Wearing Two Hats

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Wearing Two HatsCynthia Cannon Poindexter a

a at Fordham University Graduate School of Social Service, Tarrytown, NY, USA

Online Publication Date: 19 December 2006

To cite this Article Poindexter, Cynthia Cannon(2006)'Wearing Two Hats',Journal of HIV/AIDS & Social Services,5:3,45 — 61

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“Wearing Two Hats”:Work-Related Needs of HIV-Seropositive

Women Working in the HIV Field

Cynthia Cannon Poindexter, PhD, MSW

ABSTRACT. Persons living with HIV disease are reported to be morefrequently returning to volunteer or paid work because antiretroviral med-ications have improved their health, functioning, and productive years.With more HIV-seropositive people available to the workforce, espe-cially as service providers, social service organizations should betterunderstand their experiences, assets, and needs. This article reportson support group sessions with four HIV-seropositive women who wereexperiencing extraordinary stress levels due to their memberships inseveral domains: they were living with HIV; mothers of HIV-sero-positive and HIV-seropositive-affected children; partnered with HIV-seropositive men; and working in the HIV field. This discussion isintended to illuminate what social service organizations, managers, and

Cynthia Cannon Poindexter, PhD, MSW, is Associate Professor at Fordham Uni-versity Graduate School of Social Service, Tarrytown, NY.

Address correspondence to: Cynthia Cannon Poindexter, PhD, MSW, FordhamUniversity Graduate School of Social Service, North Hall, Neperan Road, Tarrytown,NY 10591 (E-mail: [email protected]).

The author wholeheartedly thanks Maria, Carmen, Aixa, and Carla for the time andwisdom they shared, especially “Maria,” who provided valuable feedback on the manu-script and helped to shape the conclusions. Drs. Roslyn Chernesky, Portia Adams, andShirley Gatenio of Fordham University Graduate School of Social Service providedclarifying feedback and encouragement on manuscript drafts.

A draft of this report was presented in May 2005 at the 17th Annual National Con-ference on Social Work and HIV in Chicago, Illinois.

Journal of HIV/AIDS & Social Services, Vol. 5(3/4) 2006Available online at http:/jhaso.haworthpress.com

© 2006 by The Haworth Press, Inc. All rights reserved.doi:10.1300/J187v05n03_04 45

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supervisors can do to facilitate job performance and satisfaction forHIV-seropositive workers. doi:10.1300/J187v05n03_04 [Article copies avail-able for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH.E-mail address: <[email protected]> Website: <http://www.HaworthPress.com> © 2006 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Americans with Disabilities Act, employment, HIV-seropositive women, outreach workers, peer counselors, social serviceproviders

There is growing attention to helping persons with HIV disease return towork, especially after antiretroviral medications have improved theirhealth, functioning, and hope for living longer (Brooks & Klosinski, 1999;McReynolds, 2001). People with HIV may seek volunteer or paid employ-ment not only for financial security, but in order to be seen as productivemembers of the community, to feel that one is fighting for survival ratherthangivingup, tomaintaindignityandhope, tomakesocialconnections, toincrease self-respect and independence, and to mediate worry and depres-sion (Mason, Carey, Jaskulski, & Stukey, 1995; McReynolds, 2001;Timmons & Fesko, 2004). With the greater expectation that more HIV-se-ropositivepeoplehavebeenandare returning towork, there is an increasedneed to understand their experiences. This discussion is intended to illumi-natewhatsocialserviceorganizations,managers,andsupervisorscandotofacilitate job performance and satisfaction for HIV-seropositive womenwhoareworkingascasemanagers,outreachworkers,andpeercounselors.

This article is based on support group sessions I facilitated over thecourse of two years with four HIV-seropositive women who were work-ingin theHIVfield inMassachusetts.Althoughtheyhadallbeenworkingfor several years and were not naive about organizationalnorms, many oftheworkplacechallenges theyexperiencedwereHIV-specific. In lightofthe recent changing employment landscape for persons with HIV, predi-cated on anti-HIV medicines making it possible for more persons withHIV to enter the workforce, I examined the transcripts of these supportgroups as a researcher to reconsider the struggles of these women whowere maintaining themselves in the workplace while at the same timemanaging a complicated illness and personal life.

BACKGROUND

Before considering these particular women, it is useful to be remind-ed of the world inhabited by HIV-seropositive women in general.

