The day’s opening session heard a range of passionate presentations on the theme of getting your message across
‘I didn’t know how long I’d had hep C. I could have contracted it at any time in 30 years of active drug use,’ Phil Spalding of the Hep C Positive support group told delegates at Get The Picture’s opening session. ‘But the one thing that struck me when I first came out of rehab was that no one I came across professionally knew anything about it.’
This was ‘no fault of theirs’, he said, adding that there was also a great deal of fear around the subject. ‘I thought, “Why is no one talking about this?”’ He began doing voluntary work and attending 12-step groups but was keen to find out what he could do about his condition. ‘I had it about as bad as you can have it, with a very high viral load. I was pretty much ill all the time, and I didn’t want to die from something I could do something about.’
He got in touch with the Hepatitis C Trust – ‘who were great’ – and they helped point him towards a treatment pathway. Once on this, he and a friend from rehab began offering each other mutual support, out of which grew a very small support network based in his home town.
However he still wanted to know ‘what the big issue with talking about hep C was’, he said. ‘And we still have this issue where, if you have hep C, people will say, “Are you a drug addict?” Is that helpful? No, it’s bollocks. If someone has hep C we call them a patient, not a service user or a drug addict. We’re all patients, we all go to the doctor. As soon as I started to see myself as a patient then I started to feel more like part of the community.’
When he set up the support group one major issue he found he had to address was how to ‘get people to perceive it as a group where you could come safely, and not get your purse nicked’ he said. ‘It was a real opportunity to educate people.’ The group also provided a vital chance to have informed discussions about treatment and therapy options, he stressed. ‘People would say, “The treatment’s terrible – my mate told me”. I’d say, “When did your mate qualify as a doctor?” People didn’t even know the difference between screening and testing.’
The first thing the group did was to make sure that it was inclusive, he told the conference, open to patients, professionals, family members, carers and friends – ‘because our belief is that these issues affect us all’ – and with no barriers based on where people lived.
The group was now also working closely with a partner organisation in France, he said. ‘They have a shop in Strasbourg, right in the centre – no one has to creep around – and we’ve got plans to do something similar here. Why should this thing be a secret?’
He’d been determined to hold on to his voluntary principles and ‘stay independent for a purpose’, he said, but the value of the organisation’s work had led to it being commissioned. ‘We’ll come to your region,’ he told delegates. ‘We’ll support, educate, use the local media and television. The best thing we’ve found you can do is to talk about it.’
Next up were two more support group representatives, Lanre Babalola and Lindsay Oliver of Bubic (Bringing Unity Back Into The Community). Based in north London, the group was mainly aimed at ex-crack users, explained Babalola, and provided peer support, group sessions, family and friends workshops, volunteering, outreach and more.
It used a wide range of techniques including drama and role-play, he said, as well as a variety of different therapy disciplines, taking aspects of each and tailoring them to the group’s needs. Group and individual advice sessions included issues like relationships and co-dependency, families, boundaries and self-awareness, with all new members invited to attend group sessions aimed at challenging unhelpful ways of thinking. ‘Even if people don’t particularly care about the harm they’re doing to themselves, you can get them to look at the harm they’re doing to their community and their family,’ he said.
This was followed by a second phase of support that shifted the emphasis from drugs to improving self-awareness and self-esteem and developing emotional intelligence. ‘As an ex-crack and heroin user, I know from personal experience that the most important step in life is the one you take when you start to give back,’ he said, with the third phase designed to give service users the skills they needed to do that. This included opportunities for volunteering and working alongside members of the community, with Bubic gaining awarding centre status from Gateway Qualifications in late 2014.
‘We like to make sure all our clients feel included,’ said Oliver. ‘Everything’s accessible, even for people who’ve been disengaged from education for a long time. It helps people to maintain their motivation and their self-esteem.’
The organisation’s assertive outreach work also enabled it to access any part of the community, said Babalola, providing information, guidance, support and signposting to relevant services. ‘We walk on the street, we go and meet people – our own personal experiences have allowed us to recognise the importance of late-night outreach.’
Bubic also carried out inreach work in prisons, he said, with a particular focus on trying to ‘encourage emotional intelligence and self-awareness’ prior to release. ‘People get “gate happy” and the risk is they’ll go and use,’ he said. ‘But it doesn’t have to be that way.’
The next presentation was from Nigel Brunsdon of Injecting Advice, on the importance of photography in helping to get a message across. ‘We’ve got people who’ve died,’ he said. ‘We’ve also got our own heroes, people who are doing great things. We can use photography to highlight our achievements, celebrate the big personalities in our community, raise awareness of events and important issues – like the availability of naloxone – and promote change.
‘But it has to be us doing it,’ he stressed. ‘No one is knocking down our door wanting to take pictures of harm reduction, recovery, anything. We have to do it ourselves.’
The media, when it did use photographs, wanted images of people ‘overdosing in doorways’, he said. ‘We need to capture the narrative, and not allow the media to dictate it. You don’t need expensive equipment – everyone’s got a mobile phone, so you’ve got a camera on you all the time.’
Henri Cartier-Bresson had once said that ‘your first 10,000 photographs are your worst,’ he pointed out. ‘So keep taking photographs, and share them. Let’s make sure we’ve got a history for the next generation that’s coming along.’
The session’s final presentation was from three representatives of the Anyone’s Child and Recovering Justice campaigns, Jane Slater, Fiona Gilbertson and Suzanne Sharkey. The latter campaign aimed to create a voice for policy change, Gilbertson told the conference. ‘The war on drugs was never a war on drugs. It was a war on people.’
When she had been a 16-year-old heroin user in Edinburgh, the police attitude had been to ‘criminalise us’ while the media attitude ‘was that we should be left to die, or be put on islands’, she said. There had been no needle exchange facilities, and the three pharmacists in the city that had provided needles eventually stopped as a result of police pressure.
Edinburgh’s reputation as an Aids capital in the 1980s came about as a ‘direct result of bad policy’, she stated. ‘My partner died of Aids. I said to him, “you don’t deserve this”. He said, “I’m a junkie. I deserve everything I get.” That’s what happens when you treat people this way.
‘Our stories have power, and they’re not often heard,’ she continued. ‘Never underestimate the power of people to change policy.’ Current policies were inadequate and were killing people, she said, and her organisation had been working closely with Transform to show the harms the war on drugs was causing ‘to people like us and our families’. The war on drugs was not a ‘fair fight’ and never had been, she said. ‘People like us all over the world are caught up in this.’
‘I’m actually an ex-police officer,’ Suzanne Sharkey told the session. ‘I joined the police in Newcastle and was doing my bit, or so I thought – getting drug users and dealers off the streets. I thought that if we got you all off the streets there’d be less drugs, less crime. But I was naïve. I wasn’t helping the community, I was harming it.’
Her own drug use eventually led to her being arrested, she told delegates. ‘But it wasn’t the arrest that helped me, it was the people I met in recovery. We need to change policy, and we need your experiences, your voice. Because without reform people are going to continue to be stigmatised and marginalised.’
‘We’re wasting a hell of a lot of money on a counter-productive and futile policy,’ agreed Jane Slater of the Anyone’s Child campaign. ‘I work for Transform and we tend to produce a lot of heavy, evidence-based texts. But what we need to do is tell the human stories.’
The campaign had been mounting events and trying to get media attention and engage with politicians, she said. ‘We’re also going international, because this is a global issue. Prohibition is not the solution. We urgently need a new approach.’