Transgender HIV prevention: Community involvement and empowerment

by Walter O. Bockting, Ph.D. B.R. Simon Rosser, Ph.D., M.P.H. Eli Coleman, Ph.D.

Citation: Bockting W.O., Ph.D., Rosser S., Ph.D. , Coleman E., Ph.D. (1999)
Transgender HIV prevention: Community
involvement and empowerment IJT 3,1+2,
http://www.symposion.com/ijt/hiv_risk/bockting.htm

Abstract
Acknowledgements
Introduction
Planning
Needs Assessments
Recruitment
Intervention
Evaluation
Celebration
Replication
Discussion
Conclusion
References

Abstract
In the context of a paradigm shift toward transgender coming out and
empowerment, we mobilized a core group of
transgender community representatives to develop targeted HIV prevention
education. Focus groups assessed
transgender-specific prevention needs and enabled participants to become
invested in the project. Community members
designed and distributed recruitment materials. Trained peer educators
facilitated a workshop. A video created by
transgender artists personalized HIV/AIDS for participants, a panel of
transgender persons living with HIV/AIDS
enhanced perceived susceptibility to HIV infection, and sexually explicit
materials depicting transgender role models
eroticized safer sex. A transexual community activist facilitated a special
segment on empowerment and building
community. Community involvement ensured cultural sensitivity of program
intervention and evaluation. Together, these
strategies helped the community take ownership of the project and raised the
credibility of the prevention message.
Further university-community collaboration in HIV prevention research is
recommended.

Keywords: Community involvement, HIV prevention, transgender Walter Bockting is
Assistant Professor and Coordinator
of Transgender Services, Simon Rosser is Associate Professor, and Eli Coleman is
Professor and Director of the Program
in Human Sexuality, Department of Family Practice and Community Health, Medical
School, University of Minnesota.
Address correspondence to Walter Bockting, PHS, 1300 South Second Street, Suite
180, Minneapolis, MN 55454,
phone (612) 625 1500, fax (612 626 8311, e-mail bockt001@....


Acknowledgments
The authors thank the following transgender community and HIV/AIDS service
organizations for their collaboration: The
City of Lakes Crossgender Community, the Minnesota Freedom of Gender Expression,
the Aliveness Project, and the
Minnesota AIDS Project. Individuals who gave generously of their time and of
themselves include: Aaron, Celie, Debbie,
Dotty/Kevin, Jane, Mira, Sander, and Susan, who served on the planning
committee; Kate Bornstein, Steven Grandell,
and Paul Stravinsky who created the video and artwork; the workshop facilitators
and panelists; and the focus group,
workshop, and evaluation participants. It has been a true privilege working with
you. We thank the American Foundation
for AIDS Research for funding this project (#100108-12-EG), and Margaret
Reinfeld, Susan Leaf, and Charles Fuss for
their encouragement and support. Finally, we acknowledge the assistance of Lynn
Marasco, Anne Marie Weber-Main,
and Libby Frost in preparing the manuscript.


Introduction
In collaboration with transgender and HIV/AIDS community organizations, our
university-based program developed one
of the first HIV prevention education interventions targeting the transgender
population and piloted it in the
Minneapolis/St. Paul metropolitan area, Minnesota, U.S.A. Transgender persons
are affected by HIV/AIDS, yet virtually
no prevention education had been provided (Bockting, Robinson, & Rosser, 1998).
Therefore, we developed a
psychoeducational workshop based on the Health Belief Model, the Eroticizing
Safer Sex approach to HIV prevention,
and principles of personal and community empowerment. Community involvement was
key to the success of this project.
We offer this experience as a case study of collaboration between a university
and community organizations.
"Transgender" is an umbrella term that refers to people who cross or transcend
culturally defined categories of gender.
They include crossdressers or transvestites (those who desire to wear clothing
associated with another sex), male-to-
female and female-to-male transexuals (those who desire or have undergone
hormone therapy and/or sex reassignment
surgery), transgenderists (those who live in the gender role associated with
another sex without desiring sex reassignment
surgery), bigender persons (those who identify as both man and woman), drag
queens and kings (usually gay men and
lesbian women who "do drag" and dress up in, respectively, women's and men's
clothes), and female and male
impersonators (males who impersonate women and females who impersonate men).
Minnesota has a large transgender
population due to the availability of transgender-specific health care
(Hastings, 1969; Bockting, 1997a; Bockting &
Coleman, 1992). Minnesota also was the first state in the United States to
specifically include transgender people in
human rights legislation (Human Rights Act, 1993).

Historically, the various subgroups of this diverse population have not always
cooperated or felt comfortable with each
other. For example, male-to-female transexuals generally distanced themselves
from crossdressers because they felt that,
unlike themselves, crossdressers are "just into the clothes and don't genuinely
feel like women." Postoperative
transexuals distanced themselves from preoperative transexuals in order to blend
in with society as "new," no longer
transexual, women and men. Heterosexually-identified transexuals and
crossdressers separated themselves from gay-
identified drag queens and lesbian-identified drag kings. A hierarchy existed in
which those who conformed most to
nontransgender members of the desired gender were at the top and those who
conformed least were at the bottom of
the pecking order. Homophobia, transphobia, and shame reinforced these
divisions. Like other marginalized groups,
transgender people turned oppression inward, and infighting was common, making
for a fragmented community.