46 JOURNAL OF HIV/AIDS & SOCIAL SERVICES


HIV-seropositive women tend to experience higher than normal stresslevels. They tend to have many individual and family concerns, as well asstruggles with and distrust of organizations, policies, social service pro-viders, medical personnel, and community members (Antle, Wells,Salter, DeMatteo, & King, 2001; Marcenko & Samost, 1999). They livewithin the context of HIV stigma and fear of judgment; disclosure andtreatmentdecisions; worries about their own healthand future; guilt at in-fecting their children and possibly leaving them orphans; sorrow overpast, current, and future losses; shifting roles and relationships;parentingand family caregiving; concern for HIV-seronegative children who maybe the sole survivors; issues around sexuality and reproductive choice; so-cial isolation; and permanency planning for their children (Faithfull, 1997;Foster, Stevens, & Hall, 1994). They might be challenged by poverty, lackof affordable housing, child protective services and other social servicesystems, violence, or addiction and recovery (Wenzel et al., 2004). Theyare likely to report symptoms of depression and anxiety and to express aneed for increased self-care (Hackl, Somlai, Kelly, & Kalichman, 1997;Kaplan, Marks, & Mertens, 1997). In addition, HIV-related human serviceworkproducesan inordinatelyhigh levelof stress, stemmingfromtheun-certaintyandseriousnessofHIVdisease,asenseof inadequacytoaddressahigh levelofneeds,emotionalexhaustionandbereavement, intense iden-tification with clients, ethical dilemmas, and challenges in the work envi-ronments (Bennett,Miller,&Ross,1995;Cushman,Evans,&Namerow,1995; Grube, Beckerman, & Strug, 2002; Maslach & Ozer, 1995).

I consider these four participants to be carrying higher than normalstress levels due to their memberships in both personal and professionalHIV-related domains. These women carried a fourfold burden: namely,living with HIV infection, caring for HIV-seropositive partners and chil-dren,beingin theworkforce,andhavinga jobworkingwithHIV-affectedfamilies. In addition, they were women of color, and membership in anoppressed group in the United States increases both personal and profes-sional stress (Johnson, Rush, & Feagin, 2000). The support group re-ported here gives a unique opportunity to understand the confluence ofthese stresses, and what helped and hindered the women as workers.Because they are living with HIV and are members of an HIV servicesystem, HIV dominates their personal and professional lives.

The Participants

Maria, Carmen, Aixa, and Carla1 were managing HIV-related symp-toms and medication side effects. At the time of the study, each was

Voices Heard 47


https://www.researchgate.net/publication/8398492_Wenzel_SL_Tucker_JS_Elliott_MN_Hambarsoomians_K_Perlman_J_Becker_K_et_al_Prevalence_and_co-occurrence_of_violence_substance_use_and_disorder_and_HIV_risk_behavior_a_comparison_of_sheltered_and_low-inc?el=1_x_8&enrichId=rgreq-d4448a02-16bc-4a07-846a-98f644586c71&enrichSource=Y292ZXJQYWdlOzIzMzA2MzcxMTtBUzoxMDAwNzAyMTMwMjk4OTVAMTQwMDg3MDAwNzAwOA==

https://www.researchgate.net/publication/13365943_Living_with_HIVAIDS_the_voices_of_HIV-positive_mothers?el=1_x_8&enrichId=rgreq-d4448a02-16bc-4a07-846a-98f644586c71&enrichSource=Y292ZXJQYWdlOzIzMzA2MzcxMTtBUzoxMDAwNzAyMTMwMjk4OTVAMTQwMDg3MDAwNzAwOA==

connectedtoanHIV-seropositivepartnerorex-partner.Allweremothersof HIV-seronegative children; three were raising an HIV-seropositivechildaswell.Allwereworking foranAIDS serviceorganizationasacasemanager or peer2 supporter for HIV-affected families (they no longerhold these jobs). Below are brief sketches of the women’s lives, based onhow they described themselves to me when I met them. The following vi-gnettes show tremendous challenges in their histories, but also amazingcapabilities.

Maria, born and raised in Peru, identifies as Latina. Her husband Rickis also Latin and HIV-seropositive. Their 8-year-old daughter Ana isHIV-seropositive. Their 12-year-old child is HIV-seronegative. Mariaand Ana are taking antiretrovirals, but Rick is not, having chosen to de-lay taking medications out of fear of side effects. Maria has been work-ing eight years as a peer counselor or case manager for HIV-affectedfamilies. Maria says that despite the strain of both of them testingHIV-seropositive, her marriage is very strong now, and they are eachother’s best friends and primary supports. Maria said during our firstmeeting that she felt “heavy” with loss. Within the last year, she lost abeloved director and a supervisor when they both quit; then her mother,to whom she was very close, died; her daughter began taking anti-retrovirals; and Maria herself was hospitalized with a life-threateningopportunistic infection.

Carmen, who identifies herself as Latina, was born and raised inPanama. She has Hepatitis C as well as HIV. Her husband Juan is fromArgentina. They met in the United States while they were living on thestreets and using heroin. He has been very sick with HIV-related renalfailure, and has been on dialysis for seven years, going in for daylongtreatments three days a week. Carmen has five children: Two (nowadults) are from her adolescent years in Panama and were raised by hermother, from whom she has been estranged for many years. She and herhusband have three teenagers: Her 11-year-old son was born HIV-sero-positive, and their two older daughters are HIV-seronegative. Carmen,her husband, and her son are taking antiretroviral medications. Carmenhas worked for six years as a peer counselor and case manager withHIV-affected families. Carmen is in a stressful marriage and often feelstrapped and depressed, but says she is committed to caring for her hus-band’s physical needs and keeping the family together.

