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.”
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.
Around the globe, there are approximately 40 million people currently living with HIV, and an estimated 25 million have died from the disease. In the United States, approximately 1 million people are currently living with HIV. HIV stands for human immunodeficiency virus, which is a retrovirus that kills
and damages cells of the body’s immune system. AIDS stands for acquired immunodeficiency syndrome and is caused by HIV when the virus has destroyed so much of the body’s defenses that the immune-system cell-count drops to a critical level or life-threatening cancers or infections develop (Nettleman). HIV is spread primarily through unprotected sex and intravenous drug use (sharing needles), but can also be passed from mother to child through pregnancy, childbirth and breastfeeding (The Body, 2011). Some important things to keep in mind when thinking about HIV are the stigma in the community, treatment/side effects, and working with clients who are HIV+. There are challenges to all three of these aspects, as well as rewards. The following focuses on these characteristics as pertaining to the HIV/AIDS community.
The Stigmatized Population, Why?
There is still a stigma surrounding HIV, for whatever reason. Maybe it’s because the virus first came to light in the 1980s when gay men were dying from a mysterious illness. Maybe it’s because people think they can get “infected” by simply just being in the presence of someone who is HIV+ (The Body, 2011). Maybe it’s because the general population is uneducated, which leads them to be scared of the virus. For whatever reason, the stigma is un-warranted. People who are HIV+ or have progressed to the stage of AIDS have a severe stigma thrown onto them from society, and this is a challenge. On top of feeling alone and maybe confused, the negative societal stigma adds a sense of rejection from the world.
In talking with my supervisor, she informed me that much of the stigma towards the HIV+ population comes from urban legends about it. A friend of mine even told me of a story he heard, which was completely over the top and there was absolutely no way that it could have happened; it was just used to make people who are HIV+ or have AIDS look like terrible people. Folktales about the spread of HIV include things such as “AIDS Mary” and AIDS by “stealth injection.” AIDS Mary is sort of like a cautionary tale on the dangers of unprotected, careless sex. The story goes as follows: “After a night of casual sex with a woman he doesn’t know… a man wakes up the next morning to find the words ‘Welcome to the world of AIDS’ scrawled in lipstick across his bathroom mirror” (Emery). Supposedly this woman was purposefully sleeping around to spread the disease to anyone she could seduce after she had contracted it from a former lover. Clearly, this story is a reflection “of the fear and ignorance that surrounded the epidemic in the mid-1980s” (Emery). AIDS by “stealth injection,” much like the story told to me by a friend, is just like it sounds. Claims in these legends have stated that women have gone out clubbing, or sat down at the movie theater, and been pricked by a needle. Attached to the needle is a note that states, “Welcome to the world of AIDS.” These legends are not only untrue, but they are hurtful to the population. There are facts to go against these urban legends, yet people are hanging onto them, creating a stigma that people who are HIV+ will infect everyone in their path (Emery). This is simply ridiculous and ignorant. Because of the stigma placed on this population, it is hard for them to live a normal life. This stigma gives a sense of rejection from the rest of the world, and it has also been considered an obstacle in organizing programs in response to the epidemic.
A Sociologist named Erving Goffman defined stigma as “an attribute that is deeply discrediting,” and that it brings down a normal person to a “tainted, discounted one,” and that society will stigmatize others based on deviance from what is normal. This leads for the stigmatized individuals to view themselves as unwanted and shunned (as cited by Coates et al). The formation of stigma is not only based in one’s mind, but also in society. Stigmatized groups are disadvantaged in many ways, including income, education, housing status, medical treatment and health. Stigma is most easily described in stages put together by Bruce Link and Jo Phelan, stating:
1) Individuals distinguish and label human differences, 2) dominant cultural beliefs link labeled persons to undesirable characteristics (or negative stereotypes), 3) labeled persons are placed in distinct categories to accomplish some degree of separation of “us” from “them,” and 4) labeled persons experience status loss and discrimination that lead to unequal outcomes (as cited by Coates et al).
Here, the reasons for stigma are explained, yet is anyone doing anything about it? There are a number of programs in the country which support people who are HIV+, allowing them safe havens and small communities. The Boston Living Center is one of them. Interestingly enough, stigma is what is holding back the organization of programs just like the BLC, but we need programs like the BLC to reduce the stigma.
