Courtesy Isadore Boni
Isadore Boni, San Carlos Apache, was diagnosed with HIV and hepatitis C in May 2002. After his disease escalated to AIDS in November 2004, he was cured of hepatitis C last year. Now he is an advocate for HIV prevention and HIV/AIDS treatment and care.

National Native American HIV/AIDS Awareness Day: 'It Means Life'

Isadore Boni
3/19/14

National Native HIV/AIDS Awareness Day is March 20, 2014

PHOENIXWhen I was diagnosed with HIV in 2002, I felt alone. I knew no other Native who had this disease. I knew the stigma was very high, hearing stories of people losing their jobs, apartments, and having huge purple spots on their bodies. That was the HIV/AIDS I was taught.

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So when I was diagnosed, I was living a life of seclusion, disappearing from the world I once knew. I was worried about people finding out. I told my mom the next day I was diagnosed and she said, “You’re my son and I love you no matter what.”

I knew I couldn’t live on the reservation, and I left for Phoenix. With just a backpack and bottled water (it was 115 degrees) I sought shelter, eating at soup kitchens, and navigated the system for people with HIV.

I was so fearful of going to the Phoenix Indian Medical Center for treatment because I knew people who were employed there and they were from my tribe. I knew I would be outed if I received treatment there.

After a few years of living with HIV and eventually obtaining housing, I started speaking out. This brought me to the National Native American AIDS Prevention Center, and I became a Community Advisory Council Member. This was in 2006. Two years later in 2007 with the help of three collaboring Native agencies we had our first National Native American HIV/AIDS Awareness Day.

Working as a janitor that year I knew I could not fully send the message, but I was wrong. I also entered the Phoenix Native American Recognition Days Parade with a banner with my name. I knew then that this was my mission.  I received an overwhelming amout of support from Natives but I also experience discrimination.

People began accusing me of turning my tribe into an AIDS reservation. An ICU nurse in a Phoenix hospital asked me to leave the hospital where I went to visit my dying brother for fear that “I would get patients sicker.” When, in actuality, with my health I was the one at risk. Not them. I knew then that some of the most educated can also be the most ignorant.

What does National Native American AIDS Awareness Day mean to me? It means life. It means preventing HIV but also providing compassion to those who live with this virus. According to the CDC Native people have the shortest life-span after infection. This could be a lack of education on reservations, stigma, and denial, including lack of resources, to name a few.

Throughout the years of living with HIV I traveled the country sharing my story.  I personally know countless Natives who have died. They, in my opinion, should be remembered too. If we are completely honest we can say we know someone who has HIV, or who are at great risk.  This is the day to remember how far we have come but to see how much work we still have. I have said this before in my presentations and I will continue to say it again, “love and compassion are more powerful than any medications I’ve taken.” I am a long-term survivor, and I will continue to share my message. I have overcome many obstacles, and I thank my Higher Power for blessing me with the gift of a voice and courage. I feel like I did not chose this. I was chosen.

This article was originally published by Wellbound Storytellers. Read more blogs about healthy living written by Natives throughout Indian country at WellboundStorytellers.com.

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