ALL THAT “JAZZZ”

This post was written by our BSW Intern, Anita Peete

“Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.”

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While here at the Boston Living Center, one of my main goals is to get to know members on a collective level; but even more on a personal basis. In order to fulfill this goal I sat down with a member of the Living Center named Jazzz. It was a pleasure to have the opportunity to get to know Mr. Jazzz, with an extra “Z”!

Jazzz is originally from Lewiston, Maine. He lived there until the age of 19. Jazzz has been a member of the Boston Living Center for the past 4 years. Although at first he wasn’t interested in coming to the Center, even after knowing so much about it; he came to the realization that it was “difficult to maintain the day to day routine.” He needed the support of those who fully understood what it means to live with this virus. No one understood what he was going through, so he came to the Center in order “to be in touch with the community. Those who were living with HIV.” Other ways that Jazzz works to maintain his life on a daily basis is through various hobbies. His hobbies include writing poetry and short stories, painting, being a member of the acting group. He also loves traveling, especially international travel. He has been to 5 different continents in his lifetime. He even had the opportunity to study in Mexico.

Just like the music, there are many levels to the person that is Jazzz. I discovered that he recently retired from teaching in the Boston Public Schools after teaching for 27 years. He taught everything from general education to Bilingual education. Yes! Bilingual education! Jazzz is fluent in Spanish! His best advice when learning Spanish is that you go to a Spanish speaking country and immerse yourself in the culture to learn the language.

Jazzz is a very vibrant and well-rounded individual. It was a pure joy to be able to sit down and get to know the wonderful soul that is Jazzz, with an extra “Z”! In closing, I asked Jazzz what he wants the world to know about HIV and those who live with it. His response was “Not to fear it. Try to understand it. Accept that it is among us. The best way to fight it is to come together.” Americans as a society has been known to come together in order to fight injustices, so it is important that we continue our fight against HIV, so that we can get to zero! It is because of the brave men and women, Like Jazzz, who share their stories that others are able to start to tear down the walls of stigma.

 

 

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Being Positive is About More Than Just a Diagnosis

By Caitlin O’Gallagher, Prevention and Education Specialist at the Boston Living Center

The doors of the Boston Living Center swing open every day to welcome the individuals who make up the core of this organization. Artists, teachers, activists, cooks, mothers, poets, fathers, students, professionals – they all walk through our doors. Each of these people comes in with a different conversation to be had – let me tell you about the bike ride I just took, or did you see that article in the Metro this morning? At the end of the day, what they each have in common is that they are HIV positive. But it’s what’s beyond that diagnosis and label that makes each of these people uniquely different and imperative to the colorful tapestry that is the BLC community.

In many causal conversations out in the world about the HIV positive community, we hear language that insinuates that once a person becomes HIV positive, that diagnosis becomes their identity. They not only have HIV, but they are now defined by their HIV. But in many conversations within the HIV positive community, we hear that whereas the diagnosis may become a part of the person’s identity, it by no means becomes all that that person is. One of our members here often says that he has HIV, but HIV does not have him. That saying sums it up perfectly; yes, HIV is a part of him, but it’s not all of him.

Members here sometimes tell me that they are sick of talking about HIV. We hear it all the time, they say, we’re bombarded with conversations about it every day between all of the different services we receive. Why does this constant conversation about HIV get on their nerves? Because they are still people – people with hobbies and interests, people with senses of humor, and people who often have more pressing, immediate issues to tackle than an HIV diagnosis. Sometimes they just want to be able to talk about other issues and parts of them that aren’t their HIV. And shouldn’t that be okay?

So let’s look beyond the diagnosis. Yes, it’s still absolutely necessary to be talking about HIV, to be educating people about HIV, and to be having honest conversations with people about HIV. This is how we confront and combat stigma. But it’s also important to talk to these same people about the other parts of their lives. This is also how we combat stigma. And how’s the new apartment coming along? How did that interview go the other day? How’s your new pottery project coming along? When we address people as people, and not a diagnosis, we combat the notion that people are their HIV.

