Introduction by Croakey: People with lived experience of addictions sent powerful messages to politicians, health systems and professionals, the media and the wider community at a groundbreaking conference in Canberra this week.
The inaugural #RethinkAddiction conference privileged the voices of people with lived experiences in its campaign to address big gaps and barriers in treatment and care, Marie McInerney reports below for the Croakey Conference News Service.
See these Twitter threads of the opening and closing sessions, including keynote speeches from 2022 Australian of the Year Local Hero Shanna Whan and singer and TV personality David Campbell, son of rockstar Jimmy Barnes.
Croakey will also report in following stories on dedicated sessions involving Aboriginal and Torres Strait Islander people and on criminalisation and addiction, as well as discussions on harm reduction and better treatment pathways.
Marie McInerney writes:
Hundreds of people gathered in Canberra this week for a conference that flipped the usual proceedings and power dynamics. Too often people experiencing or affected by health issues are on the sidelines, in the background or completely missing in major health gatherings.
But people with lived experience of addictions took centre-stage at this week’s inaugural #RethinkAddiction convention, titled ‘It’s time to change the conversation’.
They were not just token voices on panels stacked with ‘experts’ as seen at many conferences, but the main voices in session after session of the two-day event, their expertise, knowledge and experiences privileged and valued.
In heart-breaking detail, they told raw and powerful stories about addictions to alcohol, other drugs, and gambling which took many to the brink, facing suicide, prison, financial ruin, the removal of children or – in the case of Australian of the Year Local Hero Shanna Whan – waking up in Emergency after falling down a concrete flight of stairs.
As well as showcasing their courage, strength and commitment to others, they took strong aim at the structural barriers they have faced in their recovery, including government, industry and media, and a fragmented and flawed health system.
Among the audience were health and service professionals, academics, policy makers and researchers – there to listen and put up their hands to ask the questions.
“I don’t usually cry at conferences,” said Selba-Godoza Luka, founder and CEO of Afri-Aus Care, who campaigns to end family violence and implement culturally appropriate and safe NDIS services for African Australian communities. Like many others on stage and those attending over the two days, Luka was holding back tears as she told her story.
Telling the “real stories of addiction” is what the Rethink Addiction campaign and coalition believes is critical to transforming treatment and care of addiction in Australia, where up to 500,000 people each year go without support. These stories are also key to ending stigma, the campaign’s guiding principle.
“I’ve gone to many conferences over many years and invariably I’m on the stage,” said Professor Alison Ritter, a leading drug policy researcher and Director of the Drug Policy Modelling Program (DPMP) at the University of New South Wales, after the first day of the event.
“It’s a real privilege to not be on the stage, to listen for a whole day to people’s stories, [to witness] huge amounts of courage….Real bravery,” she said.
Shame and stigma
Angelene Bruce, whose Twitter handle is FASD Warrior Mum, told #RethinkAddiction with searing honesty about her pathway to addiction with pokies and alcohol.
Born into a middle class, supportive family, her world was shattered at the age of eight by a “significant trauma from a person [she] loved and trusted”, which became an “invisible backpack” through her life.
Her traumatic experience and its ripples echoed the stories of many of the other speakers, whose addictions were sparked or exacerbated by sexual assault or abuse, family violence, other trauma, racism, homophobia, mental health issues, toxic environments and poor health care.
Each had their own stories and calls for action on better treatment and policy: to address long waiting times for detox or rehab beds, the need for culture at the heart of support for Aboriginal and Torres Strait Islander people, and better informed health professionals, through to action on Australia’s “booze-worshipping environment” and “government-sanctioned abuse” that permits predatory industry practices in gambling.
And over and over they spoke to the importance of connection, “a kind word, compassion, lack of judgement” and an end to the shame and stigma that causes huge, often intergenerational distress, compromises healthcare, and stops so many people with addictions, and their families, from seeking help.
Bruce told the conference that her negative inner voices, her “itty bitty shitty committee”, quietened when she drank. “Alcohol was my friend, til it wasn’t,” she said.
After many attempts at detox and rehab, she became pregnant at a time when she was a “24/7 top up drinker, not drinking for fun but to beat withdrawal”.
At her first pre-natal visit, she told her obstetrician/gynaecologist she had been in recovery but had relapsed. His response, ignoring the risk of sudden withdrawal from alcohol to her and her foetus and offering no other support, was to tell her she “must stop” immediately.
“That is terrible advice to anyone drinking 24/7,” she said. Also fearing her child could be taken away, she did not disclose again, not even when her son, who was later diagnosed with Fetal Alcohol Spectrum Disorder (FASD), “was in big trouble as he was being born”.
“I didn’t tell anyone in the room that he was withdrawing because I was withdrawing.”
Bruce, who has detailed her story in this podcast, says few outside of the field of FASD talk about the condition despite its prevalence, “because it involves alcohol consumption in pregnancy and that makes everyone a bit uncomfortable, including health professionals, politicians and everyone in between”.
