Billy D. Kirkpatrick
Issues in Stigma Reduction
Reducing stigma within the local community is an important, yet abstract, goal for an AIDS Service Organization. It is rarely clear what methods are most effective in alleviating stigma and if/when stigma has been significantly reduced. Over the last five years, the staff and Board of Directors of West Alabama AIDS Outreach (WAAO) have sought to actively address stigma and to develop stigma-reduction methods that can be practically and consistently applied.
As the executive director of WAAO, I participate in a large number of public speaking engagements related to HIV and to the services provided by the agency. Early in the eighth year of my tenure, I believed that by accurately describing our clientele (many of whom do not fit the generalized “face” of HIV) and by refuting myths about the disease, stigma in the local community could decrease.
My speeches, though seen as informative, did not appear to have the intended effect. I am not HIV positive, nor am I representative of the general demographic of the WAAO clientele. These factors served as obstacles to having community members grasp who individuals with HIV truly are. There also did not appear to be any legitimate insight into the life of someone living with the disease. Remembering that interaction breeds familiarity those of us at WAAO decided to provide opportunities for interaction between the HIV positive community (clients of WAAO) and the community at large.
As of 2010, only two clients (out of 230) were willing to speak publicly about living with HIV. These two clients appeared to have a powerful influence on community members; yet they were unable to represent the diversity of our clients. Clients identified several factors as contributing to their reluctance to publicly identify as and speak about being HIV positive. Among these were: past experiences of confidentiality breaches by staff at medical clinics, distrust of service providers, poor treatment by family members and friends after disclosing their HIV status, and varying levels of exposure to judgmental and ignorant comments. Taking these factors into consideration, we discussed the potential benefits and risks and how to prevent clients from experiencing negativity should they meet with community members through WAAO. Given a strong volunteer base, whose time and service are immeasurable, and the willingness of our clients to meet with community members, we decided to move forward with attempts to reduce stigma and improve relationships through inter-group interaction.
Inception of the Ajani Groups
Ajani is an African word which means “He who wins the struggle.” Given the cultural relevance to many of our clients and the struggles which they’ve overcome, the group of clients selected to meet with community groups in WAAO-sponsored activities referred to as the Ajani Groups. Clients were selected by WAAO staff based on the following criteria: potential to be sincerely supportive of other clients, willing to commit to attending the groups on a regular basis, and the potential positive engagement with the community. We at WAAO were deeply appreciative of our clients and community members, who trusted us to provide a safe environment for the Ajani groups. The bravery of the original participants cannot be overstated.
The groups, which met between noon and 2
p.m., were held at the WAAO office on a monthly basis. The community members consisted of members of churches, civic clubs, or student groups. These groups not only provided food, but engaged in discussions and played board and card games with clients. Up to 15 clients were invited to participate in each group. Each group followed the same basic format. All attendees (students, staff, board members, and clients) would introduce themselves, and students were asked to provide one interesting fact about themselves. Lunch was then served, and roughly 25 minutes was allotted for all attendees to get their food, find seating, and begin talking. Efforts were made to strategically arrange the seating arrangement so as to encourage participants to interact with one another. Headbanz, a charades-type game, was often the popular choice, with clients and students on the same teams. They would spend the remainder of the time playing the game, with good-byes at the end.
Ajani Groups have been conducted since September 2012. The groups continue presently at the agency.
With the 20–24 age group accounting for the most new cases of HIV (CDC, 2010), WAAO makes great efforts to collaborate with the college students in the area to provide prevention education, testing services, and stigma-reduction activities. In the last three years, students from Social Work, Counseling, Criminal Justice, Nursing, Public Health, and the Honors College have attended Ajani Groups.
For some students, participation in the groups has been an optional service project during the semester. For others, participation has been completely voluntary and unrelated to coursework. Although most community groups that attend Ajani Groups purchase or cook food for the clients, students were not expected to do so. Students’ sponsorship of a meal is covered by WAAO. Additionally, prior to participating students are informed of the importance of confidentiality and sign confidentiality forms. The emotional safety of our clients is also discussed. Students are reminded of verbal and non-verbal communication that could be offensive to persons who are HIV positive.