Subgroups defined on the basis of these divisions congregated in separate
quarters and founded corresponding
community organizations. The City of Lakes Crossdressers Club (CLCC) was founded
in 1984 by crossdressers who met
through association with our outpatient mental health clinic. They started to
meet for support and socializing at private
homes and later in a hotel. In 1988 several members of the CLCC founded a sister
organization, the Minnesota Freedom
of Gender Expression, which met at a community center. Female impersonators and
drag queens gathered at a local gay
and lesbian nightclub and in 1990 formed a chapter of the International Court
System, an organization creating cultural,
charitable, and recreational activities for drag queens, impersonators, their
partners and friends, and named it the Imperial
Sovereign Court of the Ice Castle.

In the 1990s, in the context of a paradigm shift toward affirmation of
transgender identity and coming out (Bockting,
1997b; Bolin, 1994; Stone, 1991), the boundaries between these subgroups and
divisions within the transgender
community began to blur. Transgender people gained greater visibility, organized
and empowered themselves, and
sought coalitions with the gay, lesbian, and bisexual communities. In 1992 in
Minnesota, this was reflected in the new
name of the Gay & Lesbian Pride Festival: it became the Gay, Lesbian, Bisexual,
and Transgender Pride Festival (see
Figure 1). The City of Lakes Crossdressers Club became more inclusive of
transexual people, changed its name to the
City of Lakes Crossgender Community, and moved its meetings to a local HIV/AIDS
service organization. The Minnesota
Freedom of Gender Expression began to meet at the offices of the Gay and Lesbian
Action Council. Consistent with this
paradigm shift and trend in community building, we decided to bring
representatives of the various subgroups and
community organizations together under the transgender umbrella to initiate
targeted HIV prevention.


Figure 1. Logo illustrating the inclusion of the transgender community in the
Twin Cities Pride Festival. Copyright 1992 by
Gay, Lesbian, Bisexual, and Transgender Pride/Twin Cities. Reprinted with
permission.

The rationale for community involvement in our HIV prevention project was based
on the belief that "the most effective
center of gravity for health promotion is the community" (Kreuter, 1992).
Community involvement ensures acceptability,
appropriateness, and relevance of the intervention to the target population, and
evidence suggests that people are more
committed to initiating and upholding changes that they help design or adapt to
their own purpose or circumstances
(Wong, Alsagoff, & Koh, 1992). Furthermore, we shared the belief that fostering
a sense of ownership raises the credibility
of the prevention education message, promotes self-efficacy, and creates
community norms that support protective
behaviors (Corby, Enguidanos, & Kay, 1996; Mantell & DiVittis, 1990; Person &
Cotton, 1996; Simons et al., 1996). To
facilitate community involvement, we built on existing relationships between the
university and local transgender
community and HIV/AIDS service organizations.

Collaboration between community and researchers has been emphasized strongly in
the second decade of the AIDS
epidemic (e.g., Adrien et al., 1996; Bouie, 1993; House & Walker, 1993; Mantell
& Divittis, 1990; Molbert, Boyer, &
Shafer, 1993). The best-known example is the Centers for Disease Control's HIV
Community Planning Process, in which
U.S. state health departments share the responsibility for identifying and
prioritizing HIV prevention needs with
representatives of the communities for whom the services are intended
(Valdiserri, Aultman, & Curran, 1995). Among the
principles that guide this collaboration are these: (1) that differences in
background, perspective, and experience are
essential and valued; (2) that roles and responsibilities are clarified at the
outset, and policies and procedures for
resolving disputes and avoiding conflicts are developed proactively; (3) that
resources are allocated for community
involvement; and (4) that shared priority setting is based on an accurate needs
assessment, a firm scientific basis for
intervention, consumer characteristics and values, and evaluation findings.
Challenges in this partnership between
community representatives, scientists, prevention workers, and health officials
include the complexity of participatory
processes, the potential for conflict to decrease administrative efficiency, and
the mistrust in marginalized communities of
government, scientists, and health authorities. In working with the transgender
community--a community even more
marginalized than the gay, lesbian, and bisexual communities--we committed
ourselves to these challenges and set out to
foster involvement and empowerment.

Personal and community empowerment has been shown to positively affect HIV risk
reduction. Effective interventions
provide HIV prevention education in a context that promotes self-efficacy and
affirms self-esteem and pride (DiClemente
& Wingood, 1995; Kelly, 1995). The pedagogy of Freire (1970) has guided
empowerment approaches in HIV prevention
(e.g., Cranston, 1992; Ferreira-Pinto & Ramos, 1995). Educators often define and
control the content of the intervention
to be delivered to passive participants; Freire argued that participants know
their own realities better than anyone else
and should be actively engaged in their own education. Fundamental to his
approach is the process of raising
consciousness among participants through a critical dialogue out of which change
and growth emerge. To facilitate
empowerment, we involved a core group of community representatives in the
development of the intervention, used
focus groups, trained peer educators, and included a segment on empowerment in
the workshop curriculum.

