Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda

Amy  Kaler; Arif  Alibhai; Walter  Kipp; Tom  Rubaale; Joseph  Konde-Lule

doi:10.4236/wja.2012.23023

Amy Kaler^*, Arif Alibhai, Walter Kipp, Tom Rubaale, Joseph Konde-Lule

Abstract: Stigma has been of tremendous concern in the AIDS epidemic. In this paper we investigate reported experiences of stigma in western Uganda, as related by coresidents treatment partners (TPs) of people receiving treatment through a community-based treatment programme. A survey (n = 110) and open-ended interviews (n = 30) were used. We found that while stigma persists, it is balanced by kindness and sympathy expressed by relatives and neighbours. Stigma experiences involve isolation and gossip, rather than harassment or violence. We argue that the persistence of isolating behavior may be related to 1) practical concerns about avoiding requests for assistance coming from families of people with AIDS; and 2) the perception that people with AIDS are "walking corpses", in a liminal state between life and death. The perception of AIDS as a death sentence appears to be a stronger driver of stigma than perceptions of sexual misbehaviour or promiscuity in the acquisition of AIDS. We argue that treatment has the potential to reduce stigma because it permits a repeal of this perceived death sentence.

Keywords: Stigma; Antiretroviral Treatment; Uganda; Community; Household

Cite this paper: A. Kaler, A. Alibhai, W. Kipp, T. Rubaale and J. Konde-Lule, "Walking Corpses and Kindly Neighbours: Retrospective Accounts of AIDS Stigma in Western Uganda," World Journal of AIDS, Vol. 2 No. 3, 2012, pp. 174-182. doi: 10.4236/wja.2012.23023.

References

[1] A. Castro and P. Farmer, “Understanding and Addressing AIDS-Related Stigma: From Anthropological Theory to Clinical Practice in Haiti,” American Journal of Public Health, Vol. 95, No. 1, 2005, pp. 53-59. doi:10.2105/AJPH.2003.028563

[2] T. Rosenberg, “When a Pill Is Not Enough,” New York Times, 6 August 2006.

[3] E. G. Benotsch, D. W. Seal, L. Y. Stevenson, C. A. Sitzler, J. A. Kelly, L. M. Bogart and C. Gore-Felton. “Stigma, AIDS and HIV Prevention in Africa: Reports from Community Organizations Providing Prevention Services,” Journal of Human Behavior in the Social Environment, Vol. 18, No. 3, 2008, pp. 329-349. doi:10.1080/10911350802427571

[4] P. Piot, “Stigma Major Barrier to Fighting AIDS,” 2002. http://www.aegis.org/DisplayContent/DisplayContent.aspx?SectionID=128868

[5] B. Ki-Moon, “The Stigma Factor,” 2008. http://www.unaids.org.cn/uploadfiles/20080902175623.doc

[6] E. Goffman, “Stigma: Notes on the Management of Spoiled Identity,” Simon & Schuster, New York, 1963.

[7] S. Sontag, “Illness as Metaphor and AIDS and Its Metaphors,” Picador, New York, 2001.

[8] T. de Bruyn, “HIV-Related Stigma and Discrimination—The Epidemic Continues,” Canadian HIV/AIDS Policy & Law Review, Vol. 1, No. 1, 2002, pp. 8-14.

[9] P. S. Dhlamini, D. Wantland, L. N. Makoae, M. Chirwa, T. W. Kohi, M. Greeff, J. Naidoo, J. Mullan, L. R. Uys and W. L. Holzemer, “HIV Stigma and Missed Medications in HIV-Positive People in Five African Countries,” AIDS Patient Care & STDs, Vol. 23, No. 5, 2009, pp. 377-387. doi:10.1089/apc.2008.0164

[10] C. E. Abadia-Barrero and A. Castro, “Experiences of Stigma and Access to HAART in Children and Adolescents Living With HIV/AIDS in Brazil,” Social Science & Medicine, Vol. 62, No. 5, 2006, pp. 1219-1228. doi:10.1016/j.socscimed.2005.07.006

