Friday, December 2, 2016

Why I Cried On World AIDS Day This Year


I don't usually cry on World AIDS Day. But this year I did.

I'll explain why.

About a month and a half ago I was informed of a mandatory full-day statewide meeting that I and other faculty members in my division would need to attend. I was really bummed when I learned of it...because it was scheduled for December 1st - which is the annual commemoration of World AIDS Day (WAD). As part of a serodifferent family, WAD is very significant, and I cannot recall a year where we failed to acknowledge the day in some way. For example, last year my kids and I, along with our good friends, went to a WAD event at a local church that included an HIV seminar and a prayer breakfast.


Image is of six hands of different skin tones, each with a different message written on it in black ink (No Violence, Zero Stigma, Zero Transmissions, Stop TB, Zero Discrimination, Test & Treat HIV.") Below the hands text states: "1 December 2016. World AIDS Day: It is in our hands to end HIV and TB." Photo Credit: South African National AIDS Council

The year before that my kids and I and our friends spent the day volunteering at a local HIV hospice. We took over their kitchen and baked holiday brownies and cookies for the residents. Then we swept, straightened up a storage closet, and raked and bagged leaves (this is Texas; yes, leaves are still falling in December). The year before that we collaborated with a local church and our Ryan White Part D grantee to hold a family-friendly Celebration of Life.

In previous years I've attended WAD Proclamations with the County Judge and the Ryan White Planning Council, attended memorial services (though I try to avoid those because they focus very heavily on death and are too depressing for serodifferent families with small children who are trying to emphasize LIVING with HIV), and we've even attended an arts-inspired WAD event in the past (hosted by Hope Stone) that featured an interactive labyrinth inspired by the AIDS Quilt.

This year my friend Leslie had informed me of a WAD event that was being led by our local chapter of BLM. Not to mention the evening before WAD there was a huge launch event for the End HIV Houston Plan (I was a member of its HIV Research & Policy Workgroup and bursting from the seams with pride in our city for taking this ambitious step). AIDS Foundation Houston was holding its yearly WAD luncheon. There were lots of things going on, and NONE of them had a single thing to do with being at work all day long.

But I've been working here less than a year. And my program chair, statewide lead, and several other influential people were traveling to town to host this meeting. Nobody else who was required to attend was sending regrets - they obviously knew it was an important affair. I figured skipping it would be pretty problematic.

So yeah, to say accepting the fact that I was going to basically have to miss WAD did not fill me with joy. Quite the opposite.

If I can be frank with you all (which is the only way I know how to be), I felt very much like I needed to be at a WAD event this year. Noticed I didn’t say “wanted to be.”  I said, and I meant, needed.

Why needed?

Because for over a year now in many ways I have felt like my contribution to HIV advocacy has been stagnating. It’s not that I’m not committed - my commitment has not, and will not, waver. It’s not that I’m not involved; I’m in my second consecutive term as the chair of a multinational community HIV research body - the largest community HIV research group in the world, in fact. I have at least one HIV related conference call every week; I read protocols; follow list serves; subscribe to HIV magazines; belong to HIV related social media groups; lead a (very, very small but existing) HIV prayer group at my church.

And it’s not like HIV has disappeared from our personal lives either; in fact, I just hit up the pharmacist today for a refill of life-saving anti-retroviral meds...and we will be at the doctor’s office (the HIV specialist) for the quarterly check up in two weeks when our winter break begins (what a misnomer that is…”winter break.” It’s not merely a “break.” It’s more like a much-needed mental health period than a school vacation IMO, as probably any other educator will tell you; you best believe I’m counting the days until this semester ends and I can rest).

However, I have to admit that in the last year and a half or so I’ve felt more disconnected from my local HIV community than I have in many years. Though there are several reasons, the two primary ones are 1) that’s when I started working full-time, which was a huge change after several years of raising my kids and being able to devote a lot of my time to volunteer advocacy work, much of which was local and HIV related, and 2) we moved out to the sticks “boonies” country semi-suburbs outskirts of the city because our family had long outgrown the size of our home due to Teen Queen, my two Liberian Princes, the Ausome duo, and in the near future we’d thought, our sweet Almost Son from China. We needed more space, and homes farther away from town are more affordable...but not affordable enough for one income - not for a family with many members who have specialized health needs on top of an ongoing, costly lawsuit. Me not working was no longer an option for us.

