216 Studies in the Education of Adults Vol. 43, No. 2, Autumn 2011

Cross-learning: The possibilitiesof a learning dialogue betweenthe HIV & AIDS and disabilitymovements

PETER RULE

University of KwaZulu-Natal, South Africa

AbstractSub-Saharan Africa is the region of the world most affected by HIV & AIDS, account-ing for two-thirds of the global burden of the pandemic. People with disabilities areregarded as a high-risk group for HIV but have been largely neglected in programmesof education, treatment and support. This paper examines the possibilities for a learn-ing dialogue between the HIV & AIDS and disability movements in an African context.It draws on a three-country research study into HIV & AIDS and disability in Uganda,Zambia and South Africa. The research made use of multi-case study approach basedon a range of data, including interviews, focus groups; site observations and docu-mentary analysis. The paper presents a model for articulating learning across thesesocial movements by describing best learning practices and examining struggle mile-stones in the HIV & AIDS and disability movements, as well as cross-cutting priori-ties that apply to both the AIDS and disability movements. Drawing on theories ofsocial movement learning and intersectionality, it argues for the importance of cross-cutting dialogue on a range of themes and in various formats between the two socialmovements.

Key wordssocial movements; cross-learning; HIV & AIDS; disability.

Introduction

The HIV & AIDS and disability movements share a number of characteristics in sub-Saharan Africa. Both have a rights-based agenda which entails the social inclusion of aparticular target group that often finds itself on the margins of society. Both confrontissues of stigma and discrimination, and engage in struggles to change popular, tradi-tional and official perceptions. Both contest structural constraints that exclude their

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members from full participation in society. And both have a potentially massive: sup-port base of people living with HIV and people with disabilities, and the potential notonly to transform individual lives, but to contribute to creating more just, equitableand inclusive societies.

This paper focuses on the possibility for 'cross-learning' between these twosocial movements. While there is an established body of scholarship on learning insocial movements (Welton, 1993; Cunningham, 1998; Crowther, Martin and Shaw,1999; Foley, 1999; Kilgore, 1999; Hoist, 2002) and a number of recent articles thattake the debate forward (Sandlin and Walther, 2009; Shukla, 2009; Scandrett etal., 2010), not many have investigated the possibility of inter-learning across socialmovements (International Affairs Directorate, 2009). This paper draws on an inves-tigation into HIV & AIDS and disability in three African countries: Uganda, Zambiaand South Africa (World Bank, 2010), two recent global reports on AIDS (UNAIDS,2010) and disability (WHO, 2011), as well as the literature on learning in new socialmovements.

The purpose of the paper is to explore the nature, constraints and possibilities ofcross-learning between two social movements. It begins by exploring the literatureon social movements and social movement learning, and then establishes the contextof HIV & AIDS and disability in sub-Saharan Africa. It outlines a theoretical approachto the topic. It sets out the methodology of the study and then explores cross learn-ing between the HIV & AIDS and disability movements under four thematic ques-tions which relate to purpose, principles, historical parallels, and learning strategies.I acknowledge my own positionality in this paper as a non-disabled, HIV-negative,white, male adult educator who, as an ally of the HIV & AIDS and disability socialmovements, recognises that many members of these movements do not have a choiceregarding their status. I acknowledge a great debt of learning to these movements andthe individual members who have been my teachers.

Defining and characterising new social movements

In order to avoid confusion in the discussion that follows, it is important to distin-guish between two partly overlapping senses of 'new' in the phrase 'new socialmovements'. The first sense, used in the international scholarship on social move-ments, distinguishes between the 'old' social movements such the labour movementthat were organised along class lines, and 'new' movements that organise on a rangeof cross-cutting issues such as ecology, world trade and peace. The second sense isparticular to South Africa: here 'old' social movements refer to those that engagedin the anti-apartheid struggle, whereas the 'new' social movements have emergedin the post-apartheid era around issues such as land, environment, housing and HIV& AIDS.

Martin (1999: 9) defines social movements as 'movements of people in civil societywhich cohere around issues and identities which they themselves define as signifi-cant'. These movements are 'popularly located' and often involve 'multiple organisa-tions and networks' (Ballard et. al. 2006: 3). Eyerman and Jamison (1991: 4) suggestthe educational dimensions of social movements by arguing that they are 'best con-ceived as temporary public spaces, as moments of collective creation that providesocieties with ideas, identities, and even ideals'.

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Social movements typically are characterised by a collective identity that arisesfrom a common cause which the movement is 'for', an antagonistic relation toan opposed group or interest which it is 'against', and a 'normative orientation'which reflects shared beliefs and values (Welton, 1993 cited in Martin, 1999: 9).Related to this, Tilly (2004: 3-4) identifies three elements of social movements:1. a campaign (a sustained, organised public effort making collective claims ontarget authorities), which links to the notion of 'collective identity'; 2. a socialmovement repertoire (combinations of forms of political action: public meetings,processions, vigils, rallies, demonstrations, petition drives, pamphleteering, state-ments to the media); and 3. participants' public representations of WUNC: wor-thiness, unity, numbers and commitment, which relate to Welton's notion of a'normative orientation'.

