Start Submission

Reading: Tradeoffs in Visual Impairment Rehabilitation: Hearing Service User Accounts of Rehabilitati...

Download

A- A+
Alt. Display

Research

Tradeoffs in Visual Impairment Rehabilitation: Hearing Service User Accounts of Rehabilitative Relationships and Organisational Culture in South Africa

Authors:

Michelle Botha ,

Division of Disability Studies, University of Cape Town; Centre for Disability and Rehabilitation Studies Stellenbosch University, ZA
X close

Brian Watermeyer

Centre for Disability and Rehabilitation Studies Stellenbosch University, ZA
X close

Abstract

In order to access skills for adjusting to visual impairment (VI), individuals are drawn into the fabric of rehabilitation organisations and into relationships with rehabilitation workers. Through prioritising rehabilitation service user perspectives, this paper explores the question of what might be imparted to those undergoing VI rehabilitation about their value, their status and their place in the world. Foucauldian discourse analytic reviews were conducted on semi-structured interviews with 18 rehabilitation service users and 8 service providers at 4 rehabilitation organisations in South Africa. While much of value is gained in rehabilitation, service user accounts shed light on a series of tradeoffs individuals are exposed to, such as relationships, practices and structures within which they may also feel as though they are losing something fundamental related to agency and social status. In rehabilitation, individuals can receive powerful signals about who they are, which they are likely to carry forward into their lives.

How to Cite: Botha, M. and Watermeyer, B., 2022. Tradeoffs in Visual Impairment Rehabilitation: Hearing Service User Accounts of Rehabilitative Relationships and Organisational Culture in South Africa. Scandinavian Journal of Disability Research, 24(1), pp.96–108. DOI: http://doi.org/10.16993/sjdr.859
267
Views
14
Downloads
2
Twitter
  Published on 28 Mar 2022
 Accepted on 02 Mar 2022            Submitted on 09 Sep 2021

Introduction

Rehabilitation services play an important role in the lives of persons with visual impairment (VI). These services provide necessary skills for adjusting to vision loss and exposure to assistive devices. Which can enable people to travel, work or study independently and to enjoy leisure activities and other forms of social participation (Dodds 1993). Accessing these services involves being drawn into the fabric of rehabilitation organisations and into relationships with rehabilitation workers (Dodds 1993; Michalko 1998; Scott 1969; Swain & French 2001). An under-explored aspect of VI rehabilitation relates to the ways in which these spaces and relationships are subjectively experienced by service users and how organisational culture may influence individuals who at the time are likely to be experiencing a precarious sense of self and belonging (Dodds 1993; Michalko 1998; Scott 1969). Michalko (1998: 3) recognises that rehabilitation is a formative voice in shaping the self-perception of persons with VI as ‘[w]hat counts as help…tells blind people what they are, how to act and how to conceive of themselves’. This paper explores the question of what might be imparted to individuals undergoing processes of VI rehabilitation about their value, their status and their place in the world. This layer of experience in rehabilitation, which relates to identity, has tended to be overlooked amid the largely practical concerns of rehabilitation work, as important as these are (Lourens, Watermeyer & Swartz 2019; Martiniello, Haririsanati & Wittich 2020; Michalko 1998).

The findings we present in this paper are drawn out of a larger qualitative study that used both Foucauldian and psychoanalytic concepts to explore an interplay between the essential practical interventions found in VI rehabilitation and the influences on identity, which those undergoing rehabilitation services are exposed to. This study was conducted in post-apartheid South Africa, which remains a profoundly unequal society, with lack of public service delivery, under-resourced educational settings and healthcare, and widespread unemployment disproportionately affecting people of colour (Ebrahim et al 2020; Watermeyer & Swartz 2006). Any examination of disability in South Africa must, therefore, recognise the significance of systemic issues connected to a post-apartheid context, which maintains the bonds between race and poverty, as well as the cycle of poverty and disability identified by many disability studies scholars working in the Global South (Barron & Ncube 2010; Watermeyer & Swartz 2006). Although South Africa’s post-democracy constitution and various anti-discrimination legislation can be viewed as progressive in their inclusion of concerns related to the rights of persons with disabilities, implementation remains poor, and disabled people in our context, and particularly those who are further racially and socio-economically marginalised, face significant challenges to accessing education, healthcare and employment (Ebrahim et al 2020).

Regarding VI, vision loss in our context often results from preventable and treatable conditions, including glaucoma and cataracts; therefore, links between VI, poverty and access to healthcare and health-related information are evident (Sacharowitz 2005). In South Africa, rehabilitation services for persons with VI are managed and implemented by rehabilitation workers and housed in local and longstanding non-profit organisations (NPOs) which are funded by the government, the corporate sector and individual donors in order to provide services at no cost to beneficiaries. A prevailing dynamic in these organisations, therefore, relates to the positioning of rehabilitation workers as experts on VI and VI persons, who are, in turn, positioned as welfare recipients.

