Our Landscape, Our Peers is a way to connect different voices, one by one - as an open reading for peers of many walks of life, some distant miles away, and bound together as we live with HIV.
There's always a different voice out there in the landscape of people living with HIV. There is always another way someone has fought and moved forward. There is always going to be the need to encourage a peer to say what she/he thinks with articulation – to listen - and hope we can use some of the spoken journey as awakening or wisdom for our road ahead.
Here is one such shared journey with a man named Andrew from Victoria, BC.
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Philip Dawson: Tell us how you rose to be chair of the AIDS Vancouver Island board.
Andrew Beckerman: I went from front desk reception volunteer to chair of the board at the speed of light with AIDS Vancouver Island (AVI). I have served on the Board of the Pacific AIDS Network (PAN) as the HIV-positive representative from the Island Health Authority (all of Vancouver Island). PAN is the provincial network of HIV and HCV service organizations.
You have stepped down as Chair with AVI. Will you remain on the Board?
Unlimited time, an inability to "just say no", an open and curious mind and the ability to retell stories that fellow clients shared with me, seemed to sentence me to service for "the rest of my natural life"! Two years ago we introduced the concept of term limits. I left my chairship to become "past chair" for a year and come our October AGM, I will finally be put out to pasture!
Finding board candidates with the time to do the job effectively is a challenge. Fortunately I was retired. I also had a dramatic Lazarus tale of survival - everyone enjoys a good story - and so I became useful as an HIV-positive volunteer to tell that story and field questions from the local media. I was soon asked to join the board at AVI. A life challenge in the then board chair's personal life left me as first co-chair and then chair of the board in a few years.
Stigma is felt everywhere. However, I think we see it first within 'our' community of gay brothers. Take us there with your experiences encountering stigma within the gay community and how you now feel.
For me it's epitomized by the phrase. "I'm negative; you be too". Would anyone have the temerity to say, "I'm cancer free; you be too"?
As a single man, I still throw my hat in the dating pool. Too often, I will meet someone for a movie or a walk around the park, etc. After spending a few hours, sometimes there appears to be a bit of synergistic chemistry. This is followed by some minimal indication of affection, i.e, a kiss. And then there's another and after a sweet awkward embrace the other lad usually says, "I'd really like to see you again".
This is my cue to say, "I would like that also and I should tell you, I'm HIV-positive". Jocko's next line is, "Can you get HIV from kissing?" Or "yes, I really would like to see you again, but I've just decided I'm moving to Nome, Alaska." Or "Well if that's your situation, maybe we can just be friends." The fact that I've been undetectable for coming up to 20 years, which means I don't have enough active virus to infect anyone, sadly empirical science, carries as much weight in this situation as it did before the Supreme Court of Canada.
As with several of us, you hit a low with your system fighting AIDS. You were fortunate to be part of an early trial in North America for a life-saving drug. I share the fight to return to 'life' with you – I want you to describe the visible darkness of those days and the pain, rather than simply saying you survived.
I was infected sometime in 1980, in between two monogamous relationships with men who eventually tested positive. I didn't get around to testing until 1991 after I moved from Berkeley, CA to Santa Fe, NM. I never experienced an opportunistic infection and received my AIDS diagnosis after my T-cells drifted below 200 in 1993. by the summer of 1994 I was wasting away and my T-cells were well below 100 with my viral load stretching up towards one million copies. I was very weak, but not in pain. My then partner suggested I might try a "visualization". This was a concept that was somewhat alien to my evidence-based view of the world.
Since I had nothing else on my agenda, I gave it a go. I had been an inept ocean surfer in high school. I visualized that I was riding a wave and I would stay on that wave until there was effective treatment. I continued to get weaker and shed T-cells toward a low point of two. I continued riding that wave for about 18 months and in the autumn of 1995, I received a place on the first Crixivan trial. I started medication on november 1, 1995 and slowly climbed my way back to life. It was the second, way to close near-death experiences, that I have had in my life and the one that has made a lasting impression on how I negotiate with the world around me.
I love this term! Tell me what you feel as a 'living library book?'
I first became aware of this idea when I was in Copenhagen DK as a competitor in the 2008 World Out Games. Copenhagen is full of fabulous contemporary buildings which contrast nicely with the historic fabric. On my list to see first was the Royal Danish Library. As I was wandering through this spectacular building, I noticed a kiosk and was able to understand in a few of the languages I speak the phrase, "Check out a Dane"! Well this was a come-on I could not pass up. I learned that "Check out a Dane" meant that I could connect with a local resident across a wide range of interests. This is the "Living Library" concept. I arranged for a coffee the next day with a Danish architect. I went back later that week and checked out an HIV-positive Dane for lunch.
