 John Campbell photos: nikki kastner |
As the UKC celebrates its 10th anniversary, Positive Nation talked to three key figures in the organisation’s development: John Campbell, Bernard Forbes and Edith Kaggwa
John Campbell is the UKC’s founding patron. Though no longer involved on a day-to-day basis, he still keeps a weather eye open for new opportunities and challenges - such as the annual UKC Hero Awards.
“Myself, Terry White, Jacquie Dutton and John Mordaunt made the decision there had to be a new UK organisation of people with HIV in 1993, at the Berlin Aids Conference.
“We did it because we saw people with Aids and HIV being treated badly there. They were getting ill, but the HIV charities attending were refusing to help fly them home.
“I had already been disgusted with Aids organisations in the UK. I felt they were fundraising on our backs as people with HIV but not providing proper services. I also felt the demands of activists in ACT UP had become repetitive. So on August Bank holiday 1993 we launched the UKC by laying wreaths for people with Aids at 10 Downing Street and various Government Offices in Whitehall.”
John was only 25 at the time, but had already lived more life than most. A born rebel, he’d been a ‘prostitute and male stripper’ in Edinburgh before his 16th birthday, and came down to London in 1984 to carry on the same.
“In 1986 I was arrested on prostitution charges and remanded to Chelmsford prison. They did an HIV test. A few days later they released me, but re-arrested me 10 months later for 121 counts of male prostitution.
“That’s when I found out I had HIV. The court magistrate said if I was done for a sexual offence again I’d be charged with attempted murder.”
John became a barman and then a hotel manager, but he started to get ill.
“The hotel chain sacked me and threw me out of my accommodation. For the next five months I was ill and either attending hospital every day or hospitalised.”
His lowest point was the night of 13 March 1988 - “my 20th birthday. I had PCP and was told I would not survive the night. Well, I lived.”
He got involved in Aids activism with a bang. “I started work for Frontliners, rather than organisations I never trusted that claimed they were working for people with HIV. I co-organised the first-ever Walk for Life and helped set up Positive Youth and Aids Ahead, the organisation for deaf people. In 1990 he met the Chief Inspector of Prisons, Judge Stephen Tumin, who made him a government advisor on HIV and sexual health in prisons. Not bad for an Edinburgh rent boy!
“I found a place where all the anger I had could be channelled in a positive way instead of into self harm.”
His intention for the UKC was “that it should be an organisation that would go out there and kick butt,” by being articulate and constructive.
 Early press coverage for the UKC |
“I wanted the UKC to be the watchdog of the HIV sector; to champion human and civil rights. To get us out of the little corner where we were spat on and our houses set on fire and get us into the mainstream disability world. HIV would not have been included in the Disability Discrimination Act without the UKC.
 Former editor Graham McKerrow |
“We also set up Positive Nation with the same aim in mind. I was sick to the back teeth of photocopying a little newsletter at 4am. I went to the US and was hugely inspired by POZ magazine.
“When it actually came out, however, it was a bit ‘softer’ than what I’d wanted. I am immensely proud of the UKC and Positive Nation but think PN’s been a bit of a ‘comfortable’ read at times. We don’t do enough with the power of a 50,000-plus readership.
 Co-founder John Mordaunt lost his fight with AIDS shortly after forming the UKC. |
“There is still loads to campaign for in the UK. The UKC should campaign till we stop having companies discriminate against positive employees, till there is good HIV healthcare in the primary sector, till there is no more nonsense about mandatory testing for anyone, immigrants or otherwise, till there are no more cases like a friend of mine who died in hospital recently with bedsores.
“If the UKC were to go down tomorrow, there would never ever be another PWA-governed HIV organisation in the UK. That’s why we have to continue.
“My proudest achievement? Well apart from PN, the DDA, and so on, I’d say it was when the UKC was instrumental in getting a Tory government minister to say - in the Paris Declaration - that people with HIV/Aids had to be at the centre of any policy development in this country.
“I don’t mind being hated by some people, but I’m respected for what I have done. And I’m proud of the organisation I co-founded.” GC
Bernard Forbes, 47, is the UKC’s current chair. He describes himself
with typical wry humour as “one of the old dinosaurs with HIV who will
probably never work again.” A former police inspector, he’d spent
22 years in the force before a back injury forced him into medical retirement
- around the time he also started getting ill with HIV.
“I was probably infected in 1981. In 1993 I decided to volunteer at the Terrence Higgins Trust. I wasn’t quite dead yet. I wanted to pass my skills on; too many friends and lovers had died without leaving anything behind them.”
Working on the Men’s Health Education project, he found the THT a challenging environment: “I was in fact one of the few people with HIV there who was willing to talk about it in public, so was always being wheeled out as the pet victim. We battled to put our experience as gay men with HIV - what we did, what we knew we would do - into the leaflets we produced. Being realistic, not preachy about sex and condom use. My arse even featured in one of the leaflets - those were the days when I had one!
“I learned that doing anything was better than doing nothing. Just going there improved my state of health. I’ve been passionate about HIV positive people getting involved in their own care ever since.”
He was ‘headhunted’ by John Campbell and joined UKC in 1996.
 Back to Work project leader Bec Clarkson |
“I joined as a volunteer for the advocacy project. It was an exciting time. We were devising the Back to Work Project (the pilot employment project, originally led by Bec Clarkson, that developed into Positive Futures).
“Combination therapy was quite new, but we knew it would change everything. We had to get involved in re-employment; we are the experts on our condition and know exactly what we can, and can’t, do.
“A lot of what the UKC does is to try and strive to normalise as much as possible the business of living with a condition that is still - largely in the eyes of others - an incredibly ‘abnormal’ one.
