An Interview with "Stigma Warrior," Josh, from imstilljosh.com

Josh Robbins learned on Jan. 24, 2012 that he was HIV positive. He “decided to make a blog because [his] new circumstance of being newly poz [wasn’t his] death sentence… or even close to what defines [HIM] as Josh.” His blog has gone on to inspire many allies and people living with HIV, and he continues to a strong figure in stopping the spread of stigma.

Visit imstilljosh.com to learn more about this incredible individual!

Listen to the podcast of this interview! 

SAN:  You have been running your blog for about a year and a half now—what has been one of the most memorable moments or learning experiences?

Josh: When I started the blog, I didn’t know what it was or would be—and I still feel that way sometimes. Through this medium, I am just sharing my experiences and journey and what it has been like for me to live with something day-to-day, month-to-month, and now over a year that I was completely scared of as a gay man.

With that said, it has been a process of seeing this platform grow and handling the unexpected responsibility that comes with it. I have been surprised with the amount of people who engage with me through I'm Still Josh (ISJ). Almost every day someone contacts me and shares their very personal stories which I am honored and humbled to hear. That has really been the biggest thing from imstilljosh.com and so I feel partly a responsibility to respond to those people for sharing that. I want to thank them for investing their time and for hearing about my continuous journey.

SAN: What do you think your impact has been in terms of stigma reduction?

Josh: What I found is that we have these digital stigma warriors (and I like to include myself in that) who are changing the way people think about HIV. There are different ways of understanding HIV, for example: as an HIV negative person who thinks HIV is the worst thing that could happen to you and living in fear of it; and then as an individual who is diagnosed and realizes it is not a death sentence and you can still be you. Closing those mental barriers and taking down those walls --it requires talk from people and organizations like ours to do this. That is what I feel like I am a part of and what I have committed to thus far.

I believe that if we catch people who are recently diagnosed and we catch them early enough and encourage the hell out of them then we have the ability to change them from being victims to heroic stigma warriors who educate the community about what HIV is, how to prevent it, and how to live alongside people like us. That encouragement period of time is so important to me and that is what I have concentrated the most on. That part of my life has the most success. It is something I am very passionate about.

SAN: Well I saw you started an encouragement wall on Facebook, so that is a very concrete way that you are digitally supporting people.

Josh: Yes! And I haven’t officially launched it yet—but my goal is for it to be the largest digital encouragement wall for those recently living with HIV. What I am doing is getting quotes from different significant people to influence how those who are recently living with HIV feel about themselves.

The idea actually came from the AIDS Quilt. It is so big and people are constantly adding to it, and that’s what I hope to see from the Encouragement Wall on ISJ. Eventually users will be able to come to the site and make their own and have their work immediately added to the wall. I am excited to see how it develops with people’s different words, pictures, and forms of expression.

“If you don’t talk about HIV, and you don’t 

talk about those elements that turn 

into stigma—how can you ever 

combat it and end it?”

SAN: That sounds great! Us too! What do you think the most effective way for people to reduce stigma is (aka be a #StigmaWarrior)?

Josh: I think that HIV needs to become real to individuals and their networks by talking about it in a very personal way. It requires a bit of trust and vulnerability from people--like myself--who are living with HIV. Furthermore, it is equally as important for people to stand up as allies to and speak out for the community of people living with HIV.

The whole reason I got involved with this was because I went to a group therapy session for people living with HIV in Nashville. Everyone seemed to have an attitude of defeat.

They told me: “Josh, you just don’t understand what it is like to hear these words, for people to not want to date you because of this virus.”

My response was: “If you don’t talk about HIV, and you don’t talk about those elements that turn into stigma—how can you ever combat it and end it?”

For me that was an epiphany --when I left and I refused to shut up. From that, I have really learned to and convinced myself that I am going to be ok, all of which has really reduced my internal stress as well as helped my health and impacted my view on HIV.

SAN: Very true. Well, those are all my questions. Thank you again so much for taking the time to do this interview. It has been a real pleasure.

Josh: Same here, but before we go I want to tell you something… 

Check out the exclusive story Josh gave the SAN!  

A Conversation with Laurel Sprague on the PLHIV Stigma Index Roll-out in the US-- Part 2

View Part 1 of this Interview...

SAN: What are the biggest lessons learned from the Index thus far?

Laurel: Something I didn’t realize until I started working with this data is the existing level of internalized stigma and discrimination and how that impacts people’s behaviors in ways that can really limit our health and well-being. In some countries the percentages of people who have considered suicide in just in the past year because of their HIV status is heartbreakingly high.

The percentages of people across most, if not all, of the sites I have seen who have avoided getting health care when they needed it because they were afraid of being discriminated against are, again, really high. I think this really speaks to the challenges for people living with HIV just to have a healthy life with dignity. Even when health care was formally available, people still avoid it because of the risk of mistreatment. That has hit me hard.

SAN: What are the biggest barriers and issues the Index has identified that serve to perpetuate stigma against people living with HIV?

Laurel: We asked people in the survey questions about their perceptions regarding why HIV stigma and discrimination occurs. The responses are interesting to me because a lot of people say it is just basic ignorance about the facts of transmission. This is a sad statement given that there has been so much education over the past 1-2 decades globally. It may be the situation that people know the facts but don’t really believe them and so they are still afraid of people living with HIV and see us as a real threat to their health when we are actually not.

