Disability-in-the-Global-South.Place-of-DisabilityCritical-Intersections.pdf

International Perspectives on Social Policy,
Administration, and Practice
Shaun Grech
Karen Soldatic Editors
Disabilityin
the Global
South
The Critical Handbook

International Perspectives on Social Policy,
Administration, and Practice
More information about this series at http://www.springer.com/series/7

Shaun Grech • Karen Soldatic
Editors
Disability in the Global
South
The Critical Handbook

International Perspectives on Social Policy, Administration, and Practice
ISBN 978-3-319-42486-6 ISBN 978-3-319-42488-0 (eBook)
DOI 10.1007/978-3-319-42488-0
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Editors
Shaun Grech
Centre for Global Disability Research
The Critical Institute
Attard, Malta
Karen Soldatic
Institute for Culture and Society
Western Sydney University
NSW, Australia

69
S. Grech, K. Soldatic (eds.), Disability in the Global South,
International Perspectives on Social Policy, Administration, and Practice,
DOI 10.1007/978-3-319-42488-0_5
Chapter 5
The Place of Disability
Dan Goodley and Leslie Swartz
Introduction
To think of disability inevitably conjures up thoughts of age, class, gender, sexual-
ity, ethnicity, race, indigeneity and nationality. Such intersectional considerations
are at the heart of what has been termed critical disability studies (Goodley 2011;
Shakespeare 2013), where disability links together other identities as a moment of
reflection that Lenny Davis (2002, 2006) coins as dismodernism. While critical dis-
ability studies might start with disability, they never end with it: remaining ever
vigilant of ontological and theoretical complexity, as well as complexity in terms of
political, cultural, social and material issues (Goodley 2011). Such complexity is
extended further when one thinks about the place of disability: where and when dis-
ability appears. Disability emerges geopolitically (in terms of location), temporally
(by way of differing historical moments) and epistemologically (considering, for
example, disability’s varied disciplinary dwellings). We are interested in those var-
ied terrains where we might map and locate disability but this journey, perhaps
inevitably, involves much crossing of national and theoretical borders. In this chap-
ter we will consider a number of ways in which we might place disability, including
a global north perspective, a supranational discourse and a global South response.1
In our geo-theoretical journey we will consider the troubles associated with
1
We have deliberately chosen ‘global north’ and ‘global South’ to unsettle the dominance of the
former position and augment perspectives emerging from latter contexts.
D. Goodley (*)
University of Sheffield, Sheffield, UK
e-mail: d.goodley@shef.ac.uk
L. Swartz
Stellenbosch University, Stellenbosch, South Africa

70
conceptualising disability. We conclude by thinking through the complexities borne
out of this recognition of the local and global placing of disability.
A Global North Perspective on Disability
A well-told story about disability studies is of the field’s emergence in a transdisci-
plinary space in North America and Western Europe as a dynamic community of
practice that brought together theorists, practitioners, activists and artists who
shared an antipathy towards the dominant conceptualisations of disability. Two cul-
tural extremes come to mind when one thinks of dominant hegemonies around dis-
ability: disability as immorality; and disability as medical specimen (Snyder and
Mitchell 2001: 380). Moral positions, especially from Judeo-Christian traditions,
have viewed disability as a sin (a punishment from God forgiven through divine
intervention). Medical perspectives have dominated the discursive landscape, fram-
ing disability as pathology (a physical, sensory or cognitive failing that tragically
‘handicaps’ those ‘afflicted’). Following Snyder and Mitchell (2001: 379), moral
positions have included disability as a reflection of God’s dismay (Ancient Greece),
as evidence of an intimacy with God (Medieval Europe) and a divine response to
parental wrongdoing (Renaissance period). Religious views of disability have been
denounced by numerous western disability studies scholars for their inherent ten-
dencies for pathologisation (Goodley 2011). The medical model, meanwhile, has
been conceptualised as a perspective originating in western modernity (Christensen
1996; Sachs 2008). Where the church benefits from the moral position then the para/
medical professions benefit from the medical model. The eugenics movement of the
early 20th century in Western Europe and North America, which accompanied the
rise in the status of science and its related practices, colonialism and capitalism,
located the burden of disability in the unproductive flawed, weak and lacking indi-
vidual (Fernald 1912). Following Naidoo (2009), medicine has conceptualised dis-
ability as a distinct pathology (a pathogenic view) rather than part of a continuum
of dis/ease (a salutogenic position) or in terms of capacities and strengths (a forti-
genic approach). The medical model encourages the disabled entity to be framed in
terms of assisted suicide, euthanasia and antenatal termination. The human worth of
disabled people is rendered highly questionable through the growing use of repro-
ductive technologies. And as medicine intervenes so disabled bodies are made
increasingly undesirable.
For the first British professor of disability studies, Mike Oliver (1990), moral and
medical approaches each promote an individual model of disability, reducing the
problem of disability to the flawed tragedy of individual personhood treatable
through the interventions of charities and healthcare professionals. Simi Linton
(1998) and Mark Sherry (2006) suggest that this individual discourse creates a num-
ber of ‘fault lines’: disability is cast as an essentialist condition (with organic aeti-
ologies); disabled people are treated as objects rather than authors of their own
lives; ‘person fixing’ rather than ‘context changing’ interventions are preferred; the
D. Goodley and L. Swartz

71
power of health and social care professionals is increased and the tyranny of nor-
mality is accentuated. Disabled people are infantilised, constructed as helpless and
viewed as asexual (McRuer and Wilkerson 2003: 10). For Paul Abberley (1987:
18), presenting the disadvantage of disability as the consequence of a ‘naturalised
impairment’ or ‘biological flaw’ lets exclusionary society off the hook.
Global north disability studies seeks to dislodge disability from its medicalised
origins and from strains of thinking which associate disability with moral failure
(Herndon 2002: 122). ‘Disability’ is not natural. Disability is socially constructed.
In Britain, the Union of the Physically Impaired Against Segregation, devised the
following definitions to acknowledge the role of society and the presence of bodily
difference:
Impairment—lacking part of or all of a limb, or having a defective limb organism or mecha-
nism of the body.
Disability—the disadvantage or restriction of activity caused by a contemporary social
organisation which takes no account of people who have physical impairments (and or
learning difficulties) and thus excludes them from mainstream social activities [italic text
added by the authors]. (UPIAS 1976: 3–4)
These definitions acknowledge the body (impairment) but politicise the body’s
engagement with the social world (disability). Impairment as a form of embodied
difference is defined ‘often within a medical context and disability is the negative
social reaction to those differences’(Sherry 2007: 10). Disabled people are just that:
people disabled by contemporary society. This forms the heart of what came to be
termed the social model of disability (Oliver 1990, 1996; Shakespeare 1993; Hughes
and Paterson 1997). As Goodley (2011) observes, disability is recognised as a phe-
nomenon of cultural, political and socio-economic conditions (Abberley 1987), dis-
ablism recognises the psychological, cultural and structural crimes against disabled
people (Thomas 2007) and disablement captures the consequences of disablism
(Oliver 1990). At the centre of these different concepts is the UPIAS split of body
(impairment) from society (disability).
A strong trope within global north disability studies theory and history pertains
to the analysis of the relationship between disability, labour and capitalism. Vic
Finkelstein (1981) famously argues that while early capitalism (phase 1) offered
some inclusion in the community through disabled people’s involvement in small-
scale cottage industries, the rapid growth of manufacturing and machinery sup-
planted their contribution to a growing labour force. Phase 2 saw manufacturing
industries such as coal and steel expanding. Mass migration from rural to urban
areas increased exponentially. Industrialisation deskilled and impoverished dis-
abled people who had previously worked in agrarian communities (Slee 1996: 99).
Many disabled people, deemed incapable of offering labour, quickly joined the
unemployed in the cities. Industrialisation demanded fit workers. Factories exposed
uncompetitive workers. Institutionalisation provided a means of controlling non-
viable workers and, in contrast, developed new forms of labour for those working
in the factories (Barnes et al. 1999: 14–20). Phase 3, late capitalism, offers more
opportunities for consumer groups and disabled people’s organisations to challenge
their exclusion from mainstream life. That said, while contemporary post-Fordist
5 The Place of Disability