As an educator, I’ve gained a lot by returning to work. But I’ve missed out on a lot of things too, because I no longer freely dictate my own schedule. In addition to that, during this period of my life I’ve struggled with tremendous mental health issues - which haven’t been helped at all by the ongoing legal saga we have been entwined in for over two years now. Ironically, while I’ve been blessed enough to somewhat maintain my involvement in disability and autistic causes, I haven’t been able to remain as active as my heart wants to in several HIV related matters that are very important to me. For example, I used to be very involved in our local Ryan White Planning Council (I even chaired it at one time); now I can no longer attend any of the meetings due to my schedule. I was unable to go to USCA this year; I missed AIDS Watch; I missed the Speak Up Summit; I missed HIV is Not a Crime II; I missed the Positive Living Conference and the New Horizons gathering. I was an invited session monitor, a moderator, and an approved media attendee for the International AIDS Conference this year, but because we needed money for legal fees, I had to forego my trip.

There’s much, much more to being an advocate than attending conferences, of course. There are lots of ways to further the cause, and there are many indispensable individuals in the global HIV community who attend none of these events that I listed and yet have a huge impact. But for me, I gain so much from being in those spaces, even if just being there virtually. I learn a lot - info that I in turn take back to others for the collective good of the networks I am a part of as well as the community at large. Additionally, there is a sense of camaraderie that I don’t have the capacity to describe that I cannot get from any other place. I am a member of numerous communities. They are all meaningful to me. I am proud of being African, being black, being a person of faith, being disabled, being a woman, being an educator, being gifted/twice exceptional...all of these communities mean a lot to me.  They are in some ways like my family.

But the HIV community is like my home.

There are NO words to describe what the HIV community means to me. How my family and I were accepted, embraced, supported, and loved on when the rest of the world - including many in the “Christian” community - threw us away, cut us off, spat on us. Because of three little letters - HIV - we were trash. Dirty. Damaged goods.  

People I’d literally known my entire life cut us off. (Have still cut us off.) Stopped speaking to us. Went to go get HIV tests because they’d eaten at our house or sat in our cars or their kids had played with our kids. People at the so-called church I once attended (a small church where everyone knew everyone) violated privacy laws to spread malicious gossip about the serostatus of my family and its members.

Some people stuck with us. I have always called that period of our lives “the litmus test.” God used that time, though it was painful as all h3//, to show me who was real and who was fake. Who I could trust and who I couldn’t. Who deserved to be in my family’s life and who didn’t.

And He restored what the enemy had stolen. Where fake, fickle, ignorant people had departed, God planted new people in our lives. People who were HIV positive and people who were HIV negative. People who didn’t have a problem with it, and loved us as we were. People who let me learn to trust again, to love again. People who encouraged me when I decided to spread my little baby wings as a budding advocate. People who applauded me when I said, “Eff this,” and decided I was done hiding...because I realized we had not a d@*n thing to be ashamed of.

People who patiently listened to me as I gushed on and on about the new class I was taking at the time about HIV and advocacy (Project LEAP, taught back then by the Center for AIDS Information and Advocacy, which is now a program of Legacy Community Health Services). People who supported me during the years that I ran a small play date group for serodifferent families and refugee youth, Positive Playdates.

People who smiled at me when I walked into local HIV meetings wearing a baby in a sling week after week (I'm African; we were baby-wearing before it was "the thing" to do). People who listened to me prattle incessantly about HIV research and this clinical trial and that new drug, even though they might not have known what I was talking about with all the acronyms and nerd-research jargon.

People who donated to my kids’ AIDS Walk fundraisers; people who challenged their family members and friends when they said stigmatizing or inaccurate things about HIV; people who allowed me to enter spaces where I might not have even belonged and allowed me a voice and a place behind them to offer my support and help because they knew I was sincere.

People who signed petition after petition I sent them and who joined me in rallying around things like HIV legislation in our state;  the proposed closing of our local HIV research site’s laboratory and office spaces; several consecutive proposals to defund Ryan White Part D; HIV stigma in the media; and more.

People who kindly educated me when I made social media and/or in person blunders and graciously helped me do damage control caused by the enthusiastic but not exactly-savvy feel first and think later approach I sometimes took until I learned better.

People who grieved with me when we lost Asia Johnson. And Rod Castle. And Philip Anthony. And Cicely Bolden. And Elisha Henson. And Sharon Maxwell. And Kalkidan Qualls. And Gene Ethridge. And Channing-Celeste Wayne. And Ruben Rosas. And Byanca Parker.

