Well Known #HIV Activist Advise on STIGMA [FB Chat Transcript]

Healthline's HIV Awareness Page on Facebook hosted a World AIDS Day special chat with Olivia Ford, Executive Editor of TheBody.com and Alex Garner, with NMAC. (This is the transcript of that chat)

  1. To view the original, un-edited Facebook page chat, please visit: facebook.com/thenewfaceofhiv.  
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  3. HIV Awareness: Healthline: Thank you all so much for joining us for this HIV Awareness: OVERCOMING STIGMA chat. Please join us in welcoming our panel of experts. We are so excited and grateful to have you all here: Alex Garner, Program Coordinator, Treatment Education, Adherence and Mobilization National Minority AIDS Council and Olivia Ford, Executive Editor of thebody.com and thebodypro.com. Both are influencers in the #HIV community and we are so excited to have you. Are you both ready to begin?

    Olivia Ford yes, absolutely! it's a pleasure and an honor to be here and speak/type about this topic


    Question 1:  HIV Stigma is something we hear often in the dialogue relating to those living with HIV. Share with us ways that stigma can affect a person living with HIV.

    Alex Garner I believe stigma can prevent people from accessing care and staying linked to care but beyond that it isolates people and prevents them from feeling a sense of support, community and agency and that can be debilitating to one's physical and mental health

    Eric Trujillo Feelings of shame/fear/insecurity

    Olivia Ford Absolutely - it's difficult to think of a way stigma *does not* potentially affect the lives of people living with and affected by HIV

    Olivia Ford Stigma can even underpin a health care provider's reticence to offer someone an HIV test -- "They don't *look* like they're HIV positive" and the like

    HIV Awareness: Healthline Absolutely. Thank you for those responses.

    Alex Garner I think it's also important to point out the impact it can have on one's sexuality and sense of intimacy and connection

    Cory Bradley I think that HIV stigma is a significant conversation especially with regard to the ways that stigma affects communities and individuals with increased risk for infection.

    Cory Bradley What kinds of innovative practices and strategies are you aware of that are helping to address stigma as it impacts individuals who are not positive but at high risk?

    HIV Awareness: Healthline We will ask that for sure-- momentarily!


    Question 2:   What is the best way to overcome the stigma surrounding HIV, either from the perspective of someone living with the virus or someone in the support group? What are your suggestions?

    Alex Garner Arm yourself with information. Create or cultivate networks of support. And find a way to speak out about living with HIV. One of the best ways to fight stigma is to step forward and honestly share your experience

    HIV Awareness: Healthline That's interesting, Alex. And before I get ahead of myself-- just share a bit more about stepping forward. You mean, disclosure?

    Olivia Ford I wanted to point up opportunities for people who are *not* living with HIV to assist in eliminating stigma -- by learning about it, by naming it when they come across it in culture and media and interpersonal conversations and in their work, and by talking about the profound impact that it's had and still has on the epidemic worldwide.

    HIV Awareness: Healthline So, "calling out" the stigma per se-- when someone who is HIV-negative?

    Alex Garner disclosure is different than coming out about HIV. disclosure is often meant in the context of telling someone before a sexual encounter. coming out has more intent behind it. it's about saying, this is who i am and I am not ashamed. Being confident and unashamed about who you are and the life you live
    HIV Awareness: Healthline That is a very big difference and a very powerful, or should I say, empowering way to think. (and act, really)... Thank you for that insight.

    Alex Garner Let's not forget that negative people encounter stigma too, such as anticpated stigma and stigma associated with their sexual choices (sex without condoms, PrEP, etc)

    HIV Awareness: Healthline Again, very insightful. It seems to be revolving around perception, attitudes and conversation.

    Alex Garner and sex 

    Olivia Ford Yes, exactly - there are so many places that stigma lives, including the sort that's internal, less obvious, and harder to identify and call out

    Olivia Ford "felt stigma" - but external affirming responses, whether to a person's coming out as positive (and I like the way you put that Alex) or "coming out" about anything else related to sex, sexuality, other aspects of life that can be shrouded in stigma

    Renard Prather learn all you can concerning it. Do not base your self worth on others opinion and realize this condition, just like any other condition is an illness and not a moral compass or barometer.

