“Today, by examining from the personal perspective of PLWHIV we want to zero in on what has worked... in terms of accessing services; what needs to be improved, and by listening to people who developed and implemented programs that are innovative, what they think can be adapted elsewhere, plus find out how they did what they did and finally where can these services go next.” – Tammy C. Yates, Opening Remarks to Realize Forum 2017
Realize is the only national organization that has worked consistently over time on issues related to rehabilitation, HIV and episodic disability and they take a broad view of rehab, seeing it as “any service or activity that addresses or prevents body impairments, activity limitations and social participation restrictions experienced by an individual.”
As such, Realize is the only national organization dealing to this extent with the health concerns of the aged who are living with HIV.
It was hard to believe a year had passed since I’d seen the organization formerly known as CWGHR morph into Realize and then hold their 2016 Forum. For me, that forum had been a revelation and a fantastic opportunity to get an overview not only of our current response to HIV and aging, but of the data which might inform that response in the future.
PositiveLite.com was honoured to be invited to attend the Realize 2017 Forum on HIV and Mental Health, the full title of which is: “Setting Our Minds to It! HIV & Mental Health in Canada: a dialogue about meeting unaddressed challenges in policy and community action.”
A lot has changed in HIV over the past year and with the funding picture steadily bleakening for many in the sector and with a feeling rampant among long term survivors that they’re being squeezed out of the community they did so much to form – and with community members squeezed out of the conversation entirely in some quarters, this is a crucial time for people living with HIV.
And I guess I’ve been looking for a shot or two of inspiration in the face of adversity and this forum, with this roster seemed a likely source. I’d traveled to Toronto the day before so as to be there on time. I was especially keen to see and hear from the various researchers and community members in attendance about how they identify the areas of greatest need now and how they plan to address those areas with resources stretched ever tighter.
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The attendees had a chance to say hi and chat a bit over breakfast until 9:00am, when Tammy C. Yates, Executive Director of Realize, welcomed us and set the context for the forum:
“The theme for today’s Forum is ‘Setting Our Minds To It! HIV and Mental Health in Canada: A dialogue about meeting unaddressed challenges in policy and community action’. In thinking about the title that we’ve selected for the forum, it reminded me of the poem by John Godfrey Sacks about the blind men who went to see an elephant. Of course, being blind, they could only “see” it, by touching it. When asked to describe the elephant, one grabbed it by its trunk and said, “An elephant is like a snake!”. The second man, took his turn to touch it and pulled it by the leg and confidently determined, “No, an elephant is like a tree trunk!. The third and final person to touch the elephant grabbed it by its tusks and said “Tsk, tsk, tsk, you are both wrong: an elephant is smooth, cold and hard”. Each person touched the elephant, yet, from each of their perspectives, the experience of the elephant was totally different. In a time of deepening integration of health services and financial constraints, when we are all being asked to do more with less, strategizing to ensure that the mental health needs of people living with HIV are being addressed is critical. It is the elephant that is being viewed by different sectors from different perspectives.”
Tammy went on to point out that the mental health concerns of people living with HIV are many, including anxiety, depression, substance use problems and Post Traumatic Stress Disorder (PTSD).
“We are also aware of the challenges around mental health services and public health insurance; we’re also aware of the huge waiting lists for counseling.” she said. “What we’re not aware of is the full perspective of the elephant. What are the innovations in mental health service provision across the country that can be shared, adapted and scaled up?
“We know that there is no new money and ultimately, we can all acknowledge that more money and coverage for mental health services by public health insurance systems would drastically improve things, but until then friends, if the HIV sector and the mental health sector do not deepen and broaden engagement, collaboration and partnership with each other, then we’re all talking about different parts of the elephant!”
Next up was keynote speaker, Jordan Lewis, who has worked for over 17 years as the social worker in the HIV team at St. Michael’s Hospital. He has experience working with marginalized populations, including those living with HIV, people living with mental health conditions, people living with addictions, people living with bleeding disorder related concerns, as well as people in need of palliative care. He described his years in that role as “being everything to everyone” and shared some of the insights about HIV and stigma he’s gleaned through long experience.
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One highlight for me was the observation that “We are all a bunch of risk takers,” but that no blame or judgement ever attaches to risk behaviour if there are no negative consequences. Also that much stigma and shame attaches because of the sexual connotation of HIV and that a sense of shame can lead to desperation for worthiness
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Jordan spoke of the privilege of learning from his clients and that he felt that they taught him much more than he helped them. He spoke of wanting no prior knowledge of them before meeting them as he wanted to be able to treat each client as a new person. And he also said that he finds the next generation to be more open minded, not affected much by the moralistic backlash we’ve been seeing. I hope Jordan’s right about that.
