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

Post from Red Aware: International Women’s Day with WIRE

In honour of International Women’s Day we [Red Aware] reached out to our friends at WIRE (Women’s Information and Referral Exchange) for a chat about how sexual health education and support can, and should, be incorporated into women’s services.
Melbourne-based WIRE provides free information, support and referrals to more than 13,000 women a year through their phone, drop-in and email services.

Service Delivery Co-Ordinator, Sheridon Byrne, discusses the importance of young women being empowered to take control of their sexual health.

How do issues around sexual health fit into WIRE’s work?
A lot of women talk to WIRE about issues that they feel they can’t talk to anyone else about. Many women feel silenced and therefore, and have been made to feel that sex, sexuality and sexual health are things that are shamed or shameful.

What do you think is the best way to tackle that shame?
Create awareness. Listen unconditionally. Name and label things. If something is a common experience for women then we let the women we work with know. We let them know it’s common and it’s not something they should feel alone in or ashamed of. We treat the women we work with as experts –she’ll make the best decisions about her own body. We just exist to give her as much information, and information about other support services, as she might need.

What role does sexual health education play in this?
Getting to a younger group of women to normalise sex, sexuality and sexual health is really important, mainly because it empowers women so they know that their body belongs to them, how to understand it and how to access the services they need.

What do you think are some of the barriers to young women accessing sexual health information and services?
It’s really exciting to see that young women are becoming more empowered to get the information they want. Young women are using the internet a lot more, getting online, having a dialogue and doing their research. Which means when they seek help from a doctor or community service, they’re not feeling as vulnerable as they once might’ve. Having said that, it’s still quite a taboo subject for a lot of women feel too embarrassed to seek the help and information they’re entitled to.

YEAH is currently developing the ‘healthy relationships, respect and consent’ area of our program. How do these issues connect to sexual health?
Sexual health issues often come along in relationships issues including issues of power and control. Issues of consent are still very prevalent, even amongst young women who are, as a whole, more empowered. Even for them, sexual health is still considered to just be things like contraception and pregnancy and we try to unpack ideas of sexual wellbeing, desire, consent and health.

What is the ideal relationship between sexual health and healthy relationships?
In an ideal world, relationships would be between two equals, regardless of whether they were two people in a long-term, committed relationship, or people who have a one off sexual relationship. In a relationship where two people are equals, you get a number of things; you get mutual respect, ongoing renegotiation of consent, intimacy is prioritised and you have a respect and concern for each other’s wellbeing, which of course extends to health and sexual health. Good, free-flowing communication helps to get rid of power dynamics and shame is minimised. If the shame is minimised around sexual health, more and more people will step forward for help and information.

For more of our Youth and Sexual Health Sector blog, check out these posts:

• RMIT’s Health Promotion Officer, David Towl, tells us why it’s important to have sex ed at uni. Read more.
• Family Planning Victoria’s Medical Director, Kathleen McNamee, shares her tips for a safe sex Christmas. Read more.

__________________________

Original link to post: http://www.redaware.org.au/talk/international-womens-day-with-wire-3301/

Employment: An Emerging Strategy in HIV/AIDS Treatment and Prevention?

By Mark Misrok, MS Ed, CRC, President, Board of Directors, National Working Positive Coalition

Since the epidemic’s emergence in 1981, the employment-related issues, needs and opportunities of people living with HIV/AIDS (PLWHA) have greatly evolved. Public policy, understanding and service system response have struggled to keep pace, but a recent quickening of employment initiative development is unleashing new optimism.

For many, the overwhelming phenomenon of the first 15 years was people disconnecting from work, going on disability benefits, and dying shockingly soon.

As news emerged in 1996 about new, effective combination drug therapy, the landscape was beginning to change, even for the very sick.

People who had left work, leaving vocational identity and career goals fading in the rear view mirror, unexpectedly faced wanting or needing to go back to work. Some PLWHA were seeking to establish work lives and careers for the first time.

Many had experienced great change in physical capacity and in what they wanted and needed from a job. Many lacked or had outdated skills and qualifications. PLWHA and service providers struggled to understand what happens to people’s disability benefits when they went to work. Many people had personal debt, tax, or legal issues.

Fear of HIV stigma, disclosure and discrimination also influenced many to avoid change. While confronting all of these challenges, PLWHA still had to find ways to build a new life.

With help from pioneers from the HIV/AIDS, vocational rehabilitation and workforce development communities, pathways to employment for PLWHA slowly began—and can continue—to develop. The definition of success in this era of HIV/AIDS would go beyond successful treatment of HIV.