The potentially far-reaching implications of being positioned as a welfare recipient have been widely discussed in disability studies (Drake 1996; Hughes 2019; Longmore 1997; Swain & French 2001). In particular, these concern citizenship. As Longmore (1997: 151) asserts, ‘anyone resorting to public welfare…is regarded as neither fully a person nor legitimately a citizen’. As a result of the tendency to view the users of VI rehabilitation services as passive recipients of professional interventions, the perspectives of service users with VI may be easily overlooked (Drinkwater 2005; Swain & French 2001). Consequently, this paper prioritises the perspectives of persons with VI undergoing rehabilitation services at several NPOs in South Africa. These perspectives tend to complicate a common assumption that rehabilitation is the simple solution to the problems of blindness (Michalko 1998; Scott 1969) and provide insight into a set of predicaments related not only to the practical challenges of vision loss, but also to identity, belonging and power (Botha & Watermeyer 2018; Lourens, Watermeyer & Swartz 2019; Michalko 1998). While much of value is gained in rehabilitation, service user accounts describe a set of tradeoffs where individuals are exposed to relationships, practices and structures within which they can feel as though they are losing something fundamental related to agency and social status.

This paper is aligned with the body of empirical work that has used Foucauldian analytic concepts as a tool to critically interrogate rehabilitation practice and the power-knowledge embedded in rehabilitative relationships. Tremain (2005; 2017) has traced the ways in which designated spaces for disabled bodies, such as charitable institutions and special schools, emerged as a means to manage unruly subjects, disciplining these subjects to produce docility. For example, Sullivan (2005), through interviews with spinal cord-injured people, considers how the paralysed body becomes an object of professional knowledge in rehabilitation and the manner in which individuals experiencing spinal cord injury are limited in terms of developing their own ways of being in the world. Along similar lines, Drinkwater (2005) explores disciplinary power in supported living, suggesting that ‘esteemed values’ in rehabilitation practice, including independence and choice, obscure the workings of power, that is, the ways in which disabled people continue to be managed even within developing rehabilitation practices viewed as emancipatory.

Our study also resonates with work that considers the psycho-emotional aspects of disabled life and the internal negotiations related to identity that disabled people living in discriminatory societies are involved in. Martiniello, Haririsanati and Wittich (2020), in work exploring enablers and barriers to adults with VI accessing braille training, suggest that a failure to consider the unique histories, experiences and identities of service users, as well as the ways that practices in braille training might disturb their sense of self, are major barriers to individuals accessing and being empowered by services. Lourens, Watermeyer and Swartz (2019) consider the informal helping relationships of persons with VI, suggesting that the receipt of help is a complicated negotiation with emotional and psychic implications. Help, they assert, must be carefully managed so as to preserve status, belonging and participation. They suggest that the complexities of informal helping relationships are likely to be reproduced within formal rehabilitative relationships and that understanding ‘what “helping” can do to the subjective experience of relationships’ would benefit rehabilitation practice (Lourens, Watermeyer & Swartz 2019: 1891).

In this paper we explore a matrix of power-knowledge in rehabilitation into which individuals with VI are drawn and through which they receive signals about who they are, where they belong and how they are expected to behave. Our discussion, however, begins before rehabilitation as we consider what individuals who have recently become visually impaired have been through and, consequently, what they carry with them into rehabilitation. Beginning in this way enables us to better understand the emotional state and subjective position of those who come into rehabilitation and the influential role of rehabilitation services in the lives of persons who may have recently experienced loss of employment, strained inter-personal relationships, isolation and exclusion. Focusing on the voices of service users, hearing experiences of sight loss that often include aspects of dislocation, insecurity and struggle, allows us to view rehabilitation services as part of a broader picture, and this focus on service user perspectives should prompt questions about how persons experiencing VI are engaged with in rehabilitation—what structures they are drawn into, what they are offered and what they might need in addition or instead.

Conceptual Framework

Foucauldian concepts, specifically the interrelated concepts of discourse and power-knowledge, were used in this study as a lens through which to critically interrogate the operation of VI rehabilitation services. Increasingly, scholars in disability studies have found value in Foucauldian concepts and analytic methods as these question, and hold the potential to disrupt, what might otherwise be accepted as natural, as common sense and as necessary for the well-being of persons with disabilities (Blackmore & Hodgkins 2012; Campbell 2009; Tremain 2017). Foucault adopts a critical perspective towards knowledge, recognising that accepted norms, practices and structures are produced by, and in turn perpetuate, power (Fairclough 1995; Hook 2007; Tremain 2017). This interplay is captured in the term power-knowledge (Tremain 2005). Aligning with the work of several scholars, our study explored how discourse, knowledge, power and practice interact in VI rehabilitation in ways that have very real implications in the lives of persons with VI (Drinkwater 2005; Sullivan 2005). In the present study, discourse is defined in accordance with Foucault (1981) as not merely linguistic/textual but, rather, as a set of interrelated practices—linguistic, textual, social, institutional—through which power is exercised and knowledge embedded (Hook 2007; Tremain 2017).

Power in our study is conceptualised in accordance with Foucault (1977) as disciplinary bio-power. Foucault defined disciplinary bio-power as both a constraining and productive force, directed towards both the social and the individual body and which operates both externally and internally, that is, within the self (Hook 2007; Sullivan 2005; Tremain 2005). This constraining and productive force coalesces around the individual body in various ways—through examination, training, surveillance and the normalising gaze—in order to produce ‘docile bodies’ (Tremain 2005; Sullivan 2005). A docile body, according to Foucault (1977: 136), is able to be ‘subjected, used, transformed and improved’. In other words, docile subjects are socially manageable and acceptable (Tremain 2005).