Here at the BLC, we strive to do just that. We infuse education, support, and learning opportunities into our interactions on a daily basis, but we also remember to check in with people about the million other important or seemingly mundane things going on in their lives. This is where true support lies. I will talk to you about your viral load, your medication side effects, and your CD4 count, but I’ll also talk to you about your family, your cat, or what you cooked for dinner last night. To form a community that is sustainable and has real impact on its members, conversations and support must be all-encompassing.

Let’s move beyond pigeon holing people and move into a space where we can instead be comfortable allowing people to decide for themselves what their most important parts are. I invite you to think about how to see individuals beyond their diagnoses and how to engage and interact with the whole person, not just one part.

Meet Rob Quinn: BLC Member and New Guest Blogger! (Part 2)

Welcome back, Rob!

Tell us a little bit about OpenlyPoz.com – when did you create it?

OpenlyPoz.com was launched November 16, 2012, on the 19th anniversary of my HIV-positive diagnosis.

The mission of OpenlyPoz.com is to empower and support my peers living positive, as well as others affected by HIV/AIDS, through sharing my personal stories and experiences of clearing HIV/AIDS and life’s hurdles R⁴ style—sometimes struggling, sometimes succeeding.

I believe that by putting a face to HIV, we can lessen stigma and make sure silent voices are heard. Whether or not you are directly impacted, we are all affected by HIV/AIDS.

What inspired you to start it?

Our voice matters! Being openly gay and HIV-positive, I feel a responsibility to pay it forward to the HIV community, both infected and affected. I live openly with HIV/AIDS in order to reduce stigma –  sharing my story to inspire, encourage and provide a voice to those who have been silenced.

I am a strong believer in and advocate of the use of social media as a platform for empowerment and advocacy. For HIV-positive individuals living in social isolation or areas with limited HIV/AIDS community, treatment information and support services, social media can provide a lifeline to reach their optimal health and full potential. I also believe in the benefits of personal storytelling in raising awareness, combating HIV stigma and connecting individuals. Though we travel very different journeys, we are survivors in uncharted territory, united through sharing our personal stories and experiences of living with HIV/AIDS – sometimes struggling, sometimes succeeding. The merger of personal storytelling and use of social media naturally led to the path and launch of http://www.OpenlyPoz.com.

“Our job is to share knowledge with those who have a little less of it, and to learn what we can from those who have a little more.” – Karen Berg

You talk about your “R⁴” mantra in your blog. What do those 4 R’s mean to you and where did they come from?

My story is much more than the daily challenges of living with HIV/AIDS. It is a story of fostering hope and resilience in me and others. It was the positive outcome of that first experience of hitting rock bottom that my 4 R’s have since become my mantra, my guiding force in clearing even the highest hurdle I encounter as I move forward on my journey, and celebrating life each and every day.

R4R⁴ is based on multiplying the four instances of R together. So: R⁴ = rock bottom x recovery x resilience x reinvention. In order for me to move forward in the process, I have to clear the previous hurdle, or R, which in turn strengthens my confidence and determination to ultimately clear the highest hurdles. (Read my full guest blog post “Clearing HIV/AIDS & Life’s Hurdles R⁴ Style” on Josh Robbins’ I’m Still Josh)

On your blog, you make sure to point out that HIV lives with you, not that you live with HIV. Can you speak a little bit as to why this differentiation matters to you?

Simply stated, I practice people-first language. Rather than using labels to define me and my HIV status, I feel it is more appropriate to use language that describes me as a whole person. Therefore, I don’t live with HIV, HIV lives with me. Yes I am HIV-positive, but first I am Rob. My HIV status, much like my gender, age or sexual orientation, does not define me, but is part of my life and part of what made me the person I am today–optimistic, confident and determined.

What kind of impact do you hope to have through your blog both within and outside of the HIV-positive community?

While we have made great huge strides in HIV prevention, care and treatment, stigma continues and accessing treatment, including support, remains difficult for people living with HIV. According to the Centers for Disease Control and Prevention (March 2015), approximately 50,000 people become newly infected each year. 9 in 10 new U.S. HIV infections come from people not receiving HIV care, which highlights the importance of getting tested. Stigma and fear keep many from getting tested for HIV.

