Re-Writing My Story: From Darkness to Light
“The work that one does is a way of keeping a diary”
This blog will reflect a bit on the early days and how this has informed my work. This is my last day of paid work in the Sexual Health and HIV sector. As you may have seen from my last blog it is time to give myself a little break after 20 years of working in the sector. I will still be doing some volunteer work in the sector. Reflecting on 20 years of paid work and volunteer work within the sector, it is not the same place it was all those years ago. What I have noticed is that much smaller pockets of the marginalised communities affected by or living with HIV need ongoing HIV support on a day to day basis. A lot of the work we do with clients is also about giving them the real picture of where HIV is today, that it is thankfully a long-term chronic condition and that no we are not in the height of the AIDS epidemic where you would be a priority for any Public Service or indeed emergency housing. But you still let them know that you will be there whenever they need you, particularly to those either newly diagnosed and those now aging with HIV.
Let me rewind a bit and look at my early sex education. I remember my father handing over to my brother the ‘AIDS: Don’t Die of Ignorance’, leaflet produced by the UK government in 1987, to read as part of his sex education. At school my sex education was the Adam and Eve story in Religious Studies, a 1970’s film of a flower being pollinated & a very embarrassed tutor demonstrating how to put a condom on a banana. Within Religious studies we were told that masturbation was the waste of a life and our duty as Jewish people was to ensure there were many generations in the future. PSHE did not offer the information I needed as a then gay boy and certainly did not support me to have the skills I needed to navigate through my later sex life. In my family, my sister took on the responsibility to ensure I knew all she had found out about sex and relationships. Aged 14, I found my parents copy of the Joy of Sex & my sisters copy of Forever by Judy Blume both I remember reading with confusion and excitement. At the time when I started to realise I was gay, my sister and the rest of my family did not know about me then starting to identify as gay and having gay feelings. After I left school my early career was as a chef and working in the hospitality and catering industry. This was the time I could break free and explore my gay identity.
I recall going with first partner Mark at the young age of 16 standing outside the House of Commons in 1994, when the age of consent was lowered from 21 to 18. I remember walking away that night with a feeling of numbness knowing that the sex I was having with my partner was illegal. Going home to my family knowing I needed to keep a part of myself a secret. I entered the sector a few years after we had started having HIV medication that worked, a few years after my first partner Mark died from HIV in 1997, a lot of my initial motivation to work in the sector came from the loss of him and other close friends at the time. I wanted to make sure that no one else died alone and feeling angry around how our community faced so many inequalities. I have spent most of my early adult life in this sector and it feels timely to now move my career in a new direction. 20 years on we continue to have difficult conversations around sexual health. We have worked together as a community to ensure that those that need access to treatment as prevention Post Exposure Prophylaxis treatment (PEP) and those that may have put themselves at risk of HIV have access to and knowledge of and Pre-Exposure Prophylaxis (PREP). Although, access to PREP is still limited, it feels like we are moving in the right direction. We continue to work together to breakdown stigma through U=U so people know that those on treatment can not pass on HIV to others.
About a month ago I went to see After 82 (2017), Directed by Steve Keeble and Ben Lord, the documentary that tells the untold story about HIV/ AIDS, it reminded me a lot of the early days of HIV/ AIDS. The film reminded me a lot about my early work in the sector, it raised huge questions about race, class and intravenous drug users that were the missing link in the documentary. As the epidemic could be the one thing that brought these communities together. My initial volunteer work started in 1998, it was providing outreach support for the then Healthy Gay Living Centre. Imagine, at age 20 years old, I worked with colleagues having an outreach stand and trying to talk to gay men twice or three times my age about how to look after their sexual health. “Section 28 was a law that made it illegal to talk positively about homosexuality in schools. This meant that teachers were not able to support lesbian, gay and bisexual students or provide resources about different sexualities. The law came into force in 1988 and it wasn’t until 2003 that Section 28 was repealed” (Stonewall UK). In 2000, when the age of consent was finally lowered to 16, I stood in front of an assembly of 300 young people talking about homophobia. Due to the confusion around the act all the teachers left the assembly, leaving me and a security guard to work with the 300 young people. A lot of our work in the 90’s and 2000’s was campaigning around our equal LGBT rights and the Equality Act 2010 came towards the end of a lot of hard campaign work.
