Most of us in the Western world who have HIV can now look forward to the future. But how many of us have found jobs and are working at something we believe in? Laurence Gibson finds out
 illustration: getty images |
There are now 15,000 people living with HIV in Greater London - a figure significant enough to make a real difference to the workforce. But despite the increased hope and optimism felt by people on treatments, how many of us with HIV remain unemployed? The answer is: still too many, even though about 90 per cent of positive Londoners are of working age (nearly 50 per cent of these being from black and ethnic minorities).
Even if we have returned to work or study, how many of us are doing something we really enjoy? And if it’s volunteering, how many of us are doing something that we can talk proudly about, and mean it from the heart? The answer is probably not many.
That’s where Positive Futures come in. Positive Futures (PF) is a London partnership of HIV charities supporting people living with HIV and Aids. Their aim is to improve the employment, education and skills prospects of people living with HIV in the Greater London area.
PF recognises that, like the population at large, HIV positive people come from varied backgrounds and have varied needs. The five London HIV charities involved - which include the Globe Centre, Oasis North London, Positively Women, THT&Lighthouse and the UKC - pool together their experience and services.
The problem that the Positive Futures team faces currently, however, is that the majority of clients approaching them are Africans who are still waiting for their Leave to Remain or refugee status and by law are unable to work. “We can’t help anyone who isn’t officially able to work,” says Basil Morgan, project manager with PF’s new ‘Routes into Work’ scheme, adding, “but we can help to clarify the system and procedures of finding a job in this country. Sometimes our clients don’t understand the fierce competition that can exist, even if you know someone connected with a post you’re interested in.
“So ‘Routes into Work’ doesn’t find people jobs, it gives them access to job-finding facilities, like job websites and services. Most importantly we can help them with things like writing CVs, interview techniques, job application forms and discuss worries around HIV disclosure.
“We can also offer clients support with vocational courses, and retraining to help them gain UK accreditation for existing overseas qualifications (provided they’ve been granted asylum here and are permitted to work). We have a steady stream of clients coming through with a wealth of different experiences. We look at each case on its own merit, whether someone wants to finish training in a therapy course and go freelance, or look for a career in IT or health promotion.”
It’s not simply a question of getting people back into work. For other reasons, too, the difficulty is this: out of the 15,000 diagnosed as positive in London, there are a growing number of people seeking work following an HIV diagnosis, and a large number of people who have left work many moons ago and to whom the prospect of returning to work is too daunting. In both these cases, it’s about boosting confidence levels, which have often hit rock bottom.
Some people may feel that they have been left behind in the face of technological development, or simply that they have been devalued because of a lack of recent experience. Then there are those who are diagnosed at a critical point - facing death - to whom the prospect of ever working again seems a dim and distant prospect.
 photo: nikki kastner Memory Fachikonye: volunteer human resources manager, editor and committee member |
PN talked to Memory Fachikonye, a 37-year-old African woman who came to the UK some 18 months ago on holiday. “I was only here on holiday, for a couple of weeks. I had a bit of spending money and was going to return home in January,” recalls Memory. “But I began to feel ill. I felt so sick and so weak. I had really bad flu-like symptoms and could hardly eat a thing. However, I was staying with a nurse who was unsure why all the medications hadn’t got rid of my illness - and she suggested going for an HIV test. I went to a GUM clinic in north London and collected the results the following day.”
The results came back as positive and, worse, the virus had forced Memory’s T-cell count down into single figures. “My liver and kidneys almost failed,” says Memory, “I thought I was going to die. But I have a 14-year-old son and I kept on asking myself ‘what about my son?’”
Now, some 18 months later, life is much more positive for Memory. She has a voluntary job, through PF, and her health has improved.
So how did PF help Memory? “I volunteered on a PF training scheme in October, and now work in human resources for the operations manager’s office at Positively Women (PW), London’s very popular women’s HIV organisation.
“I also work for the ‘Taking Part’ scheme (a programme run by PW that aims to address the lack of HIV positive women acting as advisors on health committees ),” she continues. “And I guest edited the refugee issue of PW’s newsletter, which I really enjoyed.”
It’s not only the work that fulfills Memory, it’s also her faith. As she says: “I am a Christian and pray to God. I thank him every day for giving me this second chance to live my life.”
Michael Green, from Bethnal Green in east London, has had a similar work experience. First diagnosed some four years ago, just five days before his 21st birthday, he quickly went on to develop Aids with PCP.
“I couldn’t walk, I was incredibly weak and I had no energy at all. It was terrible. It was though my life, as I knew it, was over,” he says.
But, it seems for Michael, it was actually just the beginning.
“I stayed in hospital for several months, where I regained all my strength. I put on all the weight I had lost - and, believe you me, that was a lot of weight. I was - at one point - a walking skeleton but, eventually, I left hospital really quite chubby.