On my forward journey aging with HIV/AIDS – sometimes struggling, sometimes succeeding – it is my hope that through OpenlyPoz.com I can make a positive community impact by furthering my work advocating for increased awareness, decreased stigma, and the chance eventually to an AIDS-free generation. First and foremost, I will use this platform to connect, support and empower individuals both within and outside of the HIV community through on-going conversations about awareness, the importance of testing and taking full responsibility for one’s own sexual health, open and honest communication about HIV status, reducing stigma, education, the challenges of an aging HIV population, responding to the changing needs of the HIV community, and more.

Whether or not you are directly impacted, we are all affected by HIV/AIDS.

Meet Rob Quinn: BLC Member and New Guest Blogger! (Part 1)

Hi Rob! Great to meet you. Can you tell us a little bit about what you do?

I am a passionate openly gay, HIV-positive activist, blogger and educator. I have been a certified child life specialist for the past twenty nine years. My twenty-one year journey as a person living with HIV/AIDS has evolved from being an unheard voice to a voice for the unheard. Through local and statewide activism, education, outreach, and social media, I am increasing HIV/AIDS awareness and reducing stigma. I am continually seeking additional opportunities to further my work advocating for increased awareness, decreased stigma, and the chance eventually to an AIDS-free generation.

2015 marks my 29th year in the child life profession as a Certified Child Life Specialist (CCLS). Child life professionals empower children and families to master challenging events related to health care. In 1993, after being diagnosed HIV-positive (after having tested negative six months earlier), I crossed over into a parallel universe, living as the children, youth, and adolescents with whom I worked did. I was suddenly faced with coping, surviving, and then thriving with my own health care challenges while continuing to provide child life care.

As of September 1, 2013 I was appointed to a three-year term on the Statewide Consumer Advisory Board (SWCAB) of the Massachusetts Department of Public Health, Office of HIV/AIDS. Prior to that, I served on the Board of Trustees at the AIDS Foundation of Western Massachusetts (AFWM). I first became involved with AFWM in 2008 as a recipient of their emergency financial assistance program (EmFAR). I have since received AFWM’s Community Activist Recognition Award, and in 2011 founded Living Positive, Western Massachusetts’ only peer-led support for men living with HIV/AIDS.

Where are you from?

I am a Springfield native. During 1983-86, I lived and worked in Boston while pursing my Masters of Science in Child Life at Wheelock College. During 1986-2001, I lived and worked in NYC/Manhattan for 15 years, relocating back to Springfield in 2001 weeks after 9/11 due to failing health and unhappiness.

When were you diagnosed with HIV? What has your journey been like living with HIV?

Although the journey has not been easy, often grueling at times, today I celebrate all that I am so appreciative of – peace, health, happiness and simple living, as I gratefully age with HIV/AIDS – sometimes struggling, sometimes succeeding. After hitting my rock bottom in 2007, resulting from an HIV diagnosis in 1993, an AIDS diagnosis in 1999, and the need to take an extended medical leave of absence from my child life career in NYC, I have since reinvented myself and in 2012 launched the blog www.OpenlyPoz.com to empower and support my peers who are living positive.

My story is much more than the daily challenges of living with HIV/AIDS. It is a story of fostering hope and resilience in me and others. Some of the hurdles I’ve encountered and cleared include coming out twice (first as gay, and years later as HIV-positive), the loss of my father, encountering HIV/AIDS, depression, addiction, a suicide attempt, my 4 R’s (rock bottom, recovery, resilience, and reinventing myself), aging with HIV/AIDS, and much more.

My continued success and personal growth is a direct result of my readiness, trusted support network (led by my mother Patricia Quinn), stellar health care team, and OCD attitude. No, that’s not Obsessive Compulsive Disorder, but rather my Optimistic, Confident, and Determined attitude. My journey back continues to be truly a gift. In my speaking engagements, I frequently share with others that as difficult as it may be to stay on track during life’s hurdles, it’s a lot harder to fall off and try to get back on. I truly believe that we can all overcome and grow from obstacles when we learn to see them differently.