72
techno-driven economies might include some disabled workers, others might be
further ostracised by this move from manufacturing to knowledge production.
More recently, the World Report on Disability (WHO and World Bank 2011) has
argued that choices between the medical and the social model are somewhat spuri-
ous. Depending on the International Classification of Functioning (ICF) approach
(World Health Organization 2007), the World Health Organization and World Bank
have presented disability as both a medical and a social issue, as other chapters in
this volume discuss (see, for example, Eide and Loeb 2016). What tends to be
obscured in these ‘global’documents, however, is that global north disability studies
and their products, as promoted by bodies such as the WHO and the World Bank,
tend to be emblematic of the cultural contexts from which the theories emerged.
These theories come from the global north. Questions must be raised about the speci-
ficities and particularities of global north analyses that, if left unchecked (and worse,
exported to other parts of the globe), suffer from a lack of critical evaluation.
First, global north analyses often portray a distinctive contrast between self and
other, the individual and their community, and body and society. To follow the criti-
cal psychologist Edward Sampson, the distinctions of body/mind and individual/
society are deeply entrenched within the Eurocentric modernist psyche and mind-
set. For Ken Gergen,
modernism is typically traced to that historical period in which culture moved from the so-
called Dark Ages of medievalism (characterized by an unquestioning adherence to totalitar-
ian royal or religious decree) to the Enlightenment (promising the bounded and sacred
sanctuary of the mind, autonomous capacities and the beginnings of systematic human
science). (Gergen 2001: 803–804)
The drawing of a boundary between nature and culture is distinctive to moder-
nity (Tremain 2000). The individual we have come to cherish is a ‘post-Cartesian
entrenchment of the notion that the self-possessive inviolability of the bounded
body grounds the autonomous subject’ (Shildrick 2007: 225). For Sampson (1985:
1204) ‘to centre order within the persona is a peculiarly Western worldview’that the
individual will be the main architect of order and coherence. We associate a singular
individual with control, connect many with chaos and are led to view the collective
world as potentially threatening and disruptive. In a later paper, Sampson (1993)
suggests that rich-income nations’ conception of human nature is primarily a white
male of western ‘United Statesian’ character! Global north disability studies risks
importing this peculiar modern man into its conception of the (impaired) individual.
Ironically, the UPIAS (1976) definition actually maintains a rather medicalising
conception of disability through its use of the language of individual lack. Moreover,
global north rejections of religious disability discourse risk ignoring how faith com-
munities replenish wider communities in ways that might be more inclusive than
first thought (Valentine and Sporton 2009).
Second, global north scholars’ understandable emphasis on labour and capital-
ism (especially in the deeply class-divided contexts of nations such as Britain)
emphasise capitalist economic forces associated with disablism. Disablement for
many British disability activists is most evident in terms of labour participation,
where disabled adults continue to be under-represented across the private and public

73
sectors and actively discouraged from entering certain workplaces. That said, other
forms of cultural production, community participation and involvement, and psy-
chological and relational networks risk being obscured by centralising work and the
economy.
Third, global north perspectives—especially those centred around the social
model—have been criticised for ignoring the centrality of impairment to the lives
of some disabled people (Shakespeare 2013), sidelining the importance of cul-
tural and discursive factors in the framing of the meaning of disability (Tremain
2005) and failing to connect with the politics of other transformative perspectives,
including critical race, queer and feminist approaches (Miles 2000; Sherry 2007;
Thomas 2007).2
While we do not have the space here to develop these critiques,
what we are starting to witness in this brief expose of global north discourse are
the dangers of generalising from the particular to the global. Critical disability
studies seeks to address these limitations and the present absence of certain
voices.
A Supranational Discourse of Disability
How we conceptualise disability will depend heavily on the kinds of place within
which disability emerges. Let us think, then, pan-nationally (that is, across nation
states). What attempts have been made to conceptualise disability across the world?
The 2011 World Report on Disability is one example of an attempt to paint a com-
prehensive picture of the global position of disabled people. The World Report con-
cludes that there are over one billion disabled people in the world, of whom nearly
‘200 million experience considerable difficulties in functioning’. This estimate sug-
gests 15 per cent of the world’s population live with an impairment. The theoretical
framework on disability adopted by the authors of the report (theoretically repre-
senting nations from around the globe) is the ICF, a bio-psycho-social model which
aims to
represent a workable compromise between medical and social models. Disability is the
umbrella term for impairments, activity limitations and participation restrictions, referring
to the negative aspects of the interaction between an individual (with a health condition)
and that individual’s contextual factors (environmental and personal factors). (WHO and
World Bank 2011: 3).
How then does disability emerge from this document? As Goodley has argued
recently, the World Report works as an administrative text, targeting an interna-
tional audience, saying many important things about the global positioning of dis-
abled people:
It is a text that will undoubtedly be used to bolster human rights programmes, inform anti-
discriminatory legislation, and justify public funding of initiatives such as inclusive educa-
2
For an overview of some of the key debates in disability studies see Goodley 2011.

74
tion, accessible workplaces and anti-discriminatory cultural industries. This is an important
report on an exigent matter. A lot of space is given to countries outside of Western Europe
and North America. Emphasis is placed on environmental factors—such as participation
restrictions—that can substantively reduce the life opportunities of people living with
impairments. Key recommendations include the promotion of inclusive schools, stressing
the importance of disability equality awareness and meaningfully drawing on the expertise
of disabled people as consultants and co-workers. (Goodley 2014: 15–16)
Following Goodley (2014), disability is conceptualised in the World Report as
a problematic phenomenon meriting an urgent response on the part of govern-
ments and their citizens. Simultaneously, by referencing the United Nations
Convention on the Rights of Persons with Disabilities (CRPD), the World Report
is a pragmatic document shared across the world by numerous policymakers and
activists to contest the conditions of disablism. One recent observer celebrated the
report’s mass appeal:
to inform governments of countries about the importance of disability, analyze scientific
information, and provide recommendations for action at the national and international lev-
els. The report successfully illustrates a great need for improved data, policies, and pro-
grams, while describing promising practices that can inform policy makers in addressing
these needs. This report is highly recommended reading for anyone interested in a global
view on disability and should be required reading for any students in disability and public
health. (Krahn 2011: 141)
The World Report marks an opportunity for ‘disabled people’ in and across
nation states ‘to use its recommendations to bolster their collective struggle for a
fairer and equitable society’(Oliver and Barnes 2012: 57). The report has inevitably
received criticism and Goodley gives one example:
Oliver and Barnes (2012) give a typically Anglo-centric social model commen-
tary, pivoting around three points of contention:
i. The World Report authors’ owning of disability as a dynamic and complex rela-
tionship between an impaired person and the social world is something disabil-
ity studies and organisations of disabled people have been saying for years.
ii. The report’s emphasis on more systematic, objective and scientific methodolo-
gies for assessing disability risk invalidating disability research enacted in a
politicised and more subjective manner.
iii. The report cannot be viewed as an objective document; ‘we must clearly recog-
nise that all social research is political and, perhaps more importantly, consider
the political role of the WHO and the World Bank in sponsoring the Report.
Both are structurally positioned to facilitate the ongoing development of global
capitalism, which is based on the twin evils of domination and exploitation’
(Oliver and Barnes 2012: 579) (Goodley 2014: 17).
Instead of rejecting the World Report one might, instead, productively read it as
a cultural text. We might ask, where does the World Report place disability? As a
supranational document—written with the aim to speak across geopolitical bound-
aries—the text toys with the possibilities of a universal response to disability. While

