On Monday, November 25, the AIDS Committee of Guelph & Wellington County had the opportunity to participate in a “Red Ribbon Edition” of MoMondays, which is an evening for speakers to share inspiring personal stories and provide some “motivation” to audience members.
Our Red Ribbon Edition included two speakers who are living with HIV, a speaker who is living with Hepatitis C and is recovering from an addiction (one of our peer outreach workers), a speaker who has two HIV-positive parents, and myself, an ASO worker.
This was a tremendous experience. Every time people with lived experience share their personal story with a new audience, I am humbled by their bravery and the courage it takes to do this. I am also amazed at their ability to take vast and complex stories and craft them into bite-sized 15 minutes presentations. I am so proud of all of our speakers!
I thought I would share with you my speech, in which I share the single greatest lesson I have learned while working in this field,
When you’re at a bar or a party and meet someone new, after you introduce yourself, what’s the first question they usually ask?
“So, what do you do for a living?”
When people ask me this, I explain that I work for an AIDS Service Organization, and that we provide programs and services to people who are living with HIV & AIDS, and to those at risk.
When I say this, people don’t respond by saying, “oh! Cool! What a fun job!” Instead they say, “oh… isn’t that… difficult?” And I know what they mean. They don’t mean difficult, like assembling the engines of jet planes difficult, or quantum physics difficult. They mean emotionally difficult.
I usually use this as an opportunity to do a bit of education work. I know that they are probably imagining me caring for people who are terminally ill, and that’s not what this job looks like – not today anyway. Today we are able to focus more on prevention, education and improving the quality of life of people who are living with, not dying, of HIV. I like to respond to the “isn’t it difficult” question by explaining that with access to medication and a good care team, people with HIV can live a long, healthy, productive and fulfilling life; that people living with HIV can have careers, have partners, have children and have sex! And though complicated by challenges such as medication side effects, someone who is diagnosed today with HIV can expect a near normal lifespan.
I was sitting on an airplane just this summer, explaining this to the woman sitting next to me. (Because the work of an HIV worker never ends – even when you’re on vacation). And then it occurred to me, that maybe I’ve been answering this question – “isn’t that difficult” - all wrong. Because yeah – it’s difficult. This job is difficult. Because when we talk about who is at risk to HIV or what complicates an individual’s ability to live healthfully with HIV, we talk about things like… sexual assault and domestic violence. Childhood sexual abuse. Trauma. Racism and oppression. Homophobia. Hate. Addiction. Depression and mental health issues, homelessness, food insecurity, poverty. And stigma, stigma, stigma. Stigma from friends, family, prospective partners, rejection from entire communities. Stigma from doctors, nurses, first responders, dentists, social service workers, children’s protection workers. Stigma from police, stigma from the law. Stigma that is perpetuated in the briefest of face-to-face interactions; stigma that is entrenched in the supreme court of Canada.
And although today we don’t see that many AIDS-related deaths we still experience about death. And I don’t just mean loss – I mean we still experience death. In fact we see stigma-related deaths. Not just in a metaphorical sense; I mean in a literal sense – we see death caused by stigma. We see fatal overdoses that could have been prevented if drug users had greater access to Naloxone. We see deaths that occur when someone ill is too afraid to walk through the doors of an emergency room in a hospital because they are afraid of how they are going to be treated; they have experienced so much stigma and discrimination, they can’t take any more and they are willing to risk dying before they experience any more discrimination.
Whew! I’m getting a little emotional. Did I mention this works gets emotionally difficult?
This is a long list of challenges that I have just thrown at you, and this is really just scratching the surface of the issues we face in this field of work.
So yes, when someone asks me – “isn’t that difficult?” Maybe I should say – “yes. Yes, it is very, very difficult.”
But that’s not the whole picture. The difficulty, the pain, that’s not the whole picture of what I do. Not even close.
Over the past 5 years, clients of the AIDS Committee of Guelph have shared their stories with me. Often these stories are – well, they are sad; there are many stories of loss. Abandonment. Rejection. Betrayal. Loneliness. Regret. Guilt. Shame. Anger.
But most of these stories – in fact, I’d go so far to say that all of these stories – contain something else. They contain hope. And resilience. And even, I believe, beauty.
After all, the reason I have been privy to these stories is because the people telling them were willing to go into our agency and participate in yet another workshop. Commit to yet another volunteer opportunity. Participate in yet another research project. Sharing a story – like today – is not easy. But people continue to share their stories because they are committed to making meaning out of their life experiences by helping others. They use their life experience to create a safer, more accepting, more compassionate, more caring community.
And that is what I have seen, most of all, from people living with HIV or Hepatitis C or people who are living with or recovering from an addiction – there is a commitment to helping other people learn and benefit from their experiences.
I see this commitment from our peer outreach workers, who help their peers stay safe and avoid becoming infected with HIV or Hepatitis C, while they are unable to quit using drugs. I see this commitment from people living with HIV who are brave enough to share their story – and share their HIV status - with a room full of strangers, despite the risks (and there are many). I see this commitment from the other people standing on this stage tonight.
I believe it is because of that commitment and that bravery that we have seen so much change in this field. Sometimes I get exasperated, feeling as though change is too damn slow. We are stuck working on stubborn issues like homophobia, stigma and criminalization – things that just won’t seem to go away no matter what we do. But the reality is that we have seen enormous change in this field. We have seen more change in the last 30 years of AIDS than probably any other disease in existence today. And that is because people who work or volunteer in this field – and that includes a lot people who are living with or have died of AIDS – have refused to give up.
A lot of people say that everything happens for a reason. I know that a lot of people find comfort in this belief, but I’m sorry to say that I don’t actually believe that everything happens for a reason. I do not believe that childhood sexual abuse happens for a reason. I do not believe that AIDS-related deaths happen for a reason. I do not believe that rape, or assault, or war or any kind of injustice happens for a reason. But I believe that we can create that reason, we can find that purpose, we can make that meaning. As one person living with HIV often tells me, we have to the point in the pointlessness. Among terrible, pointless things, we can find the point. People choose to make meaning out of their experiences by helping others; and that choice, though not an easy one to make, is a beautiful choice. It’s a choice that people - no matter how injured, no matter how stigmatized, continue to make, over and over again. To me, that choice says something beautiful and profound about the human spirit.
That choice – that’s what keeps us participating – in this work. That’s what keeps me in this work. And that’s what keeps us participating in life. It’s that choice, I believe, that will ultimately lead us towards a future that will see the end of AIDS