When did you become a member at the BLC?

May 21, 2014

How did you find your way to the BLC?

A peer on the Statewide Consumer Advisory Board (SWCAB) of the Massachusetts Department of Public Health, Office of HIV/AIDS told me about the BLC.

What has being a part of the BLC meant to you?

Being new to Boston, I need to begin the process of transitioning my healthcare here and building a community and social network. The Boston Living Center (BLC) offers me a welcoming and safe environment (physically and emotionally), social interaction with the area’s HIV/AIDS community and peer support, resources, education through The L.I.F.E. Program, and now giving back though guest blogging.

In closing, I would like extend my sincere gratitude to the BLC with inspirational words from Anthropologist Margaret Mead. She said, “Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has.” You have become part of my world and have changed my world for the better!

Employment, Stigma, and HIV

Have you recently been looking for work and discouraged with your findings (I’d personally invite you to join the club; America’s job market sucks these days!)? In Massachusetts, unemployment has been hovering around 6.0%, with some fluctuation due to seasonal work (http://www.bls.gov/). In many eyes, unemployment at 6.0% is a job well done, something to be proud of. While this may be true for the country as a whole, you might be asking yourself, but why can’t I find a job? Or perhaps, why does my job suck so much? Should I be grateful or can I find something better? With all these quandaries, throwing in things like navigating the disclosure of your HIV status and dealing with HIV related stigma can make job hunting all the more difficult. As if relying on a whim and a prayer was not hokey enough, new employee recruiting techniques will really throw a wrench in your day.

A recent article in TheBody.com by Brooke Davidoff outlined the struggles of a newly diagnosed person looking for employment. Her article articulates the struggle of disclosing your HIV status to an employer versus lying to get a job. It also highlights the stigmatic notion that being HIV positive is a disability. In her article, Davidoff suggests that many employers are now promoting what is called a “Voluntary Self-Identification of Disability,” (which you can find here) a questionnaire that employers ask candidates to fill out with the promise that it will not be used “against them.” And, as you may have guessed, HIV/AIDS is listed as a category of disability. Despite the fact that this lumps HIV positive individuals into categories of “disabled,” this type of form lends itself to the age-old question: do I to lie to a potential employer about my status and have them find out, do I give full disclosure upfront and risk not getting a job, or do I end up getting a job with labels attached to my identity? These are the kinds of questions that employers are supposedly trying to reduce, but failing epically at doing so.

Before I leave you without hope for humanity, society at large, and your future career goals, I’d like to advocate that there are places that fight against HIV stigma within the workplace. Wonderful places, such as Heineken International, promote anti-discrimination and disclosure policies. They state that: “In response to this social stigma, Heineken developed a comprehensive HIV/AIDS non-discrimination policy in 1996. The policy bans discrimination against people living with HIV/AIDS in the workplace and the use of HIV testing in pre-employment checks.” Heineken also notes that if employees are laid off, they can still receive free treatment from the company’s clinics.  Such companies are constantly looking to eliminate stigma in the workplace, rid the taboo of being HIV positive, and promote services for those who need it.

In a society where workplaces are so often ruled by policies and bureaucracy, how can we combat stigma in these settings so all people feel safe and included, and promote disclosure of any form as their own personal choice? Promoting chronic illnesses such as HIV as “disabilities” seems very limiting and for many down-right insulting. Instead, leaving behind practices of seemingly-forced disclosure in the workplace may lead to more confidentiality and trust. Disclosure within the workplace should be decided on individual terms, and certainly not something that gets in the way of employment opportunities.

What do you think? Would you claim to be “disabled” for a job, would that be a job worth pursuing? Is there a “right way” to disclosing your status to your employer, if at all?

