MENTAL BARRIERS
6.2 “SELF-REGULATED” EXCLUSION
6.5 INTERVENTIONS AT THE LEVEL OF THE INDIVIDUAL ORDER
So far two strategies in stigma reduction interventions have been discussed, namely the Human Rights discourse and the Information, Education and Communication campaign (IEC) / Knowledge, Attitudes and Practices approach (KAP). These approaches do not necessarily acknowledge or consider the underlying functions of stigma. It does not seem enough to sensitise PWDs or to tell them that they have a right to treatment and care. One also has to improve their capability to engage in reciprocal exchange, and in this way improve their social value. One has to recognize the fact that stigma permeates all aspects of life for a disabled person (and those around them). This means that stigma reduction interventions also have to target communities and the wider society.
In chapter 3 it was explored how TASO Kampala was the only clinic with a large number of clients with impairments. What was different here was the employment of a
79 disabled counsellor. She became a pioneer and an example of how PWDs were also a part of TASO’s program. She became a “front runner” by reaching out in the community. Together with colleagues, she went to the slum area and visited the homes where she knew PWDs lived. She was not only targeting PWDs, but also their families and neighbours. We saw that in the case of the girl hard of hearing who was pregnant and HIV positive. Here it was important to involve the whole family to change her situation. The counsellor succeeded in convincing PWDs and their families that they could gain from attending HIV/AIDS services. Care and treatment could prolong the lives of PWDs, and in that way they could take care of their children and continue their social lives and income related activities. They could maintain or improve their quality of life. By not being the only disabled person at the clinic, PWDs were encouraged to show up. One could say that they did not come to the “healthcare system”, but the
“system” came to them. I will point to three important strategies here, (1) being the good example and, (2) the “system’s” ability to reach out all the way to people’s homes and, (3) focusing on the role of the family and the community. The “healthcare system”
was represented by someone who knew what it meant to be disabled, the person knew of the special needs and problems PWDs have to face in their everyday life; it was a fellow-disabled person. Changing what-goes-on-people’s-head is rather complex and it requires long-term interventions focusing on norms and rules in the wider society.
However, including the family and the community could be a first step in this direction.
Another important factor seems to be the involvement of Disabled People’s Organizations (DPOs). They often provide the best insight into local attitudes, beliefs and practices regarding disability; they have the best information available on the numbers of PWDs in their communities and maintain strong networks that can notify PWDs throughout the area about HIV/AIDS education and services available. As stated earlier, PWDs are represented with more than 50.000 councillors in the local government system in Uganda. This great network could be a successful link to many PWDs throughout the country; however it requires some training and a willingness to be open about HIV/AIDS related issues both internally and externally. It takes courage to be pioneers and “front runners”, but in this way DPOs and other disability advocates could be helpful if they are included as partners in HIV/AIDS interventions.
80 6.6 SUMMARY
In this chapter it has been discussed how stigma may become a self-fulfilling process where “self-regulated” exclusion could be seen as the end-point, or the consequence of
“enacted” stigma by significant others and the wider society. The ability to engage in reciprocal exchange, which again is linked to social and environmental infrastructure and norms in the wider society are important factors in improving the social value of PWDs. Improving a person’s social value may reduce some of the underlying functions of stigma. Therefore it has been shown how stigma reduction interventions need to be addressed at different levels. I have underlined TASO Kampala as a good example in meeting the challenge of getting PWDs to come forward to be tested or treated. The
“healthcare-system” came to them by reaching out all the way to the homes of PWDs, targeting both PWDs and the rest of the community. Finally it has been discussed how DPOs and other disability advocates could be important partners in HIV/AIDS interventions by being pioneers and “front runners”.
81
7
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CONCLUSION
This study started out with the hypothesis that there was some kind of discrimination going on in the interaction between health workers at HIV/AIDS clinics and PWDs coming for HIV/AIDS testing or treatment. However, problems with discriminatory attitudes towards PWDs could not be confirmed from my fieldwork observations at five different HIV/AIDS clinics in Uganda. Health workers expressed that PWDs were entitled to the same care and treatment as everybody else. Still, I observed that only few PWDs seem to attend those HIV/AIDS services, and the question thus arises, why that is so? Problems with access and confidence (for example lack of sign language interpreters) are often reported as important issues regarding attendance at these services for PWDs. Those obstacles are there, but according to my fieldwork these physical barriers in the “healthcare-system” do not seem to be as important as barriers outside the “system”.