75
the authors do acknowledge the culturally relative nature of disability’s categorisa-
tion, the report, nevertheless, has to take disability out of a locality and place it in a
register of a more global appeal. Yet, like all texts, the report ‘has a constitutive
character to it: disability is constructed and created through the workings of the text’
(Goodley 2014: 17). So what does the report say and make of disability?
First, we should recognise that the World Report appears to draw on and develop
an interactionist model of disability. This approach is associated with what some
observers have termed the Nordic relational model of disability. Such a perspective
approaches ‘the study of disability with three main assumptions: (1) disability is a
person–environment mis/match; (2) disability is situational or contextual; and (3)
disability is relative’ (Tøssebro 2004; Traustadóttir 2004). For Fiona Kumari
Campbell (2009: 95), a relational model should be acknowledged ‘for the ways in
which it recognises the interactivity of impairment and disabling modes of socio-
economic organisation’ (Goodley 2011: 16). To more sceptical observers, an inter-
actionist approach is in danger of smuggling in an unproblematic concept of
impairment which leaves the body/mind split under-theorised and therefore uncon-
tested (Goodley 2014).
Second, while the World Report seeks universal application, critical disability
studies analyses that are emerging from the global South (and recognised in this
book) urge us to incorporate historical, cultural, economic and political specificities
of disability in different parts of the globe. Grech (2012: 59) makes the convincing
argument that disability studies has not served the subject of majority world dis-
ability studies because ‘it is dominated by white, Western, middle class academics
engaging in debate imbued with ideological, theoretical, cultural and historical
assumptions of Western urban post-industrialised societies’. ‘Despite Western foun-
dations’, Grech continues:
disability studies has reached hegemonic status in the disability and majority world debate
as the exportation of its ideas (notably the social model of disability) from North to South
continues unabated. This seems to be legitimised by numerous factors: the marginalisation/
exclusion of disability in the development sector; the monopolisation of most things dis-
ability by the Western disability studies; and the assumption that disability theories and
writings from the West are transferable across the globe with few or no modifications.
(Grech 2012: 59)
As Goodley writes:
the work of Anita Ghai (2006), Shaun Grech (2011, 2012), Karen Soldatic and Helen
Meekosha (2012) (to name but a few) ‘remind us, through reference to India, Guatemala
and Australia, that different kinds of colonial histories, the suffering of indigenous groups
and acute conditions of poverty will lead to different understandings of disablism’. A uni-
versalist approach risks whitewashing over the specifics of disability. Critical disability
studies must seek to reinsert this cultural sensitivity. (Goodley 2014: 17)
In this regard, the collection edited by Ingstad and Whyte (2007) and the work of
Devlieger (2005) have been key to developing cultural understandings of disability.
As we show in the section which follows, however, even ‘cultural’ understandings
present questions for the global South’s response to these formulations.

76
A Global Southern Response
The Problem
Given the power of discourses developed in the global north and their export to the
South, it becomes difficult to know what a response from the global South is, or
should be. Part of the problem here is not only that disability is often seen in essen-
tialised terms, as we have suggested earlier, but also that the difference between the
north and the South, the global and the indigenous, is often cast as an essential and
immutable difference. Colonists visiting the South had an interest in portraying
local practices as essentially different from those in the north. This is a complex
matter that we cannot give full attention to here, but the portrayal of the ‘savage’ as
essentially different from the ‘civilised’ colonist from the north provided an ideo-
logical and apparently ‘scientific’ reason and justification for inferior treatment of
the ‘uncivilised’ (Swartz 1998). If, for example, whole races of people are not fully
human, or if they lack the intellectual capacity to make rational choices, then it fol-
lows that managing these groups with what would be seen as brutality for others,
becomes necessary and even humane. Similarly, if primitive people have immutable
belief systems, which are at odds with modern science, then it becomes a matter of
cultural respect (rather than neglect) not to offer them what science has found to be
the best forms of help. In apartheid South Africa, for example, it was commonly
argued that the reason black people did not have equal access to mental health care
was that they had cultural beliefs which made such care irrelevant and useless to
them (Swartz 1998). A key flaw in this convenient line of essentialist reasoning is
that in all cases it was those with power—the colonists and the masters of the apart-
heid system, for example—who decided for people what they did and did not
believe and want. It was also possible at the stroke of a bureaucratic pen to exclude
groups of people from care. At one time in South Africa, for example, by definition,
only white people could be classified (using the term of the time) as ‘mentally
retarded’ (Lea and Foster 1990).
In the context of this essentialising both of disability and of racial difference, as
part of the broader project of what Dubow (1995) has termed ‘scientific racism’, it
is hardly surprising that there are two contrasting images of disability and its mani-
festations in the global South, images which correspond uncomfortably closely to
two images of the ‘primitive’ identified by Lucas and Barrett (1995). These authors
describe ‘primitivism’ as a way western medicine describes the ‘other’ and, by
implication and inversion, itself (see Said 1978). On the one hand, the ‘primitive’ is
presented for western consumption as a ‘Barbarian’, as these authors put it—a dan-
gerous force, out of control and a danger to order and civilisation. The obverse of
the Barbarian is the ‘Arcadian’ view of natives happily living a prelapsarian exis-
tence, with civilisation presented as a danger to this natural state of being. What is
interesting about this Barbarian/Arcadian split is that in the field of disability, it can
occur in a number of permutations. Somewhat schematically, we can distinguish
between views of disabled people themselves as either Barbaric or Arcadian on the