People I’ve met in person, and people I’ve only met online. People who have my heart. Because before any community called me its own, the HIV community let me and my family in. And though it isn’t perfect...it has infighting and drama and problems like any other community, it is home.

And y’all know how it is about home. You always miss it. My parents have been away from their home continent (Africa) for many years. But it is still their home. America is home too, but it’s not their first home. It never will be.

On World AIDS Day, I cried in the morning as I drove to work for the mandatory all day meeting. They were tears of sadness because I felt like though I am growing in some ways as an autistic advocate, I worried that I was becoming a huge f**k up as an HIV ally.

I did the dutiful employee thing, though. I went to the meeting.

After it ended, though, I didn’t go straight home. I stayed at work to host a presentation. A World AIDS Day presentation. For my students. At the college where I work.

You see, a few days before the meeting began, I decided that my big pity party wasn’t going to help anybody. I was still going to have to go to the meeting. I couldn’t get around it. I wasn’t going to have a World AIDS Day.

But it dawned upon me, finally, that just because I wasn’t going to have a World AIDS Day didn’t mean my students didn’t have to not have a World AIDS Day. If I was going to be stuck at work all day on World AIDS Day, somebody was going to commemorate the d@*n day, so help me.

Because I didn’t have much time since I came up with the idea at the last minute, I wasn’t sure how the event was going to go. I didn’t have much time to market it. I had to hold it at night after the meeting I had to attend had ended, and we don’t have a lot of students at night; most of our students attend during the day. I hadn’t gotten paid yet, so I couldn’t provide food, snacks, or any incentives, and I couldn’t make a request from my work budget in time to get any funds to use for the event because I came up with the idea so late. So...poor marketing (just my word of mouth to a few students, not even a flyer), no food, no fancy guest speakers, no captive audience, no real time to put anything together. I had no idea what to expect at all.

I finished my meeting, headed to where I was holding the event, and hoped for the best.

Imagine my surprise when I turned the corner. On a Thursday the week before finals week at an evening event that was not advertised and where no food or drink was being offered, ten percent of the student body was waiting for me to begin. (And a few more trickled in late after it started.)

I swallowed. I prayed. And I got started.

We did an icebreaker. I pulled up a few HIV awareness tests on the large screen (from AVERT) and we took the tests as a group, to test their knowledge. We talked about HIV. I showed them snippets of videos. They watched a few YouTube clips of Ashley Rose Murphy, Masonia Traylor, Aaron Laxton, Pedro Zamora, Hydeia Broadbent, Moses “Supercharger” Nsubuga, Cecilia Chung, Ryan White. They watched a few HIV criminalization videos from the SERO Project. They watched a few videos from HIVE Online about HIV and reproduction. They watched a video about PrEP. They watched a video about the importance of women and people of color participating in HIV clinical trials.

In between each video we had Q & A and discussions. A few were shy at first, but they warmed up. Many were very surprised to learn so much about HIV. Some were extremely angry when they learned about HIV criminalization. Five people came up to me at the end asking me where they could try to find out more about possibly getting PrEP, or getting more info about it (I gave them the number of the Legacy Community Health PrEP line).

I actually had to cut it short even though a few people wanted to keep going because I had only reserved the conference room for one hour!

I locked up the room...still in disbelief. I would have been happy if 2 or 3 people had shown up...I’d seriously expected that nobody would come at all, so any attendees would have made me feel like at least somebody learned something. I never expected this. Never.

Just like I cried in the car on my way to work that morning, I cried in the evening on my way home from work. But this time the tears were different. Not sad ones. Happy ones. Because I knew God had used me in a wonderful way. And that He had sent me a message. That even though things have changed, they aren’t over. He still gave me a World AIDS Day, even though I thought I wouldn’t have one.

And now I know that I will have one every year. I will make sure that the HIV community is given the focus it needs that day in hopes that people will be motivated to care and to take action the other 364 days. No matter where I work, no matter where I live, no matter where I am on that day, I'm going to speak up and speak out. As long as there’s stigma; as long as there’s need; as long as there’s new diagnoses; as long as there’s criminalization...until there’s a cure. As long as there’s life in me, there is something I can do. I will use my voice, my position, my knowledge, whatever I have to spread some knowledge wherever I am.

And that’s nothing to cry about.


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