What Message Do You Want to Send to the World About HIV/AIDS?
November 15, 2010
Even though every day may be World AIDS Day, in a sense, for people living with HIV/AIDS or working in this field, this day is an introduction to HIV/AIDS information for many people. We asked HIV-positive people and advocates from all over the world to tell us the message they'd send about HIV/AIDS if they had the world's attention.
Yvette Ogletree, Kemet Coalition, San Diego, Calif.; Diagnosed in 2003
That HIV does not discriminate, that it affects all of us, whether or not you're infected. There is someone in your community, in your life, in your family, that has been touched by HIV. So, just to think about that and keep that in mind.
Joe Hammoud, Youth Coalition, Beirut, Lebanon
The message that I want to get across is that HIV can be stopped. And it's just a shame that power and money are the obstacles for universal access, and for treatment, and for even awareness. It's just a shame that we're putting money and selfishness in front of human rights, and basically dealing with humans. That shouldn't just pass like that; these are lives that we're dealing with. It's sad to see that some people are really so selfish when it comes to this. They want to stop the funding on this epidemic because they're moving their interests somewhere else. It's a matter of interest, apparently; it's not a matter of the epidemic we're facing.
Patricia Shelton, Peer Educator and Consultant, Bronx, N.Y.; Diagnosed in 1991
Please get tested. And especially ladies and young girls: Do not place your lives in someone else's hands. Wear condoms. Talk amongst yourselves. But please, get tested, and wear condoms. Just protect yourself.
Nikki Mawanda, Transgenders, Intersex and Transsexual Uganda, Kampala, Uganda
I would say that, as a transman, I have not been catered to in my country. And I know many trans people are not catered to by the HIV and AIDS prevention policies in the world. I would say that, as trans people all over the world, we are dying of HIV and AIDS. We are dying every day of different illnesses related to HIV and AIDS. But the right way, if we want to fight this disease, is we try as much as we can to fill the gaps. Let people not assume that trans people may be half-sex this way, half-sex the other way. If we are saying MSM, we are not catering to everybody. If we are saying WSW, we are not catering to everybody. So let's fill those gaps. That's the right thing. We should come up with programs and policies that really cater to the gaps within communities. Because even under the transgender umbrella, we have intersections. I'm a transman. It doesn't mean that I'm a WSW. You won't find me there. I'm a man who sleeps with women. I love women. So let's fill the gaps.
Sherri Smith, Ebony Sisters Campaigning for AIDS Prevention Education (ESCAPE), Columbus, Ohio
In order for us to beat this disease, we're going to have to beat stigma. We're going to have to understand what stigma is. It's not just discrimination; there are all these different components to stigma. And we've got to not only continue to just say stigma, but we have to start doing things that break down the stigma.
Even amongst our own group -- of people who do HIV/AIDS education, treatment care, whatever -- we have to break down stigma. Because we have a lot of stigma within our own rank and file. Until we start breaking that down, we're not going to beat this disease. Again, we've got to be a collective group and we have to be united, and that united means to break down stigma on all fronts. Then we can work with the society at large. And then we can also begin to move into that other issue of the prevention, the treatment . . . all of that's going to work so much better when we break down stigma.
Stigma is real important. I've been screaming and blowing a horn for a long time about stigma. And it's time.
Abraham Calleros, Milwaukee, Wisc.; Diagnosed in 1986
Protect yourself. And HIV does not have to kill anymore. You can live long, healthy lives, but you have to change your lifestyles. I've been living with HIV for 26 years.
Take control of your life. Don't let HIV, or any disease, take control of your life.
Chivuli Ukwimi, International Gay and Lesbian Human Rights Commission, Cape Town, South Africa
I think the greatest way to win a war is to put differences aside and be united as one front. I mean, divided we fall; united we stand. And we need to put aside all our differences. We need to put aside our prejudices. We need just to put aside every kind of thing that hinders our effective HIV programming.
I also want to tell the world that HIV is real. It's here. And we don't want it. And we have to do whatever is possible to get rid of it -- even if it means sitting at the same table with gay people, transgender people, injection drug users, any kind of person. We need to come to the round table and say, "OK, we're different people, but we've got a common enemy. And we need to fight this common enemy. And only that way can we win the war."
When people ignore the MSM epidemic, for instance: I call it the "untamed source." There's a whole big setting, but then there's this little fire that you don't want to put out. And this little fire will always keep igniting, because you don't want to deal with it. But you need to tame that source, or else it's going to grow into a huge, huge fire that you will never, ever be able to put out.
Yolonda Reed, Broward House, Fort Lauderdale, Fla.; Diagnosed in 1989
The message that I would like to send regarding HIV/AIDS is: We're not dying from the disease; we are living with the disease.