Medication and Treatment
Continuing medication through terrible side-effects is hard all alone, but the support of a group in the same position makes it easier. Group counseling is so important both psychologically and medically, because it helps with mental and physical health. Along with upkeep of medication to take, it is important to also be a part of a group therapy or one-on-one therapy. Becoming a Helper by Corey and Corey touches briefly upon the benefits of group therapy. “Groups provide a sense of community, which can be the antidote to the impersonal culture in which many individuals live” (Corey and Corey 334). This is true especially for HIV+ groups, as discussed before in regards to stigma. It’s much easier for people who have HIV to relate to others who are also going through the same things, hence the importance of groups. There is also a sense of safety and understanding due to the fact that everyone is going through the same thing. “Groups offer a forum in which members reveal their confusion, anger, helplessness, guilt, resentment, depression and anxiety… members are able to see the similarity of human struggles” (Corey & Corey 334). Working in a group setting of clients who are all HIV+ can bring up many of the similar issues that these people feel, especially that they are looked at differently by the general population. It’s important for them to talk about these feelings and have others who can relate to them, as well as to help them cope in their everyday life.
Studies have been done involving HIV+ adolescents and peer-group therapy. “Adolescents who have experienced a long history of HIV infection accumulate a number of potential difficulties with peers, with self-image, sexuality, future academic and occupational plans, and planning for life as an adult…” (Blanche et al). Because of these potential issues with adolescents who are HIV+, a study was done about the effects of peer-group therapy. The conclusion came down to say that “peer support group had a beneficial effect on the adolescents’ acceptance and perceptions of their HIV infection… improvement in well-being could have a positive influence on biological variables” (Blanche et al). The interesting part about this is that peer-group therapy may have an effect on the biological factors of HIV, like how medical treatment affects the body. While the clients are going through therapy, their overall well-being is being brought up to a higher level, which in turn affects their biology. Holistically, this makes a lot of sense and is very important to chronic illnesses. It is clear that peer-support groups are helpful for people living with HIV, because it offers them an outlet and some understanding into their lives that usually don’t have those things.
In working with clients who are HIV+, it is important as a therapist to consider things such as confidentiality, ethics and cultural competency. All of these aspects of a helper can relate to working with clients who are HIV+, and they are important to counseling this population. It is hard to find a therapist who is educated in the culture of HIV/AIDS, and who understands what the client is going through. All of these aspects of therapy should be kept in mind with any population, but it is especially important in working with clients who are HIV+. There are some regular themes that have come up in HIV/AIDS counseling which include secrecy, complexity and relationships/interaction. Secrecy relates to the question of who the client should disclose his or her status to, and how the therapist can guide the client on that. Complexity means that both socially and biomedically, many people are involved with the client, which can lead to more problems or conflicts. Relationships/interaction refers to the fact that HIV/AIDS can create a relationship problem due to the social stigma of the illness and fear of contracting the illness. (Bor & Miller). As a therapist, there are many basics to consider in counseling a client with HIV/AIDS. These basics are generally the basics of counseling which can be applied to working with any population, but some of these concepts are especially important in counseling people who are HIV+. Confidentiality and ethics are closely related. Clients are expected to trust their therapists, but ethically, there are things that therapists need to expose to authorities. In Becoming a Helper, Corey & Corey use an example of working with a client who is HIV+. “As a helper, you may need to balance your client’s right to confidentiality against warning a third party ho may be at risk…” (Corey & Corey 239). There is a balance between confidentiality and ethics in regards to working with clients who are HIV+. “… Practitioners who work with HIV-positive clients will continue to wrestle with the ethical issues in deciding on a course of action with their clients” (Corey & Corey 239). It’s a hard balance, but apparently confidentiality with the client holds more than ethics do. The client must trust the therapist, so in this type of case, the therapist must keep confidentiality. Other therapists that Corey & Corey work with claim that “there are many alternative to breaking confidentiality and warning a third party” (Corey & Corey 240). Imaginably, this would mean the client telling the third party themselves.
Cultural competency is another concept that is important for those in the helping profession to understand. In regards to HIV, this is extremely important because it involves knowing different cultural beliefs. In HIV prevention and education, it’s difficult to get through to people who culturally do not talk about sex and the body in the same way that Americans do. “These beliefs and attitudes make our job very hard… you can’t talk about HIV without talking about sex, certain body parts, certain activities and certain truths that many people would prefer [not to hear]” (Lechky). In this Canadian article, it states that people “reason [that] they’re not white, not gay, and don’t use drugs, and therefore are not at risk. There’s still a lot of stigmatization and stereotyping around who gets infected” (Lechky). Therefore, it’s important to look at all cultures and the different ways in which they can be educated, regardless of their beliefs. There is a huge emphasis on clients seeing the therapist as a real human being, and building a trusting relationship between the two. It is important for the therapist to be “very open-minded, nonjudgmental, and willing to educate themselves on the issues” (Lechky). There is clearly a huge importance in knowing and really understanding what the client is going through, and if the therapist is not actually going through the same, education about the issues is of great importance in understanding and empathizing.