“That discomfort creates stigma and shame which stops women like me disclosing alcohol abuse during pregnancy and getting the proper help for their children,” she said.
It’s shame also that kept Kate Seselja (see more of her story in our preview) trying to fix her pokies addiction on her own, taking her close to suicide. She thought her experience “had disqualified [her] from being worthy of anything: love, trust, value, compassion, forgiveness, understanding”, until she learnt that she was yet another victim of a machine designed to addict.
Shame and stigma are also debilitating for the families of people with addictions, the conference heard, and long kept Anne Iversen from seeking help.
“I was suffering from guilt and shame as well,” she said.
In her early days, she had a self-help library “that was bigger than any regional library”, because she didn’t want to tell anyone else in her family or friends what she was experiencing. “Even to talk to a doctor about it was difficult,” she said.
Iversen, who became involved with Self Help Addiction Resource Centre in Melbourne, spoke simply about the need for connection and informed support.
After managing family addiction over three generations, she didn’t like what she had become, but finally learned “about being able to remain connected, loving, compassionate and caring but also to set boundaries so that things could change that were affecting me in our home”.
Since then she has worked in family drug support, sitting in “hundreds and hundreds of meetings with thousands of families, talking about their situation”.
“And the one thing they all say when they come to their first meeting is ‘We’re not alone, (we’ve) just felt so isolated and alone and stigmatised all this time. But now we’re not alone,” she said.
“I think that’s exactly what this convention is about: taking the stigma and shame out of it,” Iversen said. “Because when you’re trying to do it all by yourself, it literally sends you crazy.”
Informed, integrated and safe care
Other speakers also talked about the pivotal role – negative or positive – of a particular health professional or service at a particular time, proving the need, as one participant put it, “for quality, well-trained, informed people who understand addiction so we can change life trajectories earlier”.
Asked how GPs could improve their practice, gambling reform advocate Anna Bardsley talked about one doctor, told by a patient that she worried she had a gambling issue, who responded he could empathise as he was “addicted to chocolate”.
“And so the conversation closed,” Bardsley said, urging GPs to have gambling on their radar, to seek to have a number of conversations because people won’t necessarily disclose in the first one, and to know where to refer people.
“If we don’t even know that gambling addiction exists, then where do you start?” she asked.
For Andrew Addie, it was a “queer-friendly GP” and “LGBTQ+ affirming care” that finally made the difference after years struggling with a dual diagnosis of alcohol addiction and mental health issues.
Introducing himself at the conference as “a surf life-saver, a pole dancer, competitive ocean swimmer and an openly gay man”, Addie talked about starting drinking at 13 as “very normal” where he grew up in Cairns, in far north Queensland, and how “things escalated pretty quickly”.
Coming out as gay and experiencing “some pretty gross homophobia” was tough, and his mental health issues “did not combine well” with heavy drinking.
Addie had many interactions with the health system. Some were very unhelpful, including one crisis visit to an Emergency Department, where he waited eight hours to see a psychiatrist who was “noticeably distracted”. “I got really embarrassed and I left,” he said.
At another appointment, a mental health professional was unaware of the HIV prevention medication Addie takes and informed him wrongly that he was HIV positive.
His life changed when he found a safe and informed space, a specialist alcohol withdrawal management clinic in Sydney, to open up about his issues. “It was just such a relief and within a week I was planning how I was going to kick booze”.
Addie finally got lucky but he said too many still miss out: “we know the statistics about difficulties in accessing support for people from regional areas and LGBTIQ communities”. He acknowledged there were significantly more barriers to recovery for other members of the LGBTIQ+ community, particularly those who are trans, non-binary, or intersex.
Asked by the conference moderator, ABC broadcaster Jon Faine, what gave him the courage to address his addiction and to speak up and take on leadership roles, Addie talked about his involvement with Untoxicated, a volunteer network of about 9,000 “sober and sober-curious people” who want fun, booze-free things to do on a Friday and Saturday night.
It was part of being prepared to “snatch the microphone” to change the story on addiction: “You can’t be what you can’t see.”
Toxic cultures and sectors
Anna Bardsley said her courage came through connection – “being with other people, hearing their stories, recognising they were the same as mine”, and “from being pissed off”.
Her anger only grew as she learnt more about the vested interests in gambling, a “protected industry” that amounted to “government sanctioned abuse” that lost her ten years of her life and much of her self-esteem.
“Don’t talk to me about ‘problem gambling’,” she said. “I’m not the problem, gambling is the problem.”
It was a message echoed by former financial planner Gavin Fineff, who faces prison after being found guilty last week of fraud to support his gambling addiction.