Aixa identifiesherselfasaLatina.HerparentsmovedfromtheDomin-ican Republic to Massachusetts, where she was born. Aixa was a ward ofthe U.S. child welfare system as an infant and throughout her childhood.Her biological mother was murdered when Aixa was six; at that time her



older foursiblingsweresentback to theDominicanRepublic,andshe lostcontact with them. Aixa was molested and neglected by foster families asa young girl, and ran away as a young teenager. Aixa tested positive in1991,whenshewas pregnantwithherdaughter,but thinksshecontractedHIV several years earlier as she was using crack cocaine, drinking alco-hol, selling sex, and not paying attention to her health.She had previouslylost a daughter to the child welfare system. The daughter had been borncrack addicted and underweight, and Aixa had been distraught over whatshe had done to this child. She had a goal of becoming sober and havingher daughter returned to her custody. Her HIV diagnosis devastated heremotionally for a while, and she was terrified that her second child wouldbe HIV-seropositive. Fortunately, she learned when he was 18 monthsold that he was HIV-seronegative. She became tired of being homelessandsupportingherself throughsexwork. Itwasat thispoint shebegango-ing to support groups and learning to be a peer educator. Her childrenwere returned to her. Her child’s father, who is HIV-seropositive, is stillin contact with Aixa and their children; Aixa says she has a good relation-ship with him.

Carla was born and raised in a small town in Massachusetts–the sameplace where she now lives–and most of her family is close by. Her par-ents emigrated from Jamaica, and Carla identifies herself as JamaicanAmerican. She is in daily contact with her HIV-seropositive ex-partner,who is the father of her two children. Her HIV-seronegative 19-year-olddaughter and her 10-year-old HIV-seropositive son both live with her.When her son was 18 months old, Carla’s partner, from whom she hadseparated, learned that a drug-using buddy had AIDS, so he took an HIVtest. When he learned he had HIV, Carla took the test, and after shelearned she was positive, she had the baby tested. So in a two-week pe-riod, they learned that they all had HIV. Carla used cocaine at one timebut has been drug-free for many years. Carla and her son are both takingantiretrovirals. Carla has been an HIV service provider for six yearswith various agencies.

METHOD

The Support Group Sessions

FromSpring2000 toSpring2002, Imetwith thesewomeninpairsor ina group of three to facilitate stress management and mutual support.Occasionally Imetwithawoman individuallyaswell.CarmenandMaria

Voices Heard 49


had asked their contracting agency to arrange confidential supportoutside of their work environments, but they asked for it to be counted intheir work time, because they felt that as they were constantly dealingwith HIV both professionally and personally, their work was especiallystressful. Carmen had met me in an HIV training session I was leading,andasked that Ibe invited tomeetwith them. Iasked ifourmeetingscouldbe audiotape for later use in research, teaching,or training.3 Accordingly,aconsent formandIRBprotocolwereapproved.Sessionswereanywherefrom an hour to two hours, approximately once a month. Carmen andMaria–two peer counselors in separate agencies who knew each otherthrough their jobs–began meeting with me in March 2000. In January2001, Carmen was laid off. I met with Maria individually until Carlajoined us in May 2001. Aixa met with us from January to May 2002;Maria was the only participant who was present over the entire time.Carmen was the only participantwho had met me before the group began,but each participant had met or worked with the others before joining.

Each meeting began with a check-in about “headlines”–that is, eventsor situations thatwere having an impacton their feelingsor functioningatwork–and then we would agree on topics for that meeting. We formedguidelines regarding confidentiality, mutual support, and respect.Because the women knew each other through work, it was especially im-portant that boundaries be clear and that no stories about agencies or su-pervisors get repeated outside of our sessions. We agreed that althoughwe would be focused on their jobs, we would not try to solve administra-tiveorbureaucraticproblems;rather,wewouldbefocusedonthefeelingsraised by their work. This would be a safe place to talk about the expe-rience of being a woman with HIV in the HIV field, where the common-alities between them would facilitate emotional expression. I oncedescribed it to them as “a place to talk about what it’s like to have HIV inyourhomeandyourbodyandyour job.” Ioftenclarifiedmyrole;namely,that I was there as a supportive listener and facilitator for concerns that af-fected their jobs, but that I was not acting as their counselor or supervisor.When someone was stressed or struggling, I encouraged them to contacttheir own pastoral or therapeutic counselors.

Development of Themes and Domains

Each monthly group sessions was audiotaped. I transcribed each tapebefore thenextmeeting,sometimessummarizingthediscussionandsome-times trying to capture exchanges verbatim. Four times during the twoyears we were meeting, I used grounded theory methods to code the



transcripts in order to identify major themes (Charmaz, l990). I thenpresented these themes to the group members for discussion. This servedas a review of our work together and a way to set the direction for futuremeetings.

In preparing this report, I re-examined all transcripts for themes, thengrouped these themes into domains, according to whether they were per-sonal or work-related, HIV-related or not, and combinations of those cat-egories. Table 1 showcases the major themes in those categories.