Benoit Matsha-Carpentier, International Federation of Red Cross Red Crescent Societies, France
Keep on the fights. We technically shouldn't be where we are. We have all the tools, all the money, and everything to sort out the problem. And this is not even an HIV problem; it's a health issue. We have to try to push people to keep on investing in health, to sort out the problems.
Cyndee Clay, HIPS (Helping Individual Prostitutes Survive), Washington, D.C.
I think the most important thing for me personally in preventing HIV around the world is that we end the USAID restrictions regarding sex work, and the pledge that is in PEPFAR -- the anti-prostitution pledge. It's negatively impacting sex work programs, and sex work organizing, and sex work human rights in the countries where it's being implemented. So we need to end that. We need to end the pledge.
Allen Kwabena Frimpong, Harm Reduction Coalition, Newark, N.J.
The single message I would want to deliver to the world about HIV is that you can still live a healthy life, and a productive life, and still be positive. I think people still honestly view it as a death sentence. And I think if you talked to a lot of people out there who are still living so many years with HIV, we'll know that it's not one.
I think that's the one message that I would want to send to the general public. Because it's part of dealing with the stigma. I think the general public might not necessarily be knowledgeable about the issues sometimes; people who are living with HIV view them as the enemy, because they don't want to be stigmatized by them. We all want to be able to build relationships with each other. And then if someone who is living with HIV can't feel comfortable in the environment where they're constantly stigmatized, you have to disarm those people. I feel like part of the disarming is that education, and sending out these types of messages that dispel the kind of myth that reinforces that stigma, that reinforces that oppression.
Josephine Y. M. Kong, Hong Kong AIDS Foundation, Hong Kong
I think actually it's very simple. HIV is just a virus, like you get a cold, you get a flu or something like that. It's not a death sentence, like decades ago. It's a long-term disease like heart disease, or something like that. You treat it. You give proper treatment. People can live healthily. They are not, you know, a big virus walking with two legs. We should just take it and treat it like every other disease we face every day. I think that's the biggest message.
Devin T. Robinson X, National AIDS Awareness Poets
If we don't work together -- gay, straight, black, white, Hispanic, positive, and negative -- we will fail. Young, pretty, old, ugly: We will fail. If we don't consistently realize that this is a battle that we must work to as a cohesive unit -- from the state, to the church, to the temple, to the mosque -- we will fail.
"Buprenorphine Babe," International AIDS Conference, Vienna, Austria
People should not be afraid about it.
Christopher Ervin, Aniz, Inc., Atlanta, Ga.
I would tell the world that we are all affected by HIV: directly, through our lifestyles; but also through the people we're around -- our loved ones, our family members. For me, my children can all be affected by HIV. And so we all need to take ownership in making sure that HIV is eliminated from the world. If we start working on HIV, we can also start looking at all those other behaviors that put people at risk, that make people feel bad about themselves, that make them feel less than human.
David Bond, Project Awareness, Las Vegas, Nevada
Protect yourself, and protect each other, because we're in this together.
Winston Clark, The Gathering Center, Orlando, Fla.
HIV and AIDS are not spreadable through the air. You can't get it by touching somebody, or just by eating after somebody. So don't discriminate against somebody just because they have HIV/AIDS. Try to be there for them; try to be understanding. That's basically it.
Ian Hodgson, European HIV Nursing Network, United Kingdom
HIV-positive people are no different than anybody else.
Liam Osbourne, World AIDS Campaign, Leiden, The Netherlands
I would like to send the message of: We need your support. There's a lot of fighting that still needs to be done. But hopefully if we all go forward together, we'll make it.
Patria Alguila, Miracle of Love, Orlando, Fla.
There's hope. And there are people who truly do care and love. So don't be ashamed; don't be afraid. And make your move.
Shannon, International Federation of Red Cross and Red Crescent Societies
You can live with HIV, you know? You can spread positive change, as well, and you can lead a happy and meaningful life. It's not a killer. And people should not have the same stigma that's around HIV.
Comment by: aplay
Sun., May. 8, 2011 at 7:54 am EDT
i wonder that , scientist can find another medicine for every disease but why don't they find for HIV?
Comment by: Angela
Mon., Apr. 25, 2011 at 12:26 pm EDT
There is no need to be afraid of living with HIV/ AIDS. You can live a productive and healthy life.
Comment by: Stopher
Fri., Apr. 15, 2011 at 5:13 pm EDT
We are a red feather among black sheep.