In addition, central to our analysis is the recognition of an interplay between discursive practices and psychic investments (Campbell 2009; Hook 2007; Watermeyer 2013). Normate society is, scholars have argued, deeply psychically invested in the maintenance of a disabled other as a figure against whom normalcy and validity can be measured and assured, a figure who can contain all that is fearful and abhorrent (Campbell 2009; Hughes 2019; Watermeyer 2013). Watermeyer (2013: 66) describes this as an ‘unconscious transaction’ that imbues the disabled other with negative characteristics in order to assure those who are deemed to be able that they are whole and acceptable. This accounts for the often-contradictory discourses that surround disability.

On the one hand, discourses of equality promote ‘inclusion’ by way of promoting positive attitudes (sometimes legislated in mission statements, marketing campaigns, equal opportunity protections), and yet on the other hand, ableist discourses proclaim quite emphatically that disability is inherently negative, ontologically intolerable and, in the end, a dispensable remnant (Campbell 2009: 13).

Therefore, while discursive inquiry is certainly useful as it enables us to question what might otherwise be accepted as self-evident, discourse alone does not account for pervasive and persistent disablist oppression (Watermeyer 2013). Watermeyer (2013: 64) recognises that socially entrenched disablist discrimination cannot be fully accounted for by discursive inquiry alone, nor can it be fully addressed through merely changing the discourse surrounding disability, asserting that ‘If disablist discrimination was not rooted in unconscious life, simple educational interventions would overcome it’. It is, therefore, important to consider the unconscious material that maintains the invalidation of VI people in the societal imagination, the anxious fantasies about the needs, nature and capabilities of blind persons, that might support and strengthen the power-knowledge framework that surrounds VI rehabilitation services.

Method

The study aimed to address two research questions: (1) What meanings about VI and VI persons are produced and perpetuated by organisations providing rehabilitation services to VI adults in South Africa? (2) What might be communicated to individuals undergoing a rehabilitation process about who they are, where they belong and how they are expected to behave? These questions were influenced by the first author’s experiences as a person with VI who has been both a user and a provider of VI rehabilitation services. The findings presented here address the second research question.

Research procedures

Semi-structured interviews were conducted with 8 service providers (including social workers, occupational therapists and training facilitators) and 18 service users (adults with VI) located at 4 NPOs providing VI rehabilitation services in the Western Cape province of South Africa. As a measure to protect the privacy of participants in our study, these organisations are not named but referred to as Organisation A, Organisation B, Organisation C and Organisation D.

The analysis was approached inductively in that data were not organised according to a predetermined thematic framework. Still, Srivastava and Hopwood (2009: 76) assert that ‘patterns, themes and categories do not emerge on their own’ and that data analysis will always be influenced by what a particular study is aiming to discover as well as the theoretical ideas that frame that study. Data analysis in this study was shaped by an interest in discovering the discourses that rehabilitation service providers and service users are involved in producing and reproducing, how these discourses underpin the functioning of rehabilitation services and, crucially, the knowledge about blindness that frames and supports the rehabilitative project. We were interested, moreover, in how this knowledge shapes the focus, activities and culture of organisations, as well as the self-perceptions of VI people.

Drawing on the principles for a critical discourse analytic approach as outlined by Hook (2001), interview data were coded at the discursive level, attending not to what language was saying but to what discourse was doing (Cameron 2001; Hook 2007). In order to apprehend the distinct organisational cultures of each of the four organisations where participants were recruited, the data set was organised into six cross-cutting clusters: as two broad sets of accounts (one from service providers and one from service users) and as four distinct sets of accounts from individuals involved in particular organisational ecosystems. Data analysis was approached as a process of comparing and contrasting accounts and tracing discursive threads within and across service provider, service user and organisational clusters. We use the term discursive threads to refer to recurring words, phrases and/or descriptions pertaining to both practical and relational aspects of rehabilitation. The analysis aimed to trace the ways in which these discursive threads weave together, forming/supporting or disrupting/complicating the overarching narratives that frame rehabilitative practices.

Through comparing and contrasting accounts across service provider, service user and organisational clusters, the analysis was able to trace the operation of discursive practices in VI rehabilitation and to consider the implications of these at both a practical and symbolic level. Approaching data in this way was also necessary in order to account for contrasting experiences in rehabilitation, which appear to be connected to intersections of VI, race and privilege in the South African context.

Participants

Despite South Africa’s transformed political and legislative landscape, the legacy of apartheid can still be seen in a VI population that remains racially divided in many ways. As opportunities have opened for VI people to enter inclusive school education settings, tertiary education and formal employment, these have tended to be more accessible to White people, who have historically had greater access to financial and other resources. In contrast, the marginal welfare space, where rehabilitation tends to be housed, is largely occupied by Black and Coloured1 people, many of whom remain socio-economically disadvantaged. The findings presented in this paper suggest that intersections between VI, race and privilege influence the rehabilitative spaces into which individuals are drawn and the signals about their status to which they are exposed.