Within the African context, a new wave of scholarship on social movements inSouth Africa sees them as playing a crucial role in challenging aspects of the post-apartheid dispensation and/or the structural inequalities of its capitalist foundations(Ballard et a/., 2006; Gibson, 2006; Robins, 2008). These 'new' post-apartheid move-ments focus on contemporary social issues such as HIV & AIDS, housing and evic-tions, landlessness and xenophobia, and hold government to account for its brokenpromises on social delivery. What is absent from this South African scholarship is anexplicit discussion about learning in social movements.

Social movements also have a role in envisaging a new society. Melucci (1996: 1)sees them as 'disenchanted prophets... .They signal a deep transformation in the logicand the processes that guide complex societies'. This suggests that learning is a cru-cial dimension of social movements, both within social movements and as a relationbetween social movements and the society which they seek to transform. The socialmovement 'repertoire', which today may include new social media and web-basedcampaigns, are designed to educate society and change its orientation towards theissue at hand. It may include 'educating against' by raising awareness about social illsand their effects, as well 'educating for' a better social arrangement. This relates to thedual prophetic role of both 'denouncing' and announcing'. From this point of view,social movements may be understood as a means through ^vhich society learns aboutitself and its future. Some theorists argue that this learning cannot be initiated bygovernments and business with their entrenched interests in the status quo but mayarise from the popular political base that social movements generate (Gibson, 2006;Pithouse, 2011).

Learning in social movements

The scholarship on learning in new social movements has developed over the lasttwo decades in North America (Cunningham, 1998; Kilgore, 1999; Sandlin andWalther, 2009) and in Britain (Crowther, Martin and Shaw, 1999), with some keycontributions from other parts of the world such as Australia (Foley, 1999), LatinAmerica and India (Shukla, 2009), and comparative work across different contexts(Mayo, 2005; Scandrett etal, 2010). Cunningham (1998: 20) sees social movementsas, 'political sites for redistributing pow^er and devising more equitable social struc-tures', and as the 'social context of transformative learning.' Kilgore (1999) devel-ops the outlines of a theory of collective development and learning which seeks to

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understand 'how people and groups learn while engaged in collective social actionfor the purpose of defending and/or affirming a shared vision of social justice' andlearning processes as 'forces for social change' (Kilgore, 1999, p. 192). She criticisesexisting individualised theories of adult learning such as self-directed learning asnot neutral but rather 'directed self-directed learning' which serve the interest ofthe state and the market. In this regard, she parallels Cunningham's (1998) cri-tique of the individualistic and psychologistic emphasis of Mezirow's transforma-tive learning theory. Kilgore argues that the collective learning pertinent to socialmovements 'consists mainly of the construction of collective identity' (Kilgore,1999: 197). This is arguably a rather limited view of learning in social movementswhich, depending on the stage and context of the social movement concerned,might consist not only in learning to be (constructing identity) but also learningto know about the issues at hand and learning to do as participants in campaigns.A fourth dimension, learning to analyse and critique, might come into play throughcritical reflection on being, doing and knowing, and entail processes of conscien-tisation (Freiré, 1972). In practice these various dimensions of learning are inter-twined and mutually informing in what Eyerman and Jamison (1991) refer to as asocial movement's 'cognitive praxis'.

From a radical adult education perspective. Hoist (2002) is critical of the notionof 'cognitive praxis' because it does not pay sufficient attention to the politicaleconomy of social movements. While usefully drawing attention to processes oflearning within social movements, it downplays the centrality of 'political praxis':within social movements, knowledge is not an end in itself but a tool for the workof political praxis; in Hoist's words, 'we change people's minds in order that wemay use that knowledge to change the world' (Hoist, 2002: 83). Thus the trans-formative purpose of social movements is central to learning within the movementand to the learning which the movement, through its political praxis, instigates inthe wider society.

Given the growing bodies of scholarship in the new social movements and in socialmovement learning, what are the possibilities for a theoretical synthesis? Scandrettet al. (2010) attempt a synthesis of theory from the social movement literature andadult education, drawing specifically on Gelpi's ideas about lifelong education, toinsist on the dialectical relation between the 'structural conditions of socioeconomicinequality' that constitute a particular context and 'cognitive-cultural dimensioti' oflearning. Contradictions within society create opportunities for learning which areheightened when there is 'overt conflict'. They draw on case studies of environ-mental action in Scotland and India to characterise learning in social movements as'directional, negotiated and dialectical, constantly negotiating between lay and spe-cialist knowledge, local and global contexts, particular and general issues' (Scandrettet al, 2010: 19). These insights inform my approach to understanding cross-learningin this paper.