Awareness began to develop of the poverty, social isolation, and blocked vocational development of thousands of Americans living with HIV/AIDS. Excitement built for a more hopeful era of a large-scale transition to work movement among PLWHA. At the same time, others were terrified of the risks for disabled PLWHA attempting a transition to work without:

• evidence of sustained benefits from medications
• manageable side effects
• continued access to medical care and treatments
• support services that brought them the stability to consider employment
• a system of vocational services prepared to assist them effectively

Many service providers initially hesitated to adopt a recovery model for HIV/AIDS services, which would include encouragement to consider goals, including employment and vocational rehabilitation.

The movement emphasizing employment began with MTS and Housing Works in New York, Positive Resource Center in San Francisco, Whitman-Walker Health in DC, and AIDS Project Los Angeles, and continued with the National Working Positive Coalition and several community-based initiatives around the country. Building on the release in 2010 of the first-ever National HIV/AIDS Strategy, the Department of Labor’s Office of Disability Employment Policy has led at the federal level, with the key role of employment recognized among social determinants of health. Pioneering initiatives also emerged from the Department of Housing and Urban Development’s Office of HIV/AIDS Housing. The Department of Justice and Equal Employment Opportunity Commission emphasize and enforce workplace protections under the Americans with Disabilities Amendments Act.

In a 2008 national survey of more than 2500 PLWHA by Dr. Liza Conyers of Pennsylvania State University, a significant percentage of employed respondents reported positive health outcomes and reduced risk behaviors after transitions to work.

New initiatives and coordination of existing resources are increasingly cause for optimism. If information, resources and supports were available, many PLWHA could better equip themselves to make well-informed decisions about employment. Potentially many could succeed in transitions to work.

____________________________________

“The first fifteen years of the epidemic were about dying—first quickly, then a little more slowly, but it was all about dying.

The next five years were about not dying.

It’s my hope and belief that this next era of the HIV/AIDS epidemic is about living, really learning to live fully, with HIV.” 

2004

Eric Ciasullo, founding board member, National Working Positive Coalition

Banning the Marginalized, Perpetuating the Stigma: 

The U.S. Travel Ban Against Sex Workers and Drug Users and its Consequences on the AIDS 2012 Conference 

By: Lily Alexander, HIV Stigma Intern for ICRW

 

How effective can a conference truly be that doesn’t include the opinions of those most affected? How much productive dialogue can be created when the voices so key to this issue are missing? These are some of the key questions that surround the upcoming International AIDS Conference (IAC) in light of the U.S. travel ban against sex workers and drug users, two populations most heavily affected by the epidemic.  

25,000 delegates from over 200 countries are projected to be attending the 2012 IAC that will take place in Washington, D.C. from July 22 through 27. Yet due to the U.S. travel ban against sex workers and drug users, those present at the conference will not be representative of the populations most heavily affected by the epidemic.

                                                        
The U.S. was chosen as the location for the 2012 IAC due to the recent repeal of the U.S. ban against people living with HIV entering this country, which had prevented an international AIDS conference from being held in the U.S. since 1992. Although Obama’s 2010 repeal of the U.S. ban was an important milestone in reducing HIV stigma, U.S. travel restrictions continue to perpetuate the stigma.

Current U.S. law prohibits the entry of those people that have participated in sex work in the past 10 years, or those considered drug “addicts” or “abusers.” The two related questions on the visa application include:

1. Are you or have you ever been a drug abuser or drug addict?
2. Are you coming to the United States to engage in prostitution or unlawful commercialized vice or have you been engaged in prostitution or procuring prostitutes within the past 10 years?

These extremely vague and ambiguous definitions of drug users and sex workers mean that an enormous spectrum of people are considered ineligible for entering this country and participating in what could be one of the most important conferences of the decade. No criminal charge is necessary to be implicated as “engaging in prostitution,” but rather, prostitution is defined as “moral turpitude.” This restriction applies even to sex workers in countries where prostitution is legal.

Although sex workers and drug users can apply for a waiver if their visa application is denied, this process is extremely time-intensive and costly -- $140 for the initial visa application plus $545 for the waiver. In addition, even if this waiver is accepted, this waiver guarantees only a one-time entry for the individual and means that one’s record is permanently marked as being a drug user or sex worker, which not only exacerbates stigma but may prevent entry into the U.S. on other occasions in the future. This waiver code stamped in passports will essentially be a scarlet letter that screams criminal for the rest of these peoples’ lives.

