Jeremiah Johnson is an HIV case manager and peer counselor whose
activism was instrumental in getting the Peace Corps to change their
discriminatory policy regarding HIV status. Today, Jeremiah weighs in on his
hopes for a better future for people living with HIV around the world.
January 11th will mark 5
years since I was diagnosed with HIV. Since then, I have undergone a
transformative journey filled with highs and lows, peaks and valleys. Yet
though it all - through every single challenge I have faced as a gay man living
with HIV - I have had tremendous support. I had a father who was brave enough
to stand by me even when he didn't understand me. I had friends who loved me
when the negativity from others and from within myself felt like it would crush
me. I had a loving and caring doctor who patiently listened to all my questions
(even the ones I was afraid to ask) and helped me get on life saving treatment.
It is thanks to them that a
situation which could have broken me has instead empowered me. I am stronger
and more capable than ever before to fight for my rights and the rights of
other people like me.
But, for me, it was very
dark before the dawn. Before I could step into the light, I felt alone in the
shadows, trying to find my way by myself. When I was diagnosed with HIV, I was halfway
across the world; far away from my family and friends and serving as a Peace
Corps volunteer in Ukraine. After serving for 16 months with 11 months to go, I
was offered an HIV test as part of my mid-service medical exam. I took the
test, not expecting that it would come back positive, and not knowing how much
it would change my life.
That was how, thousands of
miles from home, I found out that I had HIV. The virus that was at the center
of so much worldwide discussion was inside of me - just under the surface of my
skin. I knew the facts: I knew that I could live a normal life so long as I had
medication, but still I felt despair in
my heart. Every negative thing I had ever heard or thought about the virus or
those who carry it seemed to suddenly flourish in me, and I internalized it.
The shame, the fear, the despair all grew in and around me. I needed help, and
I desperately needed support. But, even more than that, I needed empowerment. I
needed to finish the last year of my Peace Corps service and prove to myself
that my diagnosis would not define me. I decided, even in the dark haze of my
diagnosis, that I would not retreat and not back down. I needed more than ever
to feel valuable, to feel loved, and to feel powerful.
But instead of finding what
I needed, I found opposition, isolation, stigma, and discrimination. Shortly
after my diagnosis, I was contacted by Peace Corps administration and told that
I would have to leave Ukraine - that the laws there would not allow me to
complete my service. When I later asked them if I could finish my service in
another country with less oppressive laws, I was told that I could not continue
as a volunteer. According to them, being HIV positive meant that I could not
fulfill my duties as a volunteer and that they would be unable to take care of
my medical needs in a developing nation. It did not matter to them that I was
physically just as strong as ever, or that all I needed was regular blood work
and possibly treatment to keep me strong. It seemed that Peace Corps saw me
only as a burden - as a liability that needed to be returned home immediately.
The loss I felt was
tremendous, and the obstacles ahead of me felt insurmountable. Instead of
support, I was surrounded by people who seemed ready to get rid of me. Instead
of empowerment I had been shown just how little worth I had. Instead of love, I
felt despair - deep and profound and all encompassing. Behind me I saw only
loss: The loss of the work I was
completing in Ukraine, loss of the hopes
I had for the projects started in the small town where I had been stationed, the
loss of the friends I had made and the students to whom I had taught English, and
finally, the loss of my perfect health. In front of me, I saw fear - the fear
of being forced to tell friends and family why I had returned home, the fear of
unexpectedly having to find a job and a place to live, the fear of finding a
doctor and confronting my new diagnosis.
It took a friend - an
amazing person in my life - to remind me that I was not powerless and that I
was just as valuable as ever. In my darkest moment, my friend lifted me up so
that I could see the path forward- so that I could see my way back from the
brink of destruction. It is because of that support that I felt strong enough
to contact a lawyer about my dismissal from Peace Corps. That lawyer then
connected me with the American Civil Liberties Union, who took my case and
helped me challenge the legality of what Peace Corps had done. From there the
support around me grew - as I felt more empowered, more friends and family
rallied to my side and gave me the love I needed to fight the negativity that
was invading my life. I found a job where I could be out about my HIV status. I
found a doctor who treated me as a peer and gave me confidence in managing my
own health. Things still felt dark, but the warmth around me let me know that
night was almost over - that I was headed back to a better place.