There is a notable lack of racial diversity at organisations, as demonstrated by the sample of participants. All but one of the service users who volunteered to participate from Organisation A, Organisation C and Organisation D were Black and Coloured South Africans, while all the volunteers from Organisation B were White South Africans. Reflecting broader racial and socio-economic dynamics in South Africa, the circumstances described by the service users at Organisation B are considerably less dire than those described by the service users at the other three organisations. The positions of relative privilege occupied by service users at Organisation B, related to access to resources, appear to protect them from being drawn into potentially problematic aspects of institutional culture in the same way as reported by other service users. Notably, while Organisation A, Organisation C and Organisation D offer full-time and residential rehabilitation services, the services offered at Organisation B are more flexible, including one-on one low vision assessments and support groups.

Regarding service providers, only half were registered health professionals. Service providers who had not studied in health-related disciplines came from a variety of educational backgrounds, with some holding qualifications in IT, education and the humanities, while others had no formal tertiary education. At the same time, those who had studied formally in health disciplines reported little prior knowledge of visual impairment or disability and described having to learn on the job. This resonates with other work that suggests that those working in VI services are a heterogenous group where expertise is often connected to experience rather than to professional, accredited and/or regulated training (Michalko 1998; Scott 1969). In research into American blindness service organisations, Scott (1969) found that the design and implementation of blindness services often relied on the expertise of experienced professional blindness workers and that, consequently, programmes were often not subject to any formal accreditation or regulation and the content of these programmes could vary. Although this has changed significantly in the United States in recent decades, the process of regulating blindness services in South Africa is a work in progress.

Ethics

This study received ethics approval from the Human Research Ethics Committee in the Faculty of Health Science at the University of Cape Town. Participants were provided with the project information in either English, Afrikaans or Xhosa, which are the dominant languages spoken in the Western Cape. Accessible formats (large print, braille and electronic) were provided for participants with VI. Participants were given an opportunity to ask questions about the research, and the researcher emphasised that they were not obligated to participate and could withdraw at any time with no penalty. Each participant was asked to sign an informed consent form. Preserving participant confidentiality was a priority, especially given the potential vulnerability of service user participants who rely on organisation services. The names cited throughout this paper are pseudonyms, the names of organisations are not included, and descriptions that might identify an individual are avoided.

Findings

The findings are presented in two sections. In the first section we consider what individuals bring to rehabilitation. As mentioned, this discussion begins before rehabilitation, and looks beyond it, attending to what those who come to rehabilitation services have been through and what they have been exposed to, including the reactions of others towards them and negative ideas about blindness. These formative experiences, we suggest, haunt the rehabilitation process and may cause individuals to be particularly vulnerable to the influence of rehabilitative relationships and organisation culture, aspects of which we discuss in the second section. These experiences, therefore, are key in understanding the tradeoffs that individuals with VI may be drawn into as they navigate the receipt of essential rehabilitation services.

What do individuals bring to rehabilitation?

Some stories of sight loss begin with a slow, troubling realisation that something is physically not quite right, while others are sudden and traumatic. Both lead to engagement with medical professionals as answers, diagnoses and treatments are sought. In this regard, participants in our study described processes that were lengthy, frustrating, stressful and frightening, involving multiple medical appointments, referrals, tests and surgeries, not to mention the discomfort, pain and anxiety caused by their physical symptoms. In addition, participants reported receiving little information, assurance or advice from medical professionals, either about their physical symptoms or available rehabilitation services. Having been given little indication from health professionals that continuing in work might still be possible, many participants reported feeling forced to resign from their employment. Loss of employment was foregrounded in many accounts as a traumatic experience that had an impact on both physical and emotional well-being, as well as status in the community. These experiences were shared across socio-economic circumstances, by participants using both private and public healthcare. However, for those participants from disadvantaged circumstances, the material consequences of sight loss, and a lack of direct referral into rehabilitation services, were considerably more dire, combining loss of income, lack of family support and access to resources.

As a direct result of a lack of referral into rehabilitation services, the accounts of participants in our study include lengthy periods of isolation, exclusion and depression. A lack of referral sets individuals adrift into a new reality of social dislocation and insecurity, as Nikita shared: ‘For 10 years I sat at home and cried, cried every day’. This insecurity has material aspects related to loss of income, decreased capability and strained interpersonal relationships, but it also relates to identity. Scott (1969: 16) asserts that through exposure to cultural meanings about blindness we all come, in a general way, to ‘learn the role’ of blind person, although this is a role that most of us ‘will never have to play’. It is when blindness becomes our reality that we are drawn into this role and have to navigate not only the practical implications of sight loss but also a sense of self and belonging against a backdrop of largely negative meanings that connect blindness with dependency, incapability and inaction (Dodds 1993; Scott 1969). Having received little from health professionals, employers and society in general to counter socially embedded blindness stereotypes, it is not surprising that several participants in our study could only imagine blindness as a terrible reality with inaction as a key feature.

I might have another 20 years ahead of me…I really don’t want to sit…in a corner…and just…knit squares, that would drive me insane.

  —

I thought you just sit there…you sit there and you be blind, that’s what your life is gonna be like now.

  —

Sitting, and specifically “sitting at home, is both an anxious fantasy (as in Henrietta’s imagining of a future of sitting in a corner) and a very possible reality (as in the 10 years of isolation and depression experienced by Nikita). We must recognise that those who come, at last, into rehabilitation services carry with them not only a set of largely negative cultural ideas about the status and capabilities of blind persons (Dodds 1993) but also very real experiences of exclusion.