Next came a presentation about Realize’s mental health initiatives from Kate Murzin (Health Programs Specialist, Realize) and Wendy Porch (Manager, Episodic Disabilities Initiatives, Realize).
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Of particular interest to me was their new mental health course, Positive Outlook: Supporting Front-Line Workers in Helping Relationships. Says the Realize 2017 Annual Report, “One of the valuable lessons learned through the development of this course is that there exists a large divide between the mental health and HIV sectors in Canada… Realize intends to bridge the divide between the HIV and mental health sectors through the development of a national HIV and Mental Health Network that will bring together mental health professionals and HIV sector workers to learn from each other and move towards providing better care for people living with HIV.”
Access to mental health services is an issue for many people living with HIV and it was noted that mental health is not funded by the public health system and typically not by private insurance either. There is no sector to provide these services.
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Next up was someone I’d been especially looking forward to: Yvette Perrault, Director of the AIDS Bereavement and Resiliency Project of Ontario (ABRPO) was slated to speak. Says the ABRPO website: “The AIDS Bereavement and Resiliency Program of Ontario (ABRPO) is mandated to work with Board, Staff and Volunteers of AIDS Service Organizations (ASOs) and other AIDS-serving organizations in Ontario on issues of AIDS-related loss, multiple loss and organizational change and transition. We work with staff, board or volunteer teams and individuals to help them work through all kinds of loss and transitions and to build resiliency skills.”
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ABRPO runs several programs, including Turning To One Another (TTOA), which I took and finished, except for a pesky practicum I still owe Yvette. She spoke today on “Loss and Resilience: ABRPO’s Organizational Life” and kicked it off with a quote from C.S.Lewis: “Hardships often prepare ordinary people for an extraordinary destiny.”
Yvette spoke of her experience of the early days of the AIDS epidemic at the height of the hysteria, when everywhere was bereavement, as a psych nurse at age 20: “What I brought to human spirit and human suffering was: my nurse’s heart,” she said.
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Yvette says she works on a community development model and not a service delivery model and that her work in emotional first aid for the bereaved is not just about looking at pain, but about reconnection with our integral wholeness. She speaks of it as "soul work" rather than social work.
I could listen to Yvette forever and a day; it’s that spellbinding, but a wellness break intervened.
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Following the break, we were back with a discussion entitled, “A Conversation on HIV and Mental Health: Facilitators and Barriers to Service” with Colleen Price, (Community Advocate for People Living with HIV and/or Hepatitis C) and Maureen Mahan, (Education /Development Coordinator, Casey House). Colleen spoke on “Mental Health: From Risk to Resiliency”, which was about how harm reduction saved her life, the supports that helped her to get to where she is now and what that journey has been like.
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There was q&a about challenges to the sector and it was noted that measures should be taken to facilitate the involvement of peers in all aspects. Another challenge was seen in the fact that many older advocates are leaving the sector, partly because of funding but also because they are being excluded.
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Lunch was next, though I did more networking than eating and then we came back with a panel discussion of “Innovation in Mental Health: Service Provision,” where mental health personnel from a number of facilities (Scott Bowler, Department of Psychiatry, Mount Sinai Hospital; Susan Clancy, Parkdale Queen West Community Health Centre Toronto; Paul Curwin, board member, Realize; Clem Fong, Clinical Counselor at the Dr. Peter Centre; Kelly O’Brien, Department of Physical Therapy University of Toronto; Maureen Mahan, Casey House) spoke on the initiatives and challenges at their respective organizations..
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And then came something a bit more involving. “Facilitated Discussion: A National HIV and Mental Health Network” was an interesting exercise where the attendees split off into a number of groups, each with a facilitator. Each group then sat for a few minutes at a table, discussing what they saw as the areas of need for such a network and some aspect of how it should function, etc. After (I think) five minutes, half of each group would get up and go to the next table to continue defining the network.
As I said, it was an interesting exercise and it certainly drove home for me what Tammy was getting at with her story about the blind men and the elephant.
It certainly is true that we are all creatures of our experience and our experience is what we draw on in our dealings with the world. It was glaringly obvious that we all come at HIV from different perspectives but there was lots of common ground too. One organizational imperative that came up a lot (partly because I kept bringing it up) was that such a network needed to have a strong advocacy component, otherwise we would just be talking to ourselves.
I was happy to see that the idea had some traction there, but not surprised; Realize is interested in real-life results towards the betterment of life for people living with HIV and this was just one of the many ways they confirm that.
And so I got my shot or two of inspiration and then some. I also got to make some new friends, reconnect with some older ones and get a good sense of who else is out there to work with in the HIV network, something that’s becoming increasingly rare for people living with HIV in the current funding climate.
My thanks to Realize for having me there and kudos for giving people living with HIV a chance to be heard at a time when their voice is being silenced elsewhere. It was an honour to be there with you all. We badly need more gatherings like this.