Establishment of a core group, usually in the form of an advisory board or task
force, has been widely applied in HIV
prevention. A core group of community leaders, key health professionals, and
members of the target population, provides
input throughout the program development process and shares in making decisions,
prioritizing prevention needs,
reviewing intervention materials, and disseminating information about the
program to potential participants. As the group
becomes more invested in the project, core group members who endorse the
intervention secure trust and community
support (e.g., Bouie, 1993; House, 1993; Kegeles, Hays, & Coates, 1996; Mantell
& DiVittis, 1990). Focus groups, a
method that originated in market research, involve members of the target
community to qualitatively assess prevention
needs, to evaluate the sensitivity and appropriateness of intervention
materials, and to obtain suggestions on logistics of
program implementation (Mantell & DiVittis, 1990).

Training peer educators to deliver intervention is empowering in more than one
way. Peer educators have the
opportunity to develop and practice prevention skills. Through their
similarities with program participants, they more easily
gain participants' attention and respect, promote feelings of self-efficacy
through positive role-modeling, and intervene on
the level of peer norms, creating the expectation that safer sex and needle
practices are socially accepted and valued.
In addition, education by peers who are living with HIV/AIDS has the potential
to enhance perceived susceptibility to
HIV infection (McKusick, Hortsman, & Coates, 1985; Kelly, 1995). Peer education
has been shown to be effective in
targeting gay men (Kelly et al., 1991; Kelly, Murphy, Sikkema, & Kalichman,
1993), youth (Baldwin, 1995; Kegeles et al.,
1996; Rickert, Jay, & Gottlieb, 1991), women (DiClemente & Wingood, 1995; Kauth,
Christoff, Sartor, & Sharp, 1993;
Stevens, 1994), sex workers (O'Reilly & Piot, 1996), and injecting drug users
(Simons et al., 1996).

We will first describe community involvement in each phase of program
development--planning, needs assessment,
recruitment, intervention, evaluation, celebration, and replication--then
discuss the impact of our project on community
building and the lessons we learned, and conclude with recommendations for
future collaboration between community
organizations and university faculty.


Planning
Representatives of the transgender community, the collaborating community
organizations, and the university-based
investigators formed a planning committee that included preoperative and
postoperative male-to-female and female-to-
male transexuals, a transgenderist, a bigender crossdresser, a transgender sex
worker, and a female impersonator/drag
queen and a transexual both living with AIDS. Committee members reflected a
spectrum of sexual orientation, relationship
status, and ethnic identification. Bringing these representatives with varying
experiences of identity and sexuality together
served to unite them in the fight against AIDS, to enable the community to take
ownership of the project, and to tailor
intervention and evaluation strategies to the characteristics and needs of the
target population. Tasks were divided into
three subcommittees focusing on (1) recruitment, (2) intervention, and (3)
evaluation, each reporting in biweekly meetings
to the full committee. Group process and consensus guided decision making.
Committee members were reimbursed for
their time.


Needs Assessment
To inform the intervention, we involved members of the target community in a
needs assessment through the use of
focus groups. We recruited participants through advertisements in general
community newspapers, transgender
organizations' newsletters, and personal networks of planning committee members.
We conducted four focus groups
with a total of 19 transgender persons (10 transexuals, 6 crossdressers, 2
transgenderists, and 1 drag queen/female
impersonator), four of them living with HIV/AIDS, according to a method
developed by Krueger (1988). Planning
committee members helped develop interview questions, focusing on four main
areas: (1) impact of HIV/AIDS on
transgender persons, (2) risk factors, (3) information and services needed, and
(4) recruitment strategies. Results were
reviewed with the planning committee and incorporated in the intervention.

Focus group findings confirmed the importance of community involvement.
Participants suggested the use of transgender
role models (e.g., peer educators, transgender-identified health providers,
transgender celebrities) to raise the credibility of
prevention messages. Participants stressed the value of bringing people together
in an environment where it is safe to
express their transgender identity; they felt this would be an incentive to
attend and serve to combat isolation and
alleviate shame stemming from social stigmatization. They recommended that the
intervention affirm transgender identity,
improve self-esteem, foster a sense of community, and emphasize that life is
worth living. Participants suggested that
building community based on commonalities between subgroups of the transgender
population be balanced with
sensitivity to individual differences.

We discovered that the focus groups facilitated community involvement beyond the
obvious purpose of gathering useful
information directly from members of the target community; they also encouraged
the community to become invested in
the project. A number of focus group participants became advocates for the
project, encouraging others to participate.
Half the focus group participants attended the intervention, and several of them
took an active part. For example,
participants living with HIV/AIDS volunteered to serve on a panel and share
their stories with workshop participants.


Recruitment
The needs assessment focus groups generated several suggestions for recruitment
of workshop participants, including
advertisements eroticizing safer sex, personal networking, street outreach, and
incentives such as food and money. The
planning committee reviewed these suggestions and decided to use the following:
advertisements and short articles in
newsletters, magazines, and community newspapers; posters in locations
frequented by the target population; personal
and street outreach using wallet-size cards with pertinent information;
announcements on a local transgender computer
bulletin board called Carolyn's Closet; and distribution of flyers to clients of
key health providers. Homemade snacks were
served during the workshop. Unfortunately, budget constraints did not allow us
to pay those who attended the workshop
for their participation.