In response to the exclusivity of the AIDS 2012 conference, two off-site conference hubs have been declared in Calcutta and the Ukraine so that sex workers and drug users can participate in the debate. The Sex Worker Freedom Festival -- the alternative conference being held in Calcutta -- was organized to “protest our exclusion and ensure the voices of those excluded are heard in Washington.” This conference is free for sex workers.

  
Yet for some, such as Allan Clear, executive director of the Harm Reduction Coalition, these conferences are an unacceptable alternative. “What you’re asking for is that drug users [and sex workers] press their noses against the window of a country and conference that they can’t get into and where their lives and issues are not represented. A hub is not a viable alternative. It is just not an acceptable alternative. We just cannot sign off on something that is supposed to smooth the issue over and make people feel better.”

The AIDS 2010 Conference in Vienna sparked great hope of ending the stigma of those key populations living with HIV. The Vienna Declaration -- the policy statement issued at the conference -- pledged to end the criminalization of drug users and include a large presence of both drug users and sex workers at the 2012 conference. The International AIDS Society was one of four organizations who authored the Vienna Declaration. It is contradictory that two years later they have chosen a location for the 2012 AIDS conference that further criminalizes and ostracizes the very same populations they had so boldly defended in the declaration.

Let’s renew this hope that was present after the 2010 conference and lift the travel ban against sex workers and drug users, two populations that have been disproportionately affected by the epidemic. With the conference a little over a month away, we must act swiftly to pressure the U.S. government to do so. The U.S. funds and directs many HIV programs throughout the world, and it is imperative that our policies align with the goal of reducing stigma of these marginalized populations.

Obama’s lifting of the ban against people living with HIV coming into this country was pivotal in the fight to end the epidemic. But it’s not enough. In Housing Works’ Executive Director Larry Bryant’s speech at the end of the 2010 Vienna conference, he said, “Ending the travel ban was supposed to be a major step in destroying the stigma engulfing individuals around the world infected and affected by HIV and AIDS. All we have done is shifted it to other marginalized and criminalized communities: sex workers, drug users and ex-offenders.”

Let’s follow on the coattails of this momentum and repeal the travel ban against sex workers and drug users. They deserve the same rights and respect as anyone else.

ImStillJosh guest-blogs!

Josh sends us this blog from his blog.  Bottom line: DO NOT PANIC!  Read on...  :)

I’m HIV-postive and I just got a NOsebleed. OH SH*T!Posted in: Me+=sameME. Tagged: aids, aids strategy, bleeding, hiv, HIV Positive, hiv stigma, imstilljosh,living with hiv, nose bleeds. 7 comment

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Since Jan. 24, 2012, I have had the opportunity to learn some amazing things about my body, how HIV infection grows and is treated and how others that are more “positive experienced” than myself have lived with this immune disorder for many, many years. It’s been very humbling, to say the least.

A nosebleed for an HIV-positive person really can freak us out. So you don't need to. #stigma

But what happened recently was not something I had thought about much– or how I would react or feel. But it’s actually something that every HIV-positive person has to think about, and often.

I woke up the other morning to blood on my pillow. Blood on my hands. Blood that was dried up — on my face! Talk about something worse than that morning breath I had when I was still a smoker. (Oh, yea, I quit recently.)

Talk about an “OH SH*T! MOTHER OF A GAY QUEEN SLAPPING HER DOG BECAUSE SHE CAN’T FIND THE RIGHT EYE LINER PENCIL” freak out.

I had, had a nosebleed.  Questions were flying through my mind: “What if this happened when I was out in the public? Would others freak out? Would I? Would I be the lonely guy in the middle of the street screaming for a tissue and everyone just kept walking by?” “Can I give someone MY HIV from my nosebleed? Well, duh. But what about my dried up blood?” “Should I throw away my pillow now? But what if someone is going through the trash and touches it?”

See the fact is, I hadn’t yet realized or experienced the freaking out that HIV-positive people (at least once) have gone through or will go through when they might get a paper cut, nosebleed, or even a cut in the roof of our mouths from that sharp tortilla chip.

Will I continue to freak out a little when I see blood? HELL YEA! 

But you (neg’s & poz’s) don’t need to, if you see my blood. Trust me, I’ll take care of it. So don’t freak out a lot … or even a little. I’m already doing it, even if I laugh.  <—– the reality of an HIV-positive guy from Tennessee.

End the stigma. I’m still Josh! YOU still be You!!!

-Josh