Adult education theorists have identified four major issues of the adult educa-tion literature on social learning: whether adult education can effect social change;the nature of the learning and education within social movements; the relationshipbetween old social movements (OSMs) and new social movements (NSMs), and therelative potential each holds for social change; and the overarching purpose for adulteducation which Hoist relates to the politics of social movements in civil society

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(Holst, 2002: 78; Sandlin and Walther, 2009, p.299). This article contributes to theliterature by exploring the nature, constraints and possibilities for learning acrossand between the HIV & AIDS and disability movements in sub-Saharan Africa. Indoing so, it acknowledges the importance of context in understanding social move-ment learning, and the dialectical relation between cognitive processes and materialconditions. With this in mind, the next two sections set out the context of HIV &AIDS and disability in sub-Saharan Africa, and in Uganda, Zambia and South Africain particular.

HIV & AIDS in sub Saharan AfricaIn 2009, sub-Saharan Africa had an estimated 22.5 million adults and children livingwith HIV out of a global total of 33.3 million (68 per cent) and 1.3 million AIDS-related deaths out of a global total of 1.8 million (72 per cent)(UNAIDS, 2010), withmore women than men living with HIV (60 per cent). UNAIDS (2010: 7) reports thatthe w orld 'has halted and begun to reverse the spread of HIV. The biggest epidem-ics in sub-Saharan Africa, including those in Zambia (980,000), Uganda (1.2 million)and South Africa (the largest epidemic in the world with an estimated 5.6 millionliving with HIV in 2009), have stabilised or begun to decline. Encouragingly, HIVincidence has declined significantly among young people and safer sex practices haveincreased. However, the sheer numbers of people living with HIV and dying of AIDSin sub-Saharan Africa mean that the epidemic continues to have an enormous socialand economic impact, and that issues of prevention, treatment and support remainconsiderable and resource-intensive challenges in these countries. As an example, theexistence of an estimated 14.6 million AIDS orphans has cross-cutting implicationsfor education, social welfare, health, and the nature and sustainability of the familystructure.

The three countries referred to in this paper, Uganda, Zambia and South Africa,have in common a history of British colonialism and struggles for independenceand/or liberation, a rich store of raw materials, and populations characterised bycultural and linguistic diversity, but are otherwise different in many ways. SouthAfrica has a population of approximately 50 million and is a middle-income coun-try, largely urbanised (62 per cent) and industrialised, with a GDP of $524 billionand a per capita GDP of $10,700. However, It is the most unequal of the threecountries with the richest 20 per cent of the population controlling 65 per centof household income while the poorest 40 per cent controls only 9 per cent. Halfthe population lives below the poverty line. Zambia has a population of nearly13 million, a GDP of $20.04 billion and a per capita GDP of $1,500. While thereis some industry, mainly mining, and 36 per cent of the population is urbanised,64 per cent lives below the poverty line. Uganda has a population of 34.5 millionand a fertility rate of 6.69 (the 2nd-highest in the world). It is the poorest of thethree countries, with a GDP of $42.15 billion but a per capita GDP of only $1,300.However, It is the least unequal with 35 per cent living below^ the poverty line(The World Bank, 2010; Central Intelligence Agency, 2011a, 2011b, 2011c; Unicef,2011a, 2011b, 2011c).

All three countries are deeply affected and afflicted by AIDS, and have developedorganised responses to the pandemic. Each has experienced a severe AIDS epidemic

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but within different time frames. They might be seen as epitomising the first, secondand third waves of the pandemic respectively as it proceeded south and east from itsepicentre in Central Africa (Iliffe, 2006). Uganda experienced a heterosexual AIDSepidemic, increasingly rapidly from the mid 1980s and peaking at around 30 per centamong pregnant women in 1992. Prevalence then declined and stabilised at around6.5 per cent in the early 2000s and has remained at this level to the present (UNAIDS,2010). Prevalence in Zambia, further south, peaked in 1999, stabilised at higher levelsof around 17 per cent and then declined to 13.5 per cent by 2009. South Africa, afteran initial epidemic (subtype B of the virus) mainly among men who had sex with menin the 1980s, was struck by a heterosexual epidemic (subtype C of the virus) in the1990s, reaching a peak of 30.2 per cent among pregnant women around 2005 and sta-bilising at around 178 per cent by 2009 (Gouws and Karim, 2005; World Bank, 2010;UNAIDS, 2010).

All three countries have made strides in providing antiretroviral treatment topeople living with AIDS and to reducing mother-to-child transmission of HIV in thelast few years as drugs have become more affordable and the medical infrastruc-ture in the countries has adjusted to cope v ith the mass distribution of antiretro-virals. The three countries have also made significant progress in addressing theneeds of people with disabilities regarding HIV & AIDS, although much remains tobe done.

Disability in sub-Saharan AfricaIn this article I adopt a 'people-first' approach to disability terminology, thus refer-ring to 'persons with disabilities' rather than 'disabled persons'. I use deaf torefer to the auditory impairment and 'Deaf to refer to the cultural community.According to the Convention on the Rights of Persons with Disabilities (UnitedNations, 2006, Article 1), such persons include 'those who have long-term physical,mental, intellectual or sensory impairments which in interaction with various bar-riers may hinder their full and effective participation in society on an equal basiswith others.' There are problems with estimating the global prevalence of disabil-ity because of the lack of consistency across countries in definitions of disabilityand in formulation of survey questions about disability. Drawing on various globalsurveys, the World Health Organisation (2011) estimates that there are around 785million (15.6 per cent) to 975 million (194 per cent) of the world's adults 15 yearsor older living with a disability, over a billion people including children. 110 to 190million of these people experienced severe disabilities or significant difficulties infunctioning.