[11] A. Castro and P. Farmer, “Understanding and Addressing AIDS-Related Stigma: From Anthropological Theory to Clinical Practice in Haiti,” American Journal of Public Health, Vol. 95, No. 1, 2005, pp. 53-59. doi:10.2105/AJPH.2003.028563

[12] R. Parker and P. Aggleton, “HIV and AIDS-Related Stigma and Discrimination: A Conceptual Framework and Implications for Action,” Social Science & Medicine, Vol. 57, No. 1, 2002, pp. 13-24. doi:10.1016/S0277-9536(02)00304-0

[13] S. Babalola, A. Fatusi and J. Anyanti, “Media Saturation, Communication Exposure and HIV Stigma in Nigeria,” Social Science & Medicine, Vol. 68, No. 8, 2009, pp. 1513-1520. doi:10.1016/j.socscimed.2009.01.026

[14] R. Stephenson, “Community Factors Shaping HIV-Related Stigma among Young People in Three African Countries,” AIDS Care, Vol. 21, No. 4, 2009, pp. 403-410. doi:10.1080/09540120802290365

[15] M. J. Visser, J. D. Makin, A. Vandormael, K. J. Sikkema and B. W. C. Forsyth, “HIV/AIDS Stigma in a South African Community,” AIDS Care, Vol. 21, No. 2, 2009, pp. 197-206. doi:10.1080/09540120801932157

[16] M. Boulay, L. Tweedie and E. Fiagbe, “The Effectiveness of a National Communication Campaign Using Religious Leaders to Reduce HIV-Related Stigma in Ghana,” African Journal of AIDS Research (AJAR), Vol. 7, No. 1, 2008, pp. 133-141. doi:10.2989/AJAR.2008.7.1.13.441

[17] J. Chiu, J Grobelaar, K. Sikkema, A. Vandermoel, N. Bomela and T. Kershaw, “HIV-Related Stigma and Social Capital in South Africa,” AIDS Education and Prevention, Vol. 20, No. 6, 2008, pp. 519-530. doi:10.1521/aeap.2008.20.6.519

[18] H. Muyinda, J. Seeley, H. Pickering and T. Barton, “Social Aspects of AIDS-Related Stigma in Rural Uganda,” Health & Place, Vol. 3, No. 3, 1997, pp. 143-147. doi:10.1016/S1353-8292(97)00010-5

[19] S. Kalichman and L. Simbayi, “HIV Testing Attitudes, AIDS Stigma, and Voluntary HIV Counselling and Testing in a Black Township in Cape Town, South Africa,” Sexually Transmitted Infections, Vol. 79, 2003, pp. 442-447. doi:10.1136/sti.79.6.442

[20] C. Campbell, Y. Nair, S. Maimane and J. Nicholson, “'Dying Twice: A Multi-Level Model of the Roots of AIDS Stigma in Two South African Communities,” Journal of Health Psychology, Vol. 12, No. 3, 2007, pp. 403-416. doi:10.1177/1359105307076229

[21] M. J. Visser, T. Kershaw, J. D. Makin and B. W. Forsyth, “Development of Parallel Scales to Measure HIV-Related Stigma,” AIDS & Behavior, Vol. 12, No. 5, 2008, pp. 759-771. doi:10.1007/s10461-008-9363-7

[22] G. Letamo, “Prevalence of, and Factors Associated with, HIV/AIDS-Related Stigma and Discriminatory Attitudes in Botswana,” Journal of Health, Population & Nutrition, Vol. 21, No. 4, 2003, pp. 347-357.

[23] L. Nyblade, R. Pande, S. Mathur, K. MacQuarrie, R. Kidd, H. Banteyerga, A. Kidanu, G. Kilonzo, J. Mbwambo and V. Bond, “Disentangling HIV and AIDS Stigma in Ethiopia, Tanzania and Zambia,” International Centre for Research on Women, Washington, 2003.

[24] J. Ogden and L. Nyblade, “Common at Its Core: HIV- Related Stigma Across Contexts,” International Centre for Research on Women, Washington, 2006.