77
one hand, and views of how societies in the South deal with disability and differ-
ence as either oppressive and cruel (Barbarian) or tolerant and inclusive (Arcadian).
Well-placed and appropriate concern for the welfare of disabled people in the global
South can rapidly lead to generalisations not necessarily based on evidence. For
example, Bayat (2015) raises important concerns about the abuse and killing of
disabled children in West Africa, but in the absence of research data claims that it is
‘not unreasonable to speculate that both killing and abuse of this vulnerable popula-
tion is more widespread than reported’ (Bayat 2015: 2). This kind of statement is
useful rhetorically for Bayat’s argument but not necessary for it—any case of abuse
or killing is sufficient for concern—and it contributes to an overall typification of
barbaric practices.
The Question of Ubuntu
Disability studies scholars and activists living and working in the global South have
a complicated balancing act to perform. First, it is important that they speak out
about and fight exclusion, oppression and abuse. No amount of cultural relativism
can condone the abuse or even killing of people with albinism in Africa, for exam-
ple (Hong et al. 2006). Second, because of dependence on funding from the north,
it is becoming increasingly necessary to speak the language of the social model and
the CRPD (Heap et al. 2009; Meyers 2014; Jonas et al. 2015). Third, and crucially,
there is an impetus to rescue images of disability and the treatment of disabled
people in the global South from abjection. The complexity of this balancing act can
be seen in the writing of Owusu-Ansah and Mji, who open an article on African
indigenous knowledge systems with the following:
The thrust of this paper is to heighten awareness, stimulate new thoughts and generate dis-
cussion on the wealth of indigenous knowledge. African researchers need to persist in
developing and using alternative methods of studying our reality and refrain from sticking
to the research pathways mapped out by Western methodologies, within which many have
been trained. Whilst it neither seeks to negate nor denigrate known Western methods of
investigation, it intends to challenge researchers and African scholars in particular into
alternative methods of inquiry as far as the investigation and preservation of indigenous
knowledge is concerned for the development and empowerment of African peoples and
particularly persons with disabilities. (Owusu-Ansah and Mji 2013: 1)
Later, they portray ‘Afrocentricity’ as fundamentally concerned with cultural
immersion and respect of the other:
It is noteworthy that Afrocentricity is not just about Africa or the African culture. Instead,
its fundamental aim is that all cultural centres must be respected and not impaired by colour
or geography. Instead, to be ‘centred’ is to be located as an agent, not as ‘the other’ … the
basis of which is equal and respectful mutual exchange and synthesis of information. To
this end, Afrocentricity encourages cultural and social immersion as opposed to scientific
distance in research as well as the use of tools and methods indigenous to the people being
studied. This way, indigenous peoples are active participants in the articulation of the
views, wishes, concerns and research questions that they deem important to their cultural

78
context and experience. Social immersion would provide researcher knowledge about and
familiarity with the history, language, philosophy, and myths of the people under study, and
reduce misinterpretation, perpetuation of myths and researcher imposition. (Owusu-Ansah
and Mji 2013:1)
In support of this African approach, the authors mention the importance of col-
lectivism in Africa but also draw on social model theorists and the fundamental
social model argument that the voices of disabled people themselves must be heard
in order for emancipation to occur. What they do not do is explore the possible ten-
sions between a collectivist model of social organisation and a social model
approach. A fundamental question here is the extent to which models of collective
experience and decision-making in African contexts are truly inclusive.
The concept of ubuntu is widely drawn on in contemporary Africanist thinking
and has been suggested as a model for disability studies in the postcolonial context
(Mji et al. 2011; Chataika and McKenzie 2013; Kathard and Pillay 2013).According
to Kathard and Pillay (2013: 86), ‘Ubuntu is an African consciousness characterized
by inter-connectedness of people, their communalism, solidarity, generosity, com-
passion, and care’. Here, Kathard and Pillay summarise a commonly presented opti-
mistic view of ubuntu as a philosophy of complete inclusion and care, a system of
thought constructed as an opposing force to dominant and inhumane practices from
the north. Feminist scholars in particular, however (see for example Mangena
2013), have noted that the extent to which ubuntu grants equal rights may be seri-
ously constrained by ideas of gender and lineage. For example, in an ubuntu con-
text, it may be true to say that decision-making is done collectively but there may
be constraints on who constitutes the collective. Female gender may limit access to
decision-making, as may young age. Van Zyl notes:
In Ubuntu … individual existence is expressed through communal interdependencies, shar-
ing, reciprocal obligations, and responsibilities. Therefore in Ubuntu freedom is circum-
scribed by belonging in a community, primarily referenced through kinship. (Van Zyl 2011:
337)
Van Zyl’s point is important here. According to her reading, ubuntu does not cre-
ate conditions for inclusion; it promotes inclusion for those already considered to be
part of a circumscribed community. It is by no means clear, in this view, that dis-
abled people would automatically be seen to be included. It is also not irrelevant
here that kinship is a key concept. Kinship is determined partly by definitions of
personhood (only people defined as such may be deemed kin) and by sexuality (it is
through procreation that kinship ties are extended). It is by no means clear in the
global South, as is the case elsewhere in the world, that disabled people enjoy the
same rights as others do to being considered fully human and legitimately sexual.
In light of these concerns, it is probably true to say that though disability scholars
from the South have raised the issue of ubuntu as an important one in engaging with
questions of disability and inclusion, there is not as yet sufficient critical engage-
ment with the concept and what it may mean for disabled people. There may indeed
be a degree of unevenness in the application of ubuntu concepts to groups of people
with different impairments and different genders.

79
Religion
A key way in which disability is understood globally is in terms of religion. Though
many texts will depict ideas about disability in the north as having emerged from a
religious to a scientific paradigm, religious formulations remain key to how disabil-
ity is widely understood and experienced (see Miles 2002; Grech 2012). In the
global South, furthermore, it is not uncommon that the only provision for disabled
people of crucial resources, such as education and health care, will come from faith-
based organisations. Disability activists in southern Africa who participated in a
research skills course, all of them well versed in the social model, were all practis-
ing Christians (Swartz 2013) and found it inconceivable that it was possible to
engage with disability issues without coming from a faith-based orientation. Local
beliefs about disability as divine punishment or being associated with sorcery share
much with such beliefs worldwide and need to be engaged with. In recent years,
there has been a deepening interest in how issues of faith need to be considered in
the context of promotion of disability rights in the global South (Claassens et al.
2013). As in the case of ubuntu, there are both possibilities and challenges here as
the balance needs to be sought between recognising the deleterious effects of reli-
gion on disabled people on the one hand and, on the other, utilising religion as an
important resource in this regard. The centrality of belief to the experience of dis-
ability is perhaps one of the most serious challenges to disability studies theorists
influenced by materialist analyses, and much work needs to be done in exploring
points of agreement and tension across different approaches.
Conclusion
Critical disability studies—when it works well and with an ethics of openness to
inquiry—is always aware of the inequities of globalisation. In this chapter we have
moved in and out of north and South spaces to consider the complex ways in which
disability is placed and understood. As we have shown, there is an urgent need to
consider disability within a global politics of place and power, but the ways in
which this field should be taken forward are not yet fully clear. We have shown how
‘disability’ has become an object created and shaped—indeed, to a degree, pro-
duced—by global forces. We have suggested, however, that in the context of global
power imbalances it is extremely difficult for those in the global South constructed
by such forces to speak back to the power not only of global colonial and neo-liberal
interests, but also to the power of theorists in the north who, whatever their emanci-
patory agendas, are located differently from those with less access. This chapter
(and others in this book) represents an attempt to think together from positions in
the global north and the global South. This is not enough.
Wherever disability is spoken of without contextual qualifiers, it is important
that those generally excluded from discussions participate. Disability studies (after