Under such circumstances, individuals are likely to be desperate for answers to such questions as how do I move forward in my life, what am I capable of, and most importantly, who am I now? It is no wonder, then, that the discovery of assistance was, for most participants, hugely significant. For many, entering rehabilitation restored some sense of belonging, signalling that they had found their place and were, at last, to be offered answers, guidance and the opportunity to gain greater mastery over their lives. At the same time, experiences of inaction, isolation and exclusion—sitting at home—appear to haunt the rehabilitation process. There is a sense in service user accounts that even when interventions felt unhelpful, anything was better than sitting at home. As Monique shared, ‘I was disappointed…but I didn’t want to go back home and…do nothing so, okay, let me do it’. The real possibility that individuals might return to a place of inaction and exclusion is, we suggest, part of what makes service users particularly vulnerable to the influence of negative aspects of the authoritative voice of rehabilitation and the signals they receive as they are exposed to the prevailing culture in rehabilitation organisations.

Service user experiences of rehabilitative relationships and organisation culture

In order to explore the prevailing culture in rehabilitation organisations, we draw on the often-contrasting accounts of service providers and service users to discuss three imperatives that surround the provision of VI rehabilitation services: maintaining relational boundaries, discipline and gratitude. Throughout the discussion we must hold in mind the question of what being exposed to these imperatives might signal to individuals who, as we have seen, are likely to have experienced dislocation from society and self and who might, as a result, be particularly open to internalising messages about who they are and how they should behave in order to avoid being excluded again.

Maintaining relational boundaries

When individuals come to rehabilitation services, they enter a space of clearly defined relational boundaries that are strictly maintained. Most service providers in our study felt that these boundaries were important to ensure the proper implementation of rehabilitation programmes. For example, Kelly, a training manager who is also a person with VI, reflected on moving into a position as a service provider:

[T]here was a time when I…became the instructor to some of the peers that I…met along the way so that was a huge adjustment…we were first sitting around a table having laughs and conversations…now I need to adopt a professional attitude ‘cause I actually have to deliver a service.

  —

Service users, however, expressed the desire to connect in a more personal way with service providers, to chat, to share meals, in other words, to be seen by service providers as more than just the recipients of their work. Service users want to share the laughs and conversations that appear to be viewed as potentially detrimental to the provision of a professional service.

Of course, this is not to say that appropriate and ethical relating in rehabilitative relationships is not an important consideration (Dodds 1993). Service users, in fact, recognised that certain boundaries were necessary.

[T]he staff is keeping…a professional face…they don’t have too much personal conversations…this is an adult institution, the boundaries will still need to be there but not necessarily saying that…the staff cannot be friends with the clients…when it’s lunchtime the staff go to the staff room and the clients must go that side. It’s almost like they don’t want staff and clients to mix.

  —

While service users described relationships with service providers as an important source of support and encouragement in the process of learning new skills, they felt as though they were not viewed as adults on an equal footing. The professional boundaries that most service providers adhere to, which are believed to be essential for the provision of efficient services, can be experienced by service users as dismissive, perhaps even de-humanising, and as a signal of their subordinate status within organisation structures. These service user perspectives raise questions about what is emphasised in rehabilitation and why.

Lourens, Watermeyer and Swartz (2019: 1895) remind us that in rehabilitation ‘both client and practitioner are part of a larger, culturally condensed set of assumptions about what it is to be a helper and to be helped in the context of disability’. In addition, relationships in VI rehabilitation are surrounded by culturally embedded knowledge about blindness, which includes the anxiety that blindness will naturally tend towards unruliness (Bolt 2014; Kleege 2006). Within this discursive framework, there may be high stakes attached to the maintenance of professionalism—a psychic investment in maintaining the boundaries between helpers and the helped—and service providers are likely to view relationships on a more equal footing as potentially obstructive.

These relational boundaries in rehabilitation support an ‘us’ and ‘them’ separation, where service providers are positioned as authoritative experts. Within this power-knowledge matrix, service users can feel disregarded, not only as adults on an equal footing but also as stakeholders, both in their own processes of development and in the day-to-day activities of organisations. Service user accounts describe organisational cultures that are characterised by an imbalance of power, where there is a lack of transparency and where the voices of service recipients are not heard.

[I]nstead of having their own meetings but having the meetings with us as well…to know how do we feel and what do we want…I think that will be better…calling us together as the students and the staff…to share with them…I think that can make our relationship more good.

  —

Service user experiences of organisation culture contrast sharply with service provider accounts of the values that underpin their work, including respecting and listening to service users in order to provide a person-centred service. This contradiction between the discourse of person-centred practice and service user experiences of feeling disregarded as stakeholders calls to mind what Campbell (2009) suggests about the pervasive nature of ableism and the contradictory discourses and practices that result. Drinkwater (2005: 267–268) also speaks to this contradiction through recognising a tension between values and power, asserting that while rehabilitation workers ‘are exhorted to think constantly about values’, they are rarely encouraged to consider the power dynamics they are involved in perpetuating. Organisation values, therefore, do not necessarily disrupt the powerful positioning of service providers. In fact, ‘the discourse of valuing’ obscures the subtle workings of power-knowledge that support disciplinary practices in rehabilitation (Drinkwater 2005: 267–268).

