From the mid-1980s to the mid-1990s, the HIV virus swept through Edinburgh and the Lothians; by 1988 the area had an AIDS infection rate of seven times the national average.
In 1986, Muirhouse GP Dr Roy Roberston linked HIV transmission and intravenous drug use. As hostility to already marginalised groups – particularly IV drug users – increased, communities responded. People came together to overcome stigma, ignorance and neglect. Some were the families and friends of sufferers, some were simply concerned individuals who saw the need for care and support rather than fear and prejudice.
In 1989 the charity Waverley Care was founded, and it is now Scotland’s leading HIV and hepatitis C charity. An exhibition at the National Library of Scotland, Blood, Sweat and Tears, tells the story of HIV and AIDS in the Central Belt, and the ways in which Waverley Care – and others – set out to help the victims of this terrible disease, to raise awareness, and ultimately to influence national policy around sexual health and blood borne viruses.
Waverley Care opened its flagship centre Milestone House, the UK’s first purpose-built AIDS hospice – in Oxgangs on 25 January 1991. The situation was challenging; people were having to deal with a new illness while trying to cope with addiction, grief and stigma. Waverley’s approach was – and remains – person centered;
‘Everything we do is guided by the experiences of the people we work with.’
A flexible, non-judgmental, experimental approach recognised the complex needs of the residents. Instead of thinking they knew best, the staff and volunteers asked people,
‘What do you need?’
Other community groups followed their lead. Some of the most disadvantaged and ignored voices in society were being heard at last.
The exhibition includes the original plans for Milestone House. It had bungalow-style apartments for each resident, all with French doors leading into the garden. Pets were welcome, chickens were kept, sculptures were installed in the grounds. Creativity flourished;
‘I just remember loads of different workshops…there were sleep, relaxation, stress, drama workshops, art workshops…’
Among the exhibits are two huge glass mandalas made by art therapist Gary Smith with relatives and friends of those who had died, and originally hung in the Solas CafĂ© in Edinburgh, an HIV/AIDS advice and drop-in centre. The panels include a lighthouse, a candle, and Henry Scott Holland’s poem “Death is nothing at all.”
In Gaelic, solas means light.
Local community action spread across Scotland; on show here are posters for fundraising comedy nights at the Edinburgh Playhouse, Stonewall’s A Show for Glasgay (stars included Ian McKellan, Michael Cashman and Simon Fanshawe) at the Citizens Theatre and an exhibition of the Names Project Quilt at the Solas Café. Pop stars held benefits – Annie Lennox performed at Red Hot + Blue (and continues to campaign to increase HIV-awareness worldwide.) In October 1991 Princess Diana visited Milestone House.
But despite all this positivity, the media – and some politicians – continued to push a sensationalist, homophobic agenda. Also on display in the exhibition are newspapers with headlines ‘Row over AIDS alert to Africa medics’ and ‘Junkies export AIDS around Europe.’ And although effective medication is now available to reduce an HIV-positive person’s viral overload to almost nothing, enabling them to lead long and healthy lives, the exhibition points out that AIDS continues to decimate third world countries, where sufferers are victimised, ostracised and scorned.
The battle is not over. Waverley Care now offers preventative rather than palliative care, and aims to play a major role in Scotland’s plan to achieve zero HIV transmission by 2030.
Perhaps the most moving things in this sobering, yet ultimately life-affirming exhibition are the recorded voices of people who were involved in Milestone’s House early days.
Brian, a trainee priest in the early 1980s, tells of a fellow ordinand who refused to take Communion in case he caught the virus from the chalice. Brian later joined a street project to help IV drug users, one of the highest at risk groups. He eventually left the priesthood to devote all of his time to this work.
Sarah recalls how little help there was for HIV-positive women; at the outset they had to seek support from the services set up for gay men;
‘But this became uniting; gay, drug and women’s communities came together.’
Ruth, who worked at Milestone, describes the experience as “a huge learning curve”:
‘I learned how awful most drug users’ lives had been…abandonment, abuse, neglect. They never expected much out of their lives. Milestone House gave them a sense of safety, a place where they could be at home…the ethos of the place was creating that sense of safety that they’d never had as kids…..Willy, (an addict who visited Milestone House several times before eventually dying there) said “I had no idea that places like this could exist” – he never believed that people could genuinely care for him.’
Visitors to the exhibition can sit and listen to these recollections beside a wall painted with a tree on which people are encouraged to hang notes of memories and hopes. Someone has written;
‘Everyone is worthy of love and respect.’
Waverley Care, along with the Terrence Higgins Trust, the Glasgow Bars AIDS Welfare Fund, and many others, gave people that love and respect when they needed it most.
Blood, Sweat and Tears: Scotland’s HIV Story is at the National Library of Scotland, George IV Bridge until 2 December 2023. Admission is free, and the library is open 9.30am to 7pm on Mondays, Tuesdays and Thursdays, 10am to 7pm on Wednesdays, and 9.30am to 5pm on Fridays and Saturdays. (NB: Closed Sundays.)