[25] C. I. Ulasi, P. O. Preko, J. A. Baidoo, B. Bayard, J. E. Ehiri, C. M. Jolly and P. E. Jolly, “HIV/AIDS-Related Stigma in Kumasi, Ghana,” Health & Place, Vol. 15, No. 1, 2009, pp. 255-262. doi:10.1016/j.healthplace.2008.05.006

[26] L. Nyblade, K. MacQuarrie, G. Kwesigabo, A. Jain, L. Kajula, F. Philip, W. Tibesigwa and J. Mbwambo, “Moving forward: Tackling Stigma in a Tanzanian Community,” Population Council, Washington, 2008.

[27] M. Boulay, L. Tweedie and E. Fiagbe, “The Effectiveness of a National Communication Campaign Using Religious Leaders to Reduce HIV-Related Stigma in Ghana,” African Journal of AIDS Research, Vol. 7, No. 1, 2008, pp. 133-141. doi:10.2989/AJAR.2008.7.1.13.441

[28] A. Chimwaza and S. Watkins, “Giving Care to People with Symptoms of AIDS in Rural Sub-Saharan Africa,” AIDS Care, Vol. 16, No. 7, 2004, pp. 795-807. doi:10.1080/09540120412331290211

[29] F. Thomas, “Stigma, Fatigue and Social Breakdown: Exploring the Impacts of HIV/AIDS on Patient and Carer Well-Being in the Caprivi Region, Namibia,” Social Science & Medicine, Vol. 63, No. 12, 2006, pp. 3174-3187. doi:10.1016/j.socscimed.2006.08.016

[30] V. Hosegood, E. Preston-Whyte, J. Busza, S. Moitse and I. M. Timaeus, “Revealing the Full Extent of Households’ Experiences of HIV and AIDS in Rural South Africa,” Social Science & Medicine, Vol. 65, No. 6, 2007, pp. 1249-1259. doi:10.1016/j.socscimed.2007.05.002

[31] W. Kipp, D. Tindyebwa, T. Rubaale, E. Karamagi and E. Bajenja, “Familt Caregivers in Rural Uganda: The Hidden Reality,” Health Care for Women International, Vol. 28, No. 10, 2007, pp. 856-871. doi:10.1080/07399330701615275

[32] B. Ndyanabangi, W. Kipp and H. J. Diesfeld, “Reproductive Health Behaviour among In-School and Out-of-School Youth in Kabarole District, Uganda,” African Journal of Reproductive Health, Vol. 8, 2004, pp. 55-67. doi:10.2307/3583393

[33] W. Kipp, C. Masheisha, F. von Sonnenburg and P. Weiss, “Influence of Personal Experience of Dying AIDS Patients on Attitude and Sexual Behaviour in Kabarole District, Uganda,” AIDS, Vol. 8, No. 3, pp. 392-398.

[34] L. Adeokun, “Household Functioning and AIDS,” Vol. 8, Quantitative Data: Combined 3-District Report (Masaka, Kabarole, Rukungiri), Institute of Statistics and Applied Economics, Makerere University, Kampala, 1996.

[35] A. Kaler, “Gender-as-Knowledge and AIDS in Africa: Shifting Concepts, Malawian Stories, Historical Contexts and a Cautionary Tale,” Infectious Diseases and the Social Sciences Workshop, Cornell University, Ithaca, 2007.

[36] N. Bedingfield, “The Psychosocial Impact of Highly Active Antiretroviral Therapy on Patients and Caregivers in Western Uganda: A Qualitative Study,” Thesis for Master of Public Health, University of Alberta, Edmonton, 2008.

[37] R. Jewkes, “Beyond Stigma: Social Responses to HIV in South Africa,” The Lancet, Vol. 368, 2006, pp. 430-431. doi:10.1016/S0140-6736(06)69130-7

[38] IRIN PLUS News, 2009. http://www.plusnews.org/Report/78809/AFRICA-Mind-your-language-a-short-guide-to-HIV-AIDS-slang

[39] V. Turner, “The Forest of Symbols: Aspects of Ndembu Ritual,” Cornell University Press, Ithaca, 1967.