These barriers are constituted through a complex external-internal dialectic. As suggested by Jenkins, the link between stigma and selfhood should be understood as an ongoing and in practice simultaneous synthesis of (internal) self-definition and (external) definitions of oneself offered by others. The concept of stigma can be understood from three perspectives:
(1) “what-goes-on-in-people’s-heads” (“felt” stigma)
(2) “what-goes-on- between-people” (“enacted” and “felt” stigma)
(3) “established-ways-of-doing-things” (“enacted” stigma, for example by societal norms and rules).
82 Looking at the stigma PWDs have to face related to HIV/AIDS, the challenge seems to be related to normative expectations in society. Especially roles and rules related to the
“respected wife” and the “supporting husband” seem determinant when PWDs are not considered eligible marriage partners, and thus are not expected to be asked to participate in the reciprocal exchanges inherent to such relationships.
However, PWDs have the same desire for “wholeness” and “social value”, including the need to be loved as anybody else. This need combined with lower self-esteem makes it difficult to negotiate safe sex. Moreover PWDs are more vulnerable to sexual exploitation and abuse. They may engage in more informal relationships, which may be looked upon as “improper”. In addition, being diagnosed HIV positive reveals that one has somehow behaved “immorally”. Especially disabled women seem to fear being labelled as prostitutes, which I call a triple burden (disabled-HIV positive-prostitute), but disabled men also have the feeling that sex is not looked upon by society as being okay for them. According to Goffman, PWDs will internalize and accept the negative views of themselves held by others. Being HIV positive evokes feelings of guilt and blame which, combined with the feelings of being looked upon as less worthy and less acceptable as disabled, intensify “felt” stigma. The fear of stigma and its consequences such as social exclusion combined with “felt” stigma seems to pattern their behaviour, when PWDs “choose” to cover up their serum-status. This study points to the fact that this internalized stigma leading to a kind of self-regulating exclusion seems to be a central reason why PWDs do not attend HIV/AIDS services. However, self-regulated exclusion should be seen as dictated by circumstances and not necessary as a “chosen”
behaviour.
The real challenge seems to be how to target the normative expectations, which produce stigma in the first place and pattern the behaviour of PWDs when they
“choose” to cover up their serum-status instead of coming forward to be tested or treated. TASO Kampala can be seen as a good example of meeting this challenge. They employed a disabled counsellor who as a pioneer actively convinced PWDs in the communities that care and treatment could prolong their lives and maintain or improve
83 their quality of life. This approach can be seen as rather successful, since TASO Kampala was the only clinic in this study which had 63 disabled clients.
Even though more research on HIV/AIDS related stigma and disability is needed, intervention development must be a priority in order to address effectively the consequences of stigma in the lives of PWDs. This thesis suggests that interventions must focus on the social value of PWDs and their ability to participate in processes of reciprocal exchange in areas such as education, employment and marriage etc. These issues have to be addressed all the way from policy level to community level. This may be a way of meeting some of the underlying functions of stigma and push to the boundaries that a society creates between “normals” and “outsiders”. However, these may be seen as long-term interventions. If one seriously wants PWDs to be included in HIV/AIDS efforts, the “healthcare-system” has to create a link to PWDs, their families and the rest of the community by using outreach efforts, because this study shows that fear of stigma prevents PWDs from attending HIV/AIDS services by themselves, even if they know that they might be HIV positive. It seems important to train HIV/AIDS educators, outreach workers, clinic and social service staff on disability and stigma issues. When recruiting volunteers and paid employees, one ought to make sure that PWDs are also considered and hired for these positions, as it was done at TASO. The effect of being a fellow-disabled and a pioneer seems important. Disabled People’s Organizations (DPOs) can be helpful in creating the link between the “system”, the PWDs, and the rest of the community, since they have the best insight to local attitudes, beliefs and practices about disability, and often they have a great network to draw upon, which is the case in Uganda. However, DPOs have to openly acknowledge HIV/AIDS related stigma internally among their own members if they are to be seen as partners in HIV/AIDS interventions. Finally, interventions should be systematically monitored and evaluated to create evidence-based data on “best practices”.
