O R G . U K The Make A Difference Trust is registered in England and Wales as a charitable company limited by guarantee Company No 6546586 Charity Registration No 1124014 Registered Office First Floor, 28 Denmark Street, London WC2H 8NJ Tel 0207 240 8206
Positively UK Autumn 2012
Julie: Gender Inequality and the Cuts Positively UK Magazine would like to introduce our new columnist, Julie Reynolds. After being diagnosed in January 1991, Julie attended university in Bradford, earning a degree in Peace studies. She was openly living with HIV from 3 months of diagnosis, speaking in schools, at conferences and to the media. She became a trainer for Bradford HIV unit, working on peer education programs before working full time at Positively Women for 6 years and later for Scottish Women’s Aid. She currently coordinates outreach and planning services for hard-to-reach families.
I am horrified to see institutions that have brought about equality being dismantled. The NHS, the welfare state and the charitable and women’s sectors have improved lives, reduced poverty and discrimination and championed equality in health and rights. Gender inequalities persist in our society and culture and progress towards equality has not just been halted: in some areas it is going backwards. Women are still vulnerable to a complex system of interrelated and mutually reinforcing deprivations, impacting on our
ability to claim and access civil, cultural, economic, political and social rights. We are not equally represented, as only one in five Members of Parliament are women. As long as Parliament remains male-dominated, policies enacted will continue to perpetuate an unequal society. Ignoring these structural inequalities rejects clear research and evidence from frontline women’s organisations. Women form the majority of those in low paid, low status jobs. Between job cuts, benefits freezes and reductions in legal aid, women are worst hit. Cuts and freezes in child benefit hit women hardest, as do wage freezes and job cuts in the public sector where 64% of the workforce are women; women are also usually the frontline users of public services, so are most affected by the
closure of local facilities; and because of traditional roles as carers, they often find themselves having to step in when state help is withdrawn. These inequalities will grow as government cuts create an additional layer of need. Demand for women’s services is increasing while funding is disappearing. Last year Eaves Housing’s Poppy Project, a charity that pioneered and developed specialist services for 8 years, had its funding withdrawn. These services were for victims of sexual trafficking. They provided refuge and therapeutic support for hundreds of abused and exploited women. Also, Women’s Aid, Refuge and others have lost funding. Any money saved won’t make up for losses in expertise and progress. Cuts could also lead to increased violence as support is reduced. ‘Restructuring’ and ‘efficiency drives’ are terms that shield funding cuts. Too often debate around policymaking is surrounded by a trance-inducing false respect in which people within key organisations only say what funders or ministers want to hear. This can only lead to bad policymaking. Some of my writing may be overtly and passionately political in its challenging of government policy. I make no apology for this. I do not feel I can be silent. I believe we all have a responsibility to challenge where we see equality being eroded.
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This first column says little about my personal journey through 22 years of being HIV positive. After all this time, my HIV status is not always at the forefront of my mind, though the learning and experiences it has entailed are inevitably intertwined in my thinking.
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What’s Happening Around the UK? BIRMINGHAM Universal Women’s Group and is on the last Friday of every month. Contact Alex on 0121 622 6471 or email alexbergman@abplus. org.uk Terrence Higgins Trust Birmingham provides support or advocacy services for women living with HIV. Contact Michaela on 0121 694 6440
Bournemouth Body Positive Dorset Women’s support group on the first Tuesday of the month. Contact 01202 297386
BRIGHTON The Sussex Beacon run a Women’s Group and provide oneto-one support in Brighton. The group is run once a month from 10:30am-3:30pm. Contact Paula Evenden on 01273 645698 or e-mail paula.evenden@sussexbeacon. org.uk
BRISTOL Terrence Higgins Trust multicultural women’s group. Monthly on Saturdays. Contact Bonnie on 0117 955 1000 Saturdays 11.30am-4pm
CARDIFF Terrence Higgins Trust. African women last Thursday of every month 1-4pm, women and carers group – 2nd Monday 11am-1pm, parents group. Contact on 02920 666 465
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CORNWALL
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Kernow Positive Support (KPS) runs a monthly women’s support group, dates and times now vary. Contact on 01872 262221
DerbySHIRE Derbyshire Positive Support runs a women’s group on the first Wednesday of the month. Contact 01332 204 020
I Positive run support services for all women living with HIV in Derbyshire and their families. Contact Michaela on 01246 559 431 or email micaela.swallow@ nhs.net
EAST ANGLIA PLP – Support group for HIV positive women. Contact 01502 537 985 or email info@plpea.org.uk Women Living Positively runs a monthly support group for infected and affected women.