RESULTS

As evidenced from the list in Table 1, the women discussed variouspersonal stresses related to HIV: concern for the health and future of theirchildren; caregiving for their partners and ex-partners; dealing withillness, medication protocols, and medication side effects for themselvesand other family members; advocating for one’s own needs; and worry-ing about one’s own health and ability to function or survive. In additionto these HIV-specific worries, they had the usual demands related to rais-ing children, running a household, and navigating relationships. In addi-tion, the women spoke of work-relatedstressors thatwere directly relatedto being in the HIV field, and some that were not necessarily specific toHIV work. They struggled with how bureaucratic rules got in the way ofadvocacy for teens, children, and parents; fighting HIV stigma in order toget families involved in advisory councils; helping culturally disparatefamilies collaborate and plan at meetings and retreats; and trying to pro-vide services with increasingly limited funds. Sometimes at family re-treats they dealt with disturbed children and teens and difficult dynamicsbetween and within families. They grieved over colleagues and peerswho were sick or had died. The place in their lives where personal andwork-related HIV concerns intersect represents the most frequently andenergeticallydiscussedarea inour meetings, and thedomainexamined inthis article. I believe that the major contribution of these women stemsfrom their ability to articulate how personal and professional stressorsintersected and magnified each other.

“Wearing Two Hats”: Living with HIVand Working in the HIV Field

Theterm“wearingtwohats”wasintroducedwhen,afterafewmeetings,Maria said the support group was proving to be useful in helping her deal

Voices Heard 51


with “wearing two hats.” When I asked her what the two hats were, she an-swered “consumer and provider,” meaning someone who was eligible forservices (to consume services) and who also provided those services. Thiswas the way Maria thought of her dual role: being a person with HIV and awife and mother of persons with HIV, alongside being a professional in theHIV field. In human services, the two roles of service provider and serviceconsumer are often carefully or even rigidly separated. When providersare encouraged to maintain boundaries professionally, that sometimestranslates into thinking of service recipients as different from service pro-


TABLE 1. What Contributes to HIV-Seropositive Women Working in the HIVField “Wearing Two Hats”?

Personal Stresses: HIV-Related Work Stresses: HIV-Related

Child-HIV: Concern for the health of theirHIV-infected child, the adjustment of theirHIV-seronegative children, and the futureof both

HIV Services: Providing services topersons and families constantlychallenged with HIV

Partners-HIV: Concern for the health ofand caregiving for their HIV-seropositivepartners and ex-partners

HIV Stigma: Fighting HIV stigma inrecruiting or serving families

Medication: Managing chronic and acuteillness and medication side effects forherself and for family members

Grief and Illness: Grieving due tocolleagues and peers who weresick or died

Service Needs: Advocating for oneselfand one’s family when services are needed

Health Worries: Worry about one’sown health, functioning, and future

Personal Stresses not HIV-Related Work Stresses not HIV-Related

Family: Coping with the demands of familyand home

Boundaries: Maintaining boundariesbetween work and home

Partner Relationship: Relationship andparenting struggles with partners andex-partner

Time Management: Need to managetasks and time better; learning to say no

Child-Rearing: Child-rearing pressuresand responsibilities

Limited Funding: Providing serviceswith increasingly limited funds

Bureaucracy Frustration: Frustrationwith bureaucratic rules blocking services andadvocacy

Cultural Differences: Helping culturallydisparate families cooperate and plan atmeetings and retreats

Difficult Situations: Working withdisturbed children and teensD

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viders. Inhabiting both these “them” and “us” worlds, the four women inthis group sometimes felt divided against themselves.

Given their serious personal and work-related stressors, these womendesired a workplace where their co-workers and supervisors understoodtheir strengths and limitations, respected their work, trusted them as col-leagues, and supported them as dedicated HIV advocates who were alsolivingwithHIV.Unfortunately, thoseexpectationsforunderstanding, re-spect, trust, and support were often disappointed. The most common andcompelling subject in our support group meetings was sadness and frus-trationovernotbeingadequatelyunderstoodorsupportedatworkregard-ing the special challenges of being an HIV-infected person in the HIVfield. They often did not feel appropriately supported and accommodatedat work as persons, partners, and mothers with HIV concerns. They re-lated these struggles to the organization’s inability to accept, understand,and work with someone who was both personally and professionallyaffected by HIV.

The women spoke often about the transition from consumer to staff,which had caused losses as well as gains. They gained status, meaning,and opportunities, but they also seemed to lose the right to empathic re-sponses to their needs. Throughout our time together, the women ago-nized over colleagues and bosses who demonstrated distrust, disrespect,and misunderstanding. They commented on the irony that they were inthe HIV field, where people should understand more about the strugglesof living with HIV than anywhere else, and the fact that they were hiredfor their jobs because they were HIV-infected. Following are examplesof their experiences regarding lack of support.

Maria said once that she wants her colleagues and superiors to simplyrememberandacknowledgethatshe’sawomanwithHIV,and thewifeofa man with HIV, and the mother of a child with HIV. She said repeatedlythat she did not want unusual treatment; she merely wanted her co-work-ers and supervisors to be aware of the reality of her life. Maria said, “It’snot personal emotional support we want, it’s for the job.” She said,“I want the staff to realize that, in spite of everything, we’re still consum-ers. And there are consumer families behind us. Personally, I don’t like toremind themof that. I shouldn’thave to.”As anexample, she talkedabouttaking some time off when her HIV-infected daughter was in the hospitalbeing monitored for a change of medications. She felt that she constantlyneededtojustifywhyshetookoffworkforsuchfamilymedicalneeds.