Discipline

The accounts of service users in our study describe rehabilitation organisations as spaces governed by strict rules and procedures within which they felt managed and patronised, as a service user, Vusi, said: ‘[S]ome of the rules or decisions, it’s almost like they are for kids’. These strict rules and procedures are supported by the relational boundaries described above and call to mind the disciplinary structures and hierarchies of a school setting.

I mean…you’re an adult woman and now ‘sit here’, ‘you can’t go here’, ‘you must do this’…I don’t think that’s conducive to adult learning…it just felt cold.

  —

Rehabilitation organisations should be viewed as spaces of adult learning (Dodds 1993); however, rehabilitation practice has seldom drawn on the wealth of theory and research in the field of adult education (Martiniello, Haririsanati & Wittich 2020). Martiniello, Haririsanati and Wittich (2020) view this as a shortcoming of rehabilitation practice, a barrier to adults with VI gaining important skills and a missed opportunity. Key principles of adult learning include an emphasis on self-directed learning, recognition of prior experiences in education and flexibility and understanding that adult learners are likely to have several other demands on their time (Martiniello, Haririsanati & Wittich 2020). Forming a striking contrast with these principles, service users in our study described being drawn into institutional culture and becoming subject to controlling and limiting practices that were not open to being disrupted by concerns pertaining to their individual lives. In this regard, a service user shared, ‘[T]hey forget…we are elders and we’ve got responsibilities’. These practices may be powerful signals, suggesting that something fundamental about the status of persons with VI as autonomous adults has been lost.

We must recognise, however, the framework of limiting discursive practices related to health and normalcy within which service providers are bound to operate—in other words, the ways in which service providers are also subject to discipline (Drinkwater 2005; Sullivan 2005). For service providers, maintaining discipline is directly related to ensuring that service recipients are able to successfully integrate into society.

We enforce those things because we feel that’s required to go into the workplace…it’s late in their lives but we try to instill it.

  —

The ‘things’ referred to here include not only skills for adjusting to VI but also responsibility, punctuality, good manners and other aspects of work readiness. While there is certainly value in service users, especially those who have never been employed, learning about the world of work and gaining relevant skills, dynamics of disciplinary power related to intersecting blindness, race and poverty should not be overlooked (Hook 2007; Tremain 2017). The majority of service users in our study are from impoverished circumstances, which several service providers referred to as ‘bad backgrounds’ where, as Mia put it, ‘there was lack of certain discipline and expectations and quality’. A troubling split can be seen to exist in South African rehabilitation services, which positions service providers as responsible for disciplining into acceptable subjects those who are disadvantaged not only by sight loss but also by a lack of ‘discipline and quality’, traits accepted as inherent to impoverished communities, which are, given South Africa’s apartheid past, also Black communities. It is important, therefore, to consider the discourses that service providers, like Mia, may be replicating, related to ideas about blindness, race, poverty and degeneracy, especially in light of South Africa’s political history and complex socio-economic landscape.

The entanglement of socially embedded ideas and anxious fantasies about disability, race and class in the disciplinary practices found in VI rehabilitation is further demonstrated by considering the contrasting accounts from the participants recruited at Organisation B. Service users at this organisation did not describe becoming subject to strict rules and procedures in the same way others did, and they related to service providers on more equal terms, as one service user shared: ‘very friendly, very warm…it’s personal, you get to know them, they get to know you’. Similarly, service providers at Organisation B described relationships with service users as friendships built through sharing experiences. The vast majority of service users at this organisation are White, middle-class women over the age of 50, as are the service providers. While this demographic similarity may explain the ease with which relationships formed, shared racial identity or stage of life did not seem to disrupt the strict relational boundaries found in other organisations. Kelly, cited above, shares several demographic similarities with the service user participants from her organisation, not least of all the experience of VI, but she is bound to subscribe to strictly defined relational boundaries. Drawing this comparison suggests that there is significance attached to the racial and socio-economic privilege of the service users at Organisation B, which, we suggest, protects them from being drawn into institutional culture and exposed to the practices that other service users experienced that eroded their status as autonomous adults.

Gratitude

While service user participants in our study spoke openly about the problems they faced in rehabilitation services, they also recognised that, as receivers of free services, they must be grateful.

[T]he food is not…nice…but I appreciate it because I’m not paying anything for the food but it’s not okay…at all.

  —

[W]e raised an issue about food…Whenever I raise such I would say, ‘I’m not saying this because I’m ungrateful or I’m not being thankful, but I’m saying this as a concern’…then they respond to my concern would be, ‘But there are people who don’t have food’…so anyway, I must just say thank you, at least I have food.

  —

These expressions of gratitude, however, read as a response to an imperative in organisational culture rather than as unmotivated thankfulness and are, it is arguable, required in order to be viewed as a docile blind subject (Kleege 2006; Michalko 1998; Scott 1969). Scott (1969) asserts that when rehabilitation services operate as charity, gratitude is understood as the only form of reciprocation available to service beneficiaries. The care that these service users take in framing these complaints also suggests that there may be costs attached to being viewed as non-compliant—unruly rather than docile (Drinkwater 2005; Scott 1969). Resonating with this suggestion, Scott (1969: 79) asserts that ‘the implications of being labelled “uncooperative” are serious…the uncooperative client is assigned low priority’.