The Mobile Manhunt 

With so many digital options available for dating, mobile apps and online dating websites have sought to streamline the process of hooking up, dating, or finding the person of your dreams. In an attempt to quantify attractive qualities, physical characteristics, personality types, and pretty much anything you factor into finding “the one” has been added to profiles. With the convenience of such apps, many men, negative and positive, have signed on. When becoming romantically involved, even in the digital world, HIV status seems to come to the forefront of discussion. So in the virtual ‘meat market,’ how you discuss your situation in a safe and comfortable way?

In their attempt to initiate discussion about HIV status, many new campaigns for these apps have brought about ways to combat HIV stigma within the gay community. Among these different methods a couple of opinions have emerged. Apps such as “Hornet” advocate for “Knowing Your Status” (KYS). This dating app asks users to disclose their status or give the date of their last HIV test. The app also provides reminders to get tested every six months as well as the location of the nearest testing center in your zip code. Hornet creates a variety of options under the status bar, such as “Positive, Undetectable,” “Negative, on PrEP,” and much more. Alternatively, an app called SCRUFF, hosting “one of the world’s largest online gay communities,” has sought to go beyond HIV status by creating categories like POZ, NEG, and Ask Me. By doing so, SCRUFF hopes to foster conversations and promote healthy and safe relationships. Additionally, both websites offer “positive community” filters, which filters to applicants that are only HIV positive or who are interested in dating in the HIV positive community.

Scruff

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While both of these techniques are trying to accomplish the same thing – dispelling stigma surrounding HIV- do they work? As many people can attest, our online selves don’t always represent who we are offline. Disclosing one’s status online may be beneficial, even liberating, but not everyone is comfortable disclosing to friends and family, and then becomes the challenge of keeping the online/app life private. Can this approach liberate some from stigma or will it somehow reinforce it?

Does forcing disclosure on dating sites promote openness and truth or do they hinder one’s sexual experiences? Should we just accept that we are living in a world where sexual histories and health information are public domain? Can there be more room for discussion and ambiguity with one’s health status? Certainly fostering discussion and openness are helpful and necessary, but does someone need to give up their privacy to do so?

These answers, however, depends on the person and the environment they choose to exist in. For some of people, HIV status is something to be kept private and revealed discretely, while others bare their status openly, with gumption. Each approach has benefits and pitfalls. Navigation of one’s own status is complicated and cannot be solved through an app, no matter how many options they provide. When dating online, people need to be aware of how much they want to share and where they draw their limits.

Do these apps work to help diminish stigma? Do they reinforce it? What do you think?

“Ebola has nothing on HIV”

By Nick Emard

On Thursday, October 16th (our Third Thursday Forum- ask us about them!) we continued with the BLC’s “End The Stigma. End HIV.” campaign by having a discussion panel addressing stigma in the lives of people living with HIV/AIDS. Our panel included a diverse group of individuals, each with their own experience and perspective on HIV-related stigma. Of our distinguished guests we had: Dr. Stephen Brady, Catrina Cooley, and our very own Ed Jacobson. Dr. Stephen Brady is a professor and psychiatrist at Boston University’s School of Medicine; he works specifically with the Mental Health Counseling & Behavioral Medicine Program. His area of research interest is HIV/AIDS risk and mental disorders. Catrina Cooley works for the Multicultural Aids Coalition (MAC) but has been involved with HIV/AIDS work and advocacy for over 16 years. Ed Jacobson, a member here at the BLC, was recently diagnosed with HIV and gave his perspectives on being HIV positive at the age of 76. As you can see, we collected a dynamic group who, through their own experiences and perspectives, spoke about stigma in today’s epidemic.

You may be wondering, wait, who are you? Why are you writing about this stigma panel? Well I’d be happy to tell you… (If you don’t care, please skip to the next paragraph). I’m a Medical Anthropology student at Boston University’s School of Medicine. I’m interning at the BLC because I will be doing my Master’s thesis on the HIV/AIDS stigma. Specifically, I plan to address the intersecting layers of stigma and how they construct identities with the HIV/AIDS communities. I’m working under the lovely and talented Morrigan Phillips and Caitlin O’Gallagher. Together we plan to address stigma through the BLC’s “End The Stigma. End HIV” campaign. Enough about me; lets move on to more important things.