HAMPSHIRE Monthly Support group for women infected or affected by HIV/AIDS Contact 01252 345 019 or email info@positiveaction.org.uk
‘Positively Social’ a group for both men and women, meets monthly; in Hastings on the first Monday and Eastbourne on the third Thursday of month.
Contact 0191 281 5200
Sheffield SHIELD run a evening session on Thursdays 12-3pm except last of month.
Contact 01920 484784 The Crescent run two support groups for specifically for women: a ladies lunch which takes place every other month and a mother’s support group known as the Fountain Group in Watford, which takes place every month. Contact 01727 842 532 www.thecrescent.org.uk
LIVERPOOL COMMUNITY COMMUNITY Sahir House hold a monthly EDINBURGH GRANTS 2013 women’s peer AWARDmentor-led 2011 Contact 01323 649 927
ISIS – a group for women living support group. with or affected by HIV – Contact Serena on continues to meet every Tuesday Sponsorship by 237 Gilead 0151 3989 or email from 1.00-3.30pm at Waverley info@sahir.uk.com Care, 1-3 Mansfield Place, Edinburgh EH3 6NB LUTON/
Gilead is proud to announce the
Integrity, Teamwork, Excellence?
Contact Maro on 0131 558 1425 opening of 2013 HIVBEDFORDSHIRE community or email fphealth@waverley BbpositiveThe HIV positive women’s grants application process. care.org support group. Wednesdays grants are aimed at supporting Waverley Care Offers a number 4-6pm. Food and refreshments HIV–patient and community groups of services providing practical available. or organisations. A total of up and emotional support to people to £125,000 is available for core Visit www.bbpositive.com living with HIV in Scotland and to funding or project specific funding. Psychological Support now their partners and families. This Award aims to recognise a CAFPH. For people available at Particular will be given Contact 0131 661 0982 attention or visit community group who haswith made a living HIV to applications that promote or www.waverleycare.org significant or unique Contact contribution to CAFPH enable the support active involvement of on 01582 726 Positive Help –people Practical living with HIV. 063 or email: info@cafph.org groups in for people patient affected andor organisations GivenbyinHIV memory of Martin J Flynn, treatment, care delivery or policy AIDS. MANCHESTER Community Advocate 1952-2008,
decisions.
Contact on 0131 558 1122 of £5000 George two grants each will be Trust HIV positive House Formade moretoinformation for applicants fund the core activities of group and women’ s support GLASGOW the chosen group. criteria including eligibility and Alternate African Service. THT Scotland runs a Africanforms please applications email Tuesdays. YOUR NOMINATIONS PLEASE women’s group every Thursday ukcommunity@gilead.com Contact Lynda on 0161 274 4499 To request a nomination form 6-8pm. Positive North Applications beBody received by West contact us must at: Contact them on 0141 332 3838 ukcommunity@gilead.com 15th March 2013 women’s support group. Weekly, Body Positive Strathclyde Friday mornings. women’s support group. Weekly, Contact 0161 8820 2202 Friday 5-8pm. Body Positive North West runs Contact 0141 332 5010 an African Women’s group on Date of preparation: April 2011 mornings. Thursday Date of Preparation: October 2012 001/UK/11-03/MM/2872a 001/UK/12-10/CI/1108
PositivelyUK Autumn 2012
Blue Sky Trust runs a group every Tuesday 11am-2pm.
Herts Aid holds a HIV positive women’s support lunch monthly – the 3rd Tuesday of each month from 1pm-3pm.