The prevalence of disability in the three countries in this study is subject to thesame vagaries of definition as elsewhere and varies according to the measuring instru-ment used. According to the most recent national censuses, it was 5 per cent in SouthAfrica (Census 2001), 33 per cent in Uganda (2002 Census) and 2.7 per cent in Zambia(2000 Census) (World Bank 2010); however, the World Health Organisation's (2011)global estimates suggest that the national census figures probably represent severedisability rather than the wider ambit of significant difficulties in functioning. In allthree countries there is a relatively strong disability sector in civil society co-ordinatedby Disabled People South Africa (DPSA), the National Union of Disabled People of

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Uganda (NUDIPU) and Zambia Federation of the Disabled (ZAFOD) respectively, withrecognition of the rights of persons with disabilities inscribed in law, if not alwaysadhered to in practice.

In each country, persons with disabilities are represented on the respective nationalHIV & AIDS coordinating authority, after prolonged struggles of advocacy and lobby-ing, and have participated in the creation and/or revie^v of national frameworks. Thenational strategic plans of Uganda and South Africa explicitly recognise persons withdisabilities as a 'vulnerable or a 'high-risk' group.

Theoretical frameworkThis paper draws on two theoretical frames to facilitate an understanding of cross-learning between the disability and HIV & AIDS movements. First it understands socialmovements as collective learning spaces situated within, and engaging dynamicallywith, particular social contexts. They are characterised by a cognitive praxis of con-structing identities and knowledge through and for the political praxis of social trans-formation. The dimensions of this learning are multiple, shifting and mutually con-stitutive, but include learning to be (identity construction), learning to know^ aboutissues pertinent to the movement, learning to do (engaging in action through enactingrepertoires), learning to organise (finding appropriate ways of being together) andlearning to analyse and critique (developing critical consciousness). These dimen-sions inform inter-learning - the strategy of learning with and from other socialmovements. Social movement learning involves the notion of 'discursive encounter'(Scandrett etal., 2010), learning through an engagement with, and synthesis of knowl-edge from, different discourses in order to create 'really useful knowledge' relevantto social movement praxis.

A second frame draw s on theories of intersectionality which point to the func-tioning of intersecting identities such as race, class, gender and nationality, and theintersecting systems of power that they represent, in producing inequality. Collins(1998a, 1998b), for example, uses the concept to analyse black women's experi-ences of violence in the United States. She argues that 'any specific social locatiotiwhere such systems meet or intersect generates a distinctive group history or expe-rience' (Collins, 1998b: 27). For the purposes of this paper, intersectionality refersto the intersection between HIV & AIDS and disability, and how this informs par-ticular group experiences. This intersection is further informed by other systems ofpower such as race, gender and class. For example, an African w^orking class womanwith a disability who is HIV positive experiences multiple intersecting forms ofoppression.

MethodologyThe study adopted a multi-case study approach drawing on both interpretivist andcritical frameworks (Cohen et al., 2007; Willis, 2007). The units of analysis were thethree countries, Uganda, Zambia and South Africa, and the focus within each case wasthe situation regarding HIV & AIDS and disability. This multi-site case study designhad the advantage of providing insight into three different situations rather than oneand of offering a comparative dimension. This design thus provided some basis forexemplifying best practice and making recommendations which might be applied to

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Other situations. In this way it addresses the limitation of generalisability, while rec-ognising that each country situation has its own peculiarities regarding HIV & AIDSand disability.

The research team comprised myself as principal researcher together with co-researchers in each country recruited from the local disability movement. As anable-bodied academic from the University of KwaZulu-Natal w ith a background inadult education and social research, I have an involvement with local organisationsin the HIV/AIDS and disability sectors as a board member, volunteer and researcher.Given the limitations of my own experience and perspectives, it was crucial that Iwork with co-researchers from the disability movement in each country who haddirect experience of disability themselves. This would address the limitation of myown positionality regarding disability as well as provide local expertise from eachcountry.

The study made use of multiple methods of data collection including documentanalysis, interviews, focus groups and site visits. Documents analysed included pol-icy documents and legislation from various government departments, and nationalHIV & AIDS plans; empirical and theoretical studies on HIV & AIDS and/or disabilityin each country; biographical writing on the experiences of people living with HIV/AIDS and/or disability; 'grey literature' from the NGO sector, including pamphletsand brochures describing organisations and their programmes, newsletters, educa-tional materials, and reports on research studies commissioned by NGOs, often inpartnership with overseas funding agencies; national newspapers compiled duringthe week of data collection in each country and analysed for stories related to HIV/AIDS and disability; and electronic sources including the web pages of internationalagencies involved in issues of HIV/AIDS and disability, NGOs, national disabilityorganisations as well as those disability-specific organisations with web pages ineach country.