Caitlin and I facilitated the panel, which mostly consisted of Caitlin doing all the work while I provided my beautiful looks and somewhat decent handwriting. I was the Vanna White to her Pat Sajak; together we spun the wheel of stigma and discrimination. We began the panel by addressing how the audience members define stigma and how it affects their daily lives. From there we had discussions with the panelists and fielded a question and answer session where members addressed the panelists with inquiries. To end, we looked at ways in which stigma can be alleviated from future generations. From our discussion the following topics emerged:

The New Face of the Epidemic
Over the years, the face of the HIV/AIDS epidemic has changed. People, nowadays, don’t see being HIV positive as a death sentence. However, HIV isn’t immediately detectable when you look at someone; you cannot see it, which causes people a lot of anxiety. Instead of overt discrimination, many people face the pervasive, insidious stigma that is often “behind closed doors”. This often manifests as stigma in dating and relationships, access to care and treatment, and interpersonal interactions. In addition to these areas, many HIV positive individuals face intersecting stigmas from other areas of their lives, whether from being gay, using drugs, or being an ethnic minority. These identities also intersect and combine (ie. gay male who uses drugs) which creates multiple layers of stigma and discrimination. Navigating these layers can be stressful and emotionally draining.

Disclosure and Relationships
Online Dating– What do you gotta do to get some action? Who do you gotta do to get some action? How can you get some action? As we all know, just because you have HIV doesn’t mean sex is off the table. Many people still want to have active sex lives and many times online dating is a way to facilitate that. What happens when you actually meet someone? Do you disclose and see what they say? Do you provide your status up front? Do you wait to meet the person and see how things go? All are valid questions and each depends on the situation and the person. However, in todays Grindr, Tinder, Craigslist, or whatever you employ to find a date, there is a need to be “DDF” (Disease and Drug Free) “UB 2” (you be too). For someone who has HIV that just isn’t an option. This stigma of “UB 2” often forces people to either 1. not disclose or 2. be further stigmatized. In combating stigma, addressing these situations and finding out ways to work around them may be beneficial.

Relationships– Who cares about dating? You’re done, you want to live your life, forget the dating world (for the time being). You want to spend time with your family and friends. However, many times people are often unaware of what having HIV means, what causes transmission, and how to act around someone with HIV. Discussion around what it means to be undetectable and the stigma that family members and friends often emit can really affect someone with HIV. It’s important to address these areas, to have discussions with your family, and educate people on what living with HIV actually means for your relationships.

Identities
Yes, HIV changes someone’s life. However, it does not need to define them. Many people expressed the need to go on living their lives, that they were not just someone with HIV. They are fathers, brothers, friends, sisters, wives, husbands, partners, PEOPLE. In order to understand stigma, these identities need to be recognized and emphasised. Agencies like the BLC allow an outlet for people. As Catrina Cooley says, “Stigma is torn apart because you can go to a place where everyone knows your name.” (Cheers!) However, taking this and adapting it into ‘real world’ setting can be challenging and frustrating.

The panel ended in looking at ways to prevent stigma for future generations. In doing so, there was an emphasis to “meet people where they are”. This can be taken in two ways. One, meet people where they are physically, go to their locations: bars, grocery stores, college campuses. This way those working in the HIV community can help get people tested, distribute condoms, and advocate. Second, meet people where they are mentally and emotionally. Facilitate models for people to help disclose, navigate relationships, help people create discussion with partners and families about what it is like to live with HIV and how they can move from there.

As you can see, the conversation was robust. Stigma is something that has been apart of the HIV/AIDs epidemic since its origins, but it doesn’t have to remain that way. As addressed at the national AIDS conference, ending stigma may be one of the quickest ways to end the epidemic.

This stigma panel is just one of many discussions that will be ongoing at the BLC regarding HIV-related stigma. Please join us on the Third Thursday of every month to talk more about stigma and many other public health, advocacy, and policy issues. Upcoming topics include HPV and HIV, HIV and Nutrition, and Understanding Your CORI Rights. We look forward to seeing you at the BLC!