Self-Reflection & My Future as a Helper
I absolutely love being at the Boston Living Center. It has been an integral part in my experience at Lesley, and I wouldn’t change it for anything. I was so skeptical about going in there and working with clients; I simply didn’t have any idea what to expect from the HIV/AIDS population. I am now fully open-minded and loving towards everyone, no matter their situation. Working with this population has opened my heart to so many different opportunities in the helping profession. Honestly, I can’t see myself leaving the BLC. This is such a spectacular community center for people living with this illness, and I know that it has helped so many. One of the members, told me that he was in a really terrible place (mentally, physically, and environmentally) before he came to the BLC. Now, he’s doing so much better and he wants it to stay that way. He revealed to me that being at the Boston Living Center really made him want to live with AIDS, not die from it. The Center has been a turnaround place for so many people, and I am so happy to be a part of it. The members have been recognizing me, and it just warms my heart to know that I can make a difference to them. Simply smiling at them brightens their days, and some will open up to me and tell me stories. I love that I have already made such an impact just by being my positive, smiley self. I know that I am supposed to terminate at the BLC, and I will as an intern, but there is no way I can stay away from this place as a volunteer. I have been sucked in and there is no way for me to get out. I am making time next semester to make a point to go to the Center at least once a week, that’s how much of an impact it has had on me. I am so incredibly grateful for being given this opportunity to make a difference.
As for future internships, I am sticking with the helping professions. A recent interest of mine has become veterans, specifically those with PTSD. I would like to find an internship at an organization for veterans, and I would like the organization to have a population of women. Maybe there is a place for women veterans that I can do something at. This new interested was discovered when I was in my Women, Culture and Society class with Amy Rutsein-Riley, and we had a guest speaker who spewed off all of these statistics about the lack of help that veterans receive when they come back from serving. I was especially interested by the fact that approximately 70% of women report sexual assault during their service. These numbers were appalling to me, and I can imagine that these women aren’t necessarily getting the help that they do need to recover from these traumatizing experiences. The same goes for veterans in general, because I don’t necessarily think that they are getting the correct counseling necessary for their PTSD. I would especially like to work with wounded soldiers in getting back on their feet and back into the social world of the United States. Many end up homeless and hungry because there are no programs that show them how to live again. This is research that I will be conducting over winter break.
As a whole, the Boston Living Center has been a place of sanity for me over the past semester. I couldn’t imagine not loving waking up and going to my internship two days a week as some people do. I absolutely love the people and the environment, and I especially love that everyone who works there is there to help. If I would have to say one thing I want to do in the future, just one, it would have to be helping people. It’s my self-care, it’s my happiness and soon, it will be my career.
I’ve been working in the kitchen one or two days a week, helping to prepare and serve food to the members. I’ve also been working with the wonderful Lisa, our volunteer coordinator, doing tasks for her that she needs help with.
You are an intern from LesleyUniversity, why do you think Lesley supports Service Learning?
Lesley starts their internships earlier than most schools, so I am only in my sophomore year. It’s important to get students out into the field as soon as possible to gain experience that will help them to obtain jobs in the future. Service Learning is important because students are able to serve a community or population and learn so much about it at the same time. I am personally very involved in the community service program at Lesley, so I am very grateful that I was able to do an internship that also serves a population in need.
What are you studying at Lesley and how has your time here prepared you for post graduation?
I am studying Holistic Psychology with a Sociology minor. In the Sociology aspect, my time at the BLC has exposed me to a population that I never would have imagined working with! It has broadened my interests and shown me that there are so many opportunities for after I graduate. In respect to Holistic Psychology, I have realized that the holistic therapies can work virtually anywhere and I will have so many opportunities in the future. Being here at the BLC has taught me to be open to everyone, as well as reiterated the fact that there is so much to learn about everyone you meet.
You have an interest in holistic therapies, based on your experience here how do you think they help the chronically ill?
Holistic therapy is so important to healthy living, especially here at the BLC. Holistic therapies look at everything as a whole, which includes mind, body, spirit and environment. All of these aspects are so important, because the chronically-ill not only need to take care of their body, but their environment plays a huge role as well. Specifically here, the BLC provides a community and a healthy, positive environment and is important for the support of all the members.
Our membership seems to really enjoy your company here- how do you feel as a volunteer about your interactions with our members?
