The 15th DDN conference, Many Roads, kicked off with a powerful session on challenging stigma.
‘We’re making the statement that whatever our background, our beliefs, our lifestyle, the stage we are each at – we’re here because we value the dialogue between us all,’ DDN editor Claire Brown told delegates, as she explained the theme of this year’s conference – Many Roads.
For decades, organisations and initiatives had been working to tackle the stigma directed at people who used drugs and some who used alcohol, said chief executive of Phoenix Futures and co-chair of the Anti-Stigma Network, Karen Biggs. ‘It’s no longer socially acceptable to stigmatise people with mental health conditions or people who’ve experienced domestic violence, even though we know that still happens.’ Attitudes to people who used drugs, however, hadn’t changed.
There were constant examples of overtly stigmatising language across the media, health and social care, and policy domains – almost all of which went unchallenged, she stated. ‘If we’re to make real progress in helping people whose lives are impacted by addiction, we need our governments, our media and our public servants to understand stigma, how it’s created, and the pernicious effect it has on so many people’s lives.
It was a process that would take time and commitment, she said. ‘We all need to act against stigma and ensure that our work doesn’t inadvertently or purposefully perpetuate it.’ Establishing the Anti-Stigma Network had involved talking to people with direct experience of stigma, service providers, academics and others. ‘Our mission is to end stigma,’ she stated. ‘Some people say that can’t be done, but our view is that our ambition can’t be anything else but to end the discrimination that limits the opportunity to thrive in life, that creates inequality, and takes away people’s basic human rights. We’ll do it by collaboration and co-production – we won’t always be right, we’ll make mistakes, and we hope to be able to learn together.’
The approach was rooted in lived experience, she said. ‘We’ve worked with people with different life experiences of stigma to help us create the network, from the initial idea to the aims and the branding.’ The stories on the network’s website were about people, she stressed – ‘drugs and alcohol are a feature, but they’re not the story.’ Instead they were about lives, experiences, journeys and barriers faced. ‘We believe this is a powerful way to educate people about what stigma is. It’s the shaming, the prejudice, the discrimination people face in accessing health, housing and employment, and it’s the policies and procedures that make it difficult for people to create the life they want.’
Membership of the network currently stood at around 400 individual members from a wide range of sectors, she said, with an organisational membership due to launch soon. ‘We started with a personal membership because – as with any anti-discrimination initiative – this takes a personal motivation and an individual set of values to truly commit to.’
In establishing the network she’d frequently been asked, ‘what makes you think this will make a difference?’ she said. ‘The question for me is bigger than that – it’s why this, why us and why now? Well of course the answer is that the right time to do this was a long time ago. Maybe we wouldn’t be in the situation we are now, with the highest ever number of people dying from a preventable condition.’ In some parts of the UK, even with the new drug strategy, this showed no signs of improving, she pointed out. ‘But we know more now about what approaches work. The next level of progress will be when we create something bigger together than we can do on our own. We’ll learn how to do this as we go, and we’re a broad church – with different life experiences and values. There are indeed many roads that have brought us together, and that gives us a massive canvas to address the many forces that create stigma. It’s about our personal openness and commitment to our anti-stigma role.’
The network’s starting point for naming, understanding and calling out stigma was the health and social care sector, she told delegates – including drug and alcohol treatment. ‘We all have examples of how services and pathways stigmatise people.’ Alongside structural stigma, this was also down to individual assumptions and actions, she stressed. A recent report into women’s experiences in the North East of England found that 64 per cent of women looking for help for domestic violence, substance use or homelessness had experienced discrimination from practitioners, she pointed out – ‘the very people they were looking to for help. So we’re calling on all of us to get our own house in order, which will give us the strength to tackle the wider societal and structural stigma which will be critical to our success.’
When it came to women’s treatment, the Dame Carol Black review – while a welcome and valuable document – didn’t focus enough on the specific needs of women, said Hannah Shead, chief executive of Trevi, a partner in Collective Voice’s Women’s Treatment Working Group. ‘As 52 per cent of the population, sometimes our needs aren’t thought about in a specialised, specific way. We can sit and talk about this stuff for ever, but we need to see things change.’
The working group was interested in the views of both women who used services and those ‘who don’t come to our services, because they don’t feel it’s safe’, she said. ‘Women who won’t reach out for help because of the stigma, and because of the way our services work.’
‘Society judges women who use drugs more harshly than it judges men, and it judges them pretty harshly,’ April Wareham, director of Working With Everyone, told delegates. ‘Even among people who use drugs, women are judged more harshly. Women who use drugs feel that men see them as sexually available, just because they happen to use drugs. Women have told me that there was an assumption that they were sex workers even when they weren’t.’ And mothers who used drugs were subject to particularly harsh judgement, she added. ‘I’ve heard of women being told by hospital staff just after having a miscarriage that “it was probably for the best, wasn’t it?” For most mothers who use drugs that I speak to there’s a massive fear of getting help because they’re scared they’ll lose their children’ –and of course mothers who lost custody of their children were judged more harshly still.
