The Body Covers: The XVI International AIDS Conference
XVI International AIDS Conference: An Interview With Kerrel McKay
August 18, 2006
Twenty-one year old Kerrel McKay has a lot to be happy about: She is a globally recognized youth leader at AIDS 2006, speaks for UNICEF and has established a strong non-governmental group, the Portland Parish AIDS Committee Youth Group, in her homeland of Jamaica. However behind the smiles and boisterous laughter is the sad story of a young woman losing her father six years ago to AIDS. Kerrel was nine years old when her mother told her that her father was HIV positive. With no initial understanding of the virus or the discrimination that would come along with it, Kerrel stood by her father and helped in any way she could, even after he moved out of the family home. In a touching and tearful interview with The Body's Sarah Warmus, Kerrel recounts her father's story and her decision to advocate for young people who are infected and affected by HIV around the world.
Well, I am a 21-year-old youth from Jamaica doing HIV/AIDS work: prevention and education, care and support to persons infected and affected. I got involved after my dad died from HIV over six years ago. When he got infected, I was only nine. My mom told me that he was HIV positive.
At the age of nine, did you understand what HIV was?
I understood nothing. I didn't know what was happening. She [my mother] said to me, "Kerrel, your father is HIV positive. Be very careful when you are around him."
All I could think about was that I heard people talking about HIV/AIDS. I heard them say when you're HIV positive you're going to die and people are not going to treat you well once they know that you are [HIV positive]. That was all I knew -- you're going to die, and you're going to be discriminated against.
That's must have been very difficult. What happened then?
When I found out my father was HIV positive, things were normal for me, because he did not look in any way [sick]. He was still Daddy. He still played with me; he still did his Daddy stuff.
Things were OK until he moved away to live on his own. That was when he started having problems getting stuff done for himself, and he wasn't really on the ARVs [antiretrovirals] that are accessible now. He wasn't able to get the right medications for himself. He started little by little getting sicker and sicker, and so at the time I realized that, "OK, Daddy's not able to care for himself, which means that I need to start doing so".
I would do stuff by my house, where my mom is, and then I'd drop by my dad's. I would cook, and I would clean, and I would wash his clothes, and I would go and get his groceries. When he was supposed to go to the doctor, I would go with him. I would do basically everything.
At this point, did you understand how HIV could be transmitted?
I didn't know how, but I can remember my mom saying to me, "Be careful when you're washing his clothes because if there's blood on the sheet, you can get it that way." And I was like, "Oh my god, I have been washing his sheets!" I remember her [my mother] saying to me, "Be careful of what you eat from him, because if you eat food from him and his saliva," and [other] stuff. So, I started to think, "Oh my god!" I still did not know -- I still did not understand what was happening. I still did not know how the virus [was] transmitted. All that I knew was, it's Daddy, he's HIV positive, but that doesn't make any difference because I can't leave him. You know, I couldn't.
Did you get involved with HIV activism work after he died, or were you beginning to get involved while he was still alive?
I got involved after he died. After he died, somebody asked me the most important question. They said, "Who took care of your father while he was living?" I said, "I did". And they said, "How old were you?" [When] I told them, they were very amazed that "You were this young, you didn't know anything about it, and you did all that?" That person said to me, "You have a lot to offer. You have a lot to do. You have a lot to give. You have a lot to share, and I think you should."
That was when I started thinking maybe ... I can remember while living through my Daddy's experience, every day as it got closer and closer to the end, I felt like I wanted to end my life before he died. I felt like dying was a better thing for me at that time than living. I felt if I was dead, then I wouldn't have to face the fact that I was going to wake up one day and hear, "Your Daddy's dead." You know, I felt like if I was dead, then I wouldn't have to face the fact that people looked at me [strangely] when I walked through the community. That people would say to me, "Listen, I don't want you to play with my kids because your Daddy's HIV positive". I felt [that] if I wasn't living, then everything would be OK, you know, everything would be OK. And so ... sorry, I'm getting emotional.
Please take as much time as you need. It must have been extremely difficult for you. You show a lot of strength and resilience in coming here and working towards making a difference. It's really quite an amazing story.
It was after he died that I thought OK, maybe there are other kids who are going through what I'm going through, and maybe there are other kids who need help. I'm so sorry, I ...
After thinking that maybe there are other kids who are going through the same thing, [I thought] about how I wasn't given the chance to talk about what was happening. I wasn't given the chance to express myself and express how I was feeling.
My dad died six years ago, and he never said to me once, "Kerrel, I'm HIV positive". We never got the chance to, you know, talk about it. I realized that, OK, if I can share my experiences and if I can reach out to other kids who are going through the same thing, and if I can say to parents, "Listen, you need to talk to your kids. If you are infected and there are certain things that are happening, you need to talk to your kids because this can have a lot of psychological effects on your child."
If I can use my voice to advocate for children who are being discriminated against, I thought, then I need to do it. Just thinking about what I went through, it wasn't nice.
