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This Positive Life: Marco Benjamin Lives Openly -- And On the Open Road

June 3, 2013

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I know you're excited about your work, and you're a very hard worker, so why don't you tell us about the work that you do?

When I became positive, I felt like my current job doing architecture left me with no substance. Yes, it was great to design a house for somebody to live in, but when I go knock on their door and ask them to use the bathroom that I designed, they're not going to let me in.

I worked for an architectural firm, and I saw on the Internet, on Craigslist, that they were doing an HIV protest -- against Johnson & Johnson to lower drug pricing -- in my community, in New Brunswick. I wanted to go. I really wanted to; this was my first step into doing something with HIV.

I didn't make the protest, because I was notified too late. But that evening, I went to a local bar to sing karaoke and a girl walked up to me and started talking to me. She told me that she was involved in HIV protesting. I was like, "That's so weird; someone emailed me earlier today about protesting." Long story short, it was her. So, for me, it was kind of like fate, that I met her at the same place. She's from California, I'm from New York.

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From there I started doing protesting and demonstrations on drug pricing, strictly as a volunteer. Shortly after that, she offered for me to join them in Washington, D.C., to do some protesting against the FDA for approving PrEP [pre-exposure prophylaxis] for HIV prevention through Gilead, and also to start helping a demonstration against Hershey for discriminating against a 13-year-old boy who had HIV and wasn't allowed into the Milton Hershey School.

I quit my job to go to this week of demonstrations. After leaving there, I was hired as a contractor to mobilize individuals to join us for a Keep the Promise March in D.C., which would happen in July, prior to the International AIDS Conference being held in the U.S. for the first time in more than 20 years. And, since that went so great -- the mobilization efforts that I did -- I have been hired as a program manager for the Condom Nation program through the AIDS Healthcare Foundation.

Just for the sake of timeline, you were diagnosed in 2008, and then you said that you met this woman and started doing protesting. Do you know what year that was?

It was late 2008.

So, it was the same year.

Yes.

And that's how you got involved in the AIDS Healthcare Foundation?

Yes.

And your current title at the AIDS Healthcare Foundation is Condom Nation Program Manager?

Yes.

Do you want to talk a little bit about Condom Nation and what you do in your role?

Sure. Condom Nation is a public health program. Last year, it started as a campaign. We thought it'd be great to drive around the country and give condoms away for free, especially in underserved neighborhoods. Last year, we gave away 4.5 million condoms in 25 states and visited 40 cities. We've gotten such great feedback from last year that we decided to make Condom Nation a permanent program. We realized there are a lot of agencies that cannot afford to buy condoms to give them away for free in their community to help lower the rate of HIV and STDs. Currently, we have 50,000 new infections per year in the United States.

What we decided to do, in making this a permanent program, is we upped our goal to 50 million condoms this year by way of a tour where I drive a van and an 18-wheeler truck follows me, and we visit cities and under-serviced neighborhoods to provide condom distribution for free. So, pretty much, we'll roll into a city and we'll partner with an agency that already exists that provides free testing. We allow them to test through our mobile units and we go into neighborhoods that are really under-serviced.

"One of the best days is when a mother comes with her children or young teenagers and tells them to reach into the bucket and grab condoms."

The feedback that we get from the community is great. One of the best days is when a mother comes with her children or young teenagers and tells them to reach into the bucket and grab condoms. The condom use talk should start from home. I also think it should start in churches. That's just my personal opinion. We all look up to the person that's standing in front of the pulpit preaching to us, but he's not preaching to us on how to protect yourself and love yourself, too.

When we do these events throughout the nation, we try to make them happy events. A lot of people have problems holding condoms, or buying condoms. When you go to the pharmacy, they're locked up. So you have to call somebody, "Can I get condoms?" "Oh, condoms in aisle 9!" So, now everybody knows I'm there buying condoms.

We feel that if we're able to bring basic prevention back into the hands of the community, it'll help people to have conversations about safe sex and protecting yourself before you have unprotected sex.

What has doing this work taught you?

Doing this work has taught me that folks like myself who are HIV positive still have a lot more work to do in educating people and letting people know what HIV really is. There are many times I go into cities or neighborhoods and there are people who think you can get HIV from just drinking out of a glass from somebody. Or just casual contact with someone. I'm not a physician or a doctor, but to be able to educate people, share something that they didn't know about HIV, it's amazing. It's awesome. I know a lot of people cannot be in the same position as I am, especially since I'm so open about my status. But, at some point, I think that that conversation needs to happen -- especially with someone who's going to be your partner, or someone you have an encounter with.

Do you ever get tired of talking about HIV or thinking about it all the time? Are there times when it really does weigh on you for a minute to talk about this virus?

Yeah, there are times when it does. I try not to live, sleep and eat HIV all the time. I still try to find some free time so I can go and hang out. In the field that I'm in, it's hard to do that. Especially with social media, and people knowing that I'm so open about my status. It doesn't fail that every now and then you get an email from somebody saying that they've just been diagnosed with HIV, and asking, "What do I do? My life is going to end. My world is over." Just being able to help them out and give them some words of wisdom and encouragement is great. So I don't mind having to spend most of my days talking about HIV.

What do you think are some of the greatest issues facing the HIV community today and what do you think can be done to change the situation?

The biggest issue is really stigma, I think. Is there a way to get rid of stigma? I don't think so. Eventually, by talking about it, yes you can decrease stigma, but there will still be stigma regardless.

