Earlier this year BANES Carers’ Centre commissioned us to deliver a package of content including stories, film and photography. It was during this filming we met Mike and Tom who welcomed us into their home and shared their story with us.
To mark World AIDS Day, we asked Mike if he would tell us about Tom’s diagnosis, their advocacy and public speaking work and why they chose to share their life story.
Falling in love
“Tom and I met in 1975, we were both 19 years old. I was living at home with my mother, Tom had just returned from the merchant Navy to work in a gift shop in Carnaby Street. Tom had left his family in Glasgow about a year before.
We met at a tea party organised by a group (Icebreakers) seeking to provide support to young gay people. It was at a time when being openly gay was very challenging. We fell in love almost immediately and after dating for a few weeks we decided to find a flat in south London to spend our lives together. As we were both 20 years old (under 21- the legal age consent at the time) we were living in an illegal relationship. It had only been eight years since the decriminalisation of homosexuality in the UK (1967).
Many years later in 2006, Tom and I entered into a civil partnership. In 2016, we had our civil partnership converted into marriage. This was as much to affirm our love and commitment publicly to one another as it was to secure legal, financial and welfare control over our joint affairs.
In 2003, Tom contracted HIV but remained very well on medication. In 2008, Tom began to develop cognitive issues, which eventually led to him retiring early from work in 2011. I continued to work but grew increasingly concerned about Tom’s behaviour and safety. In early 2014, after much consideration, I decided to retire to look after Tom full-time. Even at that point we had no detailed diagnosis of his condition. Eventually, in March 2016 following an assessment by our neurologist, Tom was diagnosed with HIV Associated Neurological Disorder (HAND). We subsequently moved nearer to family and a larger home to enable extra care and support for Tom so after 42 years of living together in London, we left the City in July 2018 and are now living in a small village in Somerset.
Soon after Tom’s diagnosis we were invited to a number of dementia support groups. These became key opportunities to share our story and to listen to others. Importantly, for us, it was also our stepping stone to network with proactive people in the dementia community. Through these contacts we were invited to share our story on national media as well as invited presentations at universities, hospitals and care-homes, etc, and take part in research and advancement of dementia through charities and main-stream national dementia projects. To a great extent this is because our circumstances were less common than others. Being a same-sex couple in this situation, from our experience, proved to be relatively rare. As a result I have advocated for Tom and for people with HAND in organisations like the Terrence Higgins Trust as well as HIV clinics. Not only were we experiencing something rare (both the disease and being a same-sex couple) I felt a responsibility to reach out to other people in similar circumstances.
Anyone experiencing dementia who is LGBT, is statistically much less likely to be in a long-term supporting relationship. They may not be well understood by health and care providers and, additionally, many LGBT people have been alienated both from their families and society at large (this is changing but is a common experience of older LGBT people). It is important that people talk publicly about their experiences. A similar level of misunderstanding and prejudice is often experienced by HIV+ people too.
I researched very hard for a very long time to find similar couples to us. Although I could find written material, reports from authoritative sources on the impact of dementia on LGBT people, I couldn’t find anyone who was in the same situation as us, or who are prepared to talk publicly about it. Because of this, I felt it was crucial that we at least start this process. It is now well recognised that there is a cohort of older LGBT people (estimated 56,000 lesbian and gay people in the uk with dementia) increasingly needing care and support services who have been ‘open and out’ all of their lives and it is widely accepted that support services for people in these groups are not ready for this influx into care.
Telling our story
Each of our experiences with media, charity and public speaking events has usually begun with a themed topic. That can limit the extent of issues that you may want to raise or you believe is important. To get your message across, it’s important to have time to think about the key issues you want to raise and that may mean straying off of the question you were originally asked in order to cover that issue. For me, I have always tried to bring in the most important fact about our story which is our long-term loving and committed relationship. Loving and long-term LGBT+ relationships are rarely reported and acknowledged in mainstream media but this is more common than most people believe.
Without question, the most surprising aspect of this entire journey has been how each experience of telling our story as so often led to further opportunities to tell our story. At the beginning of this entire process I would have found it hard to believe that we would have been invited to take part in television, radio and podcast events as well as charity fundraisers and care-home management training events.
I have spent most of my adult life as openly gay but still affected by a sense that I might not be accepted in every situation. Having undertaken this work, I discovered just how much love and affection there is which has far exceeded my long-held (and inaccurate) beliefs. Each media event has increased my confidence and sense of belonging, but particularly, it has validated our relationship and made it easier to stand firm and confidently to advocate for Tom.
One of the benefits of storytelling is that there is nothing better to crystallise the mind and define the most important issues. It has enabled me to better understand our situation and therefore better support my partner.
Often when we’ve had public events where we have shared our story, post event, very often I’m approached by people who give me knowledge and information about how to access information and resources that have helped us.
Being able to tell our story has reinforced our sense of belonging and influence. Without doubt, there is a powerful positive outcome from storytelling which comes from the hope that what you’re doing may be helping others and also gives a sense of normalisation, validation and strength to carry on.
I have always found it important to keep close to mind not just our personal story but how a particular charity has aided us or helped other people in similar situations. I’ve always found that being asked to make public our situation in interviews and fundraisers, for example, that we are chosen even though we are from a minority group.
Getting interview ready
Those events we are asked to speak at might actually get better representation during an interview for their organisations if they prepared a short brief on things that they would like the storyteller to cover. In my experience of working in public service where I would speak about what our organisation was doing, there will be a very clear plan to make sure that critical issues and mission statements were covered. Whilst I appreciate that this could be challenging in some situations the benefits to the charity and those hearing the stories are potentially significant.
I would also suggest giving the storyteller an opportunity to have a cold run on the interview with pre-agreed questions or themes although encourage spontaneity where possible.
Also, plan for your interview, make a very brief note of the key issues you feel are important to raise and if possible raise the key points prior to the formal interview/recording. Think also about issues or personal information that you may not wish to share and don’t be afraid to ask for that information not to be published.
Take a good look at information packs and website of the charity that you’re connected with for the talk and tried to emphasise the importance of that charity in your situation.
Be aware that imparting your story can raise emotional issues and that’s fine if you’re comfortable with that. Bear in mind too that stories that have deep personal elements will have a greater impact on readers/viewers and ultimately a greater chance of mustering support and changing things for the better. Charities run on goodwill and funding by many people. Personal stories can galvanise action, purpose and increase chances of survival and commitment: they may also tell the charity how well they are doing and possibly what they may need to consider changing or enhancing.”
Our huge thanks to Mike and Tom for sharing their story with us.