A few years ago, as Chair of the Disabled Staff Association for a central government department, I arranged for Alistair Campbell to come in and give a talk about his experiences with mental health. I clearly remember one of the things he said was that a recent (at that time) piece of research from a Norwegian University had been published which had identified the areas of medicine professionals would most prefer to practice in. Top of the list were childhood cancers and heart transplants. Not really surprising. Vying for bottom place of the list and therefore the ones that the majority of medical practitioners would really prefer not to touch, even with the proverbial bargepole, were mental health and HIV/AIDS. Perhaps even less surprising but still disappointing. These still remain the most stigmatised of disabilities.
My personal experiences of mental health and HIV are intertwined. Being diagnosed with HIV and AIDS some 13 years ago sent me into a downward mental spiral, including a failed attempt to end it all. Both conditions are now well controlled. Both conditions are hugely stigmatised, probably mostly due to fear. Fear stemming from ignorance. Ignorance stemming from lack of information. Lack of information stemming from unwillingness to learn. Unwillingness to learn stemming from fear. And so the cycle continues until someone is prepared to break through it.
I learned long ago that the best response to stigma is education. By informing those that respond negatively to the declaration of my HIV+ status that the risk of them becoming infected simply by being in my presence is zero, and having the scientific data to back that up, I can counteract the mythology that still surrounds the condition. The HIV+ people I work with tell me that the question they are most frequently asked before they decide to share their status is “Are you clean”. To which the answer must of course be ‘Well I shower at least once a day and always scrub behind my ears”. How else would you define clean? And by being HIV+ does that mean that one must therefore somehow be ‘unclean’? Was this not the warning cry that lepers used to shout as they rang their bell when mingling with the uninfected public? Hardly surprising when a quick search of the internet brought up the following from a French website:
Recently, the close family of a deceased person was not given immediate access to the body, because medical personnel, who suspected HIV infection, refused to authorize transfer of the cadaver to the funeral home. In order to justify retaining the body for several hours, they cited regulations that forbid embalming practices if the person has died due to HIV infection. (http://www.cns.sante.fr/spip.php?article319).
Even in death stigma and discrimination still rear their ugly heads. And even amongst those who are trained to help and support us. So many times I hear of dentists who refuse to treat HIV+ patients or who, as happened to me, book an appointment for that patient at the end of a surgery so that the place can be completely sterilised after the treatment has been completed (not only is this illegal but it does make you wonder about the dentist’s clinical processes and other patients with undeclared diseases) or the nurse who triple gloves herself before taking your bloods.
No wonder then that many living with the condition choose to not publicly declare it. And that has to be their choice. It is a personal decision. I chose to not live in shadows. Coming out once as a gay man was difficult enough. You would have thought that that knowledge would have stood me in good stead for coming out a second time as a person living with HIV but the experience was very different. The public face of homosexuality is now more acceptable than that of a stigmatised, mostly invisible condition. A condition which traverses three of the most taboo of subjects in British society: sex, homosexuality and death, cannot ever be a socially acceptable one. Only by those few individuals who are able to speak out, speak up, speak for and on behalf of others who are, for what ever reason, less able to do so, will the condition become more normalised. I chose to do this by writing and publishing Ripples from the Edge of Life, where thirteen other people joined me in sharing their stories of their HIV diagnosis. Not all of those people chose to do so using their real name. That is their choice.
One day, perhaps not in my lifetime, those living with HIV/AIDS will be easily able to openly discuss their situation without fear of reprisal or rejection. That day may still be far off, but I can still live in hope and, in my own small corner wave my personal flag of tolerance, understanding and acceptance. What can you do to help me raise that flag high?