I love being at the BLC so much! I leave here every day feeling so happy and great, and that’s a feeling that I can’t get anywhere else. I am so glad that I get to brighten days just by smiling and having little conversations with the members. The members are starting to recognize me now, and that is another awesome feeling. I’m glad that I can be here to help J
Has your perception of who we help changed over the few months you’ve been here?
I was very skeptical at first, coming here and not really knowing what I was getting myself into. I didn’t really have any assumptions about the population; I really just had no clue what to expect. I have learned to be open and accepting of everyone, because every member has a story to be told.
Is there anything else you’d want people to know about the BLC?
The BLC is really a beautiful organization that helps the HIV+ community in more ways than I can ever explain. It is a wonderful place for people to come together and just be people and hang out with others who are just like them. I know that the BLC has changed so many lives, and I know that it can only excel from here on out. I am so grateful that I have been a part of the BLC for the past few months and that I have been welcomed with open arms. I will definitely be back to volunteer in the future, there’s absolutely no way that I can ever leave!
The BLC would like to offer our most grateful appreciation to Theresa who has volunteered her time with us all semester long and contributed in so many ways to our community.
The Boston Living Center takes living very seriously. It could be a member lunch, painting class, yoga, or a massage, theBostonLivingCenterworks to make sure that you know how to live your life. Every day this center enables its’ members and allows them to reach their full potential: giving them skills, a sense of community, resources and most importantly hope. A hope that reminds the members of this center that living with HIV/AIDS is not the death sentence that it used to be; that people can live their lives to the fullest regardless of their status and their socioeconomic level. That is what the Boston Living Center does. It gives people a chance to live.
From the moment I walked into the doors of theBoston Living Center I was greeted with respect and kindness. It didn’t matter to anyone if I was a member or a volunteer but only that I was there to make a difference. I was to only stay five weeks, as part of a service learning project at Emerson College, but I quickly found that a place like this you could volunteer for a lifetime.
I was set up in the computer lab, where I was to help members in need of basic Microsoft Office skills or just any problems on the computer. I was nervous, quiet, and wondered if I was going to be receptive in my mission to help the members of this community. Would they merely view me as another volunteer just doing this because I was assigned? Would they not take me seriously because I didn’t have HIV? These questions pounded through my brain as I wandered down the hall on my way to towards Cyberspace. In about three seconds of being in that room, those thoughts were out of my head. Everyone wanted to talk, everyone wanted some help and everybody was nicer than I could ever believe. It didn’t even matter to people that I didn’t have HIV. In fact I forgot I was even in a place that helped people with HIV!
As I write this on my final day of the project I am filled with a sense of connection that I had never anticipated. Since day one I have been accepted into the Cyberspace community and it is a community that I will dearly miss. The laughter of people watching YouTube, the constant writing and re-writing from people working on letters and papers and the warm handshake and great conversation of Stuart, the overseer of the whole operation.
The Boston Living Center has enthralled me, challenged me, taught me and most of all inspired me. It reminded me how important it was to take full advantage of the simple fact that we are here breathing on this Earth together. That regardless of HIV status or socioeconomic class we all are connected and reliant on one another and it is our mission to help each other. That is the most important lesson of all and it is something I will remember for the rest of my life.
When I was first assigned a service-learning project for my Interpersonal Communications class, I was skeptical. When was this going to fit in to my schedule? Wouldn’t it require energy that I should have been spending on organizations or my other classes? Truth is, I was being incredibly narrow minded. I failed to see the ways in which this could open my mind, expand my horizons and push me into the very thing I thought I feared: something new. This all changed, however, during my first visit to the Boston Living Center.
The instant you enter the BLC, you can’t help but feel wanted. You can’t help but notice how friendly everyone (and I mean everyone) truly is, and how infectious their hospitality is. I was greeted with nothing but openness and positivity, everyone was happy to see me.
Walking into Juan’s Free Expression class, held on Fridays, was like leaving my world for a little while. I wasn’t being consumed by my own thoughts any longer. I didn’t think about how busy or stressed or tired I was. Point is, I forgot about me in general. Abby, the busy college student (admittedly blessed with financial and physical comfort) was pushed to the very back of my mind. My “problems” weren’t as important. My attention was focused on these fascinating new people, who were enduring pain I couldn’t relate to. These individuals, coming from all walks of life, came together here; working side by side to better themselves and their well beings.
Admittedly, I was nervous when beginning the project. I was rather unfamiliar with the psychological and physical afflictions associated with HIV/AIDS, and this topic was one I rarely discussed or encountered in daily life. My greatest fear was to appear ignorant or ill informed, and so I did my research. However, the amount of friendly and positive disclosure the member’s shared- about their personal lives, their health and their happiness made me realize just how open everyone was. They were quick to offer advice, ideas and support when a fellow member needed it most.