Participants in the Ajani Groups are challenged in many ways. In partnership with faculty members, students are given an opportunity to interact with persons who were quite often very different from them. Data is collected and while reporting this data is beyond the scope of this piece, it appears evident that personal stigmas regarding HIV, race, homophobia, and poverty are being questioned by the students. WAAO clients, including those who attend Ajani Groups, are predominantly African Americans who live below the federal poverty level, while the majority of students are white and middle-class.
Reasons for Client Involvement
Ajani Groups are designed to decrease the effects of stigma on WAAO clients themselves. It was hoped that positive interactions with students through the Ajani Groups would allow clients to view the outside world as less threatening, which, in turn, would improve their self-esteem and social well-being.
Impact of Student Involvement
By all accounts from students, clients, and WAAO staff, Ajani Groups have been successful in breaking stigma-related barriers. Comments by students reflected that perceptions of those living with HIV/AIDS had become more positive and less stigmatizing due to their participation. Students also stated that the overall Ajani experience was enjoyable. Overwhelmingly, clients enjoyed the unique social offering that Ajani Groups provided and were willing to have students join them again. Staff members felt that students were enthusiastic participants, were actively engaged for the entirety of groups, and that they made special efforts to include all clients in conversations.
Initially, I had concerns about working with students, especially undergraduate students. Any fears I had about student involvement in Ajani Groups were unwarranted. Overall, student groups have had higher-energy participation and more in-depth conversations with clients than the majority of non-student groups. The quality of student participation was not determined by whether participation was a mandatory facet of a service project or a volunteer activity scheduled by one’s major program. Many students could have opted out of participating, citing scheduling conflicts, but the vast majority of each group attended. Some, even with legitimate scheduling conflicts still worked out time to attend. We have been very pleased to see such willingness by the younger generation to spend time with those living with HIV/AIDS. As we have had 10 distinct student groups and over 100 student participants thus far and, since
the number of participants is ever-growing, it is clear that Ajani Groups has given us a powerful and consistent tool for linking our clients with the student population, thus decreasing stigma among the students and providing them with a rare and enlightening educational opportunity.
With focus on the students, it was easy to overlook the contribution of the clients. Their bravery in disclosing their status has been noted, but, for the groups to be successful, they must be as willing as the students to engage fully. In many ways, the Ajani clients are the face of WAAO to the community. If they had kept themselves emotionally isolated from the students or had come across as cold or uninviting, they may have reinforced negative stigmas held by students and may have lessened the likelihood that future student groups would ask to participate. These clients, however, represented the agency and their fellow clients spectacularly. They made each student feel welcomed, showcased their unique personalities, and were even willing to discuss their personal struggles to students when asked. They deserve as much credit for the success of Ajani Groups as the students.
Areas for Improvement
We always hoped that student-client relationships that blossom at Ajani would continue to grow. That is, we would like students to attend multiple times in order to get to know clients more fully. Or, we encourage students to build relationships with clients outside of the Ajani setting. However, these opportunities rarely materialized as few post-Ajani meetings occurred. Busy student schedules often prohibit further Ajani participation, and, given the transiency of many students, consistent face-to-face meetings have not proven to be a practical goal.
As an AIDS Service Organization, WAAO has unique access to a stigmatized population, providing the opportunity to develop substantial stigma-reducing activities. Ajani Groups represented a major step forward in alleviating stigma for WAAO’s clientele. University students and WAAO clients have demonstrated the ability to have enjoyable and informative interactions. Students seemed to have reduced stigma after participation in Ajani, and clients seemed to benefit as they witness the compassion of those who are not typically in their social circles. WAAO recommends this type of activity for any AIDS Service Organization seeking to decrease stigma in its local community. I encourage community organizations to reach out to academic institutions in partnership. There are many ways in which such collaborations can be mutually beneficial to all groups involved. In this one example, an innovative partnership resulted with all groups involved—clients, students, and the academic institution.
About the Author
Billy D. Kirkpatrick is executive director of West Alabama AIDS Outreach in Tuscaloosa, Ala.