    Dharma Center I think for me the most effective way to do this is to start within my community. Each share some similar disparities but we also have unique gaps & needs. I believe for our area we need to raise our community IQ by that I mean several aspects. One is for people in Policy making positions to be aware of the National HIV/AIDS strategy. If we align our state plan with the Federal Implementation plan that supports the NHAS we are all working with a road map with clear long term as well as short term objectives. Within that plan they speak of building on agency collaborations that help build knowledge & capacity of service providers. To increase access into all cares both Mental Health Chemical Dependency , Social as well as financial. It is these complex layers of disparities often faced that come loaded with stigma that add to it. We have to have the service providers educated , reduce the barriers & promote broader community awareness of hiv/hcv as well as sex education that is comprehensive. Until people realize it's not those people...it will remain.

    Dharma Center Also I believe we need to use language that helps us such as a chronic health condition, how about routine testing. Quit making it this "special" medical condition. How about getting rid of old laws passed out of ignorance & fear that continue to criminalize HIV? (I live in MN. enough said)

    Dharma Center a cultural change of mindset such as language or manners. sort of like we have to do with un knowing people in regards to LBGTQ hurtful language. Like when someone discloses. Don't ask How did you get it, or all that stigma filled stuff. How about the same ay you would with any illness. Are you in care? Can I help? ETC.. or there is the Heads of Medical Insurance Plans that can change some of their policies as well on coverage. I mean like Palliative care, not in the sense of end of life services but in the chronic health condition that palliative care can be such a support.

    Now moving to Question 3: What is the biggest opportunity that all of us-- as activists, even at the local level-- have in order to truly combat #HIV stigma?

    Alex Garner Coming out is fundamental. Helping people cultivate the skills to respond to stigma they may experience. So much of HIV stigma is connected to homophobia. we have to tackle them both at the same time. Policy is a big factor, such as criminalization. Or abstinence only education. Gay men still don't get adequate treatment and prevention resources even though we are and always have been the majority of infections.

    HIV Awareness: Healthline I'm really digging this "coming out" discussion as way to combat stigma. "two birds with one stone" concept...

    Olivia Ford Absolutely agreed, re: cultivating those skills - and even sharing information on responding to instances of stigma in media, like with recent campaigns around Tyler Perry's Temptation and its stigmatizing portrayal of a woman living with HIV

    HIV Awareness: Healthline Absolutely. Olivia, do you have a link to more information about that campaign (TP- Temptation) on your sites?

    Olivia Ford And another *amen* to fighting homophobia alongside HIV stigma - I'd add that most -isms contribute to HIV stigma in their way - racism, sexism, the stigma around poverty, and on

    Alex Garner Absolutely, Olivia. I also think there is a unique way gay men experience HIV stigma since it's a constant part of our lives, our sex and our culture.

    Olivia Ford Relating to this, I think another big opportunity is to normalize conversations about HIV by actively talking about our work, especially in non-HIV community circles, and to take instances in which people express stigmatizing ideas or share untrue info as "teachable moments" - when folks know better, they do better (for the most part)

    HIV Awareness: Healthline Olivia & Alex, absolutely agree with all of this information. And I want to continue this dialogue in Q4. So, lets move there, if that's alright.

    Olivia Ford Yes, just pulled that one up! That is a fierce campaign spearheaded by Positive Women's Network - United States of America and allies

    Question 4: Does talking about #HIV stigma (IE: speaking up: saying it's "HIV Stigma") help? Does it perpetuate the actual stigma? Why or why not. And how do you suggest we best speak up or speak out against stigmatizing instances we encounter?