80
the medical model) depend centrally on a politics of participation; it is important
that efforts are made and resources are made available to extend participation in the
framing of debates. This requires much more active participation from the global
South. Furthermore, it is important to recognise the dynamic ways in which global
north discourses of disability penetrate and mingle with global South practices and,
conversely, how these latter practices resist or hybridise disability discourses.
When we speak of global South disability studies we should not romanticise
these contexts as if they were untouched by the processes of colonisation—nor
unaffected by the disability activism of comrades in other parts of the world.
Disability as it appears in the place of the global South demands us to think again,
from different and often under-represented contexts, about disability as a moment
of reflection on the kinds of humanities that we value and the types of politics that
we require. Rather than setting up global north and global South disability dis-
courses as always in opposition, we would want to acknowledge differences and the
differential ways in which power operates within and across the contexts, but also
we would want to identify a shared disability commons for the development of dis-
ability politics. Following Hardt and Negri (2000), while mindful of geopolitical
differences, when we place disability we should also seek to identify those political
moments when disabled people are agitating in similar ways across the globe that
demonstrate their part of a shared politics of disability.
Acknowledgements Parts of this chapter are reproduced by permission of Sage Publications, ©
from elements of chapters 1, 4 and 5 of D. Goodley (2011), Disability Studies: An interdisciplinary
introduction, London: Sage.
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S. Grech, K. Soldatic (eds.), Disability in the Global South,
International Perspectives on Social Policy, Administration, and Practice,
DOI 10.1007/978-3-319-42488-0_22
Chapter 22
Disability and HIV: Critical Intersections
Ruth Evans, Yaw Adjei-Amoako, and Agnes Atim
Introduction
The relationship between HIV and disability is complex, but critical, because dis-
abled people are vulnerable to HIV infection, while people living with HIV are at
high risk of impairment. But this relationship remains largely unexplored in dis-
ability studies, epidemiology, global health, development and associated fields, and
disability issues have been largely neglected in global and national HIV policy
responses. The United Nations Convention on the Rights of Persons with Disabilities
(CRPD) does not explicitly refer to HIV in the definition of disability. However,
UNAIDS et al. (2009: 1) note that:
States are required to recognize that where persons living with HIV (asymptomatic or
symptomatic) have impairments which, in interaction with the environment, results in
stigma, discrimination or other barriers to their participation, they can fall under the protec-
tion of the Convention.
In 2009, UNAIDS in collaboration with the World Health Organization (WHO)
and the Office of the UN High Commissioner for Human Rights highlighted the
lack of data on the prevalence and incidence of HIV among disabled people and
the need for all HIV programmes to address the concerns of disabled people.
Yet disability and disabled people were mentioned in only one paragraph of the
110-page UNAIDS (2012) Report on the Global AIDS Epidemic and are not men-
tioned at all in the 2013 report, despite considerable data and attention paid to other
R. Evans ( ) • Y. Adjei-Amoako
Department of Geography and Environmental Science, University of Reading, Reading, UK
e-mail: r.evans@reading.ac.uk; adjeiyawa@yahoo.co.uk
A. Atim
Hope Development Initiative, Kampala, Uganda
e-mail: agnesapea@gmail.com

352
vulnerable populations, such as children (aged under 15) and young people (aged
15–24) and ‘key populations at higher risk’, such as sex workers, people who inject
drugs and men who have sex with men (UNAIDS 2013: 32). This continuing lack
of data on HIV prevalence among disabled people globally obscures their specific
needs and requirements in accessing HIV prevention, treatment, care and support
services. It also makes invisible the links between the situation of people living with
HIV and disabled people, overlooking these complex issues.
People living with HIV1
(PLHIV) are not usually defined as disabled people,
unless they have specific long-term impairments, despite some countries (includ-
ing the UK and Australia) according protection to PLHIV under national disabil-
ity legislation (DRC 2005; Hanass-Hancock and Nixon 2009). The disability
movement has been reluctant to regard PLHIV as disabled people (Evans and
Atim 2011), largely due to social model perspectives that reject the notion of dis-
ability as an ‘illness’ (Morris 1991; Wendell 2001). Furthermore, Groce (2005)
argues that fear of the potential double-stigmatisation of disability and HIV has
led many in the disability community to avoid issues of HIV. Similarly, PLHIV
rarely identify as disabled, unless they have permanent physical impairments
resulting from HIV that affect their quality of life. Shakespeare et al. (1996)
argue that PLHIV are not prepared to identify as disabled because their under-
standing of disability is based on the medical model and is stigmatised. Thus,
HIV activists, experts and advocates may avoid being associated with disabled
people because of their own misperceptions and stigma about disability (Hanass-
Hancock 2009; Groce et al. 2013).
This chapter explores this complex and critical relationship between disability
and HIV, and the implications for disabled people with HIV in terms of their access
to healthcare in the global South. First, we discuss conceptualisations of disability,
bodies and health identities, including those of PLHIV. We then examine disabled
people’s vulnerability to HIV, including violence, stigma and access to sexual health
and HIV prevention and treatment programmes. We focus our discussion of the
relationship between disability and HIV in sub-Saharan Africa, the continent that
has been most affected by the HIV epidemic to date, and examine recent policy
initiatives by disabled people’s organisations and networks of PLHIV to tackle dis-
crimination and advance their claim for the right to health. We analyse the policy
context of disability and HIV in Ghana and Uganda specifically in order to provide
an understanding of differing local and national contexts of vulnerability, activism
and policy engagement on these issues.
1
Although the frequently used PLHA acronym includes both ‘HIV’ and ‘AIDS’, UNAIDS termi-
nology guidelines (2011) propose use of the term that is most specific and appropriate in the con-
text to avoid confusion between HIV (a virus) and AIDS (a clinical syndrome). People living with
HIV and the HIV epidemic are the preferred terms and AIDS should be used only when referring
to a person with a clinical diagnosis of AIDS or to national policy responses. We have therefore
used the acronym ‘PLHIV’ throughout this chapter.
R. Evans et al.

353
Disability, Health and HIV: The Medical and Social Models
of Disability
Disability politics and social theories of the body, health and disability that devel-
oped since the 1970s have influenced development approaches based on multidi-
mensional understandings of poverty that aim to enhance human capacities and
well-being. Disability activists in the global North rejected medical, rehabilitative
models of disability which were based on assumptions that disabled people suffer
primarily from physical and/or mental abnormalities that medicine can, and should,
treat, cure or at least prevent (Oliver 1990). Within the dominant ‘medical model’
approach, disability is perceived as an ‘individual misfortune’or ‘tragedy’. The dis-
ability movement in the global North (led by mainly UK-based activists and allies)
instead developed a ‘social model’ of disability to focus attention on the sociocul-
tural, economic, political and spatial barriers to participation that disabled people
experience (Oliver 1990). An individual’s ‘impairment’ was seen as separate from
the disabling social barriers that excluded disabled people. The social model thus
focuses on changing society to facilitate the participation and inclusion of disabled
people, rather than on efforts to ‘rehabilitate’ individuals and overcome biological
constraints of the body (for further discussion of the social model, see Aramayo
et al. 2016 in this volume).
While these understandings of disability have been crucial to improving acces-
sibility, achieving equality of opportunity and securing disabled people’s rights in
the global North, commentators have questioned the appropriateness of applying
western-centric social models of disability in the global South (McEwan and Butler
2007). Furthermore, there has been growing recognition of the need to investigate
the interconnections between sociocultural representations of health, illness and
disability and development processes at both a local and global scale (Power 2001;
McEwan and Butler 2007). Although debates about disability and chronic illness
within the social sciences have been largely dominated by urban, Anglophone and
western-centric concerns to date, a growing literature has highlighted that under-
standings of bodies, disability and illness vary according to the economic, geopoliti-
cal, sociocultural and spatial context (Power 2001; Longhurst 2005). While most
cultures ascribe to notions of a ‘normal’ or ‘ideal’ body or mind, the meanings
attached to different illnesses and impairments and the social responses that are
deemed appropriate are not universal.
Indeed, research from the global South is increasingly challenging northern fram-
ings of the disability debate (Connell 2011). Social model approaches to disability
have been criticised for failing to acknowledge the materiality of the body, such as
the effects of pain and impairment on people’s everyday lives, and the impacts of
structural violence, such as impairments resulting from processes of imperialism and
colonisation (Grech 2011; Meekosha and Soldatic 2011). Meekosha and Soldatic
(2011) argue that a politics of impairment is critical for understanding ‘disability’ in
the global South. The separation of ‘impairment’ from ‘disability’ that underpins the
social model can result in impairment being constructed as ‘natural’ (as opposed to
22 Disability and HIV: Critical Intersections