Maria went through several months of frustration because she felt thather supervisor did not trust or believe in her. Maria was feeling unusuallysad and stressed over her health at that time, worrying constantly about

Voices Heard 53


whether her children were going to be motherless, but was afraid to tellher supervisor about her mental or physical health, out of fear that shewouldseeheras lesscompetentor capable.Althoughshehadsickandva-cation time due her, she was uncomfortable with asking for time off be-cause she felt she needed to appear to be a super-worker. She wanted hersupervisor to see and treat her as a capable woman who happened to begoing through a rough time. Maria said, “When a peer works in the samefield, people do not know how to react. I guess they expect you to do thejob no matter what.” Maria said she had concluded that her supervisor as-sumes that people with HIV “have lots of problems, or cannot perform,”which insults her as a woman who is able to manage her own life andmake her own decisions. When Maria was out sick for a week with apainful opportunistic infection, she did not find her supervisor to be veryunderstanding:

What came in my mind is she is just not willing to deal with this ill-ness. And there’s nothing I can do. They knew in advance that theywere hiring a peer, and this is what comes with that. And the wayI was thinking was, I have never, ever taken any extra time thatI did not earn. . . . So give me my sick time when I’m not being ableto work. . . . They’re very open and proud, saying that they have apeer working for them. But what does that really mean? What’sbehind that? They have no idea. . . . If I would have expected anyjob to be supportive, this would be it.

Carmen considered herself a hard-working professional, but felt thatshe sometimesdeservedconsiderationas awomanwithHIV. She gaveasan example someone saying, “I forget you have that disease, you look sogood.” Carmen said she hates it when people tell her she looks good,because:

They don’t know I’m dying inside; they don’t know what this vi-rus is doing to me. The problem is, all the time when they see me Ismile; I try to look well every single day. You know, I don’t haveto show nobody I’m living with the disease. I don’t have to put asign on every single day. But, sometimes they forget Carmen isliving with AIDS. They think, “I see Carmen laugh, I see Carmenwalk, I see Carmen work full time, I see Carmen every day, I don’tthink Carmen have that disease. I don’t think she needs support.”But I don’t smile because things are easy. I don’t smile becausethings aren’t hard at home. I don’t smile because I’m happy I haveHIV. I smile because I’m glad to be alive. I smile because I’m glad



to do this work. But people don’t understand that. People I workwith don’t understand what I’m facing.

Carmensaid that it hurts her to be at an AIDS ServiceOrganizationandnot feel that they have empathy or understanding for her difficult homesituation, caring for a husband and a child with HIV. For example, sheonce took a week’s vacation to provide personal care to her husband afterhehadsurgery,butstillgotwork-related telephonecallsathomeallweek.She said:

That made me very sad; that was very painful, because when theyneed something from me, I’m there for them. So that’s not fair.They ask us for letters of support all the time for grants, but whenI need support, I don’t always get it. I feel used. The only support Iget is from the other family members I work with.

Aixa, during the first four months on the job as a peer advocate, hadbeen out sick frequently, due to HIV-related symptoms and medicationside effects, which kept her in the bathroom. While that is problematic fora new worker, Aixa felt that her supervisor had been unduly harsh aboutthe situation. She got the impression that her supervisor, even though sheis working in an HIV-related program, does not understand medicationside effects or opportunistic infections. Aixa complained:

The job description says you have to be HIV-positive. It’s why Iwas hired. I had to get a statement from my doctor that I was posi-tive, to get the job. That’s the only way you can have the job that Ihave. They really need to rethink whether they really mean that.Cause what’s the flip side of that? Why can’t they deal with some-one not being able to come in due to having HIV? I don’t under-stand that. It’s contradicting everything.

Speaking in the group as if she was talking to her supervisor, Aixa said,“How the hell can y’all have a job talking about you have to be positive,but when I can’t get out of bed, you tell me I ain’t never here.”

Shortly after she joined the group, Aixa had emergency surgery. Whenshe returned to work, she felt that she was constantly being watched andcriticized,and thather supervisorwasgivinghereven less leewayregard-ing absences or tardiness because they did not trust her to tell the truthabout the reason she was out or late. She felt that the behavior toward herhad changed because she had been out sick. She shook her head over why

Voices Heard 55


they did not seem to understand illness or to acknowledge her struggleswith health:

They know I have a disease. That’s the bottom line. I don’t justhave HIV, I have AIDS. I talk about it, but they’re not hearing me.They don’t hear what I say [about how sick she is at times]. Theyall carry themselves like they know everything about HIV, but I’mnot supposed to get sick! So I come in, and I just struggle. I strug-gle every day. I’m struggling with my own self, with my own stuff;I don’t need to come here and struggle with their stuff. I’m notwell. I’m really not.

