December 1st is my birthday. I turned 26 today. Over the years, I have learned that it is a very common birthday, and I have had the privilege to befriend several of my birthday buddies, all of whom are wonderful people. But as great as we are, we are not what make today particularly special.
Today is important because it is World AIDS Day.
I know, another calendar day hijacked by a social awareness cause, but this one is different. It is easy to talk about hand washing- it is simple, straightforward, and is appropriate to talk about at all dinner tables. However, HIV is a virus that is most commonly transmitted through contact with sexual fluids- and that comes with a huge stigma. A stigma that keeps conversations about it not just away from the dinner table, but out of the family, school, church, community, and government. It’s literally killing us.
HIV/AIDS seems like ‘old news’ in the US. We’ve all seen Rent. It’s been a global epidemic for thirty years- that is longer than I have been alive. I don’t know a world without AIDS. Yes, medical treatments have improved greatly in my lifetime, and discrimination against those living with HIV has decreased within the US. But we’re not there yet.
AIDS was the cause of 10% of all deaths in 2013, the second largest killer in developing nations, and still in the top 10 of the developed ones. There are still 35 million reported people in the world who live with HIV/AIDS, and of them, 1 million of them are US citizens.
In Panama, a country of just 3 million people, there are 16,000 reported cases. That doesn’t seem so bad, right? Read that statistic again. 16,000 reported cases. If you don’t know what HIV is, you won’t get tested for it. If you don’t get tested, you don’t get treated, and you transmit then die of AIDS without anyone ever knowing.
My favorite toddler in Playona is Bello. If I thought I had any sort of resources to do so, I would have adopted Bello in a heartbeat. He lives with my host family, because for the first year of my service his mother was very sick, and then in July 2013, she died. Her cause of death is ‘unknown’ but her symptoms make AIDS a definite possibility- particularly since just days before she died, she went to the doctors and they said they could do nothing for her.
“Was it cancer? This? That?” I ask my host family. No, the doctors said it wasn’t. I ask if it was HIV. “Our race cannot get HIV. She couldn’t have had that.” I will never know if Bello’s mother was HIV positive, because even if she had been tested, her family would never admit to it. Even though Bello, his brother, and his father are at risk, they will not get tested because they do not believe they can contract the disease, or they are afraid of the discrimination would come with it. Only in Panama, right?
Not so much. In Namibia, the disease spread so rampantly through the country in the 1990’s because their society believed that having sex with a virgin would cure it. Yes, you read that correctly. And if it didn’t cure you, then it meant that she wasn’t a true virgin. I’m not going to get into how many levels of messed up that is, but it is the perfect illustration of what happens when we let stigma and discomfort keep us from talking about serious issues. Watch out, I’m going to talk about sex for a minute.
The Quick and Dirty About HIV/AIDS:
The disease is spread through contact between bodily fluids- blood, semen & pre-seminal fluids, vaginal fluids, and breast milk. It is NOT transmitted through tears, urine, or saliva. One of those first four fluids from the infected person needs to enter the body of a healthy person (usually via more bodily fluids) in order for the virus to spread. So all forms of sex- anal, oral, and vaginal- can transmit the disease. If you choose to have sex, the best method to prevent sexual transmission of HIV is with proper condom use.
Blood-to-blood transmission of HIV in the States is not common, unless you are a drug user or sketchy tattoo artist, but if you were to have an HIV-positive family member or roommate, it is important not to share items that could come in contact with blood- razors, toothbrushes, manicure equipment.
Getting tested is incredibly simple and easy. Yes, getting poked with a needle once a year sucks, but dying because your immune system staged a mutiny is worse. Always get yourself and your partner tested before becoming sexually active. HIV can lie dormant in your body for years before you show symptoms.
HIV/AIDS victims are still people. With access to the right medication, many of them can live symptom-free lives for quite a long time. They can give birth to healthy HIV-free babies, and live long enough to raise them. The technology exists to help them, but right now many are too afraid of prejudice to seek it out. They deserve and need our respect, support, friendship, and love. We need to talk about this disease more, if not for us, then for them.
I talk about HIV/AIDS with kids, teens, and adults on an almost monthly basis. I can teach you the finer skills to putting a condom on a phallic-shaped jungle fruit. I play a great game with handshakes and socks, using glitter to simulate HIV transmission and we make jokes about people who end up with AIDS on their face. But this isn’t a laughing matter.
On September 15, 2014, my friend Patrick died of AIDS. He had been a fellow student with me in the theatre department (theatre family) at UNL and we did several productions together. Sometimes we bumped elbows as artist and technician because his artistic priorities and my technical priorities were not always the same, but we deeply respected each other for our passion to the art. He was a tremendously positive cheerleader for many of us within the theatre department and his sudden death was shocking and tragic. We had no idea.
On June 30th, 2014, Patrick didn’t know he was HIV positive. He would find out a few days later, but he would tell no one of his condition. It wasn’t until a few days before his passing, when he was hospitalized for the last time and no longer able to make decisions for himself that his family chose to share with everyone the news.
It is sad to hear about the death of a friend, but what is particularly heart wrenching about this situation is that for the last 2 months of Patrick’s life, in his most difficult moments, most of his friends, colleagues, and advisors were clueless to his suffering.
I never had a chance to talk to Patrick, I am sure that he had many reasons for choosing not to share his medical condition with others and I respect a desire for privacy. However, if any part of him chose to remain silent because he feared the stigma, the shame, the discrimination that still comes along with this disease, then I’m angry. No disease- not Leprosy, not Ebola, not mental illness and definitely not HIV can make a person into anything less than a dignified human being worthy of respect and love.
Since Patrick’s death, teaching kids about HIV/AIDS has become an entirely different experience. It’s not about handshakes, glitter, and this mysterious invisible disease. It’s about teaching kids, teens, moms, and adults to love themselves by using protection, love their families by getting tested, and to love HIV-positive individuals when they need it the most.
Today in West Africa it is estimated that 4 people will die of Ebola. And 685 will die of AIDS. It will be the same tomorrow, and the next day, and the next.
My challenge for you is this: Every time you hear the word ‘Ebola’ this week, reply with a comment about HIV. Let’s get this out of the dark, both here and abroad. The developing world may seem galaxies away from your life, but American pop culture, media, and politics have global impacts. Let’s make my birthday a positive one.