Thirty-one interviews were held across the three countries. Informants includedgovernment officials, members of national AIDS councils, medical personnel, activ-ists involved in the disability and HIV/AIDS sectors, and people living with HIV/AIDSand/or disabilities. Semi-structured interviews were conducted with key stakehcjldersin each country. The semi-structured format was chosen because it involved a set ofcommon questions that were used in each interview but also allowed for som<; flex-ibility in pursuing issues that arose in the course of the interview. Most intervie'wswere conducted in English, but in some cases they were conducted in a local languageor in Sign Language using an interpreter.

Thirteen focus groups (three in Uganda, six in Zambia and four in South Africa)were conducted w ith groups of people with disabilities, some of whom were livingwith HIV & AIDS. The variation in number of focus groups was due to time limitations,availability of participants and the slightly different configuration of data collection ineach country due to local circumstances. Focus groups drew on a range of disabilities,including specific focus groups for the blind or visually impaired, the deaf or hearingimpaired, and the physically challenged and their care-givers, with some focus groupsincluding a variety of disabilities. Each focus group was conducted either in a locallanguage or in a mixture of English and a local language, depending on the wishesof the participants, and were co-facilitated by myself and a local co-researcher, whoalso acted as an interpreter. The focus group facilitators were guided by a focus group

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schedule which identified four main themes for discussion: knowledge of HIV/AIDS;experiences of HIV/AIDS; policy and implementation; and agency of people with dis-abilities and their organisations.

A fourth source of data collection was site visits to various locations in eachcountry. These included a wheelchair workshop in Zambia, a clinic and a hospitalin Uganda, a clinic in Zambia, a Voluntary Counselling and Testing site for peoplewith disabilities in South Africa, schools for children with disabilities in Zambia andSouth Africa, and the premises of disabled people's organisations in all three coun-tries. Data collection at each site was informal and consisted of note-taking arisingfrom observations and informal conversations during the course of the site visit. Sitedata noted included wall posters, spatial arrangements, equipment and interactionsamong people at the site.

Data collected were both qualitative and quantitative. Qualitative data includedaccounts of experiences, perceptions and responses to the situation of HIV & AIDSand disability. Quantitative data consisted of statistics of HIV prevalence, incidence,mortality and orphanhood, as well as of disability prevalence, to the extent that thiswas available.

The objectives of the original study were 'to contribute to existing knowledgeon HIV & AIDS and disability; provide specific and feasible recommendations forintegrating support for persons with disabilities into national HIV & AIDS strategies;and develop a tool for mainstreaming disability into HIV & AIDS prevention andtreatment programs' (World Bank, 2010: 3). This paper draws on the study to focuson the adult learning dimensions the HIV & AIDS and disability movements and ofthe relation between them and includes some material that was not in the originalreport.

Cross-learning between the HIV & AIDS and disabilitymovements: Rationale, principles, exemplars, parallels andstrategiesWhy is cross-learning important for the HIV & AIDS andDisability movements?Although there is a lack of data on HIV infection rates among people with disabilities,they are recognised as vulnerable to HIV & AIDS infection for a number of reasons andregarded in several HIV & AIDS country strategies as a high risk group (South AfricanNational AIDS Council, 2007; Uganda AIDS Commission, 2007; UNAIDS, 2007; WorldHealth Organisation, 2011). Small-scale studies and anecdotal evidence from SouthAfrica, Uganda and Zambia indicated that the risk of HIV infection among people withdisabilities was as high as, or higher than the general population. They are often notreached by mainstream HIV & AIDS education campaigns and the media used in suchcampaigns does not always cater for blind and deaf people. They are more vulnerableto sexual abuse and exploitation, especially women with disabilities. This is accentu-ated by several prevailing myths regarding the sexuality of people with disabilities thatwere encountered in all three countries: that persons with disabilities are not sexuallyactive, resulting in difficulties accessing HIV & AIDS services and uncooperative atti-tudes among medical personnel at clinics; that persons with disabilities are HIV free,which makes women with disabilities sexual targets for men who think they cannotget infected; that sexual intercourse with a women or a child with a disability can cure

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AIDS, increasing their vulnerability to rape and AIDS infection. The existence of thesemyths points to the crucial and urgent role that both social movements have in educat-ing the wider society - the 'external' dimension of social movement learning - aboutHIV & AIDS and disability.

Poverty is a crucial factor as people with disabilities are disproportionatelyrepresented among the poor. They are often not able to afford or access educa-tion and health services. The intersection between disability, gender and povertyleads to some women with disabilities engaging in transactional sex to survive.This is exacerbated by the perception that women with disabilities are not fit formarriage, increasing their vulnerability to casual sex and multiple partners who'sneak away before daybreak' to avoid being publicly associated with a disabledwoman.

On the other hand, people living with AIDS experience disabling illnesses whichaffect their ability to function in society, and often require support from disabled peo-ple's organisations and rehabilitation professionals. From this, it is clear that peoplewith disabilities, as a high risk group, need to know about HIV & AIDS, and that peo-ple living with HIV & AIDS need to know about impairments that can result frotn thedisease.