A charity model approach to rehabilitation services can stifle the ability of service users to act as agents in their own processes of rehabilitation, growth and development (Drake 1996). Instead, a long-established history of charitable giving holds the validity of the giver at the centre, validating their generosity and maintaining the indignity (in fact, the inhumanity) of disabled persons in the non-disabled imaginary and actual social structures (Hughes 2019; Longmore 1997). Unlike in some Global North contexts, South Africa does not take a direct payment approach to the provision of disability-related services, which would allow service users to access and manage their own funds. Rather, government funding and donations from the corporate sector and private individuals are channelled to the organisations responsible for providing rehabilitation services and related benefits, such as meals, accommodation and transport. This aspect of the policy environment strengthens a view of rehabilitation services as a charitable endeavour and underpins a divide in rehabilitation that service providers are the dispensers and service users are the receivers of charity.

Taken together, these imperatives in rehabilitation—that service providers must maintain relational boundaries and discipline and that service users must demonstrate gratitude—position persons with VI as objects of rehabilitation work and charity, as potentially unruly subjects in need of discipline and as ill-equipped to make certain decisions for themselves. The vulnerability of service users who have in many cases come from dire circumstances—affected by loss of work and income, dislocation from society and self—may limit their ability to resist the demands of organisational culture and the ways in which they are being positioned. In addition, the signals about self and social status received in rehabilitation services may leave impressions that individuals will carry into their new lives as disabled people.

Discussion

The service user accounts in our study describe experiences of rehabilitation that are paradoxical, where the gaining of essential skills for adjusting to life with VI can exist alongside assaults on the self, and where individuals can feel supported, yet disempowered. Receiving rehabilitation services is, therefore, not a simple matter of discovering fitting solutions to the practical problems of blindness. Rather, service user perspectives shed light on a set of dilemmas, as gaining benefits in rehabilitation services may demand tradeoffs related to status, agency and sense of self. In order to understand these tradeoffs, we need to interrogate more than the practical effects of rehabilitative interventions and to look beyond values towards power (Drinkwater 2005).

Drake (1996) asserts that when traditional charitable organisations refer to empowerment, they are usually referring to the overcoming of an individual deficit rather than a process whereby persons with disabilities enter positions of power within organisation structures. The findings presented above suggest that prevailing power-knowledge dynamics in South African rehabilitation services for adults with VI do not model empowerment in this latter sense. Thinking outside of these dynamics requires turning inward on the part of organisation managers and rehabilitation workers in order to critically consider the discourses of health, normalcy, professionalism and expertise that frame their work and support the subordinate positioning of service users (Drinkwater 2005; Sullivan 2005). There is also a need to interrogate the unconscious material that strengthens the imperative, for example, to maintain relational boundaries in rehabilitation and the ways in which anxious fantasies about the needs and nature of blind persons shape limiting practices.

As noted, though, rehabilitation workers are also subject to disciplinary power—hierarchies and accepted procedures in rehabilitation (Drinkwater 2005; Tremain 2005). As complex as these dynamics in rehabilitation are, through critical inquiry they can be unmasked (Tremain 2005). Asking critical questions about what might otherwise be accepted as common sense enables us to recognise the ways in which accepted knowledge and practice have been made, and, as Foucault suggests, ‘since these things have been made, they can, provided that one knows how they were made, be unmade’ (Foucault 1994 cited in Tremain 2017: 93).

It is also important that we do not think about rehabilitation in isolation but, rather, view these services as part of a broader set of life experiences. Those who come to rehabilitation services are likely to carry with them experiences of dislocation, insecurity and exclusion, which may cause them to be particularly susceptible to the influences on identity that they are exposed to through these interventions. Just as we considered what individuals bring to rehabilitation, we must consider what they carry forward into their lives after rehabilitation is complete—a sense that they are capable and autonomous agents in their own lives or a sense that they must demonstrate passivity and gratitude in order to be socially tolerable (Dodds 1993; Scott 1969). These questions, related to the empowerment and citizenship of persons with VI, are important for our democracy and should prompt us to carefully consider the signals to which those who come into rehabilitation are exposed.

Conclusion

Exploring the discursive underpinnings of rehabilitation practice brings to light the ways in which such things as care and control, inclusion and objectification, acceptance and assimilation are held in tension in relationships where help is given and received. In these relationships, ‘compliance with the expectations of valued roles takes precedence over choice’, and choice becomes a source of ‘perpetual anxiety’ (Drinkwater 2005: 174). At root, this anxiety is about difference and its subduing. We must recognise that, at some level, much of what is done in rehabilitation services is shaped and underpinned by this anxiety (Drinkwater 2005; Michalko 1998; Sullivan 2005). However, in thinking about rehabilitation as a force invested in subduing difference, a Foucauldian understanding of power, as complex and multidirectional, is essential in order to avoid an uncomplicated view of the power dynamics in rehabilitation that may lead us to simply vilify those involved in rehabilitation work. Rather, there is a need to recognise complex systems of power-knowledge and the ways in which service providers, service users and, indeed, all of us collude with these.