Aixa wondered if her supervisor’s attitude and actions constituted dis-crimination, but she did not want to confront her supervisor or file a com-plaint, because she did not want to risk losing her job, which she loved.She joked, “They should have advertised for someone with a lot ofT-cells”–meaning someone whose immune system was highly func-tional–if they wanted a peer counselor who never got sick. This was the“catch-22” as Aixa saw it: They had to hire someone with HIV, but couldnot deal with that person occasionally getting sick, which cannot beavoided with a suppressed immune system.

Carlaalsoarticulatedthedual-identityproblem.Sheexpressedthesitua-tion thus:“Even thoughI’mHIV-positiveandIwork in theHIVfield, I stillhaveshitonmyshoulders.Sometimes Iwant to say, ‘Yo, I’maconsumer. Ihaveaninfectedchild.’”Oncesheofferedher theorythatpeopleforgot thatthe peers are HIV-infected and have HIV-infected family members, eventhough they were hired for that reason. She said that she is viewed muchmore frequently as a staff rather than a consumer, which is appropriate, butshe did not wish to be invisible as a woman living with HIV. She said, “Noonethinksyouneedsupport,becauseyou’reastaffmember.”Carlaofferedthis succinct complaint: “If they can’t deal with your being sick, the job de-scription shouldn’t say you have to be HIV-positive.”

DISCUSSION

The quote from Carla eloquently captures the women’s essentialcomplaint to their agencies: “Don’t advertise for and hire a person withHIV if you cannot accept the realities of HIV.” Where personal andprofessional HIV-related concerns intersected, the women felt unsup-ported and misunderstood by organizations they had expected to supportand understand HIV-infected women. They felt it should be possible for



them to wear the two hats at the same time, but their job sites seemed un-able to acknowledge the co-existence of these roles and support them ascitizensof twoworlds.Eachwasonewomanstraddling two realities,withher personal and professional lives linked by the same life-threatening,stigmatized, incurable disease.

People with HIV who are thinking of seeking employment expressconcerns about maintaining their functioning well enough to work, need-ing flexibility in scheduling and time off because of sickness or medicalappointments,makingdecisionsaboutdisclosureofHIVstatus, andfear-ing job discrimination (Brooks & Klosinski, 1999; McReynolds, 2001;Timmons&Fesko,2004).Thesewomen’sexperiencessuggest that theseconcerns are realistic. They were proud of their roles as HIV advocates,committed to working for the benefit of HIV-affected families, oftenworking long and hard at their jobs. They embraced the opportunity tomake a difference in the lives of others living with HIV, and wanted tokeep working even though they could qualify for monetary supportthrough disability and/or Temporary Assistance for Needy Families(TANF) benefits. Furthermore, each held a low-pay high-stress job,working with persons who were living and dying with HIV. They werenot looking for an easy road and they did not want special treatment.Rather, they wanted to be seen, heard, and respected for their strengthsand accommodated for their vulnerabilities. They expected that workingin the HIV field would afford them the opportunity to make a differenceforotherwomenandfamilies,and that theorganizationswouldbeknowl-edgeable about the needs of HIV-seropositive employees. Disappointedby their employment experiences, each felt angry and hurt, the result offeeling misused, mistreated, distrusted, or misunderstood.

Due to HIV stigma, confidentiality concerns, and a lack of researchon the topic, there is no definitive count of how many HIV-seropositivepersons are working in the HIV field at this time. Yet the AIDS servicefield has maintained a traditional commitment to full participation ofmembers of affected communities. At the same time improved medicalcare in this country has allowed more HIV-seropositive persons to seekvolunteer and paid employment. Therefore, it is logical to anticipateAIDS-related social and medical programs will continue to face boththe opportunity and the challenge of integrating persons with HIV intotheir organizational cultures and structures. These women’s experienceswith “wearing two hats” can offer social service organizations ideas forway to facilitateemployeeswithHIV beingmoresuccessful andsatisfiedwith their jobs. Employers wanting to meet the special needs of employ-ees with HIV may want to consider implementing the following recom-

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mendations: (1) Training all staff in the realities of HIV, (2) offeringemotional support for workers with HIV, such as the monthly supportgroup described in this report, (3) facilitatingsafer ways for employees todisclose their HIV diagnoses, (4) providing mentors, and (5) providinginformation on recognizing and addressing job discrimination.

It is not sufficient to train co-workers and supervisors about HIV con-cerns. Organizational cultures, which include values, goals, climate, andpractices, need to change in order to encourage the contributions ofpersons living with HIV who help the agencies to be relevant and effec-tive. Organizations must provide accommodations for the medical andemotional needs of these persons and the disabilities they experience.Such workers must be supported to stay in these jobs without sacrificingmental or physical health. Agencies’ underlying organizational philoso-phiesaremademanifest through theirpractices,whether theseguidelinesare written or even acknowledged (Hasenfeld, 1992; Schein, 1992). Anorganization’s stated goals may include support and empowerment forpersons with HIV, but when HIV-infected employees consistently expe-rience a lack of respect and understanding, this may be evidence that theagency’s practices are incongruent with intended values. Tokenism, orhiring persons with HIV just because funding sources require it, does nothelp the agencies, persons with HIV, or employees. Persons with HIVshould be full participants. Worker burnout can be mediated or avoidedwhen organizations work in partnership with individuals, through an em-powerment model taking into account the process as well as product, andsupporting employees as autonomous, dignified beings (Finn, 1990;Gutierrez & Lewis, 1999).