“Now, the UKC is about partnership working with other organisations. Positive Futures (five London HIV groups are involved) is a good example of what can happen when each organisation focuses on what they’re best at and doesn’t attempt what others do better.”
UKC isn’t always an easy ship to steer. As Bernard says: “We’re an organisation of, and for, experts on living with HIV...which means people get very passionate and there is occasional chaos.”
 Former board members Ruth and Colin Webb |
An example was in late 1999, when two of the Board resigned overnight and Ruth Webb succeeded as chairman.
“There was a genuine policy disagreement between highly-principled people. Some of us saw the UKC as an ‘emergency’ organisation and that maybe it was time to become the positive people’s section of one of the larger organisations like NAT. But others felt we were nowhere near meeting the needs of younger people, the African community, the newly diagnosed, and so on.”
Then there have been the NHS changes and other about-turns in government policy complicating the lives of people with HIV.
“It’s become clear that Primary Care Trusts on their own can never deal with niche conditions like HIV that require specialist care. Then there are things like dispersal for asylum seekers, which makes people’s HIV care impossible to plan.”
Crystal-ball gazing, Bernard says: “Barring a miracle, there will be a hell of a lot more people with HIV around in 10 years’ time, still needing special services. We need to campaign for cheaper treatments not only in the developing world but here.
“I hope the NHS will find a way to really listen to patients, not just indulge in sham consultation, and act accordingly. The UKC is here to provide a rallying point for the expertise on our condition. What African organisations are asking for now is leadership by experienced people with HIV. The system has forced people into boxes - gay, drug user, asylum seeker, black, whatever.”
As he points out: “It confuses the powers that be if they come across gay men sticking up for asylum seekers, or Africans debating with their churches about homosexuality. Or, as with my predecessor, Ruth Webb, standing up and being a middle-England white heterosexual woman and saying ‘I have HIV’.
“It’s about inclusion, not being exclusive. The two most important words in the UKC’s full name are PEOPLE - and COALITION.” GC
Edith Kaggwa, 43, is the new face of the UKC, representing how the organisation
is responding to the needs of UK Africans.
In Kampala, Uganda, she was a veterinary officer working for the Ministry of Agriculture. She lost her husband in 1989 and sought asylum in the UK in 1991, “with very little knowledge of life here, and a single mother.” (She brought over four sons: the eldest has now completed university.)
Having come from a high risk country Edith had an HIV test on arrival. “How far I’ve come since then!” she sighs.
It took her nine years to get her Indefinite Leave to Remain. “I struggled for a while on benefits and got involved in volunteering and courses to keep sane. Oh my God I have so many health promotion and business certificates I should be awarded a medal!"
She joined UKC a year ago. It was her second full-time job after a long period of volunteering and freelance experience at places like Positively Women and Blackliners.
 Recent recruit to the board Thandi Haruperi |
“I’d come across UKC and Positive Futures (PF) while running newly-diagnosed courses at Blackliners. When that organisation collapsed I got in touch with PF for advice. They wanted another part-time adult guidance worker with experience in the black and ethnic minority communities. I applied and got appointed.”
Edith manages the UKC’s BEAM (Black Ethnic And Minority) Team, supported by six volunteers. She is amused that she’s often treated like the young recruit at the UKC despite her 43 years. “As an elder in my community I’m doing a job I’m expected to do and I enjoy it! I’ve built up a lot of confidence and have found that I’m good at working in diversity and with people generally.”
Together they give adult guidance and advice sessions to BEAM clients and facilitate workshops across London.
 Former board member Douglas Slater |
“It’s mainly women who access our support, but more couples are coming forward recently. Already about 500 people have sought our services. We’ve done workshops on nursing, the voluntary sector, education, employment and disability law. We give advice on disclosure, children, and referrals to other HIV services. Most of our clients are at the ‘fed-up’ stage, stuck in the house pleading ‘Can you find me something?’” The workshops the BEAM team recently held on nursing attracted a huge interest. “Not one day goes by without a call from someone who wants to get back into nursing. We have helped get at least five clients back into the profession.”
How did she perceive the UKC as an outsider?
“I was surprised they were recruiting women because it seemed like a gay organisation from the outside, although I knew they did good work with Positive Futures and Peer Advice too. I’m one of the few people from my community who works with gay men. I have to say that sometimes my gay friends are more friendly than my own fellow African men! I have huge respect for any gay black man coming out, he must be very strong.
“There are also differences between the various African communities here and the level of awareness they have around HIV. As a Ugandan you probably know more about accessing the support system and treatment options. But the newer-affected communities arriving like Malawians and Zimbabweans are more reluctant to access care and support. Stigma is much more prevalent within these groups.
“I do feel much more comfortable defending the HIV community to the outside world these days. It is such a global concern that everyone should understand how to handle the issues with respect.”
 UKC co-founder Terry White |
One of Edith’s personal goals is to take the strength and lessons she learns here and pass them on to her friends and family back home in Uganda. “Sadly people expect me to be able to provide them with drugs which I can’t, but I have of course sent money to help, when I can, for close relatives. Even if you help one person to live, there are 10 involved with that person who you can’t reach.
“I’ve lost so many to Aids I can’t count. They see us here in the UK working, laughing, yet we’re still losing our friends and families. But you can’t come into work every day crying. All I can do is give something back to my people. To try to help communities earn money so they can pay for treatments, to learn new skills.
“The UKC should consolidate its national strength and move into the global arena. It’s been going for 10 years and it is time it really was a national organisation. I’d also like to be able to develop more ties on the international front. To export knowledge and skills: like helping people find creative ways to earn money back home to pay for their treatments.” RdeF