“I tried several combinations until one worked, and then my life changed beyond belief. I sent an article about my diagnosis to a magazine, which they liked and printed. I now write for the magazine on a regular basis. It has opened up many more doors too, and have just secured a writing job for the Guardian newspaper.”
So what does Michael have to say about his renewed optimism?
“I live my life for the moment - it is how you are feeling now that is significant. It’s not how you might be feeling in years to come or how you’ve felt in the past that is important; those feelings are meaningless. Right now I feel fantastic.
“Writing allows me to channel my energy tremendously. It’s a real relief of tension for me; and I am so lucky, I wouldn’t have any other job in the world.”
 illustration: getty images |
Not everyone is as privileged as Michael or Memory. Many people are in the UK, stuck in asylum backlog, unsure of their future, living with HIV and just waiting, waiting, waiting...
For these people, PF offers a variety of useful services. Volunteer schemes, to help take the mind off worrying about asylum; different courses which can aid personal development for when the opportunity to work does arise; re-accreditation programmes for people with qualifications gained in another country to requalify in the UK; and various adult guidance courses.
In these instances, maybe work for work’s sake is - temporarily - enough. But it is important at all times to realise your potential to the fullest degree and not get stuck in a career you do not enjoy, or one that will have a negative effect on your life.
PN talked to Andy Smith, a 36-year-old man who was first diagnosed back in 1996.
“I had been very unwell for long periods of time, and had been misdiagnosed by a locum the year before. He missed all the signs: the temperature of 104 which wouldn’t budge, the really nasty chest infection that wouldn’t go away with any antibiotic.
“When I was finally diagnosed, I stayed in hospital for 10 days, during which time I developed PCP.”
Now, some eight years later, Andy is doing very well. He is fitter, stronger - physically, and mentally - and can, finally, see a light at the end of the tunnel.
“I manage now,” he says. “Having been through all that for a year, you look at things differently afterwards.
“I don’t think about being ill anymore. I concentrate on all the good things in my life, and, for the first time, I listen to myself and to my body. I keep challenging myself, but always with positive stress, not negative stress.”
Andy’s involvement with PF started at London’s Body Positive group when it was running: “It gave me a positive insight on how to get into volunteering. After meeting them, I didn’t feel isolated anymore, but part of a community.
“In fact, I felt very ‘part of the system’ then, and a guidance counsellor from PF started suggesting, “why don’t you do this,” and “why don’t you do that,” and began giving me some direction.
“He suggested I take my teaching further, and helped me get a volunteer position to teach courses at The Learning Centre.”
The Learning Centre is the PF project now based at Oasis North London. The centre provides a range of IT training, including basic computer skills.
“The Learning Centre’s aims are this,” says Andy. “One: to encourage participation within the community; Two: basic IT skills; Three: hopefully change attitudes to help get people back into work; And four: to improve motivation and tackle disaffection and social exclusion.” Not bad values.
 photo: martin Flynn L to R: John Stevens, Basil Morgan and Vanessa Armijo of Routes into Work |
Christina Earl, PF’s Employer Training officer, doesn’t think employers are up to date with the changes affecting positive employees: “Most employers don’t want to discriminate at all, but they are unaware of the issues. And they aren’t up to date on the changes that have taken place for positive people who are back in the workplace. Most are unlikely to even know that they have HIV positive individuals in their workforce. There’s still a problem with disclosure and confidentiality. The larger organisations with global links, like Coca-Cola, the BBC, or British Airways, for example, have come across HIV because of their international links, and have policies in place in response to an HIV positive employee who has come forward and disclosed. But we are getting a good response to our training seminars for other employers, from both large and small companies.”
It is important to realise, along with thinking up a career or vocation that you are interested in, that money should be used to help build your future, and not just for survival.
Obviously, while you are short of cash, this is of little help. But, once you’ve started to put the whole equation of new outlook and new ideas for work together in your head, one thing will hopefully lead to another.
In order to live life to the max, you need to create balance and symmetry. You need to play hard, of course, but you must also work as well.
Do not settle for second, third or fourth best. Keep on looking for opportunities that may interest you: work that you can believe in; work that, above all, YOU enjoy and YOU want to do.
It may not come easily - in fact, far from it. You need to work at getting it right, and achieving that fine balance between work and play.
Positive Futures is a good place to start.
USEFUL SERVICES AND NUMBERSAdult Guidance, Welfare Benefits, Black and Ethnic Minorities Support Worker and Into Work Advice projects, contact UK Coalition where these are based: tel 020 7564 2188. Routes into Work is a new PF project to help anyone who wants to return to work: tel 020 8694 2290. Check out other projects at the Positive Futures website: www.positive-futures.org |