84
REFERENCES
Agar, Michael
1980 The professional Stranger. An informal Introduction to Ethnography. New York, Academic Press
Barnes, Colin & Mercer, Geof & Shakespeare, Tom
1999 Exploring Disability. A Sociological Introduction.
Cambridge, UK, Polity Press Bernard, H. Russel
1995 Participant Observation. In: Bernard, H. Russel: Research Methods in Anthropology.
Qualitative and Quantitative Approaches. Walnut Creek et al: Altamira Press Devlieger, Patrick
1995 Why Disabled? The Cultural Understanding of Physical Disability in an African Society. In: Ingstand, Benedicte & Whyte, Susan Reynolds Whyte: Disability and Culture. Berkely, University of California Press
Egan, Gerard
2002 Den kompetente vejleder. København, Rådet for Uddannelses- og Erhvervsvejledning Fawcett, Barbara & Hearn, Jeff
2004 Researching others: epistemology, experience, standpoints and participation. I:
International Journal of Social Research Methodology, Vol. 7, No. 3 pp. 201-218 Gammeltoft, Tine
2003 Intimiteten. Forholdet til den anden. I: Hastrup, Kirsten (red.): Ind i verden. En grundbog i antropologisk metode. Hans Reitzels Forlag, København
Goffman, Erving
1990[1963] STIGMA – Notes on the Management of Spoiled Identity. Penguin Books, UK Gregersen, Bo
1975 Goffman. 11 artikler. Hans Reitzels Forlag, København Groce, Nora Ellen
2003 HIV/AIDS and people with disability.
The Lancet, Vol. 361, April 26, pp. 1401-1402
2004 HIV/AIDS & Disability: Capturing Hidden Voices. The Yale University/
World Bank Global Survey on HIV/AIDS and Disability.
http://cira.med.yale.edu/globalsurvey
85 Groce, N.E. & Trasi, R. & Yousafzai, A.
2006 Guidelines for Inclusion of Individuals with Disability in HIV/AIDS Outreach Effort. Yale University.
http://www.africacampaign.org/resources/Hiv+Disability+Guidelines.doc Hansen, Helle Ploug
1995 I grænsefladen mellem liv og død. København, Munksgaard Harraway, Donna
1988 Situated Knowledges: The Science Question in Feminism and the Privilege of partial Perspective. Feminist Studies, Vol. 14, No. 3
Hastrup, Kirsten
1991 Antropologiske studier af egen kultur. Norsk Antropologisk Tidsskrift 1: 10-14 2003 Metoden. Opmærksomhedens retning. I: Hastrup, Kirsten (red.):Ind i verden. En
grundbog I antropologisk metode. Hans Reitzels Forlag, København
Howson, Alexandra
2004 The body in Society. An Introduction. Cambridge, Polity Press, pp. 1-38 Jacobsen, Michael Hviid & Kristiansen, Søren
2002 Sociologien om det elementære livs sociale former. København, Hans Reitzels Forlag Jenkins, Richard
2000 Categorization: Identity, Social Process and Epistemology. Current Sociology, Vol. 48(3), pp. 7-25
2004 Social Identity. Second edition. London, Routledge Ingstad, Benedicte & Whyte, Susan Reynolds
1995 Disability and Culture: An overview. In: Ingstand, Benedicte & Whyte, Susan Reynolds Whyte: Disability and Culture. Berkely, University of California Press Last, Murray
2000 Social exclusion in northern Nigeria. In: Jane Hubert (eds): Madness, disability and Social Exclusion. The archaeology and anthropology of ‘difference’. London, Routledge
Lazarus, Jeffrey, et al.
2005 Models for life. Advancing antiretroviral therapy in sub-Saharan Africa. Current African Issues No. 31. The Nordic Africa Institute
86 Mogensen, Hanne Overgaard
1998 Mothers’ Agency – Others’ Responsibility. Striving for Children’s Health in
Eastern Uganda. Ph.d. thesis. Institute of Anthropology, University of Copenhagen.
Mogensen, Hanne Overgaard & Oberländer, Lars
In press Antropologiske perspektiver på kultur. I: Niklasson (red.): Socialfag for Sundhedsbachelorer. København, Frydenlund
Monico, Sophia, et al.
