WORLD AIDS DAY

one story of too many stories

Yesterday was my angry rant.

Though what I said was vital, and I meant every word, it only addressed the tip of the iceberg in a vast ocean of problems that require fixes. The skills required in managing and controlling HIV and related issues are increasingly complex, and frequently overwhelming.

But today I want to narrow my focus. Because I want to talk about what the term “engagement”, on a practical level, truly means.

In my non writing life (the things I do that that actually pay bills) I work with people with HIV and train them as community researchers. It’s a diverse group, from people who have multiple graduate degrees to some who can claim grade 8 as their highest achievement.

One of the many things I have learned doing this type of work is that education means very little in most cases. Giving someone investment and ownership in their own trajectory means a hell of a lot more.

Let’s call her Ann.

Ann is thirty six, a mother of two girls, one is a teen and the other still in elementary school. Despite the common belief that says one just needs to “pull up ones bootstraps” to be a success, some people just don’t even have a boot. That would have been Ann when I met her a little under three years ago. A single mother with addiction issues, this woman could not catch a break. Sex work is a little difficult to leave when it is your own mother who sells your ten year old body for extra cash. When you can’t feed yourself or your family, well, you return to what you know.

Stop and ask yourself, honestly, how would you have come out of that?

All things considered, Ann did pretty well. Though somewhere along the way she acquired HIV, and through early management with a doctor who specializes in HIV and pregnancy, both girls were born free of the virus. Her daughters are in school, and she is trying to acquire her GED on a part time basis. It’s taking longer than expected, since her HIV has become symptomatic. That is more than likely due to the difficult time she is having adhering to medications. And while she knows intellectually that she needs to stay away from substances, that is difficult to do when your aunt lives two doors down and is a crack addict. So, understandably there have been frequent relapses.

Two years ago when I was looking at the resumes in front of me for the position of a part time, paid research assistant, you probably would assume she was not my first choice.

Wrong.

I was committed to doing everything I could to secure her in that position. Because the mandate of our program is based on something called the GIPA / MIPA principles. Greater, and meaningful inclusion and involvement of people with HIV in the issues that affect them.

Was it a risk? You bet. Were there problems? A few. But none that couldn’t be dealt with through simple, two way communication. Two years later, it is a risk that I am so glad we took. Because today, on World AIDS Day, Ann is delivering a speech at an annual concert, discussing her experience in research. She has managed to stay clean for the last seven months (the longest time in her life she has been off drugs), and with support and a strict schedule, she has remained compliant with her medications for the last several months. Her CD4 count has gone from two digit numbers to somewhere in the high two hundreds. And yes, that’s a huge improvement.

When helping her with her speech yesterday I asked her what she is most proud of. Seeing her daughters faces in the audience hearing their mother make a speech will make it all worth it, she told me.

That is only one example of what “engagement” can be. As I said yesterday …

The ability for this disease to be contained, is always analogous to the potential one has to see their life having worth and meaning.

Helping someone achieve active agency over their own experience is an immensely liberating thing.

Because human agency means …

Honoring knowledge, and being accountable to where that knowledge applies.

It means standing up for each other.

It means offering deference.

And being kind.

Sharing, as well as accepting.

The courage to voice.

The humility to listen.

And the compassion to act.