When we started our collaboration here with the Greater Victoria Public Library for World AIDS Day, I suggested we adopt the concept. It took a few years to actualize, but last year a small group signed up to "Check me out". In this iteration, we grabbed a quiet corner of the main library and had an hours' worth of "No holds barred" Q&A. Since I have a long history of answering both appropriate and inappropriate questions about my HIV status, this was comfortable for me. It was not as comfortable for my small group. After dancing about, but not quite asking, the "how did you contract HIV" question, I just spoke up. That broke the ice for a new direction in the conversation that lent me an opportunity to do some HIV transmission education. "No you cannot get HIV by kissing unless both partners have bleeding gums"! A longer conversation followed about HIV status and disclosure. The group actually understood what my "undetectable viral load for 20 years" meant via-a-vis transmission, a concept the Supreme Court of Canada has failed to fully appreciate.
What is a defining moment in your poz life that forced you to see more?
My life as a mainly middle-class white man seems to have a disproportionate amount of both unusual, verging on the peculiar and/or unbelievable experiences and occasions. Certainly the most momentous in the past 10 years, was on February 11th past when I became a citizen of Canada!
What was your toughest day?
Although my long-time partner of 25 years decided to cross the nominal 49th parallel as we had planned, we remained friends. About six years after immigration, I received a telephone call from John to share some bad news. A few months earlier he had received a diagnosis of ALS, also known as Lou Gehrig's disease. Within two years he died. He was five years younger than I, fit and healthy, working as a personal physical trainer. It's still difficult to comprehend. He nursed me through what appeared to be an HIV death sentence and ironically I remain above ground while he has turned to dust.
What's your biggest challenge today?
On a personal level, it is being a single gay man living mainly in the lonely company of my aging canine companion. Loneliness. It's rather pathetic that my dog, Jessie is my best friend.
On a somewhat personal and also societal note, it is coping with the unnecessary inequities of society, locally, provincially, nationally and globally. I live better if everyone lives better. I don't understand why those with a disproportionate amount of this planet's resources, don't understand that basic concept. It's a challenge to look around me and see pain and deprivation, some of which, although sadly not all, we have the resources and skills to relieve. I remain an optimist but I seem to be challenged moment by moment, hour by hour and day by day by the inequities of life.
Is there an area you have made a major improvement because of your work?
I have been appointed to the National HIV Stigma project to represent the Legal Network.
What does the word peer mean to you?
My high school dictionary's first citation for the word "peer" is, "A person of the same civil rank or standing, an equal before the law". Yikes, that sure dates me! In the world of HIV, it is often used to describe someone with the same HIV status, either negative or positive. For me that colloquial usage of peer is merely a common health diagnosis. It certainly does not define who I am. My peers are people who share the same value system, "Do unto others as you would have them do for you"; They are my colleagues who engage in honest communication while respecting the uniqueness of each of us.
Volunteering is important! How will you encourage peers to tread paths you've walked?
While we are fortunate that programs for which I have volunteered receive funds from various levels of government and private foundations as well, there are never enough paid staff to provide service to clients. At AIDS Vancouver Island, we log almost 16,000 hours of volunteers assistance annually. The work of volunteers is wide ranging. We make sex packs and package needles; some of us speak in public and/or teach classes to our peers and other members of our community. Volunteers can help with fundraising and public engagement events. Some volunteers spend valuable time on our board of directors. We are also an attractive opportunity for practicum students at U of VIC and Camosun College.
I brought neither educational background, nor any relevant paid work experience to the reception desk at AVI. The only pertinent training I had ever received was long in the past. I had been a peer counselor at a sexual minority support and counseling program 30 years before; we were trained to be sympathetic and reflective listeners. I also beat up on myself on a daily basis to be non-judgemental about other people's lives.
If we wish to meet the mandate of our program, meet the performance goals of our contracts and provide caring comprehensive services to our clients we need the support of volunteers.
Everyone who believes in the improvement of our society has to take a turn and step up to the plate.
The successes I have achieved, such as they are, have touched me by chance - the genetic card I inherited from my parents, the opportunity for a brilliant education that was affordable without crushing debt, relative economic success because I wanted to gain carpentry skills, a non addictive personality, aAn open mind and a compassionate heart. A second later or earlier and/or with one atom more or less, my life could have been completely different. There but for fortune go you or I.
The challenge is how to make this world a more equitable place by enabling fellow peers.