Besides the intersecting health and risk factors that affect members, the move-ments share a concern around social stigma and discrimination. They campaign toremove negative perceptions and structural barriers which oppress their members.They also campaign for the active involvement of members in matters that affectthem, such as policy formulation, education and support. Because of the materialconditions that result in social inequalities, including the intersectionality of HIV& AIDS and disability with class, gender and race, the movements have a great dealin common regarding their agendas for just and equal recognition and treatment oftheir constituencies.

What principles should inform cross learning?

Solidarity of social movementsOne possible constraint on cross-learning is that social movements tend to mobilizearound single issues to the exclusion of others. This is a strength in that it makes fora powerful moblilising focus. However, it can also be a constraint in detracting fromissues of common concern and possibilities for joint engagement, for example, in theintersectionality of HIV & AIDS and disability, the exclusion from or discriminationwithin employment of 'non-normal' workers, and incidents of sexual violence whichare part of the experience of both people with disabilities and people living with HIV& AIDS, especially women.

Openness to learning front 'the other'Both persons with disabilities and persons living with HIV experience stigma andsocial discrimination. They are 'othered' by society. This kind of stigma is a potentialbarrier to collaboration between these groups as they too are not immune from stig-matising of the other and the fear of the 'double stigma' which an association of HIVand disability can eventuate. Differences in emphasis, for example the disability move-ment's distinction between 'disability' and 'illness', could open dialogue and sharpen

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understandings within both movements. Thus openness to the other is an importantprerequisite for cross-learning.

Flexibility of approaches to learningFlexibility that accommodates persons with different receptive abilities and couldinclude media that are accessible to a range of target groups. One of the key barri-ers to people with specific impairments is that they cannot access certain kinds ofeducational materials, for example, blind people require print materials in Braille andDeaf people require oral messages to be signed. A sensitivity to the receptive abili-ties of target audiences is crucial if HIV & AIDS messages are to reach persons withdisabilities.

Active involvement and participationFollowing the principles of Greater Involvement of People with HIV & AIDS (GIPA)embedded in the Paris AIDS Summit Declaration of 1994 (UNAIDS, 2007) and themotto of the disability movement, 'nothing about us without us', the active involve-ment of people living with HIV and people with disabilities counters stigma, dispelsmyths, provides positive role models and promotes inclusive public health. This cantake the form of their involvement as HIV counselors, peer educators, campaign plan-ners, representatives on policy fora, and so on.

What might cross-learning look like? - three learningexemplarsAn HIV & AIDS play for the DeafIn 2006 the Uganda National Association of the Deaf (UNAF) developed a stageplay called 'Stepping Stones' which communicated messages about HIV & AIDS insigned language. The play involved only Deaf actors and was staged at a school forthe deaf and a vocational training institute for the deaf in Kampala. It was attendedby hundreds of Deaf people from the city. It was then staged at the National Theatrein Kampala, before a full house, with a translator for hearing people in the audi-ence. This learning event exemplifies the principle of active participation by peoplewith disabilities in HIV & AIDS education, as well as the innovative use of a creativemedium to communicate with Deaf people. It indicates that people with disabilitiescan become agents in their own learning as well as in educating others about HIV&AIDS.

People with disabilities as HIV counsellorsIn 2007, the KwaZulu-Natal Deaf Association (KDA), based in Durban, South Africa,determined that Deaf people were not receiving necessary HIV & AIDS counsel-ling, testing, and treatment because of the lack of sign language interpreters. KDAselected and trained Deaf people as counsellors. The training had to be very visualand address misconceptions among the Deaf about the meaning of 'positive' and'negative' in relation to HIV. This project succeeded in drawing a number of Deafpeople who had not been tested before. The project also pointed the way to 'doublemainstreaming': first, of HIV & AIDS in the work of disability organisations throughthe use of the organisation's premises as a VCT site and of its development workers

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as counsellors; and second, of disability into the HIV & AIDS sector by raising thedisability awareness of AIDS organisations and service providers and training main-stream counsellors in sign language. Through this kind of relationship, both sidesare able to contribute their strengths to the other for the ultimate benefit of personswith disabilities.

Co-ordination as cross-learningUgandan Disabled People's Organisations (DPOs) formed the Disability StakeholdersHIV & AIDS Committee (DSHAC) in January 2005. It comprises 14 DPOs and oneAIDS stakeholder. The AIDS Support Organisation. DSHAC acted as the StandingCommittee for the disability fraternity on issues relating to HIV & AIDS and plays asignificant role in co-ordinating the disability sector around AIDS issues. Activitieshave included organising participation of disability stakeholders in the National AIDSConference, participating in World AIDS Day activities with other AIDS stakeholders,conducting a breakfast meeting and other meetings with AIDS stakeholders to raisetheir awareness of the marginalisation of people with disabilities in AIDS programmesand strengthen links between the two sectors, developing a successful joint proposalfor an AIDS project, being invited to participate in the development of the NationalHIV & AIDS Strategic Plan and developing a Disability National HIV & AIDS StrategicPlan. Noteworthy about DSHAC's efforts are its success in bridging the gap betweenthe disability and AIDS sectors, which are often ignorant of each other, and creatingstrong working relations with the Uganda AIDS Commission and key AIDS stakehold-ers. Another outstanding achievement is its creation of unity among disability organi-sations to the extent of jointly raising funds for projects on a much larger scale thana single organisation could manage. (Disability Stakeholders HIV & AIDS Committee,undated). Here the principles of solidarity within and across social movements atidopenness to the other are illustrated.

