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Living History

August 4, 2012

A few weeks ago I had an afternoon at the National Mall with the AIDS Quilt – the beautiful tapestry symbolic of the lives behind the pandemic.  Looking at the Quilt brought back memories of years ago when I was volunteering at the Duke infectious disease clinic.  I had packaged these moments and slipped them to the back of my mind.  But as I unfurled pieces of the Quilt, the time at the clinic came back vivid and fresh.

When I previously went to see the Quilt, it was on instruction from one of the clinic directors to go up to the hospital’s prayer room.    The Quilt had become too big to display in its entirety in any one place, so the keepers of the Quilt began sending out the panels for viewing around the county.  One came to Duke Hospital, an opportunity for those in North Carolina who had never had the opportunity to see it.  Sadly, it didn’t take long to bring dishonor into a space intended for reflection and meditation.  The pages of the Quilt’s visitor’s book filled with vitriolic hate speech – mostly homophobic and entirely anonymous.   So I spent my afternoon making sure that visitors to the room were not there to deface the Quilt.  It’s interesting to see how behavior changes when there is someone watching.

One thing that struck me was the significant amount of deaths represented on the Quilts in the early 90s. Only part of the AIDS Quilt is displayed at any given time, so it’s true that I was not  seeing every panel (the AIDS Quilt now represents about 100,000 individuals), but I was struck so many of the panels were about people who moved on from this world from 1992 to 1994. This one a baby.

But it’s hard to know how things have really changed at all when it comes to HIV/AIDS in the U.S.  Certainly medicines and treatment have improved when one access to them.   For most of the 90s, there was AZT and the AIDS cocktails that could be dozens and dozens of pills a day for a person with the disease.  They wreaked havoc on people’s bodies and often could be as harmful as the disease.  Today there are better products.  Now those living with HIV or AIDS are figuring out how to deal with a host of secondary conditions, many times dealing with complications, but living nonetheless.

But most of the experiences I had were less about medicine and more about the human condition in the face of adversity.  Most people were just trying to find a way to live “normally.” Every time I showed up to the clinic, there was a different task for me to do.   I’d come in one day and there’d be a parent who didn’t have access to child care.  I’d watch their little one, so mom or dad could have their appointment.  Years of high school babysitting came in handy – especially since some of these children were uneasy.  In their hearts, they knew that their parent was dealing with something challenging, even if they didn’t understand.   Sometimes, I’d be asked to visit patients in the hospital who were experiencing the worst of AIDS.  Many had lost their support systems – or had family far away – since it was much harder to find care for the disease.   I went to see a patient one day, who amidst tears told me he wasn’t up for visitors.  I had walked in to his room after he had received very bad news – news that his treatment was working and that he was likely on a road where he wouldn’t return.  He was crushed.   I was crushed.

Then there were the moments that were about medicine…and morality.  I walked in one day and one of the doctor’s was on the phone with a patient.   Once the doctor hung up, he opened a drawer a revealed a stash of medicines.  He started putting a bag together.   He let me know that the man on the phone had just lost his insurance and therefore his medicine.   He noted that the patient’s HIV status would like evolve to AIDS if he didn’t have regular access to medicine.   The secret stash was not exactly what one would call by the book.  But that was a defining moment in my life when I realized that you must question all the rules, and put always live to a higher purpose.

In my return to the Quilt I spent a lot of time thinking of now and then.   We have better treatments, but we often don’t get them in the hands of those who need them.  We fail to see the bigger picture intersections of our societal framework with the disease itself.   In Washington, DC, the rate of HIV/AIDS among African-Americans is equivalent to many countries in sub-Saharan Africa.   The segregation by socio-economic condition, many times race, and quite literally by a river – both make it easier for other Washingtonians to ignore what’s going on, living in blissful ignorance.

I also believe that part of the challenge is the intolerance that still exists around the disease.   Different from my Duke experience, my only guarding task a few weeks ago was to ensure that no one stepped on the Quilt.  However, behind closed doors and on our larger scale, our continued fears to discuss sexuality combined with a waning sense of obligation to a broader human kind, both play a big role in how we address HIV and AIDS.   Well still skirt over the issues in deep whispers as if talking about it will cause transmission of the disease.   On the Mall, the meaning of the Quilt becomes so pronounced, when juxtaposed against the legions who come to our Nation’s Capital and make a beeline to the Hope Diamond and Dorothy’s Ruby Slippers.   On that day it was nice to see a few families take a moment out of the oft demanding museum schedule to reflect on legacy of this disease in our country, truly living history for a little while and perhaps taking a little bit back to their day-to-day lives.

In July, the International AIDS conference was the U.S. for the first time in 22 years. The conference made its return following President Obama’s announcement to lift the travel restrictions for persons with HIV and AIDS. The AIDS conference had stayed away for both practical and very important moral reasons. First, if you are truly going to have a conference about ending HIV and AIDS, you must have all stakeholders, including the activists who are directly affected by the disease, in the mix. Secondly, it was important for the U.S. to understand that it was plain wrong to ban HIV+ individuals and further stigmatize them – as if they will spread the disease by virtue of getting on an airplane. Indeed, this is the very type of intolerance that foments disdain for foreigners and ignores our own challenges in domestic AIDS prevention.

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From → My Passions

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