On December the 1st 2011, it is International AIDS Day; it is thirty years since the beginnings of the AIDS pandemic. Danny West, who contracted HIV in 1985, tells his story of living with HIV (Human Immunodeficiency Virus) set against the changing perceptions of the virus.
At the age of 24, whilst at the beginning of what appeared to be a bright social work career, I attended a routine appointment at a leading London hospital sexual health clinic. As well as the usual blood tests for common STDs, my doctor, to my horror, suggested I should also have ‘the AIDS test’ because I was gay and therefore likely to have the disease. This was to be the extent of my pre test counselling, I was advised to return in two weeks for the test result.
In 1985 I had only just begun to hear about this new disease and had never considered that I may be at risk. I spent the following two weeks in a state of high anxiety; I shared my news with a few close friends and gathered together as much information as possible. On returning for my results, my doctor sympathetically informed me that the results were positive and that in the absence of a cure I had 18 months to live.
I left the hospital in a state of shock and returned home to an awaiting group of friends who shared my state of anxiety. I was initially unable to come to terms and was unable to work; I remember feeling completely immobilised, helpless and terrified by new circumstances.
From the moment of my diagnosis I refused to accept an impending death sentence, I rejected the possibility that I would die at an early age as a result of HIV and strategically set about creating a vision for my life; a life that would have purpose, meaning and impact.
A close friend told me about the organisation ‘Body Positive’ (“dedicated to supporting the lives of people, families and communities affected by HIV”) and that it was to hold a social evening at a gay venue called ‘The Market Tavern’ in London. I was extremely anxious on the evening of the social event and along with my supportive friend found myself in a room filled with other gay men who were also HIV positive. This event was to be a turning point in my life and it was on that evening that I met my first partner who was also living with HIV and was to die of AIDS two years later.
At the beginning of the 1980s when the first cases of AIDS were reported in the UK, AIDS was considered to be a gay man’s disease; large numbers of gay men began to get sick and die. This assumption led to hysteria and an avert rise in homophobia, prejudice and the mistreatment and isolation of the gay community.
The cause and origins of AIDS were as yet unknown; the medical world had only just begun to grasp the concept that AIDS was linked to a breakdown of the immune system.
The general population’s response to AIDS was one of blame, fear and ignorance this was reflected in the apocalyptic government health campaign in the UK, we were bombarded with dark images of tombstones, graveyards and the Grim Reaper. Society was frantic in its search to find the origins of this new disease and blame the assumed perpetrators.
This was also demonstrated by the medical professions response to AIDS by isolating gay men inside wards, the gowning up in space suits by medical and domiciliary staff. Social services departments were refusing to provide services to gay men or anyone suspected as having AIDS.
As the AIDS epidemic grew other people began to present with symptoms of AIDS, some of whom were also from marginalised groups such as IV drug users and people from the BME (black minority ethnic) communities. In the early 80s, HIV was recognised to be a blood born virus, transmitted through blood and blood products, vaginal and seminal fluids and from mother to child during pregnancy or child birth.
AIDS confronted society and all of its taboos such as Death, Dying and Bereavement, Confidentiality, Addiction, Sexuality, Racism, Disability and Illness. It opened a very large can of worms. Issues of equality for the groups who were becoming affected by HIV, had to be addressed to ensure that they received the services which specifically met their needs. This required the caring professions, local and central governments, the third and public sectors to review their equality policies, staff training and employment practice and client service provision.
Within weeks of the gay and lesbian community becoming aware of the first cases of AIDS in the UK amongst gay men ‘Body Positive’ and the ‘Terrence Higgins Trust’ were formed. Soon social groups, counselling and education services began to develop. These groups were being formed by people from a broad spectrum of professions, those who were increasingly confident and effective in getting their voices heard, both locally and nationally, and were to become the leading force in the development of services for people infected and affected by HIV. The gay community responded with courage and intelligence in the face of this frightening new disease and was able to join forces as a response to stigma and societies prejudiced reaction.
Death was now on the agenda as friends, lovers and on occasions families became the primary careers of sick and dying men both at home and in hospital settings and in the absence of a cure death was seen as inevitable. Gay men began to make decisions about their health care and treatment and supported by their loved ones began to challenge both doctor-patient relationships and the manner in which they utilised health care and social care support services.
I remained in social work until May 1986, where upon I retired on medical grounds because I wanted to commit my time to supporting people living with HIV. In October of 1987, I moved to Brighton to work closely with a friend and founder of ‘The Sussex AIDS Help line’ and for the following 18 months helped operate the telephone support service, raise funds and provide one to one mentoring in this pioneering support service.