Thank goodness times are changing and from next year all schools will need to have an LGBT inclusive PSHE curriculum and this has pushed faith schools to be more inclusive like it or not, but there is always an opt out. I am grateful to Mosaic Youth Project, ELOP, The Metro Centre and River House Trust, they all provided me the opportunities to build my skills and develop professionally whilst I worked for them. Over a 5 year period with fellow LGBT Youth Workers in London we went from just being able to fund a PA system to a luggage trolley, to funding a large scale float and having two weeks of activities across London for young people at London Pride (2003-2008). One of my proudest moments has been being invited to speak about ‘Managing Difficult Feelings’ at the Happy Life Conference in Taipei, in 2011, Taiwan on a panel from local NGO’s and to an audience of 100 people.
Like every other sector the Sexual Health and HIV service has seen sizable cuts and sometimes it is a postcode lottery whether those living with HIV will have access to a local HIV Service. This not only requires services to be innovative in how they gain access to those living with HIV in their funded boroughs, but it also requires people living with HIV to access their local HIV service and to have honest conversations about what needs can be met in this financial climate.
The days of sitting in clinic, in your office or in your community centre waiting for people to come to you are gone, the sector requires us to meet clients where they live, work or socialise. This also relies on those most at need of HIV support having the internal resources and resilience to seek out the support. Often these are the clients that are not adhering to their medication regime, have issues around attending appointments, having lifestyle issues such as drugs, alcohol or facing domestic violence, and due to stigma around disclosure they may have complicated lifestyles. Having online support is great, but we are dealing with marginalised communities some of whom English is a foreign language, some are sitting on the poverty line and lack access to computers, and some have unmet learning support needs so may not have the literacy skills needed to access online support.
Often services are not set up to support clients comorbid and psychological health needs. Due to funding restrictions commissioners and service managers are more interested in bums on seats in clinic, than the quality of the support and care package provided. Often, also overlooking the well-being needs of staff and volunteers in the process, staff are expected to deliver full-time functions of a job in part-time hours, where staff face burnout and care fatigue. The ideal picture in London, would be for all the London HIV Services to come together set up a consortium and distribute funds evenly so there is less competition and duplication of work. The work becomes less about what the communities’ needs are and more about saving money. There must be better ways to harness the needs of the communities living with HIV or accessing Sexual Health Services, so they can play their part in shaping these services going forward.
As I shared in my 40th speech earlier this year: “In my first career as a chef, in my training it was important to get each cut of vegetable just right. As each cut has a name that you had to learn. You had to work hard, often I was shouted at by my lecturer, had saucepans thrown at me in the kitchen and got called peasant for not getting it just right. The important thing was that you could not move on to the next exciting stage of creating basic sauces until you had perfected these skills. As a therapist the first thing you learn is how to really listen, you then learn how to empathise and paraphrase. From there you go on to learn the core conditions of unconditional positive regard, empathy and congruence. Until you have perfected these qualities you can’t move on to the next level where you learn how to support clients. Erik Erikson, Developmental Psychologist believed that our developmental stages are present at birth but only begin to unfold according to both a natural scheme and one’s ecological and cultural upbringing. In each stage, the person confronts, and hopefully masters new challenges”.
Reflecting now, I am thankful for the opportunities the sector has provided me, the clients I have supported and the great people I have worked and volunteered alongside. I will still be around but mainly with my Counselling and Supervision hats on. It has been a real journey from darkness to light. Thank-you for the music that you brought in to my life.