What does the history of the HIV & AIDS and disability movementsindicate about possibilities for cross-learning?An examination of the milestones in the HIV & AIDS and Disability struggles suggestsa number of possible areas for engagement between the two movements. Figure 1below attempts to map some of these key milestones w ithin the AIDS and disabilitymovements, and to indicate points of contact. The figure does not represent an actualhistorical progression in any one country but is rather a composite of achievementsand key challenges arising from the three countries studied. Until recently, the AIDSand Disability movements have run largely in parallel without much cross-cutting dia-logue and engagement. There is ignorance in both sectors about the other, as well asreticence generated by prevailing social stigma. On the other hand, there are opportu-nities for engagement and reciprocal learning that can benefit both movements in theresponse to AIDS. The discussion below elaborates on each section of the diagram,referring to the boxed letters and associated milestones.

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Disability struggle milestones

Establishment of coordinating civilsociety organisations by and forpeople with disabilities

Legislation outlawing discriminationagainst people with disabilities

Inclusion of people with disahilitiesin VCT and prevention programmes

Inclusion of people with disabilitieson national AIDS structures

Recognition in strategic plans ofpeople with disabilities as a high-riskgroup for HIV/AIDS

Development of sector-specific AIDSplans by and for people withdisabilities

People with disabilities with HIVacces.s treatment and care

Representation of people withdisabilities at all levels of govt

Voluntary disclosure of HIV statusby people with disabilities

Involvement of people with disabilitiesin AIDS programmes as serviceproviders and decision makers.

Ï

AIDS struggle milestones

Establishment of coordinating civilsociety organisations by and forpeople living with HIV/AIDS

Legislation outlawing discriminationagainst people with HIV/AIDS

Mass participation in VCT

Development of prevention,treatment and care programmes

Establishment of national AIDSstructure representing all sectors

Development of national HIV/AIDSstrategic plan

Provision of PMTCT at hospitalsand clinics

Provision of affordable ART

Voluntary disclosure of HIV statusincluding by high-profile peopleliving with HIV.

Ratification by courts of rights ofpeople living with HIV to treatmentand employment.

K

Establishment of coordinating structures of HIV/AIDS and disability movements

±Inclusion of people disabled through AIDS in DPOs and people with disabilitieswho have HIV/AIDS in HIV/AIDS groups

±Countering stigma against disability and HIV/AIDS

Developing social welfare safety nets

Figure 1. Mapping the AIDS and Disability Struggles with Possibilities for Engagement

Cross-learning 229

Figure 1. Continued

A. The mobilisation and organisation of membership are crucial within both the disability andHIV & AIDS movements for creating a positive identity, countering stigma, giving peoplehope and generating momentum for change through advocacy and lobbying. In all threecountries, civil society organisations such as DPSA, ZAFOD and NUDIPU in the disabilityfield, and the Treatment Action Campaign (TAC) in South Africa and The AIDS Support Or-ganisation (TASO) in Uganda in HIV & AIDS, have played a pivotal role in making gains fortheir respective constituencies. In many countries, the disability movement preceded theAIDS movement and can thus contribute, as the arrow indicates, to its development where itis not yet established. The two movements, with their rights-basis and identity-focus, havea lot to share in the development of collective identity which is one key to collective learningin social movements (Kilgore, 1999).

B. In all three countries, the rights of people with disabilities are protected in the law against un-fair discrimination. This can serve as a model for legislation protecting people living with HIV.

C. and D. The gains that people living with HIV and their organisations have made in accessingVCT, information and education need to be extended to people with disabilities.

D. All three countries have a national AIDS structure which is broadly representative of all rele-vant sectors. People with disabilities have lobbied for and achieved representation on thesestructures.

E. This is vital for the participation of people with disabilities in the development, monitoring andevaluation of National Plans around AIDS and for ensuring that people with disabilities arespecifically catered for in these plans. The development of sector-specific plans by the dis-ability movement can serve to concretise the broader National Plan and, where this has notyet been developed, contribute to the inclusion of people with disabilities in such a plan.

F. The AIDS nnovements in South Africa, Uganda and Zambia, and the governments of thosecountries, have made progress in rolling out PMTCT and ARV treatment to people livingwith HIV, although there are many people who have not yet been reached. Among theseare people with disabilities, and special efforts are required to include them in treatmentprogrammes.