Fineff, who has worked with Independent Tasmanian MP Andrew Wilkie on a Private Member’s Bill aimed at stopping gambling companies from exploiting vulnerable customers for their gain, told the conference about predatory practices in the gambling and financial industries, of being offered “free betting money” from lenders keen to recruit new customers.
“I have an addiction to gambling, they have an addiction to profits,” he said. “We both need intervention.”
For keynote speaker Shanna Whan, Australia’s “booze worshipping culture” is the single biggest socio-economic threat facing the country.
Whan grew up in and lives in rural Australia, where she says the prevailing sentiment has been “you can’t trust a bloke who says no to a beer”. Fuelling that is a regulation environment influenced by state and federal politicians and policy makers “who are wilfully choosing to remain stuck in the dark ages [on the risks of alcohol]”.
Whan told the conference that she had had a “good home, good family, good life” until as a young woman she was sexually assaulted “and traumatised severely”.
Carrying that burden, she went off to university, where alcohol gave her “courage and confidence and the capacity to hide behind all the things that scare me”.
“I hate to say it but I was a garden variety, boring old case of unresolved trauma in a young person who was flung into this hedonistic booze worshipping culture which was rampant at universities everywhere.” She jumped in with gusto: a “cowgirl” drinking beer out of her Cuban heel boots.
She never imagined she would end up “a raging, suicidal, alcohol-addicted individual nearly dead by 40” – a story that she says is acted out again and again in country Australia, where dangerous drinking for some “makes you a legend, not an alcoholic”.
Backlash and burnout
Whan’s Sober in the Country initiative faced early fierce criticism, particularly in the country. But her story is resonating.
She was featured on Australian Story, named Australian of the Year Local Hero for 2022, and this week announced among the ten “everyday Australians” invited to travel with Prime Minister Anthony Albanese to attend Queen Elizabeth’s funeral in London.
That’s a huge privilege, she has said, though the quick trip to London highlights another issue for lived experience advocates. The announcement came hours after she told the conference she had just returned from “a month-long visit to a health retreat, a gorgeous down to earth place I go when I’m buggered and broken and I was so burned out”.
Whan warned other people with lived experience of the “two-edged sword” of social media and the “pretty hectic personal cost” of taking on a public role on addiction, encouraging “every single one of you to take such good care of your precious, amazing selves”.
Her call is for “action to fund proven preventative initiatives, measures and lived experience to ensure we can make sustainable, measurable, ongoing change, instead of doing what we have always done, which is pulling people out of the river when they’ve already drowned,” she said, imploring Australia’s political and health leadership to “step up, get progressive on this topic and come with us upstream”.
Because, she said, until that happens, “the tragedy is that people like you and I are left to carry a completely disproportionate burden of being part of an underpaid, undervalued and overworked lived experience workforce, doing the essential things that should be done by those we have elected in good faith.”
“In our own names, on our own terms”
A member of the conference ‘brains trust’, Professor Alison Ritter reflected on the first day’s discussions at the closing session, honouring the “powerful stories of shame” shared, but, parallel to that, the enormous amount of respect on show, the importance of speaking truth, “in our own names, on our own terms” but also of giving permission.
She was struck by Anna Bardsley talking about how she finally decided to put her name to a public account of her addiction, where she “unearthed this massive, massive universe of shame” in a high profile book about gambling nearly a decade ago.
“I thought, how can I write so profoundly and personally about shame, and not to put my name on it,” Bardsley had told the conference, saying the book was a turning point for her. “I wasn’t just telling my story. I was telling my story for the whole group. And I’ve never lost that sense, there are tens of thousands of people behind me.”
Just as powerful for Ritter to hear was Marion McConnell, founding member of the Families and Friends for Drug Law Reform, who said she and her husband had not revealed her son’s name in nearly 30 years of campaigning after his drug overdose because he had not been able to grant consent.
Kate Seselja offered a different view, saying she was mindful to make sharing the stories of those with gambling addictions “not an act of bravery”, which would scare off others who might want to share, but a restoration of dignity to people whose vulnerabilities were knowingly exploited for profit.
Another of Ritter’s takeaways from the conference was how sudden moments or interventions amounted to breakthroughs for many of the speakers: an infected foot that prompted Aboriginal alcohol and other drugs clinician Daniel Wilson to seek emergency hospital treatment, the “hot producer” that got Rocket Bretherten involved in a podcast and launched her into the #JailingisFailing work of the Justice Reform Initiative.
Those moments gave her hope, Ritter said, because “that’s how we’ll get policy change, that’s how we’ll get more treatment, that’s how we’ll get harm reduction, that’s how we’ll get law reform,” Ritter said.
For 24/7 free, confidential alcohol or other drug support contact www.counsellingonline.org.au or call the National Alcohol and Other Drug Hotline 1800 250 015 to speak to someone in your state. Click here to find out more.
Marie McInerney was in virtual attendance at the Rethink Addiction conference for the Croakey Conference News Service.