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!

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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?