In 1986 Graham Wilkinson founder of the Sussex AIDS Helpline and I were amongst a small group of gay men, convened by Christopher Spence (OBE), to explore a vision of a innovative new centre for people living with HIV. Our vision for this innovative project was to establish a unique holistic centre and residential unit offering respite and terminal care. We wanted people living with HIV and AIDS to receive care, support and treatment in an environment where they could embark upon a self empowered and dignified journey of recovery or dying.
When London Lighthouse opened it become the first centre of its kind, and though it received initial opposition, it went onto become a leading campaigning and educational centre, which provided extensive training and awareness to local government, third and medical sectors throughout the UK and Europe.
Within local authorities, especially the inner cities, large numbers of gay men were for the first time requesting services such as domiciliary care, social work input and housing support, yet local authorities had no experience of this new client group and had no policies, guidelines or trained staff to provide services. Staff within local authorities reacted to this new client group and new medical condition with fear and apprehension and many refused to carry out their duties.
The London Borough of Hammersmith and Fulham is historically home to a large gay community and is close to the Chelsea & Westminster Hospital, a leading medical centre in the research of and the treatment of people with HIV. This was to be one of the first local authorities to provide services to people with HIV and AIDS, and develop strategies for training. I was subsequently appointed as training officer and set about establishing an extensive awareness training programme which included addressing the taboo subjects raised by AIDS, such as Death and Dying and Sexuality. An HIV unit was established and further officers were appointed with specific responsibility to address issues for women, housing, drug use and the BME communities.
Over the next few years I was to experience my own deteriorating health and the death of hundreds of gay men in the wider community, two partners, my two closest friends and a young child who I mentored for many years. In the gay and lesbian community everyone knew someone who had died or was dying. Open expressions of grief within the gay scene were commonplace and attending funerals became a frequent occurrence.
The gay and lesbian community had confronted its denial of death and was actively involved in talking openly about it. The community was challenging the professions ordinarily associated with dealing with death such as doctors; community based nursing services, the church and undertakers. HIV charities, both locally and nationally, were increasingly offering or supporting education and training, as well as counselling services for people affected. The development of similar counselling and support services was to be reflected across social services departments and within medical services throughout the UK.
In modern day Britain the extended family was in decline; replaced by the nuclear family it was unable to maintain responsibility for extended family members especially the elderly, sick or dying. Within the UK the majority of us die in hospitals and yet the hospital was intended to be a place of treatment and recovery from illness. The hospice movement in the UK, which is primarily charity funded, is only able to provide a small number bed spaces for the terminally ill and dying. The gay community set about establishing its own resources for the sick and dying. These places include ‘London Lighthouse’, ‘The Mildmay Mission’ and ‘The Sussex Beacon’. In hospital settings the introduction of “Palliative Care Consultants and Teams” began, which provided holistic care packages for people dying as a result of HIV.
Medical and Scientific advancement throughout 1990’s resulted in the early introduction of antiviral treatments which are able to interrupt virus activity and slow down the progression of HIV, these drugs could not be tolerated by everyone, but they did began to change and extend the lives of people living with HIV and AIDS.
New drugs such as AZT and DDI were both toxic and had a number of unpleasant side effects; I personally had an extremely violent reaction to AZT and so it was at this point in my treatment history that I decided to take a treatment vacation and only consider treatment that would provide me with quality of life as opposed to quantity of life. I have now been on “Highly Active Antiretroviral Therapy” (HAART) for eight years and have found a combination of medication, which has few side effects, has boosted my immune system and given me a blood count or (CD4) count of 750, an undetectable viral load.
Within society a misconception that HIV and AIDS treatments were a cure and that HIV remained the problem of the traditionally affected groups led to a perception that HIV and AIDS had ‘gone away’. Government health and safer sex campaigns thus declined in the mid 1990s, along with funding to local government and smaller, local HIV charities.
In 1997 the respite and residential unit of the London Lighthouse closed, and gradually training and education began to full from the agenda of the nation.
Combination therapy is a lifeline to people living with HIV; the numbers of people dying from HIV and AIDS has declined dramatically, many (though not all) are now expected to have an almost normal life expectancy. This raises new challenges; many people like me who are living long term with HIV are confronted with the impact of HIV and the ageing process, as well as the physical, emotional and psychological impact of living with and managing a highly stigmatised complex chronic health condition into the future. There is an increasing group of older people living with HIV who face more uncertainty in the future, many of us have been in long-term unemployment, have no financial security, live in isolation, have limited support networks and face a range of complex health issues as we age with HIV.