At a recent women-only workshop she’d been involved in, all ten participants reported being survivors of domestic abuse, physical abuse and emotional abuse – ‘with a side order of gaslighting’, she said. Eight out of ten reported financial abuse, sexual abuse or sexual assault from an intimate partner. ‘You talk to women and they’ll say, “I thought this was normal”.’ Women were reluctant to ask for help for domestic abuse, fearing they’d be blamed because they used drugs, she stated.
‘Back when I was using treatment services I saw a guy outside. The last time I’d seen him he’d been holding my sister-in-law by the throat, so I didn’t go in. I speak to women all the time who are told to go to a treatment service or they’ll have their kids taken away. So the choice is to go to a service where you don’t feel safe or to have your children taken. You’re damned if you do, and you’re damned if you don’t.’
Most women reported that they’re weren’t offered the choice of a male or female key worker, she continued, and would not talk about issues like abuse to a man. Many areas also didn’t have women-only fellowship meetings, and any female attendees could often be the only woman in the group. ‘I hear from women who are terrified that there won’t be a woman available to sponsor them.’
Women felt that there were defined gender roles in the drug world, all the way through to recovery, she said. ‘I remember user involvement groups in the NTA days – when I agreed with the men I was a princess, and when I disagreed I was a bitch. I still go to events now where I’m asked to write my name, phone number and email address on a piece of paper that will then be passed around the room. I’ve experience misogyny in the addictions field, and been told that I hadn’t. Part of me is back there picking myself up off the floor from where a man who told me he loved me had knocked me down, being told it wasn’t domestic abuse and besides it was all my fault. Women’s lived reality and lived experiences are still being minimised and denied. It doesn’t go away.’
Society was structurally and institutionally sexist, so it was little surprise that treatment services had been designed around the needs of men, she said. ‘Whether they meet men’s needs or not is a discussion for another day, but time and time again I hear women telling me that this one size doesn’t fit anyone.’
Sometimes doing the smaller things could be the beginning of significant changes, said Hannah Shead – ‘creating women-only spaces in your services will start to show to women that there’s somewhere safe. Think of those small changes you can make, and have the courage to make them. And when we’re delivering, designing, planning, let’s think about the women in our services – and think about the women who perhaps aren’t coming to our services because of the way we design and plan them.’
Callie Davidson, programmes coordinator at Safe Ground – a national organisation that delivers arts-based group work to people in prison and community settings – then shared the experiences of stigma among people the organisation works with. ‘We know that are participants are capable of far more than they’re given credit for,’ she said.
Her organisation was concerned with ‘the stories we tell ourselves, the stories we tell one another and the stories that are told about us,’ she said. Concepts of identity and relationships were central, and participants were encouraged to reflect on, and learn from, their own lives.
‘We work hard to create a space in which biases and preconceptions are acknowledged and interrogated. But the goal of our methodology and the way we approach our work is to make room for participants to be themselves. So I want to encourage you all not to wait for an annual conference to invite people’s stories. Every day we’re presented with the opportunity to hear people’s stories and discover the wealth of experience, creativity, reflections and ideas they have to offer. When we give people the time and space to tell their own stories on their own terms, we can begin to deconstruct the stigma they encounter.’
Video by Paolo Sedazzari and photography by Nigel Brunsdon, Jellypics and images submitted by delegates.
Read coverage of session two and session three.
Useful Links:
Subscribe to DDN Magazine via email or a free printed copy for your organisation: www.drinkanddrugsnews.com/ddn-information
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Session speakers
For more information on the Anti-Stigma Network, or to join: www.antistigmanetwork.org.uk/about-anti-stigma-network
Find out more about the Women’s Treatment Working Group: www.collectivevoice.org.uk
April Wareham, Working with Everyone: twitter.com/workingwevery1
Safe Ground: socialinterestgroup.org.uk/our-services/safe-ground/
Trevi, award-winning women’s and children’s charity based in South West England: trevi.org.uk
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Other useful links
Anna Millington can be contacted on: annaddition@gmail.com
Emerging Futures, cup cake makers extraordinaire! Also a charity working to support people affected by homelessness, drug and alcohol problems and physical and mental health needs: www.emergingfutures.org.uk
neo360 provide comprehensive harm reduction monitoring and reporting solutions: neo360.co
The Hepatitis C Trust is a charity dedicated to eliminating hepatitis C in the UK by 2030. Find information and support about the virus here: www.hepctrust.org.uk
Intuitive Thinking Skills: Empower individuals and build personal resilience via mentoring, accredited programmes and through highly innovative IPS services in communities, prisons, schools and via our digital services: www.intuitivethinkingskills.co.uk
Phoenix Futures is a national charity providing both community and residential services: www.phoenix-futures.org.uk
Red Rose Recovery: Lancashire based peer-led organisation supporting individuals and creating opportunities for people affected by substance misuse, mental health and offending behaviours: redroserecovery.org.uk
Tom Harrison House, specialist addiction recovery programme for UK Armed Forces veterans and emergency services personnel: tomharrisonhouse.org.uk
Yeldall Manor is a residential drug and alcohol recovery centre near Reading offering a healing community with a holistic approach for men struggling with addiction: yeldall.org.uk