    Alex Garner Any opportunity to expose stigma or create dialogue about it is a good thing. it doesn't perpetuate it to point it out. I think it's important to make the distinction that it's more than just hurt feelings. When one experiences stigma associated with their sexuality, for example, it can be extremely personal. It's helpful to talk about stigma in a context that demonstrates value. people with HIV have value, gay sex has value, women have value, etc. Stigma says the opposite so we have to respond to that.

    HIV Awareness: Healthline How would define HIV stigma? (This definition is always changing-- but try and put it into a paragraph.)

    Alex Garner i think a big part of it is the sense that one is devalued, illegitimate and unworthy. the idea that you are not deserving of being a part of the larger community. it's almost the revocation of citizenship (in the non nationalistic sense)

    Olivia Ford I do think it depends on the case, and there are certainly ways to call out stigma in a way that is itself stigmatizing; but if done in a way that frontloads the idea that it's all of us against the problem of stigma, then talking about it can be useful and healing and illuminating

    Alex Garner One important point we haven't touched on is that stigma is a learned behavior. many stigmatizing messages came from public health and prevention. that also means it can be unlearned

    Olivia Ford That's really well put, Alex - outside of an individual it extends to potential shunning, silencing of a person's experience, and again devaluing of that experience

    Olivia Ford there's a recent piece that breaks down stigma, both "felt" and "enacted," really beautifully: http://www.thebody.com/.../the-other-hiv-stigma-an-inside ...

    HIV Awareness: Healthline Thank you, both. I'll begin the final question 5 now.

    Question 5: Who inspires each of you in your own personal journeys with how HIV stigma affects others? Good examples that you have seen of others doing "more" or offering wisdom and encouragement. (This is the final question.)

    Olivia Ford It's really difficult to nail it down to one. I am truly inspired by the bloggers and interviewees and comrades and friends living with HIV in our communities who enact their own ways of fighting stigma in their lives every day -- and on TheBody.com folks are often speaking and writing on the topic of stigma and how they've faced it. That said (and very deeply felt) ...

    HIV Awareness: Healthline Like, our recent recipient of an "HIV influencers Honor" Mark S. King #HIVhonors

    Alex Garner i can find inspiration in veteran ACT UPers who had an incredible impact at a time of intense crisis while also finding inspiration in the young people living with HIV who speak up and speak out about it. Then we also see people and organizations who are doing innovative work to get people talking about stigma and fighting it. like at The Stigma Project. But at the end of the day I think it can be incredibly moving to witness someone speaking out about living with HIV even when they know that speaking out comes with incredible risks. They accepted those risks because they strived to live a life free of shame. A life of their own making, on their own terms. That is what empowerment is all about

    Olivia Ford Yes, absolutely! What is really compelling about Mark S. King 's writing around stigma in particular is that it shows how stigma, specifically in gay men's communities, is really a "community effort" and comes from all corners - and can be a community effort to respond to and combat -- liek in this classic linked from here:  http://www.thebody.com/.../hiv-stigma-gay-men-and-the ...

    Alex Garner a community effort also means accountability and calling out public health or prevention when they put out stigmatizing or sex-negative messages

    Olivia Ford Also, i have mentioned them previously in this chat - Positive Women's Network - United States of America applies a human rights and gender justice lens to looking at the epidemic and responding to stigma in ways that, again, show how systems contribute to stigma, and how other stigmas and struggles such as reproductive rights overlap with the HIV response - their approach is ultra-inspiring.

    HIV Awareness: Healthline Amazing! Thank you both

    Dharma Center I just love Olivia's energy, dedication & willingness to put in 100%. It's cheerleaders & mentors like her that give me the support to be a 16 year PLWHA that can find my voice to share our story. Thanks Olivia.

  4. HIV Awareness: Healthline: Thank you Alex Garner andOlivia Ford for both joining us today! Alex with withNational Minority AIDS Council and Olivia is the Executive Editor of TheBody.com. Both of you are so kind for joining us today and we sincerely thank you on behalf of our large Facebook HIV Awareness community! You are both heroes!

    Alex Garner: thank you for hosting this important conversation 

    Olivia Ford: Thank *you* once again! Pleasure to engage with everybody 

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