World Health Organisation statistics report that HIV is now considered a predominantly heterosexual disease with world figures indicating that it is currently estimated that there are 33.3 million people living with HIV worldwide and a calmative total of 114,766 people have been diagnosed with HIV in the UK by the end of 2010 more than 30 million people in the world have died of AIDS.
In 2006 I returned to work following a fourteen year period of living with my partner and relying on the benefits system. I enrolled onto a back to work programme with the United Kingdom Coalition of People Living with HIV (UKC) and was appointed my own life coach (Andy Hilton), who enabled me to develop a business plan and eventually set up my own coaching and training consultancy.
I approached The Coaching Academy Europe’s largest coaching school and was refused my initial request for a free training place on their diploma level coaching course. Not being discouraged I approached the CEO of the academy and explained my vision of utilising coaching to enable people living with HIV and people living with disabilities to achieve their goals. I was offered a scholarship and qualified at distinction level in 2008.
To my surprise I quickly realised that there had been a significant shift in focus in the HIV community; people infected where now feeling a new sense of hope and that they had a future.
It was whilst working as a trainer at the UKC that I picked up a leaflet in the lobby which advertised a leadership programme delivered by the then Disability Rights Commission. I was successful in my application and introduced myself to the then CEO Mike Adams, who trusted in my vision and skills. He was to later appoint me as a leadership coach on subsequent leadership programmes.
I have continued to work in partnership with Mike Adams in his current position as CEO of the Essex Coalition of Disabled People (ECDP), and amongst other initiatives I have been commissioned by Mike to co-design and deliver an innovative leadership programme called ‘LeadingAbility’ for people living with long term health conditions, injuries and disabilities (IID), which has included working with veterans of the current conflicts in Afghanistan and Iraq.
Parallel to my work with Mike Adams I have worked as a lead coach and advisor to the Royal Association of Disability and Rights (RADAR), who now provide a range of highly successful leadership programmes for people living with IID across the UK. These programmes have become increasingly inclusive of people living with HIV.
Additionally I have continued to work with my former coach Andy Hilton in developing coaching projects and successfully sourcing funding through the Elton John AIDS Foundation (EJAF), which has enabled us to deliver two significant coaching projects in partnership with HIV organisations such as the Terrence Higgins Trust ‘Back to Work Programme’, George House Trust, Positively UK and AB+.
As we remember 30 years of the AIDS epidemic and the many people who have died, we see a move towards marginalising HIV and people living with HIV, even though the majority of those infected worldwide are heterosexual. We are also experiencing an increase in negative and damaging stories portraying disabled people as scroungers in the media.
Additionally I am concerned about recent reports and evidence which demonstrates that there has been a significant increase in sexually transmitted diseases and HIV in the general population and highlights the fact that there has been an absence of any significant government HIV or sexual health related campaign over the past 20 years.
The introduction of the 2010 Equality Act has finally addressed our employment and equality rights, yet there is a real danger that the values and principles contained in this essential piece of legislation may full from the agendas of our government in a current climate of recession and uncertainly. Many organisations are experiencing significant cuts in funding or the complete withdrawal of funding as we have witnessed with the disastrous loss of UKC and The Positive Place and other charities across the UK. With radical changes to the benefits system and changes in the way people living with HIV are supported by the Department of Work and Pensions (DWP) anxiety levels are high and the future uncertain. I believe that the time is right to readdress HIV and its associated issues and place HIV firmly at the forefront of our society’s awareness and our nation’s health and human rights agendas.
In August 2011 I celebrated my 50th birthday and in October another anniversary, 26 years of living with HIV. A lot has happened over this time; I have learnt to remember and value many significant dates and the faces of many loved ones who have gone on ahead of me.
During my journey I have experienced many losses and many inspirational acts of strength and courage, my career and life paths have taken many unexpected turns and I have lived an unimaginable life. I am now live in a landscape of living with HIV and I am determined to continue to work within the HIV community to enable people living with HIV to achieve their potential and develop their leadership contributions.
I am committed to ensuring that we continue to address our rights until we experience our human rights as an actualised reality in our everyday lives. As for my future I intend to continue to work tirelessly to secure funds for coaching and leadership projects to this end and support organisations such as a National Long Term Survivors Group (NLTSG) for whom I have served as trustee and vice-chair.
Whilst I lack the ability to foresee the future, I am determined to make some sort of difference otherwise my life would have been without meaning and I would have failed in my own endeavours to inspire at least some of the people that I have meet on my journey. I have become the person that I am because of and in spite of my HIV status; I know that my life has been shaped by HIV and that though it has often been heartbreaking and challenging, I also acknowledge that it has also been an amazing and now continuing journey.
By Danny West – Coach, Trainer & Leadership Consultant
Email – email@example.com
Website – www.dannywest.co.uk