354
disability which is viewed as ‘social’). However, as Meekosha and Soldatic (2011:
1393) argue, ‘impairment is not in fact always natural, but the outcome of deeply
politicised processes of social dynamics in bodies that then become medicalised and
then normalised through a raft of moral discursive and real practices’. They call for
a ‘politics of diversity within unity’(Meekosha and Soldatic 2011: 1392) as a central
strategy of global mobilisation on disability and impairment.
Recent approaches have emphasised the need to understand the changing mate-
riality of the body and embodied experiences of health and illness in the construc-
tion of health identities (Parr and Butler 1999). Health identities are not fixed, but
rather are constantly being produced, shaped and resisted through biomedical and
lay discourses of health and illness, social interactions, embodied actions and
resources that individuals can access within specific contexts (James and Hockey
2007). Such understandings of embodiment, health and illness have been shown to
be particularly relevant in understanding the lived experiences of people with fluc-
tuating and unpredictable chronic illnesses, such as multiple sclerosis, arthritis and
HIV among others (Dyck 1995; Wendell 2001).
Drawing on Rabinow’s concept of ‘biosociality’, Hughes (2009: 678) suggests
that the interests and concerns of ‘biosocial’ groups and disabled people diverge in
a number of ways. First, while the social model stance of the disability movement
rejects biomedical discourses and has been reluctant to acknowledge lived experi-
ences of impairment, biomedical diagnosis and impairment are central to the iden-
tification of ‘biological citizens’. Second, biosocial groups are likely to ‘gather and
embrace the specialised medical and scientific knowledge associated with their con-
dition’ and medicine is perceived as a ‘potential ally’ in contrast to the disability
activists. People living with HIV inAfrica and others with chronic illness, for exam-
ple, may identify with others on the basis of their biomedical diagnosis rather than
according to a strategic notion of ‘disability’ and the focus of their activism may be
on access to medical treatment, which may differ from the focus of disability activ-
ists (Evans and Atim 2011).
Differences in standpoint between disabled activists inspired by the social model
and PLHIV are also revealed in the language each group uses to refer to themselves
and in conceptualising disability and HIV. Disability activists and people living with
HIV both favour terms which include the word ‘people/persons’ when referring to
themselves. Disability activists inspired by the social model, especially those who
are British and working in academia, tend to avoid the acronym ‘PWDs’ for ‘per-
sons with disabilities’, despite the increasingly common use of this term by devel-
opment agencies and in rights-based approaches. In contrast, the acronym ‘PLHA’
and more recently, PLHIV, is widely used by HIV activists and in the literature
(Beckmann and Bujra 2010) and is not considered to dehumanise people living with
HIV. Furthermore, negative attitudes, assumptions and discrimination affect the
lives of both disabled people and PLHIV. The HIV literature tends to conceptualise
this in terms of stigma or social processes of stigmatisation (Ogden and Nyblade
2005; Parker and Aggleton 2007), while the disability literature uses the language
of ‘psycho-emotional dimensions of disability’ (Reeve 2002) and attitudinal barri-
ers to equal participation in society.
R. Evans et al.

355
Vulnerability to HIV and Access to Healthcare
Among Disabled People
The ‘vulnerability’2
of disabled people to HIV has only recently been recognised
and disability issues have been largely neglected in global and national HIV policy
responses. Disabled people have been excluded from HIV prevention campaigns,
clinical outreach efforts and social and economic support schemes (Groce et al.
2013). This is linked to underlying assumptions that disabled people are sexually
inactive (Morris 1991; Shakespeare et al. 1996; Shuttleworth 2007), unlikely to use
drugs and at less risk of rape and sexual violence. Recent research has refuted these
assumptions and revealed that disabled people are at equal or higher risk of HIV
than the wider population (Groce et al. 2013).
Some authors suggest that disabled people may be more vulnerable to HIV due
to their low socio-economic status and heightened vulnerability to sexual violence,
exploitation and abuse (Kvam and Braathen 2008; UNAIDS et al. 2009; Groce et al.
2013). Disabled women and girls, people with intellectual impairments and those
staying in specialised institutions, schools or hospitals are identified as particularly
vulnerable compared to non-disabled people. Disabled women and girls are often
constructed as ‘doubly marginalised’(Yeo and Moore 2003) on account of their dis-
ability and gender, which places them at greater risk of sexual violence, coercion
and abuse, in turn increasing the risk of HIV transmission. Groce and Trasi (2004)
suggest that in some cultures, disabled people may be raped in the belief that this
will ‘cure’an HIV-positive individual. Disabled people who belong to other socially
marginalised groups, such as men who have sex with men, people who inject drugs
or prisoners, are regarded as facing multiple layers of stigma, discrimination and
social isolation which represent vulnerability factors for sexual exploitation and
HIV risk behaviours (UNAIDS et al. 2009; Groce et al. 2013). Substance use (alco-
hol and drug) was found to be a risk factor, particularly for people with mental
health problems, which increased the risk for unsafe sex and HIV infection (Groce
et al. 2013).
Disabled people may also be more vulnerable to HIV due to limited knowledge of
and access to sexual health and HIV prevention programmes. Article 25 of the
Convention on the Rights of Persons with Disabilities (2006) commits state parties to:
provide persons with disabilities with the same range, quality and standard of free or afford-
able health care and programmes as provided to other people, including in the area of sexual
and reproductive health and population-based programmes.
2
We recognise the contested, complex notion of ‘vulnerability’within disability studies (Burghardt
2013). While being categorised as ‘vulnerable’ may have social and practical consequences in
terms of being regarded as having high support needs that should be met through the provision of
services, support and other resources, it may also serve to construct particular groups as passive
recipients of service provision and deny their agency.