I would not like to know that I can make a difference and not do it. I would not like to know that I can stop another child from being discriminated against and I didn't. I thought maybe I needed to step out in spite of people who want to say, "Your dad died from AIDS." If they want to think I'm the AIDS girl or whatever, I don't care.
I thought maybe now is the time for me to do something. There are many other kids who are going through what I'm going through, and I'm certain [there will be more] who will be going through what I'm going through [now].
What was the first step you took to get involved in HIV activism and education?
I told my friends. I had three very close friends, and I was always afraid. I always wanted to say to them, "My Daddy's HIV positive and I don't know what to do." [But] I was always afraid to say [that] to them. That was my first step. I told my friends one day. Out of fear, I said, "Listen, I want to tell you guys something. I don't know how you're going to treat me after you find out, but I want to tell you." I told them [that] my father died from AIDS.
They were like, "Why didn't you tell me this all along?" [It was] because everybody [else] around me [who knew], they were all discriminating against me. I thought maybe [they] would do the same because [they] didn't know anything about it either. [But] they were very supportive.
They [said], "Wow! Kerrel, you went through a lot, and you went through it alone." I told them what I wanted to do. I told them, "Listen, I want to educate other people because I realize that there was a lack of education [in my situation] and I realize that there was a great [lack of understanding] -- and because of that, the stigma and the discrimination and all of that [was intense]." [Together] we decided, OK, we're going to form a youth group, and we're going to address the issues of young people in terms of HIV/AIDS and sexual reproductive health. We're going to educate adults, and we're going to care for children and other parents who are infected and affected [by HIV]. And that was what we did -- we started.
That's quite a large task! Where did you start?
There was already an adult group in our community that was trying to address the burning issues of HIV/AIDS. I was recommended to the group -- somebody told me that this is a group that is already doing stuff. If you want to start your [own] stuff, it would be good to join that group.
When I went over to the [adult] group, I shared my story and told them what I wanted to do. They thought, "OK, [but] this is an adult group. We want you guys to form a youth group, and then we can work together." All the adults of the group, you know, they assisted the young people, us, in getting our group together. They showed us ways to get young people involved. [They were involved in] getting us trained and getting [us] resources. And that was where we started, with adults who saw that young people are being affected, [and] they need to get in [on] the response.
What was involved in your training?
What was involved ... First is that we went through basic HIV/AIDS information, you know, we went through transmission, how you can prevent it, and we went through care and support to persons infected and affected [by HIV]. We went through how to -- take the message out to other young people. We learned different life skills, and we learned different techniques to use [in our work]. We learned how to make presentations and how to write proposals, and we learned how to create our own things [laughter]. It was a wide range of stuff that we were trained on as young people going into [HIV work], getting into the different attributes.
What was your first project as a group?
Our first big project was our walk-n-talks. We decided OK, we're going to start. We are an NGO [non-governmental organization], we don't have money, we need to start simple. So we said, how is it that we are going to educate people? If we don't have the money to go out and do big stuff; you know, concerts or whatever, what are we going to do? We are going to get the resources that we can, and we sent to like SLAM [Condoms] for [donated] condoms and we got different condom agencies to donate [more] condoms. We got information, and we went out into the communities with our condoms, with our dildos, with our pamphlets. We went into bars, and we went into people's houses and we went into yards, and we spoke to everybody that we saw about HIV/AIDS. We said ... We did basic HIV/AIDS information [sessions] and our condom demonstrations and so ...
What kind of reception did you receive from the public?
(Laughter) I guess it was the first time people were, young people were doing something like this, and it was the first time that HIV/AIDS was being addressed in the manner that it was. Some people were like, "You're young. I'm older than you are. You cannot talk to me about sex, I know about sex". Some were a bit reluctant [to listen], because we were young people. And some people were like, "Wow, this is amazing! You guys are actually taking responsibility for your actions." So some persons were very receptive and they welcomed the information and they wanted to learn, while others were like, "You're young. Who are you to come and tell me to use a condom and to be faithful? Who are you?"
So there were -- we had challenges in terms of people thinking that, "You can't tell me anything." And there were persons who thought that, "You're doing an amazing job, and you need to continue."
As your organization has expanded and grown older, how have things changed?
Presently the young people are the face of the group, to be honest. You know, the young people, they are the PAC [People with HIV/AIDS Advocacy Committee]. They are the ones who are doing the education. The young people are the ones who are offering care and support, and the young people are the ones who are making the plans. The young people are the ones who are mostly involved. Sadly to say, right now presently, we don't really have a lot of adults who are working [with us]. We have a few [adults], who are still working behind us, but the young people have greatly taken up the task of [knowing], listen, we have to continue.
The young people, every day, they're thinking about new ways to integrate the stuff that we were doing back then [when we started], to make it appropriate for the generation that is coming. Because I am 21, the kids who are 16 now, they are facing different challenges than I was facing when I was 16. So every day, they're constantly thinking, "How can we use this to make it represent what is happening to young people now?"