Transgender-identified graphic designers produced a logo and prototypes of
advertisements eroticizing safer sex with a
transgender image. The planning committee reviewed these prototypes and selected
a series of four advertisements that
potential participants could identify with, that would attract them to the
workshop, and that would simultaneously have a
preventive effect by eroticizing safer sex. We faced our first hurdle when the
university administration deemed three of
the four advertisements inappropriate and too explicit, and refused to approve
them. This criticism pertained to both the
visuals and the text. For example, one ad depicted a transgender person dressed
in lingerie with the slogan "Let's get
down to basics--hot sex is safer sex"; it was intended to attract, among others,
those who crossdress for sexual
excitement (fetishistic crossdressers). We reached compromise with a less
revealing image an

Planning committee members wrote short articles that, along with advertisements,
appeared in newsletters of the
transgender community organizations they represented. Committee members placed
posters--enlarged versions of the
advertisements--in nightclubs, adult bookstores, public bathrooms, and other
establishments. Committee members also
conducted personal and street outreach at club meetings, in bars, and in
hangouts and strolls of transgender sex
workers. To ensure access, promote safety, and provide an opportunity for
training, much of this outreach was
conducted in pairs of an experienced outreach worker and a transgender peer.

We offered the intervention, a four-hour psychoeducational workshop, three times
during the course of six months. After
satisfactory recruitment for the first workshop (of the projected 50, 36
transgender persons participated), attendance at
the second workshop was disappointing (of the 34 registrants, 16 participated),
due in part to the extreme winter weather
conditions on the day of the workshop. Evaluation findings of the first two
workshops showed that personal outreach
accounted for the majority (55%) of recruits. Therefore, we increased our
outreach efforts, and committee members
invited their own personal networks through specially designed invitation cards.
Because evaluation findings showed
that we had primarily attracted preoperative transexuals (53%) and crossdressers
(21%), we added advertisements using
such terms as "postop transexuals," "female impersonators," and "drag
queens,"--instead of the more general term
"transgender"--to appeal directly to specific subgroups of the transgender
population. To prevent diluting the primary
purpose of attracting people to the workshop, these new advertisements did not
attempt to eroticize safer sex. As an
extra incentive, planning committee members organized a community celebration
immediately following the third
workshop. These combined efforts doubled recruitment for the third workshop,
proving community involvement
invaluable.


Intervention
The development of the workshop was based on (1) findings from the needs
assessment focus groups; (2) 25 years of
experience in providing Sexual Attitude Reassessment seminars and the
Transgender Health Seminar (Held, Cournoyer,
Held, & Chilgren, 1974; Lief, 1970; Bockting, 1997a; Bockting & Coleman, 1992);
(3) the Health Belief Model and the
Eroticizing Safer Sex approach to HIV prevention, and principles of empowerment
(Janz & Becker, 1984; Rosenstock,
Strecher, & Becker, 1994; Palacios-Jimenez & Shernoff, 1986; Fahlberg, Poulin,
Girdano, & Dusek, 1991); and (4) input
from the planning committee. Based on our experience with offering the Sexual
Attitude Reassessment seminar and the
Transgender Health Seminar to transgender clients, we chose a four-hour workshop
format, combining three large-group
and two small-group meetings. The first large-group presentation aimed to
increase the health beliefs of perceived
severity and susceptibility to HIV infection and transmission, followed by a
small-group discussion to process feelings and
identify personal risk. The second large-group meeting promoted risk reduction
and eroticized safer sex, and, consistent
with the Sexual Attitude Reassessment seminar's methodology, used sexually
explicit videos featuring, whenever
possible, transgender persons enjoying sex safely. The third and final
large-group presentation addressed personal and
community empowerment by affirming transgender identity, instilling
self-confidence and pride, and fostering a sense of
community (see Table 1). The planning committee created and adapted educational
materials to appeal directly to the
concerns and HIV risks of the transgender participants.

Table 1: Workshop Curriculum
First large-group presentation 60 minutes
Goals 1. To assist participants to be comfortable and receptive
2. To explain the purpose of the workshop and the research project
3. To describe the current scope of the HIV/AIDS epidemic
4. To personalize HIV/AIDS
5. To discuss fears, myths, and special vulnerabilities for transgender persons
and their partners

Content a) Welcome and introductions
b) Explanation of purpose
c) Logistics
d) What is HIV?
e) National and local statistics
f) Personalizing HIV/AIDS:
-Vignette
-Personal experience
-Guided visualization
-Video
g) Myths and concerns about HIV/AIDS
h) Special vulnerabilities
i) Panel of transgender persons living with HIV/AIDS

First small group 60 minutes
Goals 1. To provide a supportive and nonjudgmental place to process fears,
concerns, and experiences about
HIV/AIDS
2. To identify personal HIV risks
3. To enable open discussion of sexual behavior, substance use, and gender
concerns