According to the Americans with Disability Act (ADA, 1990), HIV isa protected disability requiring workplace accommodation, so any em-ployer has the legal responsibility to take an employee’s HIV-relatedneeds into account. When workplaces develop HIV policies, they mustcomply with anti-discrimination and accommodation laws; avoid HIVstigma;put frameworks, standards, andprocedures inwritinganddistrib-ute them to everyone; and inform workers of their rights (Smartwork,2004). These guidelines should be even more strictly adhered to by orga-nizations that operate HIV-related programs and purposefully hire HIV-seropositive persons. If someone with HIV is hired, that person may needslightly more patience, understanding, accommodation, and mentoringthan people without serious health conditions. HIV-seropositive workersmaybevulnerableandfrightened,but theywouldnotbe in theworkplace ifthey were not motivated to do well. They need supportive supervisors andco-workers,andaworkenvironmentthatcanbeflexiblewhennecessary.



In the early years of the HIV pandemic, organizations and programsdeveloped specifically to servepersons with HIV tended to rely on inno-vative, inclusive structures and services developed through participa-tion of infected and affected persons (Chambre, 1996; Poindexter,2002; Wilson, 1995). Many of the managers and direct service person-nel in early AIDS Service Organizations were HIV-infected. The com-munity- based human service agencies thatwere founded particularly toserve persons with HIV were part of a radical social movement. With in-creased funding and formality, AIDS Service Organizations havetended to become bureaucratized and professionalized, perhaps dis-tanced fromtheiroriginalvalues (Cain,1997).Due to theshift inorgani-zational cultures or the incredible daily demands placed on serviceproviding agencies, it may be more difficult to attend to HIV-seroposi-tiveworkers’ realities today.TheexpertiseofpersonswithHIVremainsvital for organizations providing HIV-related services, if the goals ofempowerment, participation, and cultural competence are to be ad-dressed (Takahashi & Smutny, 1998; Valdiserri, Aultman, & Curran,1995; Van Roey, 1999). For their contribution to continue, organiza-tions must understand how to support and reasonably accommodatetheir needs as persons living with a chronic life-threatening illness thatperiodically and temporarily impairs them.

There are broader applications for the needs these women reported.Their experiences can provide a glimpse into how organizations are chal-lenged to deal with different abilities and diversity of all types, not onlypersons with HIV. In every social service realm, workers are confrontingchallenges in their personal lives. There are many social service fields,like addictions counseling, domestic violence, and anti-poverty pro-grams, where members of the most affected communities are sought af-firmatively for hiring. When organizations seek to employ affectedindividualsbecause of theirunderstandingand experience that they bringto the job, the organizations must be prepared for the ramifications of thathiring decision, which may include the employee’s vulnerability, frailty,and health and emotional condition in some ways. Traditional organiza-tional and management models allow for nontraditional voices less eas-ily. However, in order to provide culturally competent services that meetthe needs of their consumers, agencies must utilize models from lesstraditional sources and by listening to and responding to the needs of theiremployees who are HIV affected. In this way they will develop a modelthat encourages a partnership with community members they serve, onein which there is fuller participation, because their viewpoints areconsidered, and thus they are empowered and respected.

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NOTES

1. All names in this article are pseudonyms.2. “Peer” is common in the HIV field to describe HIV-infected workers.3. The author has used transcript excerpts, audiotape excerpts, and narrative sum-

maries in HIV classes and workshops.

REFERENCES

Americans with Disabilities Act (1990). P.L. 101-336, 104 Stat. 327. Washington, DC.Retrieved on July 3, 2006 from http://www.usdoj.gov/crt/ada/pubs/ada.txt.

Antle, B. J., Wells, L. M., Salter, G. R., DeMatteo, D., & King, S. M. (2001). Challengesof parenting for families living with HIV/AIDS. Social Work, 46(2), 159-169.

Bennett, L., Miller, D., & Ross, M. (1995). Review of the research to date on impact ofHIV/AIDS on health workers. In L. Bennett, D. Miller, & M. Ross (Eds.), HealthWorkers and AIDS: Research, Intervention and Current Issues in Burnout andResponse (pp. 15-34). Switzerland: Harwood Academic Publishers.

Brooks, R. A. & Klosinski, L. E. (1999). Assisting persons living with HIV/AIDS to re-turn to work: Programmatic steps for AIDS service organizations. AIDS Educationand Prevention, 11(3), 212-223.

Cain, R. (1997). Environmental change and organizational evolution: Reconsidering theniche of community-based AIDS organizations. AIDS Care, 9(3), 331-344.

Chambre, S. M. (1996). Uncertainty, diversity, and change: The AIDS community inNew York City. Research in Community Sociology, 6, 149-190.