I entered my service-learning project completely blind to the effect it would have on me as a person. I didn’t realize that I would walk home after each class, thinking about the lives of the new people I’d met, thinking about their friendly dispositions and mostly; thinking about their strength.
This opportunity gave me something I will never forget or take for granted again: a new perspective. The Boston Living Center, essentially, gave me a great deal of hope. I gained a few new heroes in my cohorts, and saw, for the first time in my life, a group of diverse people joining forces and truly connecting. They shared triumphs and encouraged one another through setbacks. I won’t ever forget the Boston Living Center for exposing me to wonderful, real people, with solid determination to reach their full potentials and live lives they truly loved.
Clare Ryan, a first year student at Oberlin College in Ohio, chose to spend her winter break with the Boston Living Center. We at the BLC would like to thank Clare for choosing us and for the many hours she spent in service. Here are her thoughts on her “volunteer vacation” at the BLC.
It’s hard to believe that three weeks have gone by so quickly! Going to the Boston Living Center has become such a fun and fulfilling part of every day, it will be hard to go back to school in Ohio and leave the center behind. I have been volunteering at the BLC this January while my college is in it’s winter term. During winter term, students participate in a project of their choosing in order to enrich their understanding of a topic they are studying or to learn about an area of study that they think might interest them. I chose to do my winter term project at the BLC.
This past semester I took a class on HIV/AIDS in Africa. The course opened my eyes to the multi-faceted intricacies of the epidemic. Having gained a relatively proficient understanding of the epidemiology of HIV/AIDS in Africa, I became interested in what the epidemic looks like– how it differs, who it effects, and why– in a more developed country. So, before I returned home to Boston for the Christmas holidays, I contacted Lisa Brown of the BLC to inquire if there was room for me to do some volunteering in January. I did not know specifically what it was I wanted to do at the center– mostly to be helpful in any way I could, and I expected to be working behind a desk doing important work, but ultimately not interacting much with members. It was fine with me; I was curious about the workings of an organization that addressed the HIV/AIDS epidemic in a developed country such as the United States.
What I found when I arrived at the BLC on my first day was a vibrant and colorful community, characterized by mutual feelings of respect between members, volunteers, and staff. The number and array of services offered by the BLC astounded me. For a small building tucked away on a side street with undoubtedly limited resources (as all small service organizations tend to have), the BLC has impressively provides resources to its members that not only tend to their physical well-being, such as the nutrition services program, but also to their emotional and spiritual well-being, including programs like massage therapy, various support groups, and even art and jewelry classes. My weeks were comprised of days spent doing a number of different tasks. On Mondays and Thursdays I spent time doing various “odd-jobs” such as making signs and posters for AIDS Lobby Day (which was later rescheduled because of excessive snow), decorating bulletin boards, organizing yarn for the knitting class, and doing a little bit of filing and data entry here and there. Tuesdays I helped out at the beaded jewelry class.
This was one of my favorite activities at the BLC because it gave me a chance to chat with members and hear their stories. I met so many smart, funny, and caring individuals, and it became clear to me through conversing with them, that the BLC holds great importance in their lives.
Wednesdays and Fridays were spent in the kitchen helping with prep work, cleaning, and serving food to the members as they came through the line. In many ways I came to think of the kitchen and dining room as the heart of the BLC. It is where members come together to talk and share experiences. Because the only requirement for being a member is to be HIV positive, there is a sense of camaraderie amongst the members. In a society where, unfortunately, there is still stigma surrounding HIV infection, the BLC is a place where individuals can come to escape. At the BLC, members do not have to hide their HIV status or be worried about prejudice as a result of it; instead, they can come to the BLC free of worries and enjoy the company of others who are going through many of the same issues they are.
I went into my winter term project eager to volunteer at an organization that deals with issues I am interested in, but I now realize that in the beginning, my interest was more academic than anything else. While statistics and studies behind HIV epidemiology still interest me, I was exposed to a new side of the epidemic I was not expecting: the humanitarian side. When studying a topic in an academic setting, it is easy to become removed from the humanity behind it, to focus on information and fact more than personal stories and experiences. These personal experiences are what define the BLC. Any number of studies, research projects, or even scientific research could never result in assembling an organization like the BLC. It could only be created by the coming together of a community filled with passionate individuals, committed to creating an open, caring, and respectful environment. That is what the BLC is– not merely an assemblage of people with HIV/AIDS, the people behind statistics; but rather, a community of vibrant individuals brought together by a desire to truly live with their disease.