Content
a) Confidentiality
b) Introductions
c) Emotional reactions and processing
d) Dyad exercise sharing experiences of HIV risk
e) Reasons for unsafe sex: Identify personal HIV risks

Second large-group presentation 45 minutes
Goals 1. To help participants understand how HIV is transmitted
2. To affirm and eroticize safer sex using an erotopositive and transgender
sensitive framework
3. To educate participants on risk reduction in the use of injection
paraphernalia
4. To teach assertiveness skills to insist on safer sex and needle practices

Content a) Introduction to preventing HIV transmission
b) Myths and facts about HIV transmission
c) Making sex fun and safe: Eroticizing safer sex
-Continuum of sexual risk
-Safer sex hints
d) Condom use
e) Sexually explicit videos affirming safer sex
f) Video: Safer needle practices
g) Sexual assertiveness and negotiation
-Reasons for unsafe sex
-Need for assertiveness
-Personal risk and prevention plan

Second small group 50 minutes
Goals 1. To practice condom use skills
2. To rehearse negotiation skills through role play
3. To develop an individualized prevention plan

Content a) Dyad condom exercise
b) Fish bowl role play negotiating safer sex
c) Dyad role plays negotiating safer sex or needle use
d) Individualize prevention plan with help from the group
e) Eroticize own sexual behavior
f) Concrete commitment to practice safer behaviors

Third large-group presentation 20 minutes
Goals 1. To provide referral for HIV testing
2. To respond to (medical) questions
3. To foster personal and community empowerment

Content a) HIV testing: Transgender sensitive testing sites
b) Questions and answers by a transexual physician
c) Pride=Power: Personal and community empowerment
d) Ritual facilitated by a transexual community activist
e) Video: "Condoms are a girl's best friend"


Community involvement in the workshop curriculum and implementation consisted
of:

1. Peer Education We recruited two large-group and ten small-group leaders from
the target community. A well-respected
male-to-female transgenderist who enjoyed a leadership role in the community was
co-facilitator of the large-group
presentations with the first author. She served as a role model by relating the
presented information to her life as a
transgender person and as the parent of a son who died of AIDS. Small-group
leaders, who reflected the diversity in
sexual identity, ethnicity, age, and relationship status of the target
group--pre-operative and post-operative male-to-female
and female-to-male transexuals, crossdressers, transgenderists, bigender
persons, drag queens and female
impersonators--attended a day-long training (see Table 2). The morning program
focused on learning the goals and
content of the workshop; increasing comfort in talking about sex; developing
sensitivity to the diversity in transgender
identity and sexuality; increasing HIV/AIDS knowledge and desirable attitudes;
and understanding risk behavior, safer
sex, and risk reduction in the use of injection paraphernalia. The afternoon
program focused on developing facilitation
skills in group discussion, exercises, and role play. Through small-group
simulations, peer educators rehearsed their skills.

Table 2: Small-Group Leaders' Training Curriculum
9.00 a.m. Welcome and introductions
9.30 a.m. Explanation of goals and content of the Intervention
Overview of workshop curriculum
10.00 a.m. Talking about sex
Group exercise: Sexual words
Dyad exercise: Sexual language

10.20 a.m. Break
10.30 a.m. Transgender identity and sexuality:
Information, attitudes, and values
Lecture, video, and discussion
11.15 a.m. HIV/AIDS: Information, attitudes, and values
Lecture, video, and discussion
11.50 a.m. Safer sex and risk reduction in the use of injection paraphernalia
Lecture, video, and discussion
12.30 p.m. Lunch
1.30 p.m. Group facilitation skills:
1. Ground rules: confidentiality, respect, boundaries
2. Facilitation skills: modeling, interaction, guidance
3. Specific techniques: talking about sex, active listening, probing,
summarizing
Lecture and handout

2.00 p.m. First small group simulation
Facilitator role rotates
3.00 p.m. Break
3.15 p.m. Facilitating exercises and role plays
Lecture and handout
3.45 p.m. Second small group simulation
Facilitator role rotates
4.35 p.m. Wrap up
Questions and discussion
5.00 p.m. Adjourn

2. Videoclip Personalizing HIV/AIDS To involve a transgender celebrity as a role
model, we invited transexual performing
artist Kate Bornstein to conceive a videoclip to personalize HIV/AIDS. Kate met
with a group of community members to
learn about their perceptions of how HIV/AIDS applies to them as transgender
people. In writing the script, she
incorporated themes and comments that surfaced during this meeting. A local
transgender video artist filmed and edited a
nine-minute infomercial that featured, along with Kate, three local people (a
male-to-female transexual, a female-to-male
transexual, and a drag queen/female impersonator), each playing a transgender
person uniquely at risk for HIV. Among
the HIV co-factors addressed in this video are: identity confusion or conflict,
shame and isolation, secrecy, and fear of
discovery and rejection. Toward the end of the video, Kate affirms participants'
self-worth and empowers them to
confront their HIV risk (Bockting, Grandell, & Bornstein, 1992): "Trust
yourself. Trust yourself to know that you're a good
and decent human being. Trust yourself to know that your life counts in this
world. Trust yourself to protect yourself
around HIV and AIDS. And the next time a voice comes up and tells you to be
silent, please remember how very loved
you are in the scheme of this world, and speak up in spite of the voice that
might silence you. You're my family. I can't tell
you how glad I am that you're at this workshop. Please be proud of yourself.
Please speak up about AIDS and HIV.
Please keep on living."

