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The question posed by the organizers is “What does it mean to be HIV-positive strong and healthy?”
I’ve been HIV-positive since 1983, so that is the lens through which I answer this question and say, “It’s complicated.” It does not mean I’m an expert, just experienced.
Being healthy and strong means recognizing that those living longest with the virus, long-term survivors who acquired HIV before Highly Active Antiretroviral Therapy (HAART) in 1995/1996, have different health and social and mental health issues.
It
also means that we are all aging together. Being healthy and strong
means standing together with a unified voice. It means being visible to
our communities.
“Empower. Engage. Unify. Elevate.” Those are our intentions at Let’s Kick ASS a movement of HIV Long-Term Survivors.
It
means reexamining what self-empowerment looks like now as we age. It
means stepping into the light and not feeling shame about having a
virus. As from the earliest days, it means being partners in our health
care and not just leave to providers who may not know what it means to
be aging with HIV.
It means being visible and active in our community and the culture at large — not seen as victims or relics from a bygone era.
It
means speaking our truth with compassion and refusing to remain
invisible. The mainstream media have started telling the stories of the
first generation of people living with HIV/AIDS and aging with HIV. But
too often they only tell part of the story about how hard the struggle
has been, not the stories of how we survived. Not our stories of
resilience and strength. It means speaking our truth with compassion and
refusing to remain invisible.
We
are the majority of people living with HIV in the US. Approximately 53%
of all individuals living with HIV are over 50, in the US. By 2020 we
will be 70%. Worldwide Over 4.2 Million People With HIV are over age 50.
Those of us gathered here for this workshop are the tip of a much
larger iceberg.
Can
you image our power if we agree on an agenda and demand change of a
system that does not see us or think that we are ok simply because we
have better HIV meds?
Many
of us have ramifications of taking awful medications and recall a time
when there were no treatments when it was an untreatable terminal
illness, many of bare scars of the multiple losses from those times.
We
also bare the strength of coming out the other side. Many of our scars
are invisible, but we can wear our strength on our sleeves.
We
need to recognize that people living with HIV for 20+ years (now as
long as 36 or longer) have vastly different medical, psychosocial and
social needs than those who became positive after HAART in about 1996.
That in not to divide us but to explain the complexity of what being
strong and healthy while being poz means.
Being
healthy and strong means warriors in the fight against HIV-related
stigma. We need to reject it and strengthen empowered networks of
long-term survivors, with gatherings like this and dialog online,
becoming our advocates and finding allies, so we are louder and
stronger. It means being HIV positive is nothing to be ashamed of — it
has never been. We can’t be ashamed if we do not take it on.
It
means understanding that treatment as protection (TasP) is as important
in stopping the spread of HIV as PrEP is, even though it doesn’t get
nearly the attention as PrEP.
It
means being there for a brother or sister when they need support or
assistance and that we ask them how they are doing with empathy and an
open heart.
It means embracing our roles as elders, leaders, and teachers of our communities and our collective community.
I never
thought I’d live to be 30, much less 57. When the idea that I might be
an old man with HIV finally sunk it took my life with it. I plunged into
a period of depression, fear, anger, anxiety, and insomnia that wrecked
me. To put it bluntly, it was a four-to-five-year-long mindfuck called
AIDS Survivor Syndrome that left me feeling hopeless, obsessed with
suicide and seeing no reason why I should stick around to see how bad it
was going to get. Read about it here: http://bit.ly/AIDS2016poster
Resilience
is the key to strengthening us moving forward. To stave off frailty
from accentuated aging we need to eat well, stay active and stay
engaged. In other words, so what we can to become stronger so we have
the best shot of making these next 20 and 30 years the best they can be.
Too many of us are living in poverty; it calls for a sea change in policies to rise above it and embrace our roles as elders, leaders, and teachers of our collective community.
It means
making room for the faithful and the faithless. It means embracing one
another as the community we are and not allowing our differences to bog
us down. We need to support and accept each other just as we are.
I
look forward to meeting each and everyone one of you and hope this
another step in creating a strong community of Older Adults Living with
(thriving with) HIV.
Peace and unity,
Tez
Tez
PS. I’ll update the week here. So please check back often.
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Read more from Let's Kick Ass, here.
Let’s Kick ASS
Grassroots movement to empower, engage, unify & elevate Long-Term Survivors
Tez Anderson
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