G. Voluntary disclosure of HIV status, particularly by social role nnodels, plays an important rolein creating public awareness of the pandemic, generating openness and countering stigma.This is still rare annong people in positions of power and influence, and extrennely rare amongpeople with disabilities because of the fear of 'double stigma' and lack of support. The two-way arrow here indicates that disclosure has the potential to benefit both the HIV & AIDS anddisability movements in the struggle against the disease and public perceptions of it.

H. The use of the courts to contest discrimination in the workplace against people living with HIVand to pursue the right to affordable treatment has been vital in South Africa. This study indi-cates that there is much work still to be done in making the legal system accessible to peoplewith disabilities and in successfully prosecuting those who sexually abuse people with disabili-ties. There could thus be a fruitful discussion between the AIDS and Disability nnovements aboutthe use of the courts to promote and protect rights, and to create wider social awareness.

I. The direct involvement of people with disabilities as peer educators, counsellors and deci-sion-makers is a key to including people with disabilities in AIDS programmes.

J. The final three boxes indicate cross-cutting priorities that apply to both the AIDS and disa-bility movements. Co-ordinating structures that bring representatives of the two movementstogether can create mutual understanding and opportunities for joint action from a nnutuallystrengthened position. People living with HIV who become disabled through the effects ofAIDS can benefit from becoming part of disabled people's organisations. Similarly, peoplewith disabilities who are living with HIV can benefit from inclusion in AIDS support groups.There are opportunities for cross-cutting membership which have not yet been developed.Both movements have a stake In countering the social stigma that 'others' those who aredifferent, and their efforts in this regard should be inclusive and mutually reinforcing. Finally,the development of welfare safety nets to protect both people with disabilities and peopleliving with HIV, can also serve as a point of nnutual engagement.

230 Peter Rule

What strategies can he used to promote cross-learning?Scandrett et al. (2010) make a useful distinction among learning at micro (individual,interactive), meso (frame, minimum thematic universe) and macro (culture-ideol-ogy) levels. This section suggests some strategies for cross-learning at these differentlevels.

Micro-level: inclusion of people with disabilities in HIV fora and campaigns; inclu-sion of people living with HIV who experience disability in disabled people's organi-sations and support groups. Focus on HIV & AIDS within disabled people's organisa-tions though guest speakers, information sessions, discussions, sharing of experiencesand ideas. For example, a panel discussion drawing on people with disabilities andpeople living with HIV in the Pietermaritzburg, South Africa, enabled participantsto consider issues and engage with people that they had not previously encountered(Rule, 2007). This can focus on issues of prevention, treatment, disclosure and posi-tive living, as well as on recent development around treatment as prevention usinghighly active antiretroviral therapy (HAART) together with other measures (Mayerand Venkatesh, 2010).

Meso-Level: this entails the engagement of frames of understanding of peoplewith disabilities and people living with HIV & AIDS. It can arise from micro-levellearning. For example, through campaigning, people with disabilities might cometo understand disability as a social construction to be contested rather than an indi-vidual deficit to be suffered (Oliver, 1996), and through their involvement in supportgroups people living w ith HIV might come to understand the possibilities of livingactively and positively with the disease (Robins, 2008). This level of learning can leadto perspective transformation (Mezirow, 1991) and conscientisation (Freiré, 1972) inrelation to the structures of oppression in society and the possibilities for agency. It iscrucial in developing critical consciousness through processes of reflection, analysisand critique (Newman, 2006).

Macro-level: this manifests in national and international conferences and dialogueto promote understanding of the relation between HIV & AIDS and disability and togenerate plans for further action. It also involves engagement with the corporate cul-tures and ideologies of organisations such as UNAIDS, the World Health Organisationand the World Bank. For example the Africa Campaign on Disability and HIV & AIDS,which disseminates know ledge exchange through conferences, publications and itswebsite, played a key role in engaging UNAIDS in the development of its Policy Briefon disability and HIV (UNAIDS, 2009).

Conclusion

Cross-learning between the HIV & AIDS and disability movements faces barriers inrelation to the prevailing social stigma associated with AIDS and disability and thesingle-issue focus of social movements based on identity. However, this kind of learn-ing has the potential to strengthen both movements at a number of levels. Individualswho experience the intersectionality of HIV & AIDS and disability can find hope andsupport in micro-levels activities such as accessible learning and peer counseling. Ata meso-level, organisations can benefit from a 'double-mainstreaming' of AIDS anddisability in ways that transform their own and others' frames of understanding andopen the way to critical reflection and action. And at a macro-level, collaboration can

Cross-learning 231

Strengthen efforts to counter structures and ideologies that marginalise and discrimi-nate against 'the other'. Perhaps most importantly, cross-learning as a force for socialchange can help to release the energies of people with disabilities and people livingwith HIV as active participants in constructing their own identities and transfortningsociety.

AcknowledgementsThis article is based on work commissioned by The World Bank on HIV/AIDS andDisability. Any opinion, findings and conclusions or recommendations expressed inthe article are those of the author. The World Bank, therefore, does not accept: anyliability in regard thereto.

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