3. Panel of Transgender Persons Living with HIV/AIDS We accepted the offer of
focus group participants with
HIV/AIDS to make a panel presentation during the workshop. Two individuals, a
transexual and a drag queen/female
impersonator, introduced themselves and engaged in a question and answer session
with workshop participants. We
asked panel members to focus on the personal, on their adjustment, identity, and
sexuality, and to avoid intellectualizing
and lengthy hospital stories. For example: Q: "What, if any, of your crossgender
issues affected your contracting the HIV
virus?" A: "I think for me it would be being in denial of my transexualism for a
long time, having to repress that and having
to repress my sexuality, feeling really ashamed about the whole thing. It is
really easy to have unsafe sex when you feel
that way, because those feelings of shame can override anything, because they
are very strong. The biggest thing that
anyone can do is deal with that, accepting themselves and loving themselves,
knowing that they're worth it, you know,
all of that." Q: "Does your family know?" A: "My family knows. My mother never
accepted that I have AIDS. She can't
understand that her eldest son is really a female. My brother says it's a bunch
of bullshit. My sister is real supportive. My
sister says she doesn't know why it took me so long to decide to grow up to be a
woman. My sister is my biggest
support." The panel presentation was so successful that several other workshop
participants also living with HIV/AIDS
volunteered to be on the panel during subsequent interventions.

4. Sexually Explicit Videos Featuring Transgender Models During the second
large-group presentation designed to
promote risk reduction, we showed sexually explicit videos eroticizing safer
sex. Previous research demonstrated that
such videos reinforce behavior change (Quadland, Shattls, Schuman, Jacobs, &
D'Eramo, 1987). Although finding
educational videos portraying transgender persons having sex was hard, we
managed to locate a video of a female-to-
male transexual and a nontransgender female partner practicing safer sex
(Jaccoma, Armstrong, & Sprinkle, 1990).

5. Transgender Physician We invited a female-to-male transexual physician to
discuss HIV testing and answer medical
questions. We were amazed by the number of medical questions, suggesting that
future interventions address medical
aspects more extensively. Questions specific to transgender concerns included:
"What are the effects of hormone
therapy on HIV risk and disease progression?" and "What is the risk of HIV
infection through electrolysis?"

6. Transgender Community Activist In the third large-group presentation, a
male-to-female transexual local politician and
community activist fostered community and empowerment. She stressed
commonalities between subgroups of the
transgender community, creating a sense of unity. She affirmed the coalition of
the gay, lesbian, and bisexual
communities and the transgender community by reminding participants of the role
drag queens played in the 1969
Stonewall rebellion (which marked the beginning of America's gay rights
movement), and by pointing out the shared
struggle for social acceptance, for human rights, and against AIDS. She
facilitated a ritual. As participants stood in a
circle, she wrapped a red ribbon around their hands, nurturing feelings of
solidarity, affirming transgender identity and
sexuality, and instilling self-confidence and gender pride. All participants got
a piece of the ribbon to remind them of being
part of a community and a future worth living for.

7. Video Affirming Transgender Expression and Promoting Condom Use To end the
workshop, we showed a video titled
"Condoms Are a Girl's Best Friend," a parody of Marilyn Monroe's "Diamonds Are a
Girl's Best Friend" performed by a
female impersonator interspersed with scenes of transgender persons and their
partners (Lane & Kay, 1991).


Evaluation
We assessed community support, participant satisfaction, and changes in
participants' AIDS knowledge, attitudes, and
HIV risk behaviors both quantitatively and qualitatively. Quantitative
evaluation consisted of comparisons between
participants' responses on pre-workshop, post-workshop, and two-month follow-up
questionnaires. The evaluation
subcommittee of the planning committee drafted the questionnaires, which were
pilot-tested and reviewed by the entire
committee for cultural sensitivity and relevance. It was particularly rewarding
to free questions from conventional
assumptions of sex and gender in order to account for the unique anatomies and
realities of transgender persons. The
outcome was an instrument with clear, descriptive questions that reflected the
notion that the risk of HIV is behavior-
based and not dependent on gender or sexual orientation. For further clarity,
the committee defined a list of transgender-
specific and other key terms to guide respondents.

During this process, tension between community representatives and evaluators on
the planning committee arose.
Several community representatives felt strongly that the service we were
providing--the HIV prevention intervention--
should not be overshadowed by the research component, the questionnaire
evaluation. They argued that too obtrusive
an evaluation process would make participants feel like guinea pigs and
compromise the intervention by affecting
participants' trust and comfort. Others pointed out the value of evaluation of
our model program for future interventions
and for the long-term welfare of the community. Resolution of this conflict
benefited from the community and research
expertise represented on the committee, resulting in a substantially shorter
questionnaire.