Just six months after being
kicked out, the dawn came. The Peace Corps stopped defending their policy and
announced that volunteers with HIV would be able to continue their service
uninterrupted. It was a victory not only for the rights of volunteers living
with HIV, but also for me, personally. It showed me that no matter what others
said about me, I could stand up to anything so long as I had support. With the
help of my friends, my family, and my doctor I would not only survive - I would
thrive.
It hasn't been all smooth
sailing since that time. It is never easy to be part of such a highly
stigmatized group of people - but with every bump and every fall, I have had a
network of people to help catch me- to help me find my way back to where I
belong.
The support that helped me
fight back against discrimination is the kind of support that every single
person living with HIV should receive. Every. Single. One. I don't care how
they got HIV, where they live, who they love, what ethnicity they are, how much
money they have, or what gender they are.
We all deserve to be loved, embraced, and empowered. We should all have
the right to access the best medications that don't produce side effects. We
should be protected by our governments, not prosecuted by them. We should all
have healthcare from nonjudgmental doctors who treat us as equals. We should
have friends and family who stand by us and help us continue to reach for our
dreams. We should all be treated as amazing, beautiful, sexy, and very capable
individuals. We should all be treated as more than a virus.
But right now for the 34 million people living with HIV there is no guarantee for support, no
guarantee for love, no guarantee for safety, and no guarantee for medical care.
Right now there is so much work that
must still be done to protect the rights, dignity, and dreams of HIV positive
individuals. And we can't wait because right
now millions of people still need
life-saving treatment. Right now, 45 countries still have laws that
undermine the rights and well-being of people living with HIV. Right now millions of people, human beings just like you and me, are dying
every year because medications are too expensive, too inaccessible, too far
away. Right now the dreams of millions of people living with HIV must
take a backseat to fear: fear of violence, fear of financial insecurity, fear
for their health, fear of being rejected, fear of being alone.
We can change this. You and
me. We and our friends. We can raise awareness through social media. We can
write our legislators. We can learn what efforts are being made to stop
injustice and support them. We can empower people living with HIV with our
words and never make them feel limited - never clip their wings. We can demand
that governments, international organizations, pharmaceutical companies,
medical doctors, AIDS service organizations, and HIV prevention organizations
place the wellbeing and quality of life for people living with HIV above ALL
other priorities.
Support and justice is
obtainable for all those with HIV, but we must all work together to demand for
change. It will not be given freely. We
cannot keep the status quo; we must look at existing systems, organizations,
and policies with new eyes and learn to question what can be better. We will
have to think outside of the box and ponder what makes people living with HIV
feel like victims, feel helpless, feel stupid, and feel abandoned. We will also
have to consider our own role in the stigmatization of people living with HIV.
How do we speak about HIV when we think no one around us is infected? How do we
deal with the possibility that a sexual partner might be living with HIV? How
do we truly and honestly feel about people who are HIV positive?
How do we change ourselves? How do we change the world to be a safer, more empowering place for people living with HIV? How do we stop stigma and discrimination?
Today, 5 years after my
diagnosis, I am thankful that I feel safe, strong, and healthy. I dream of a
day when all people living with HIV can feel the same way.
Jeremiah is currently a 2nd year MPH student in the sociomedical sciences department at the Mailman School of Public Health. Diagnosed with HIV in 2008, Jeremiah has firsthand knowledge of the impact that stigma and discrimination have on people living with HIV. Since his success in changing Peace Corps' discriminatory policy on HIV, Jeremiah has continued to raise awareness for the detrimental impact that stigma has on the spread of HIV and the lives of those living with the virus. Most recently, he spent two years in northern Colorado working as a case manager and prevention specialist at the Northern Colorado AIDS Project. There, he learned that there is still much work to be done to improve the quality of life for people living with HIV.