For me, I was tired of dating someone or being friends with someone who now didn't want to be my friend or date me; now they wanted to tell everyone that I'm HIV positive. What I did was, I wrote on a T-shirt, "This is what HIV looks like." And I posted my picture on Facebook, because I was tired of people using my status against me to try to hurt me. It wasn't until after I did that, that I really became more comfortable with my HIV status. Because I have nothing to hide.

I don't think it's solely the HIV-positive person who has to do something. I think that, as a community, everyone needs to be a little more accepting about it. If HIV is put in our faces in a way -- I don't want to sound harsh, but if it's out there, blatantly out there, they'll see HIV as any other chronic disease, whether it's hepatitis or diabetes. And they just won't have that stigma, or be scared to interact with someone who has HIV.

Could you compare how you feel about having HIV now to your feelings when you first learned that you were HIV positive?

When I first learned that I was HIV positive, it just really hurt. Even till today, I still think about it sometimes. I don't beat myself up about it, because it's done; I can't change it. Back then, I did have my family as a support group, but what did they know about HIV? Just as much as I had shared with them.

"It wasn't until I started to go to these demonstrations with AHF and surround myself with more positive HIV-positive people that my world changed."

It wasn't until I started to go to these demonstrations with AHF and surround myself with more positive HIV-positive people that my world changed and I realized that I could still be somebody, I could still be loved, and I'm still Marco at the end of the day. I just have a virus.

What advice would you give to someone who just found out they were HIV positive?

The most important advice would be to link yourself to care, by way of treatment. But the most important thing is to see a doctor and to keep going back to see a doctor, is the first piece of advice I would have.

Second, everyone says, "It's not a death sentence. It's not the end of the world." But you know what? You don't want to hear that when you are first diagnosed. For me, it worked, but it may not work for everyone. Try to find a support group, or other people who are in the same shoes as you are so you can relate a little bit and have a conversation about how to deal with your virus better.

Do you have anything you want to say? This is your time to speak to the people out there and use this as a soapbox.

The only thing that I would like to say is, that for people who are currently HIV positive and hiding their status, it is a big hurdle to jump over, but be true to yourself and be true to the next person as well. At least disclose your status or have the conversation about protecting yourself. It's not fair to put someone else in harm's way, if you would, or pass the virus on to someone else, even if you got it without knowing. It's still not right. And, to put yourself into care, that's really important. And for the folks that are not HIV positive, ensure that they should always wrap it up before they have sex with somebody.

This transcript has been lightly edited for clarity.

Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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This article was provided by TheBody.com. It is a part of the publication This Positive Life.
 

Reader Comments:

Comment by: Tamar (Flushing, BY) Wed., May. 7, 2014 at 8:43 am EDT
Reading this has given me a lot of encouragement. I have a grandson that is only 9yrs old and is HIV positive. His parents are dead and we the grandparents are trying to adopt him. We have not have any experience in the disease. Thank you very much.
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Comment by: Alexis Redwood (alexis.coconu@gmail.com) Wed., Apr. 16, 2014 at 5:42 am EDT
This was a perfect conversation. I have learned a lot and became more aware of how it might be to deal with yourself once you are diagnosed with HIV.
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Comment by: amber branes (san francisco,ca) Mon., Feb. 3, 2014 at 9:12 pm EST
ok u should be old enough 2 know tat so what u on meds u can still pass the virus u should tell them straight up I got this friends or no if not you an date im not saying u cant but don't have sex a condom can't be trusted either
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Comment by: sel (los angeles, ca) Wed., Dec. 11, 2013 at 12:43 am EST
Marco, You are a very kind and considerate person. You are a very positive person and I would like to thank you for sharing your story and working hard to protect others. I love how you have embraced this cause. You took lemons and made a lemons souflle! You are adding class and status to.HIV

May GOD Bless you and keep you and I hope you are completely cured in the name of Jesus!

Please keep up the great work!
but
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Comment by: carlos (conneticut ) Wed., Jul. 10, 2013 at 3:27 pm EDT
Hi Marco , I just wan to say that your very brave and I want to encourage you to keep up the good work your story is very unique . I think you have so much to offer in regards to your experience , from a boricua to a boricua papi muchas gracias.
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Replies to this comment:
Comment by: Marco (Los Angeles) Mon., Jul. 29, 2013 at 2:08 pm EDT
Thank you so much. WE ARE IN THIS TOGETHER


Comment by: Kevin (Hawaii) Tue., Jul. 9, 2013 at 6:55 am EDT
Marco, thanks for the amazing story/read! It was actually very inspirational and made me feel better about myself being positive. Mahalo and aloha!
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Comment by: Douglas (Miami Beach, FL) Tue., Jun. 18, 2013 at 11:37 pm EDT
Thanks for doing what you do, Marco. It's very important work.
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Comment by: David Akins (Aurora Minnesota) Sat., Jun. 15, 2013 at 10:32 pm EDT
Marco I found your story very inspiring. I have been positive for 28 years I found out I was positive when I was life supported to a major hospital with pcp. The doctors told me I had a year or less to live. I'm still alive and I never ever gave up. I always had support of my family. And soon began to educate my friends and the small community I live in. With my partner of 27 years who is to this day negative.
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Comment by: Cherise (New Jersey) Thu., Jun. 6, 2013 at 10:07 am EDT
Excellent interview Marco! So proud of you! You ave come along way and so happy that you found something that you enjoy and that you are out there helping others! Keep up the good work!
Love ya
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