Planning committee members assisted in data collection by staffing the
evaluation booth at the workshop together with
investigators, providing an opportunity for training in administering program
evaluation. After analyzing the data,
investigators discussed with the planning committee aggregate results and their
implications for future intervention and
research. Results showed an increase in AIDS knowledge and in positive attitudes
toward AIDS, sex, safer sex, and
condoms. Results also showed that participants socialized more than before with
transgender persons in the months
following the workshop, suggesting a decrease in isolation and a positive impact
on community building. Participant
satisfaction with the workshop was high (Bockting, Rosser, & Scheltema, in
press).

Qualitative evaluation consisted of a focus group of randomly selected workshop
participants. Questions focused on
intervention impact, satisfaction, and suggestions for improvement. Results
indicated a dramatic increase in AIDS
awareness, with participants teaching their respective communities what they
learned in the workshop. They reported
many conversations about safer sex with friends and family, and on the Internet.
The panel presentation of transgender
persons living with HIV/AIDS turned out to be powerful in raising perceived
severity and susceptibility. The involvement
of peer educators as small-group leaders was well received; participants valued
the leaders' skills in making people feel
comfortable and safe to open up. Participants showed great enthusiasm for more
targeted HIV prevention education to
protect and care for their community. They recommended that future prevention
education take a more contextual
approach, integrating HIV prevention in efforts to improve overall health and
psychosocial adjustment. Participants asked
for a further tailoring of intervention strategies to the different subgroups of
the transgender population and wanted to
hold the workshop at community sites. The focus group itself seemed to have a
preventive effect; during the discussion,
participants reinforced prevention messages for each other (Bockting, Robinson,
& Rosser, in press).

We involved planning committee members in disseminating evaluation findings to
the community. We distributed a
program manual outlining the intervention and evaluation findings to interested
community members (Bockting, Rosser, &
Coleman, 1993). Together with the first author, transgender community
representatives shared findings with family
physicians at the university, and with researchers, funders, prevention workers,
and representatives from communities
nationwide at the HIV Prevention Research Development Meeting in conjunction
with the 17th National Lesbian and
Gay Health Conference and the 13th Annual AIDS/HIV Forum.


Celebration
Although the impetus for the community celebration following the third workshop
was to boost recruitment, it also served
to acknowledge the successful completion of our project. Planning committee
members organized the gathering at their
regular meeting site, which had shifted during the course of the project to a
gay, lesbian, bisexual, and now transgender
nightclub. All workshop participants, staff, and the wider transgender community
were invited. During this celebration, we
honored planning committee members and peer educators for their contributions
and presented them with an AIDS
ribbon pin. The female impersonator with HIV/AIDS who served on the committee
provided entertainment. This was a
proud and well-attended community-building event.


Replication
Upon completion of our one-year project, we discussed future endeavors with the
planning committee. We agreed to
shift the responsibility for the intervention further to the community, with
university-staff retreating into an advisory role.
One committee member offered the workshop at the annual convention of the
International Foundation for Gender
Education in 1996. Attended by representatives of national and international
transgender communities, this workshop
had a twofold purpose: to address HIV for convention attendees, and to give them
an experience to build on to
implement HIV prevention efforts in their own communities. We trained two new
large-group leaders, a crossdresser and
a female-to-male transexual, and fifteen transgender-identified small-group
leaders to facilitate the workshop. Additional
video material was incorporated (The Gender Centre, 1995). This particular
workshop was dedicated to two transgender
community activists, Louis Sullivan and Jennifer Richards, both of whom died of
AIDS. As an outgrowth of this event, the
first author was invited to write an article for Transgender Tapestry, the
magazine of the International Foundation for
Gender Education, which enjoys a large worldwide distribution (Bockting, 1996).

Since the completion of our project, we have received numerous requests for the
program manual. This led to the
establishment of an international network of grassroots initiatives in
transgender HIV prevention with which we have
shared intervention materials; collaborative projects are under way.


Discussion
Impact on Community Building Our project had a positive impact on community
building. We brought representatives of
the various segments of the heretofore fragmented transgender community together
and united them in the fight against
AIDS. The planning committee and peer educators became a team. Transgender
participants living with HIV/AIDS
started an informal support group. Workshop participants from various
backgrounds and with various transgender
identities and sexualities bonded during the intervention and celebration.