Charmaz, K. (l990). ‘Discovering’ chronic illness: Using grounded theory. Social Sci-ence and Medicine, 30, 1161-1172.

Cushman, L. F., Evans, P., & Namerow, P. B. (1995). Occupational stress amongAIDS social service providers. Social Work in Health Care, 21(3), 115-131.

Faithfull, J. (1997). HIV-positive and AIDS-infected women: Challenges and difficul-ties of mothering. American Journal of Orthopsychiatry, 67(1), 144-151.

Finn, Janet L. (1990). Burnout in the human services: A feminist perspective. Affilia,5(4), 55-71.

Foster, S. B., Stevens, P. E., & Hall, J. M. (1994). Offering support group services forlesbians living with HIV. Women & Therapy, 15(2), 69-83.

Grube, B., Beckerman, N., & Strug, D. (2002). Examining the unique stresses and re-wards of HIV/AIDS work: Then and now. Journal of HIV/AIDS & Social Services:Research, Practice, and Policy, 1(2), 5-20.

Gutierrez, L. M. & Lewis, E. A. (1999). Bringing an empowerment perspective into or-ganizational practice. In L. M. Gutierrez & E. A. Lewis (Eds.), Empowering Womenof Color (pp. 80-99). New York: Columbia University Press.

Hackl, K. L., Somlai, A. M., Kelly, J. A., & Kalichman, S. C. (1997). Women livingwith HIV/AIDS: The dual challenge of being a patient and caregiver. Health andSocial Work, 22(1), 53-61.

Hasenfeld, Y. (1992). The nature of human service organizations. In Y. Hasenfeld(Ed.), Human Services as Complex Organizations (pp. 3-23). Newbury Park: Sage.



Johnson, J., Rush, S., & Feagin, J. (2000). Doing anti-racism: Toward an egalitarianAmerican society. Contemporary Sociology, 29(1), 95-110.

Kaplan, M. S., Marks, G., & Mertens, S. B. (1997). Distress and coping among womenwith HIV infection: Preliminary findings from a multiethnic sample. AmericanJournal of Orthopsychiatry, 67(1), 80-91.

Marcenko, M. O. & Samost, L. (1999). Living with HIV/AIDS: The voices of HIV-positive mothers. Social Work, 44(1), 36-45.

Maslach, C. & Ozer, E. (1995). Theoretical issues related to burnout in AIDS healthworkers. In L. Bennett, D. Miller, & M. Ross (Eds.), Health workers and AIDS:Research, Intervention and Current Issues in Burnout and Response (pp. 1-14).Switzerland: Harwood Academic Publishers.

Mason, C., Carey, C., Jaskulski, T., & Stukey, T. (1995). Providing supported employ-ment and other vocational rehabilitation services to individuals with HIV/AIDS.Journal of Vocational Rehabilitation, 5, 55-64.

McReynolds, C. J. (2001). The meaning of work in the lives of people living with HIVdisease and AIDS. Rehabilitation Counseling Bulletin, 44(2), 104-120.

Poindexter, C. (2002). “Be generous of spirit”: Organizational development of anAIDS service organization. Journal of Community Practice, 10(2), 53-70.

Schein, E. (1992). Organizational Culture and Leadership (2nd ed.). San Francisco:Jossey-Bass.

Smartwork: A Workplace Response to AIDS. (2004). Developing workplace HIV/AIDS policies (Module 3). Academy for Educational Development (AED) Centeron AIDS and Community Health, pp. 3-1 to 3-33. Retrieved on June 6, 2005 fromhttp://www.smartwork.org/pubs/pdf/en/en-mod-3.pdf.

Takahashi, L. M. & Smutny, G. (1998). Community planning for HIV/AIDS preven-tion in Orange County, California. APA Journal (Autumn), 441-456.

Timmons, J. C. & Fesko, S. L. (2004). The impact, meaning, and challenges ofwork: Perspectives of individuals with HIV/AIDS. Health and Social Work,29(2), 137-144.

Valdiserri, R. O., Aultman, R. V., & Curran, J. W. (1995). Community planning: A na-tional strategy to improve HIV prevention programs. Journal of Community Health,20(2), 87-100.

Van Roey, J. (1999). From principle to practice: Greater involvement of people livingwith or affected by HIV/AIDS. Geneva, Switzerland: UNAIDS (Joint Programmeon HIV/AIDS).

Wenzel, S. L., Tucker, J. S., Elliott, M. N., Hambarsoomians, K., Perlman, J., Becker, K.et al. (2004). Prevalence and co-occurrence of violence, substance use and disorder,and HIV risk behavior: A comparison of sheltered and low-income housed womenin Los Angeles County. Preventive Medicine, 39(3), 617-624.

Wilson, P. A. (1995). AIDS service organizations: Current issues and future chal-lenges. Journal of Gay & Lesbian Social Services, 2(3-4), 121-144.

RECEIVED: 07/05/06ACCEPTED: 06/24/06

doi:10.1300/J187v05n03_04

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Documents

Wearing Two Hats