356
Despite this commitment from national governments to equal access to health-
care, disabled people face a number of barriers to accessing healthcare in the global
South (see Swartz and Bantjes 2016, in this volume). These include stigma and
negative attitudes of service providers who lack knowledge, awareness and training
about the specific needs of disabled people; physical inaccessibility of clinics, hos-
pitals and other healthcare settings and transport costs, especially in remote rural
areas; and a lack of sign-language facilities or availability of information in alterna-
tive formats such as Braille, audio or plain language (UNAIDS et al. 2009; Trani
et al. 2011; Van Rooy et al. 2012). In addition, the confidentiality of disabled people
may be compromised in healthcare settings, including in HIV testing and counsel-
ling services, due to the need for a personal assistant or a sign-language interpreter
to be present in order to access HIV-related services.
Research suggests that disabled people often have limited sexual health aware-
ness due to low levels of literacy, poor access to education and inaccessible sexual
and reproductive health education, HIV prevention resources and sexual health
advice and testing centres (Hanass-Hancock and Nixon 2009; UNAIDS et al. 2009;
WHO 2010). Groce and colleagues (2013) demonstrate that studies comparing dis-
abled people to non-disabled peers show that disabled people have significantly
lower levels of HIV knowledge. Attitudinal barriers on the part of service providers
may restrict disabled people’s access to sexual and reproductive healthcare, HIV
testing and prevention information (Shakespeare et al. 1996; UNAIDS et al. 2009;
Groce et al. 2013).
Many disabled children have poor access to education in the global South, which
restricts their access to sexual and reproductive health education provided in main-
stream school settings. Low literacy levels and a lack of HIV prevention informa-
tion in accessible formats (such as Braille, sign language and audio versions or other
visual formats that are accessible to those with intellectual impairments) reduce
disabled people’s ability to protect themselves from HIV and other sexually trans-
mitted infections, despite evidence that peer education and specifically designed
HIV prevention programmes for disabled people are successful in improving HIV
knowledge and reducing risk behaviours (Groce et al. 2013).
In addition to barriers to accessing healthcare, there is evidence that disabled
people living with HIV may be given lower priority in accessing antiretroviral ther-
apy and other HIV treatment, and care and support compared to other PLHIV in
resource-limited settings (UNAIDS et al. 2009; Groce et al. 2013). Even when dis-
abled people are receiving HIV treatment, health professionals may not pay enough
attention to potentially negative drug interactions between HIV treatment and the
medications that disabled people are taking, and the fact that some medications may
actually worsen the health status of people with mental health conditions, including
depression (UNAIDS et al. 2009). There is a need for in-depth qualitative research
to inform the development of appropriate interventions to tackle these crucial issues
of discrimination in access to healthcare and the rights of disabled people to HIV
treatment, care and support.
R. Evans et al.

357
Disability and HIV Activism and Access to Healthcare
in Sub-Saharan Africa
Organisations and networks of PLHIV in the eastern and southern African countries
most affected by the epidemic have grown rapidly in recent years in order to cam-
paign for their rights to healthcare. The principle of the ‘Greater involvement of
people living with or affected by HIV/AIDS’ declared at the 1994 Paris AIDS
Summit provided widespread international commitment (in policy rhetoric at least)
to the participation of PLHIV in tackling the epidemic at all levels. The HIV
Treatment Action Campaign in South Africa represents an example of an embodied
health movement of citizens who successfully advocated for their rights to antiret-
roviral therapy and greater government involvement in efforts to tackle the epi-
demic (Leclerc-Madlala 2005). While PLHIV-led organisations have been able to
influence policy agendas to some extent, they have tended to advocate for their
rights in isolation from disabled people’s organisations in the global South.
Meanwhile, disabled people’s organisations (DPOs) have increasingly recognised
the links between disability and HIV and advocated for national HIV and AIDS poli-
cies and programmes that are inclusive of disabled people. The Africa Campaign on
Disability and HIV andAIDS, led by the Secretariat of theAfrican Decade of Persons
with Disabilities and Handicap International, was launched in 2007 at a meeting of
DPOs and service providers from African countries (ACDHA 2007). Despite this
growth in advocacy by HIV activists and disabled people at global, continental and
national scales, the participation of both groups in policy initiatives related to HIV
care and support has been limited to date. We explore recent policy developments,
activism by disabled people and PLHIV and access to healthcare in two sub-Saharan
African countries, Uganda and Ghana, which provide an interesting contrast in terms
of the scale of HIV prevalence and impact of the epidemic.
Disability, HIV and Healthcare in Uganda
Since the condition was first recognised in the early 1980s, Uganda has been
severely affected by the global HIV epidemic, although adult prevalence is now
stable (at 7.2 per cent of the adult population in 2012) (UNAIDS 2013). Over three
decades of the HIV epidemic have had a major impact on families and communities,
as they struggle to care for large numbers of people with a highly stigmatised,
chronic, life-limiting illness, with very limited public social protection or formal
care services and inadequate healthcare resources (Evans and Atim 2011). The
national HIV response in Uganda has been marked by a degree of commitment from
politicians, civil society and development partners towards behavioural change, ser-
vice delivery and policy development. Despite reliable data on the HIV prevalence
of other vulnerable populations, such as children (aged under 15), young people
(aged 15–24), and ‘key populations at higher risk’, such as men who have sex with

358
men and sex workers, there is no data available on HIV prevalence among disabled
people in Uganda. As noted earlier, however, evidence suggests that they have an
equal or higher risk of HIV than the wider population.
Efforts have been made to address issues of HIV and disability globally, region-
ally and nationally in Uganda through the enactment of treaties, policies and initia-
tives such as the CRPD, the Africa Campaign on Disability and HIV and AIDS as
well as research on the impact and prevalence of disability among PLHIV (ACDHA
2008; Myezwa et al. 2009; O’Brien et al. 2010). Uganda has made progress in pur-
suing legal reforms and developing national strategic plans, such as the Persons
with DisabilityAct 2006 and the National HIV andAIDS Strategic Plan 2011–2012.
Although the latter recognises the links between disability and HIV and acknowl-
edges the challenges of limited access to HIV information and services among dis-
abled people, it does not explicitly aim to target disabled people. Disabled people
are instead lumped under the broad category of ‘vulnerable populations’, which has
resulted in little attention to date being paid to their specific risks and difficulties in
accessing HIV treatment, care and support.
The exclusion of disability in national HIV and AIDS responses in Uganda has
led to lobbying and activism among DPOs on HIV issues at local and national lev-
els. The DPO umbrella organisation, the National Union of Disabled People of
Uganda (NUDIPU), lobbied for the inclusion of disabled people at all levels of
political administration and disabled people have achieved a higher level of political
representation in Uganda than in any other country in the world (McEwan and
Butler 2007). Through NUDIPU and its partners, a Disability Stakeholders HIV/
AIDS Committee and Uganda Disability Fraternity Five-Year HIV/AIDS Strategic
Plan (2007/2008–2011/2012) were established with the purpose of mainstreaming
disability issues into national HIV programmes.
Although DPOs in Uganda recognise the relationship between HIV and disabil-
ity, organisations and networks of PLHIV tend to advocate for their rights without
involving disabled people (Evans and Atim 2011). The CRPD definition of disabled
persons3
and the international classification of functioning, disability and health
(WHO 2001) are regarded by HIV activists as bridging the disability and HIV gap
and highlighting challenges related to living with HIV for disabled people. These
frameworks now provide a basis for HIV and disability policy advocacy and pro-
gramming for both DPOs and PLHIV organisations in Uganda.
Disability, HIV and Healthcare in Ghana
Although the first cases of HIV in Ghana were recorded in 1986, HIV prevalence
has remained relatively low in West Africa in comparison to the high HIV preva-
lence recorded in eastern and southern Africa in the 1990s and 2000s. The
3
The CRPD understanding of disability includes people those with long-term physical, mental,
intellectual or sensory impairments which hinder their full, effective and equal participation with
others in society.
R. Evans et al.