Throughout and following our project, relationships between the various
subgroups of the transgender community have
strengthened. The City of Lakes Crossgender Community moved with the Minnesota
Freedom of Gender Expression to a
local gay, lesbian, bisexual, and now also transgender nightclub. The Imperial
Sovereign Court of the Ice Castle crowned
a transexual woman as their empress, and the planning committee member who
identified as a transgenderist (the former
President of the City of Lakes Crossgender Community) joined the Court and
performed as a female impersonator. Three
new transgender community organizations formed. One planning committee member
founded the Gender Education
Center, the first local transgender community organization with nonprofit status
and the first to receive funds for
sensitizing, among others, health providers and prevention workers to
transgender issues. Transexuals founded the New
Men and Women of Minnesota; Tri-Ess, a national organization of crossdressers
and their partners, formed a local
chapter. In addition, drag kings and male impersonators gathered at Vulva Riot,
a local cabaret. These groups now
maintain unprecedented cooperative relationships and together hosted the
convention of the International Foundation
for Gender Education entitled "Minnesota Pride, 1996" where their coalition with
the gay, lesbian, and bisexual
community was cemented in a keynote address by Melinda Paras, executive director
of the National Gay & Lesbian Task
Force. Important differences between these groups notwithstanding, they all
cross or transcend culturally defined
categories of gender. Together they are stronger in the pursuit of equality and
human rights. Lessons Learned Although
community involvement in our project built on long-standing relationships with
the local transgender community, the target
group's distrust of health researchers, practitioners, and policy makers indeed
surfaced. Like communities of color and
the gay, lesbian, and bisexual community, transgender people haven't always felt
that authorities are on their side. As
one transgender person said during our needs assessment: "My contention is that
the AIDS crisis was allowed to happen
by the U.S. government, the result being that sexual minorities are especially
vulnerable to contracting this disease and
dying. Hence, AIDS is society's punishment for being queer." The transgender
community has had its share of negative
experiences with researchers and health providers. For example, research was
used in 1979 to discontinue sex
reassignment services at Johns Hopkins (Meyer & Reter, 1979; Money, 1991).
Transgender persons report many
negative experiences with health care providers based on ignorance and
prejudice. Moreover, the medicalization of
transvestism and transexualism, and the gatekeeping role of mental health
professionals without whose written
recommendation a physician cannot initiate hormone therapy or perform sex
reassignment surgery, are subjects of
growing tension between providers and consumers (Walker et al., 1990; Bolin,
1988, 1994).

Since we are the main providers of sex reassignment services in the community,
this issue of distrust was especially
challenging for us. Although we consciously avoided dual relationships, a member
of our planning committee and small-
group leader, while continuing to participate in the HIV prevention project,
rallied a community protest publicly
denouncing our clinical services. Another Committee member temporarily resigned
out of solidarity with the protesters.
Because of our obligation to protect client confidentiality and our desire not
to aggravate the situation, we initially
responded cautiously. As the conflict continued to escalate, we intervened with
the planning committee, with individual
members of the community, and eventually in a public forum. The crisis was not
resolved until we articulated clearly what
we stood for, set limits with regard to the accusations leveled against us, and
negotiated boundaries in relationships with
community members. We discovered that the community perceived our initial
reserved response as uncaring. We
regretted that we hadn't defined our working relationship and boundaries more
clearly at the outset and agreed on how
to handle conflict, as recommended by others (Adrien et al., 1996; Valdiserri et
al., 1995). Working through this conflict
forced both parties to examine issues from each other's perspective, recognizing
potential and limits of collaboration,
ultimately leading to a deepening of mutual respect and trust. Recommendations
for Future Collaboration

1. Make a commitment to reciprocal collaboration. Successful, empowering
community-university collaboration must be
truly reciprocal. This requires a commitment on both sides to communicate,
listen, respect each other's goals and values,
and share in decision making. We recommend involving a core group of community
representatives earlier than we did,
in the proposal stage of the project, or, ideally, as an early, ongoing forum to
identify and address community health
needs. Group process allows Freire's critical dialogue to occur; group consensus
allows participants to share in decision
making. At the outset, define and agree upon roles and responsibilities, along
with ways to deal with conflict (e.g.,
keeping and resolving conflict within the group so as to not jeopardize the
project).

2. Strive for community-based intervention. We recommend that the intervention
be designed and implemented as much
as possible by the community. University-based interventionists can help
mobilize the community, secure funding, apply
relevant scientific knowledge, and facilitate skill development (e.g., by
training peer educators). If the community lacks
the infrastructure to initiate targeted prevention education, the university
should not hesitate to take the lead. Once the
community has gained sufficient cohesiveness, the university could fall back to
a consulting or advisory position, shifting
responsibility to the community.

3. Educate and involve the community in research and evaluation. Community-based
interventions can benefit greatly
from adequate formative and evaluation research. Epidemiological research is
often needed to justify funding for
prevention education; interventions informed by group-specific needs assessments
are more likely to be successful; and
evaluation can document effectiveness and provide helpful information for
program improvement. We recommend that
university-based researchers educate community representatives about these
benefits and actively involve them in
research and evaluation, while taking care to balance research and intervention
priorities so that evaluation does not
overshadow intervention.


Conclusion
We believe that as a result of our collaboration, both the university and the
transgender community have grown
(Bockting, 1993). We learned that affirmation of transgender identity, peer
support, and empowerment are key in
promoting transgender health; we now stress these elements also in our clinical
services. The transgender community
has come together and solidified its coalition with the gay, lesbian, and
bisexual community. Aware of their HIV risk and
supported by university faculty, transgender community members petitioned
successfully for a seat on the State
Commissioner's Task Force on HIV Prevention, the guiding body of Minnesota's HIV
prevention community planning
process. The seat that they proudly claimed as their own was named in honor of a
transexual member of our planning
committee, Celie Mahu Edwards, who died of AIDS. We look forward to continuing
collaboration to promote community
health.


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----------------
It is not the strongest of the species that survive, nor the most intelligent,
but the one most responsive to change - Charles Darwin

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