What is your organization doing to reach out to that next generation of youth?
Definitely what we want to do is to create that youth-friendly space. So recently we have been talking about getting a nurse at our center. You know, [they] will not be there full time, but maybe on specific days, on days that are convenient for our young people, maybe weekends or after school. We're thinking about having our chill room, like we usually have a space where young people do their arts and crafts and their songs and stuff, but it wasn't really as a "chill room" chill room. We want it to be a space where young people can come, and they can sit and they can chat. They have resources if they want to read and a space [that] is theirs, and they can do whatever, in a positive way, that they want to.
So there are different components. There are different stuff that we're planning on implementing, like adding onto our center to make it more of a youth-friendly [place], getting youth-friendly nurses, getting more stuff that young people nowadays are asking for.
What do you see being the greatest challenges for the next generation of youth?
I think one of their greatest challenges is that they don't have the freedom to express themselves. I think young people are [being] forced to live in a world that maybe adults -- sorry to say that, but -- that adults [imagine], it is the ideal world -- but in actuality, that's not the world that young people are living in.
So they [the youth] are forced to live in the ideal world. Therefore the challenges of the actual world are overcoming them, because they are not able to say, "Listen, I'm a homosexual, and this is what I'm doing. I need to access this." The minute you say that, you are discriminated against. You are denied the services that you need.
A young person, who is sexually active, is not able to say, "Listen, I'm sexually active and I want access to condoms." The minute you say that you are told, "Listen -- OK, yes, we know that. You're young, you should not be having sex." But the reality is they are having sex.
So I think one of the greatest challenges is that [youth] are not able to express themselves, and because they are not able to express themselves, they are not able to access the stuff that they need to better prevent themselves from getting HIV/AIDS.
What do you suggest to someone who is experiencing the stigma and discrimination that is associated with HIV? How do you suggest they overcome that?
How to combat stigma and discrimination, hmm? I think it depends on where you are living. Like it depends on your country. Because I think stigma takes the form of its country.
Well, let's take Jamaica -- what would you say to a Jamaican youth who is combating the discrimination and stigma of HIV?
I think sometimes doing it alone, may not be the ideal thing to do. It would be very good to find out in your area if there is a local NGO [non-governmental organization] that is doing HIV/AIDS work, and then get yourself associated with that group. Or a youth group, and then use that platform to address the issues that are affecting you. If I was supposed to stand up in my community alone, maybe it would not be as forceful, as strong as it is, or as it has been because I had a group behind me. When I say this is affecting me, I have another number of young people who are saying, "It is affecting us also."
Getting other voices with yours makes it [and you] a bit stronger for you to deal with this stigma and discrimination. So getting involved with groups that are doing work, and then use that as a platform to address your issues.
What do you hope for in the future? In terms of your work with HIV.
Hmm. What I hope. I think in terms of my HIV/AIDS work, I want to reach a level where I'm able to advocate for children, in the most affected areas possible, and not just advocate, but at the end of the day, get results. You know? Kids who are being deprived of health care services, I want to speak on their behalf, and at the end of the day actually see something happen.
I think I do a lot of advocacy, but then sometimes I sit down and I wonder are the people who really need it, are they getting what I'm doing -- is it really making a difference in the lives of children who really need it?
I think I want to reach the place where I am getting results [on a daily basis]. I'm doing [what I can now], but at the end of the day, kids whose parents are dying of HIV/AIDS [still] have to be caring for their parents, because their parents are not on ARVs. I want to speak out on issues like that. I want to go into those communities and those villages, and I want to -- I want, at the end of the day, to get results.
What steps are you taking right now to get you to that point?
Personally, I do advocacy for UNICEF, so I represent UNICEF and children infected and affected [by HIV] at different conferences around the world. Which is a big platform. Even speaking out at a conference like this has given me a platform to do stuff [to further my HIV work]. So that is a step that I'm using -- the different conferences that I get invited to, stuff like this, doing an interview on the radio -- somebody might hear and say, "OK." I'm using [this] as a way forward to obtain that goal that I really want to reach someday.
Any highlights of the conference so far for you?
I was just realizing that young people are really being represented at this conference in its entirety. But then I think, children are still missing: the plight of the under 15 [is] still missing, the plight of the disabled youngsters is still missing, the plight of the street kids who are a vulnerable population, still missing.
Those are big concerns for me. Even though I'm happy that young people are given a stronger platform, I still think that there are some young persons, there are still some groups that are not represented, you know, their voice [is not heard]. This conference started on Sunday and ends on Friday, and their voices may never [be heard, and people may never] know what is happening with that group. So that is a big concern for me.
Any last thoughts?
HIV/AIDS affects us all, be it indirectly or directly. So we all need to play our part because, be it a word, a kind word to somebody, getting involved, whatever it is, [HIV/AIDS] affects us all and we all need to act together.
Thank you so much for sharing your story, we really appreciate it.
Click here to e-mail Kerrel McKay.
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