2001 Uganda: HIV and AIDS-related Discrimination, Stigmatization and Denial.
Joint United Nations Programme on HIV/AIDS (UNAIDS) Mulindwa, Innocent Najjumba
2003 Study on Reproductive Health and HIV/AIDS among Persons with Disabilities in Kampala, Katakwi and Rakai Districts (Knowledge, Attitudes and Practices) Commissioned by Disabled Women’s Network and Resource Organization with support from Action Aid Uganda. Email: dwnro-ug@infocom.co.ug Parkhurst, J.O. & Lush, Louisiana
2004 The political environments of HIV: lessons from a comparison of Uganda and South Africa. Social Science & Medicine 59 pp. 1913-1924
Ndeezi, Alex
2004 The Disability Movement in Uganda - Progress & Challenges with Constitutional &
Legal Provisions on Disability. Published by NUDIPU Kampala-Uganda Nyblade, Laura et al.
2003 Disentangling HIV and AIDS Stigma in Ethiopia, Tanzania and Zambia.
International Center for Research on Women. Washington DC, U.S.A.
Olsen, Henning
2002 Kvalitative kvaler – Kvalitative metoder og danske kvalitative interviewundersøgelsers kvalitet. Akademisk forlag A/S, Danmark Rankin, William, et al.
2005 A Call For Community: Two Papers on HIV and AIDS Related Stigma in Africa. Global AIDS Interfaith Alliance. www.thegaia.org
Reidpath, Daniel, et al.
2005 ‘He hath the French pox’: stigma, social value and social exclusion.
Sociology of Health & Illness, Vol. 27, No.4, pp. 468-489 Reis, Chen, et al.
2005 Discriminatory attitudes and Practices by Health Workers toward Patients with HIV/AIDS in Nigeria. Plos Medicine, Vol. 2, No. 8 pp. 0743-0752
87 Sanjek, Roger
1990 Ethnographic validity. In: Sanjek, Roger: Fieldnotes. The making of Anthropology. New York, Cornell University Press
Sentumbwe, Nayinda
1995 Sighted Lovers and Blind Husbands. In: Ingstand, Benedicte & Whyte, Susan Reynolds Whyte: Disability and Culture. Berkely, University of California Press Shilling, Chris
1993 The body and Social Theory. SAGE Publications Ltd., London Spradley, James P.
1979 The Ethnographic Interview. Holt, Rinehart and Winston. New York Spradley, James P.
1980 Participant Observation. Holt, Rinehart and Winston. New York Stiker, Henri-Jacques
1999 A History of Disability. The University of Michigan, USA
The National Strategic Framework for HIV/AIDS Activities in Uganda: 2000/1-2005/6 http://www.aidsuganda.org/pdf/nsf.pdf
Uganda Aids Commission UAC
http://www.aidsuganda.org/
United Nations
1982 The World Programme of Action concerning Disabled Persons http://www.un.org/esa/socdev/enable/diswpa00.htm
1993 The Standard Rules on the Equalization of Opportunities for Persons with Disabilities. http://www.un.org/esa/socdev/enable/dissre00.htm
UNAIDS & WHO
2005 Aids epidemic update, December 2005.
http://data.unaids.org/Publications/irc-pub06/epi_update2005_en.pdf Vilby, Knud
1998 Uganda. En politisk og økonomisk oversight. DANIDA, København Viras-Diaz, Nelson, et al.
2005 AIDS-Related Stigma and Social Interaction: Puerto Ricans Living With HIV/AIDS.
Qualitative Health Research, Vol. 15, No. 2, pp. 169-187
88 Whyte, Susan & Muyindwa, Herbert (forthcoming)
2007 Wheels and New Legs: Mobilization in Uganda. In: Ingstad, Benedicte & Whyte, Susan Reynolds (eds): Disability in Local and Global Worlds. Berkeley, California Press
World Health Organization
2001 International Classification of functioning, disability and health: ICF WHO, Geneva
World Health Organization
2006 Uganda, WHO Strategy Paper for 2006
http://www.who.int/hac/crises/uga/Uganda_StrategyPaper_February06_draft.pdf
Yousafzi, Aisha & Edwards, Karen
2004 Double Burden. A situation analysis of HIV/AIDS and young people with disabilities in Rwanda and Uganda. UK, Save the Children
89 LETTER TO PARTICIPANTS
Interactions between Healthworkers and People with Disabilities, focusing on HIV/AIDS.
Dear Sir/Madam,