HIV
East Sussex
Newcastle
Hertfordshire
UK AND and IRELAND Ireland
Contact Joe on 01473 692 616 for more details
Contact 0261 882 2200
Contact 0114 278 7916
SOUTHAMPTON Positive Action run a monthly support group for women affected by HIV. Contact 0238 022 5511 or email info@positiveaction.org.uk
STOKE ON TRENT Esprit runs a women›s group every two months. Contact Rosie 01782 201 251
SURREY Monthly Support group for women infected or affected by HIV/AIDS Contact 01252 345019 or email info@positiveaction.org.uk
SWANSEA AIDS Trust Cymru runs a women’s support group on the last Wednesday of month. Contact 01792 461 848.
west SUSSEX HIV Peer and Advocacy Service (SHIVPASS) offers: A confidential monthly support group for Women Living with HIV. One to one support for families affected with HIV. Contact: BME Community Services, Worthing, West Sussex on 01903 211033 or confidential helpline 074234 32924 or email info@bme-cs.org.uk or visit www.bme-cs.org.uk
What’s Happening Around the UK? We are currently updating our ‘Whats happening at Positively UK’ page. If you would like to update your details or advertise a new HIV support group then please email ninas@positivelyUK.
man@positivelyuk.org 020 7713 0444 or email los ll Ca . ed lud inc be can t e tha know of a group or servic Please get in touch if you
London - Positively UK’s Services Cara – Ladbroke Grove
Monthly support groups:
Weekly groups for HIV positive women. Every Thursday 11am-3pm
*
Call 020 7243 6147 for details
Positively UK – Islington
*
HIV positive women’s group every first Wednesday of the month, 4-8pm GayTalk, group for gay men, last Saturday of every month 12 – 3 pm
* African Group every third Saturday of the month 12-3pm (men welcome)
*
Str8 Talk – Heterosexual group for HIV positive people. Every third Wednesday, 6-9pm
Call 020 7713 0444 for details or créche booking.
Deadline for the next issue will be January 10th, 2013. Managing Editor Nina Scott Design Intertype.co.uk Layout Gail Tandy Print Stephens & George Proof Readers Allan Anderson, Silvia Petretti, Ben Osborn
Lighthouse – Ladbroke Grove Str8 Talk – Heterosexual group for HIV positive people. Every first Wednesday, 6-9pm
One-to-one sessions: At Positively UK, Islington and Monks Park, Brent * General support
* *
Homerton call 020 8510 7996
Newly diagnosed support
Royal Free Hospital call 020 7794 0500
Evening and daytime sessions
St Mary’s call 020 7713 0444
Pos UK – call 020 7713 0444 Monday to Friday 10am to 4pm, Thursday 10am to 8pm
Ealing Hospital – call 020 8967 5554
Call 020 7713 0444 for details
Royal London call 020 7713 0444
Monks Park – Brent
Northwick Park call 020 7713 0444
Mixed peer group for HIV positive people. Every last Thursday of the month 11am-3.30pm Call 020 7713 0444 for details
Images: Greta Hughson, Jesse Jameson, Steve Shapiro, HOPE not Hate, Edo Zollo, Phil and Pam’s Photostream Editorial Team Positively UK would like to give a very special thanks to our contributers: Greta Hughson, Selina Corkery, Debbie McMillan, FionaP, Maureen Kiwanuka, Ben Osborn, Silvia Petretti, Edo Zollo, Amanda, Tony, Maurice, Rachel, Max, Julie, Mikey, Dan Hartland, Peter, Chris, Angelina Namiba, Bex, Robert James, Allan Anderson, Marc Thomson, Mel and Julie Reynolds.
Outreach one-to-one sessions:
Subscriptions info@positivelyuk.org Send letters to the editor and unsolicited manuscripts to: Positively UK Freepost RLYJ-ULRT-CEEC 345 City Road London EC1V 1LR Or email ninas@positivelyuk.org Please submit articles of no longer than 1,200 words, indicate what name you would like to use and supply photos (which can be returned to you). While we respect the individual’s point of view, we will not print anything we deem to be discriminatory.
The Positively UK magazine is a public document. We cannot guarantee confidentiality for the stories on these pages or for any assumptions that may be made. Please be aware of this when considering making a contribution. No material in this publication may be used without permission from Positively UK. Views expressed by individual contributors are not necessarily those of the editor or Positively UK. Positively UK is published by Positively UK, registered charity number 1007685.
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Support Groups:
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I WISH I’D
TOLD HIM
THE WHOLE STORY...
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Have you discussed everything that you wanted to?
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If something is bothering you about your anti-HIV medication, your doctor or nurse can help you deal with it. Find out more at www.yourstoryyourscript.co.uk
Don’t leave today with a weight on your mind YOUR YOUR STORY, STORY,YOUR YOUR SCRIPT SCRIPT April 2012, VIUK12NP067
PositivelyUK Autumn 2012