Comment by: POONAM
Tue., Apr. 5, 2011 at 11:31 am EDT
WELL,BE OPTIMISTIC THAT CURE WILL COME UP SOON AND IT WILL NO LONGER BE A GHOST BUT TILL THEN YOU CAN LIVE AS LONG AS YOU WISH WITH MEDICATION.PEOPLE ARE LIVING WITH IT FOR 30 YEARS AND STILL GOING STRONG.
Comment by: Lilly
(New York, NY )
Sat., Feb. 26, 2011 at 3:13 am EST
I have been positive for 19 years (1992)...I have been through many different stages (TB,PCP,Lipodystrophy, Neuropathy,Wasting,and Insomnia); but you know what!! I'm not letting AIDS take control of my life-if you make positive changes in your life and love yourself you can combat the virus and take control. That's what I did I was not going to let AIDS take my life from me,in addition, my son was my inspiration he kept telling me to do something for myself-I was not going to leave him alone. I buried my 2 brothers and my sister to this virus and I refuse to let it take over my body, mind, and spirit...I fight the virus, write letters to it, work as a Peer Educator, and love life. Now I'm fighting stigma I can't let fear of disclosing take over my life-as it has others.I know so many women that are afraid of disclosing due to their family,friends, and their childrens school peers they don't want their children to get bullied. I understand their point that's why I want to fight stigma for those whom can't stand up and say I'm HIV Positive.
Comment by: mikey.
(long island, ny)
Wed., Feb. 23, 2011 at 8:32 pm EST
my mom just tested positive for hiv, ok we found the problem now theres a solution we are gonna find. i would never leave my moms side for any, if anything its brought us closer. there are many different medications to take to live a good life, anyone with this disease i have one thing to say to you, god loves you and he doesnt give us anything we cant handle.
Comment by: Anonymous
Fri., Dec. 3, 2010 at 11:28 am EST
Really true and encouraging comments there
Comment by: Anonymous
Thu., Dec. 2, 2010 at 4:21 pm EST
god is my friend and stimga is evil
Comment by: Judith
Wed., Dec. 1, 2010 at 3:32 pm EST
It is what it is... can't change the past but certainly i can make a path With God by my side, i can handle anything, besides i can't let my self die i got 2 beautiful girl, my hubby n my pit bulls they don't have a voice but i speak 4 them, in this society they r judge like me by ignorance n fear by people who don't educate themselves.
Comment by: L
(Lake Mary, FL.)
Wed., Dec. 1, 2010 at 2:44 pm EST
We need affordable medication. Many of us don't qualify for assistance in our retirement, but the medication costs are unaffordable for just about everyone who has to pay for them. Not to mention the constant medical monitoring.
Comment by: Iván Camilo
Wed., Dec. 1, 2010 at 11:50 am EST
Two years ago, i discovered that my partner had HIV and he was having an affair. That year, i started to feel sicker than i could imagine. I started to feel every HIV sign and i was really sure that i had contracted HIV. After one year and a half, i decided to get tested and the result was negative. I was just 16. Today i say thanks, because i could feel for a moment what is like to fight against every tiny living being.I understood for a moment what is life. Life is about fighting for keeping it. I've understood what love is. Since that weird year of me feeling so bad, now i feel so alive because i understand humanity. I stopped being so judgemental. If every person could feel what i felt then, we all would care about others feelings. Its not a matter of religion, country, political movement, race or sexual orientation. It is about loving living being. Every day of my life, my thoughts are with you, i couldnt be more thankful than i am with those who live with HIV who are using their experience to prevent the spread. I admire so much those +- couples, because love is about that, that is what many seronegative couples dont have. Thanks to those who stayed with me in this website cheering me up, people more faithful than the ones who said "we are your friends" and ran away from me. My strenght and my best wishes are with all of you. Thanks, thank you so much for making me a better person than the one who i used to be. Thanks.
Comment by: Mario
(Palm Springs, CA)
Mon., Nov. 29, 2010 at 1:45 pm EST
I am confused by the comments people made about not fearing HIV/AIDS. So are we supoosed to embrace the disease and not care about getting infected? Ask most people who are infected, or have lost a loved one, as I have, if HIV is something they want, and I would venture to say, "NO!". I think the disease is fearful, the postive people with HIV are not. Making HIV out to be "just another treatable disease" is potentially leading many down a scary path.
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Comment by: Healthy young woman
Tue., Apr. 5, 2011 at 12:15 pm EDT
HIV was once an illness to be feared. But now, if you care for yourself, visit your doctor, you eat right, take your medication, abstain from drugs and alcohol and exercise you can and will lead a long and healthy life. I plan on it. I cannot undo my past, but I plan to live with my daughter and my husband WELL into my future.
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