Monday Morning.
3:30am. I wake. Wide awake.
Unsure why. TV is turned
off. I’m just…awake. Lately, I’ve been stressing about this
upcoming bike ride (which is in 3 weeks, 5 days and 12 hours)….when do I drop
off my bike to be shipped to SF? Have I
trained enough? Am I training
enough? Do I have everything in
order? I need to write “thank yous” to
my donors….
…oh yeah…Summer classes start THIS week. Shit!
What the hell – I’ll turn on the TV and see what’s on and
maybe something will bore me until I fall back asleep.
Nope. HBO is on and
the documentary “The Battle of amfAR” is playing. Instantly hooked. I’ve watched this documentary before. There isn’t a documentary on this subject I
haven’t watched.
Watching documentaries like this stirs up many emotions
within me, particularly when looking back at the history of the HIV/AIDS
epidemic from the early 80s….Ryan White…how the “Great Communicator” Ronald
Reagan couldn’t even say the word “AIDS” during several years of his
presidency, which was coincidentally during the plight of the AIDS epidemic. It stirs up the social change activist in
me. I think it’s fair to say this would
stir up similar emotions in most rational and genuine individuals. Understanding how we got to where we are today
is an important social responsibility – FOR
EVERYONE. It also helps me understand
what has been done over the years, who the major game players are and have been
in creating dynamic social change, and what still needs to be done in a
complacent world.
This past December, I helped organize an event at my school
for World AIDS Day (December 1). To
preface this story, my school’s mission pertains to creating social change
(through psychology and counseling) and be aware of our own social
responsibility, as clinicians. My
co-worker and I came up with a great idea to cut out these paper red ribbons
for students, faculty and staff to 1.) write a personal message on a ribbon of
hope, understanding, sympathy, memoralize those we know..etc. … and 2.) hang
them in the school’s café window for everyone to see. In the weeks leading up, we marketed the
event around school to get the word out.
Throughout the week of December 1, we noticed there were maybe a dozen
or so ribbons hung up and that the response was…minimal and we wondered why. It came to me one night. I was in an evening class and we were on a
break in the school’s café. I promoted
the idea to my fellow classmates and other students in the café to partake in
writing a message on a ribbon and hanging it up on the window. One (younger) student said to me: “what is this for? What do I even write? I don’t even know what this is…”
I didn’t know how to respond. I didn’t want to judge. I felt myself going there (which is
unfair). But it occurred to me that it was
not this student’s fault for not knowing or understanding what HIV/AIDS
is. There is a systemic social issue of
complacency with HIV today. As a
society, we’ve accepted that the illness is chronic and can be maintained
through a daily pill – that education about the impact this disease had (still
has) on people has halted and is not being addressed in today’s world. These
drugs do come with side effects. They
are – by no means – a solution to an issue where 1 million people in the US are
still living with HIV today – and, of those, 1 in 6 people, are unaware they
even have the disease because they are too afraid to get tested.
Today, many HIV organizations do not have those living with
the disease sitting on the boards and staff.
If they do, the stigma that still exists creates fear of many people to
talk about their own stories in order to create change. The emotional shift, from the 1980s and 90s,
has most definitely changed because of this.
That’s a problem.
This disease belongs to EVERYONE…not just me.
“HIV/AIDS is more than
statistics. HIV/AIDS is a prolonged
physical and mental torment for many thousands of human beings. It’s heart rendering confusion and despair. It’s a confrontation of one’s mortality in
their prime of life.”
- Elizabeth
Taylor
“In a society that
proclaims to value human life above all else, the deliberate withholding of the
means of self-protection is more than passive neglect. It is an act of pre-meditated murder.”
- Elizabeth
Taylor
One thing that’s constant with the progress of HIV/AIDS –
from the 80s to today – is fear and trepidation. The urgency has abated. It’s easy for me to sit here, on my Mac
computer, in my own apartment, training for a ride to raise money for HIV/AIDS
services … I recognize the privileges I have.
I can use those privileges to write this blog with confidence, a little
more self-respect, and a great deal of passion & emotion (that people can't and won't understand) to speak up and keep the awareness going.
Every 10 min a person is infected with HIV.
30 million people have died from this disease.
34 million today, worldwide, live with the virus.
One documentary that is a must see is HOW TO SURVIVE A PLAGUE ... (see trailer below)
It's the story of Larry Kramer and Peter Staley - the founders of ACT UP and TAG - and how they became the leaders in advocacy and drug research for HIV medications today. Without this piece of history, I believe we wouldn't be where we are today. (YOU CAN WATCH THIS DOCUMENTARY IN IT'S ENTIRETY ON NETFLIX). I implore you to watch it.
Sidenote: I saw THE NORMAL HEART on Broadway in 2011. I'll never forget it. Ever. Joe Mantello as Ned...Ellen Barkin as Dr. Brookner...The acting was visceral.
Post curtain call, as the lights came up, EVERYONE in the theatre couldn't move or leave. It was 90-120 seconds of pure processing of what we all just saw. As I left, Larry Kramer (the playwright and supposed protagonist - Ned Weeks) was standing outside - below the marquee - handing out fliers with some sort of information, most likely about HIV/AIDS. It was like an extension of the play and, apparently, he did this after every show. To understand this, you should watch the documentary above. He is a pioneer.
With that, I’m going for a long bike ride.
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