359
government responded to the HIV epidemic by setting up the Ghana National AIDS
Commission and subsequently formulated the National HIV/AIDS Policy (Agyei-
Mensah 2006; Luginaah 2008; GAC 2012). The main thrust of the policy focused
on reducing the impact of HIV-related vulnerability and AIDS-related morbidity
and mortality. The policy identified the need to intensify behaviour-change strate-
gies and address vulnerability due to gender, socio-economic status and marginali-
sation (GAC 2012). Ghana is one of the 15 sub-Saharan African countries where
adult HIV incidence declined by over 50 per cent over a 10-year period, from 2.3
per cent in 2001 to 1.4 per cent in 2012 (UNAIDS 2013: 120). This reduction is due
to several factors including political commitment of resources to tackling the epi-
demic, coordinated policy formulation and implementation, high-level advocacy
and increased knowledge leading to behaviour change (GAC 2012).
As is the case in many countries in sub-Saharan Africa, however, the inclusion of
disabled people in national HIV responses in Ghana is still negligible and few
efforts have been made to address the specific needs of disabled people with differ-
ent impairments (Tsiboe-Darko 2008; Mprah 2013). The National Strategic Plan on
HIV and AIDS (2011–2015) does not specifically address the needs of disabled
people, although they have an equal or higher risk of exposure to all known HIV risk
factors (Groce 2005; ICAD 2008). In Ghana, most mainstream HIV education and
treatment information is not provided in accessible formats such as Braille and
audio versions for blind people, or in sign language for deaf people and those with
hearing impairments (Tsiboe-Darko 2008; Mprah 2013). This lack of information
means that disabled people often have little HIV knowledge and awareness, includ-
ing about how to prevent transmission, how to live positively if one becomes
infected and how to care for others living with HIV-related illness.
Under the National Health Insurance Scheme in Ghana, healthcare should be
free of charge to disabled people, but physical, financial and attitudinal barriers
make access to, and use of, healthcare services challenging for disabled people.
Many public health facilities in Ghana, where medical services, including HIV
counselling, testing and treatment, are provided, are not accessible to disabled peo-
ple, as interviews with the following two women participating in the study4
revealed:
Just imagine going to the hospital very sick and weak and still have to climb long stairs to
see the doctor. It means that you have to go with someone who is strong to carry you up the
stairs, like a child … it is not nice, so I pray I do not fall sick again, even if I do I will just
go to the drug store than go to that hospital. (participant with physical impairment)
You go to the doctor [hospital] with a small illness and return home even more sick
because no one signs, so I ask myself how they understood how I am feeling to give me
drugs after checking just my temperature … God watches over people like us [the deaf].
(participant who was deaf).
4
Interviews were conducted in 2012 as part of YawAdjei-Amoako’s doctoral research on disability
and inclusive development in Ghana, funded by The Felix Trust. The links between disability, HIV
and access to healthcare were not an explicit focus of the research, although several disabled par-
ticipants discussed barriers to accessing healthcare and a small proportion of the sample (3 of the
26 disabled people) identified as having ‘autoimmune conditions’.

360
While there is a paucity of research on the links between disability and HIV,
anecdotal evidence from disability advocacy groups in Ghana points to significant
and unreported cases of HIV infection, HIV-related illness and death among dis-
abled people. A considerable body of research from Ghana has focused on the dis-
abling effects of HIV on previously healthy people; yet there is almost no mention
of the impact of the HIV epidemic on people with pre-existing physical, sensory and
mental or intellectual impairments.
Conclusion
This chapter has explored the critical relationship between disability and HIV in
terms of the ‘vulnerability’ of disabled people to HIV and their often limited access
to healthcare, including accessible HIV information and prevention activities, sex-
ual health services and HIV treatment, care and support. We have also explored how
the activism of PLHIV in campaigning for their rights to treatment, care and support
as ‘biological citizens’ may differ from the activism of disabled people and DPOs,
who have been more reluctant to mobilise on the basis of impairment and/or access
to healthcare to date. Stigma appears to operate on multiple levels, influencing per-
ceptions of disabled people as well as of PLHIV among healthcare professionals,
members of the public and among each group. This means that networks and organ-
isations of PLHIV have been reluctant to identify as disabled people to date and
stigma further compounds the social isolation and marginalisation of disabled peo-
ple living with HIV, who may face additional barriers in accessing HIV treatment,
care and support in resource-limited settings.
Initiatives of disabled people and PLHIV in our two case studies of African
countries with differing HIV prevalence and impacts over the last three decades—
Uganda and Ghana—suggest, however, that the intersection of disability and HIV
may also provide opportunities for collective mobilisation and cross-movement
lobbying and campaigning on the right to health for disabled people and PLHIV. As
Shakespeare and colleagues (1996) argue, the social model of disability is appropri-
ate to those living with HIV and ‘does not undermine their determination to be
accepted as survivors living positively’. Building alliances between disabled people
and PLHIV would bring several benefits to both groups including ‘a shared voice in
demanding civil rights and better services; the experiences of self-organization and
social model approaches learnt in the disability movement; and the professionalism,
treatment activism and resources of the HIV/AIDS lobby’(Shakespeare et al. 1996).
Recent policy initiatives such as the Africa Campaign on Disability and HIV and
AIDS suggest potential opportunities for PLHIV-led organisations and DPOs to
form new alliances and partnerships (ACDHA2007; GFD 2013). This would enable
PLHIV and disabled people to lobby for their rights to health together, in recogni-
tion of the interconnections between HIV and disability.
R. Evans et al.

361
African organisations of PLHIV have achieved some success in influencing the
global care agenda, as demonstrated in the Agreed Conclusions of the United
Nations Commission on the Status of Women 2009 meeting. The voices and needs
of disabled people, however, were neglected and disabled people continue to be
framed as a ‘care burden’ within global HIV policy debates (Bedford 2010). The
rapid adoption and ratification of the CRPD in many countries have resulted in a
high level of state and civil society mobilisation around disability, including in
Ghana, Uganda and other African countries. This momentum could be harnessed to
build alliances between DPOs and PLHIV-led organisations, in recognition of their
common experiences of stigma and marginalisation and shared identifications as
‘survivors’and active citizens. It is not surprising that joint advocacy by PLHIV and
disabled people has already taken place in Uganda, where the lengthy duration and
generalised nature of the HIV epidemic have led to a high level of sustained activ-
ism by PLHIV on the right to health since the early 2000s. In Ghana, encouraging
steps are being taken to improve HIV education and promote safer sex among dis-
abled people; in a new initiative, Ghana Federation for the Disabled is collaborating
with the Ghana Health Service and Ghana AIDS Commission to promote HIV edu-
cation, voluntary testing and counselling for disabled people in urban and rural
areas (GFD 2013). Collective action could help to strengthen the voices of disabled
people and PLHIV in lobbying for change, raising awareness of disabled people’s
right to health and tackling barriers to accessing HIV prevention, treatment, care
and support. Finally, our analysis reveals the need for further research to provide
empirical evidence about attitudinal and structural barriers to healthcare for dis-
abled people, including health education and HIV prevention, treatment, care and
support activities, in addition to documenting promising practices and policy initia-
tives which may help to address these barriers.
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