In terms of the common locations where people report that they face discrimination, I would say that healthcare settings are the center of HIV discrimination for a lot of people. It is not that health care workers are necessarily more discriminatory than anyone else, instead,  they are the people who are most likely to know someone’s HIV status -- which puts them in a position where they can discriminate. However, when we ask respondents to tell us what groups have been supportive or discriminatory towards them, a significant portion of respondents identify healthcare workers as the most supportive people with whom they  come in contact. I think part of the challenge for people living with HIV is that you don’t know when you go to see a new healthcare worker whether you are going to be treated badly or not. There are providers who refuse to see you, to touch you, to provide the services you need, or who question you inappropriately. On the other hand, within the healthcare field, there are these really committed people who provide healthcare for people living with HIV, who I know in many cases are a lifeline for their patients.

SAN: What do you think the greatest benefit of the Stigma Index will be?
Laurel: What I would add to the things that we have already touched on, would be the opportunity for increased solidarity among people living with HIV and our allies and advocates in the HIV field. We don’t always get to hear each other’s stories and understand how stigma affects people within our own community. It gives us the real opportunity to collaborate across communities.

In addition to that, at the end of this we will have people living with HIV across the country who received additional job training through employment and involvement in the Stigma Index project. They will have gained project management, advocacy, organizational, research and data skills. Hopefully, these skills will be combined  with a sense of self-empowerment and of commitment to the full community of positive people so that we can come together  as people with HIV, and we can make a difference that improves the lives and well-being of all of us – particularly those living with HIV who are the most vulnerable to the multiple challenges from poverty, racism, homophobia, transphobia, misogyny, etc. that limit people’s ability to access the services they need to live healthy and full lives.

SAN: How can members of the SAN get involved?

Laurel: I would like anyone in the SAN who is interested to be involved. We are putting together an academic advisory council of people who can provide any amount of time they have, according to their own schedule, to weigh in on different questions, results, and the implementation.

If people contact me and let me know what they are interested in, then I can bring them in. This is a collaborative process so the more brains, hearts, and hands we have involved there better. 

A big thank you to Laurel for a very interesting and informative interview! If you would like to contact her about the Stigma Index please email coordination@gnpna.org.

Furthermore check out another interview she did along with Eric Sawyer for AIDS.gov after their PACHA presentation on the Stigma Index to learn more about this awesome project!

View Part 1 of this Interview

A Conversation with Laurel Sprague on the PLHIV Stigma Index Roll-out in the US-- Part 1

Laurel Sprague is the regional coordinator of the North American affiliate of the Global Network of People Living with HIV (GNP+NA) and is herself living with HIV. She has provided technical assistance globally on the development and implementation of the PLHIV Stigma Index since 2009 and is leading the U.S. implementation. Furthermore, she teaches in the Department of Political Science at Eastern Michigan University. She’s a great advocate and has extensive expertise in survey research.

SAN: For readers who aren't familiar with it, what is the PLHIV Stigma Index?   

Laurel: PLHIV Stigma Index, or The Stigma Index, is a research action tool for communities living with HIV to be able to document our lived experiences of HIV-related stigma and discrimination, and to then use the results as evidence for advocacy work on our own behalf.

SAN: How did the People Living With HIV Stigma Index get started?

Laurel: The Stigma Index was created by four founding international partners: UNAIDS, Global Network of People Living with AIDS (GNP+), the International Planned Parenthood Foundation (IPPF), and the International Community of Women Living with HIV (ICW). Those organizations worked with existing surveys and with networks of people living with HIV to put together the questionnaire and the process. The idea was to be able to gather data and empower people living with HIV to manage the process and to use the data for evidence based advocacy.

SAN: How does the Index work? How are you using it to measure stigma?

Laurel: We measure the experience of stigma and discrimination from the perspectives of people living with HIV. The Stigma Index accomplishes this by training people living with HIV as interviewers who then interview other people living with HIV. This allows people living with HIV to talk openly, honestly, and safely – because they are talking only with other people living with HIV - about how stigma and discrimination has affected their lives. Additionally it looks at a comprehensive life picture of a person living with HIV by taking into account how their membership in other identity groups that face discrimination may intersect to create different forms of stigma and discrimination as well as at what people living with HIV can teach others about sources of support, resilience, coping, and self-efficacy.

SAN: Where has the Stigma Index been rolled out so far?

Laurel: It’s been implemented in more than 45 countries. It’s been implemented in every region of the world but never within the U.S. or Canada until now.* We are currently engaged in early discussions with PLHIV, AIDS service organizations,  and collaborative research institutions in Canada about the prospect of an implementation there.

SAN: How successful has the S.I. been so far? 

Laurel: That is an interesting question because what immediately comes to mind are two different kinds of success. There is success in gathering solid information across communities of people living with HIV—and some countries have been more successful than others in being truly inclusive of the diversity of all our communities. Ukraine is an example of a country that did an excellent job involving people from all key populations across the country. They have something that many of us look at as a model stratified sampling process that they used to identify which populations needed to be involved and then how to recruit them.

The other way I would categorize success would be by looking at what the advocacy outcomes have been and the self-empowerment for the people living with HIV. For example, when the Estonia Network for people living with HIV looked at their research results, one of the areas that they saw was a huge issue was the effects of HIV on employment discrimination. They initiated a project to educate employers in Estonia and to encourage them, first, to not discriminate based on HIV status and, second, to openly recruit people living with HIV for positions. They were successful in creating a network of employers who have committed to non-discrimination and who post publicly within their buildings that they do not discriminate against people living with HIV.

Check out Part 2 of this Interview!

*Please note that the North American Region in this context is considered to only include the USA and Canada