Certainly, the tools and techniques provided in rehabilitation services are necessary, and individuals may need support to gain the requisite skills for entrance into the workforce, but what was lacking in our findings was a broad and robust sense of openness to difference. Can we, as rehabilitation practitioners, imagine a rehabilitative space where blind people are allowed, amid their dislocation and confusion, to grow into new identities through processes in which they are central stakeholders? How might this potentially allow for the creation of new cultures and lifestyles of people living with VI, and are we open to this? Ultimately, in order to transform current practices in VI rehabilitation, to draw us further towards emancipatory practice, we must recognise that it is service users, not service providers, who are the architects of their own identities, who must solely, though with support, make decisions about how and who they want to be.

Notes

1In South Africa, the term coloured refers to persons of racially mixed parentage and was a racial categorisation manufactured during apartheid. Today, many South Africans self-identify as Coloured, and although it has its roots in the language of apartheid’s racialised segregation, it does not carry the same negative connotations as in other contexts, such as in the United States. 

Funding Information

This research received funding from the National Research Foundation (NRF).

Grant: SFH160617172003

Competing Interests

The authors have no competing interests to declare.

Authors Contributions

The first author (MB) conducted the research and prepared the manuscript with supervision, guidance and contributions from the second author (BW).

References

  1. Barron, Tanya, and Jabulani Manombe Ncube. 2010. “Introduction: The purpose of this book.” In Poverty and Disability, edited by Tanya Barron and Jabulani Manombe Ncube, 4–25. London: Leonard Cheshire Disability. 

  2. Blackmore, Thea, and Stephen Lee Hodgkins. 2012. “Discourses of disabled people’s organisations: Foucault, Bourdieu and future perspectives.” In Disability and Social Theory: New Developments and Directions, edited by Dan Goodely, Bill Hughes and Leonard Davis, 70–90. Basingstoke: Palgrave Macmillan. DOI: https://doi.org/10.1057/9781137023001_5 

  3. Bolt, David. 2014. The Metanarrative of Blindness: A re-reading of twentieth-century Anglophone writing. Ann Arbor: University of Michigan Press. DOI: https://doi.org/10.3998/mpub.5725818 

  4. Botha, Michelle, and Brian Watermeyer. 2018. “‘This place is not for children like her’: Disability, ambiguous belonging and the claiming of disadvantage in post-apartheid South Africa.” Medical Humanities 47(1): 4–10. DOI: https://doi.org/10.1136/medhum-2018-011560 

  5. Cameron, Deborah. 2001. Working with spoken discourse. Thousand Oaks: Sage Publications. 

  6. Campbell, Fiona Kumari. 2009. Contours of Ableism: The production of disability and abledness. London: Palgrave Macmillan. DOI: https://doi.org/10.1057/9780230245181 

  7. Dodds, Alan. 1993. Rehabilitating Blind and Visually Impaired People: A psychological approach. London: Chapman & Hall. DOI: https://doi.org/10.1007/978-1-4899-4461-0 

  8. Drake, Robert. 1996. “A critique of the role of the traditional charities.” In Disability and Society: Emerging Issues and Insights, edited by Len Barton, 148–163. London: Longman. 

  9. Drinkwater, Christopher. 2005. “Supported living and the production of individuals.” In Foucault and the Government of Disability, edited by Shelley Tremain, 229–244. Ann Arbor: University of Michigan Press. 

  10. Ebrahim, Adele, Michelle Botha, Dominique Brand, and Karina Fischer Mogensen. 2020. “Re-imagining rehabilitation outcomes in South Africa.” South African Health Review 164–171. 

  11. Foucault, Michel. 1977. Discipline and Punish: The birth of the prison, translated by Alan Sheridan. New York: Vintage Press. 

  12. Foucault, Michel. 1981. “The order of discourse.” In Untying the text: A post-structuralist anthology, edited by Robert Young, 48–79. Boston: Routledge and Kegan Paul. 

  13. Hook, Derek. 2001. “The disorders of discourse.” Theoria: A journal of social and political theory 97: 41–68. DOI: https://doi.org/10.3167/004058101782485629 

  14. Hook, Derek. 2007. Foucault, psychology and the analytics of power. Basingstoke: Palgrave Macmillan. DOI: https://doi.org/10.1057/9780230592322 

  15. Hughes, Bill. 2019. A Historical Sociology of Disability: Human validity and invalidity from antiquity to early modernity. London: Routledge. DOI: https://doi.org/10.4324/9780429056673 

  16. Kleege, Georgina. 2006. Blind Rage: Letters to Helen Keller. Washington DC: Gallaudet University Press. 

  17. Longmore, Paul K. 1997. “Conspicuous contribution and American cultural dilemmas: Telethon rituals of cleansing and renewal.” In The body and physical difference: Discourses of disability, edited by David T. Mitchell and Sharon L. Snyder, 134–158. Ann Arbor: University of Michigan Press. 

  18. Lourens, Heidi, Brian Watermeyer, and Leslie Swartz. 2019. “Ties that bind, and double-bind: Visual impairment, help and the shaping of relationships.” Disability & Rehabilitation 41(16): 1890–1897. DOI: https://doi.org/10.1080/09638288.2018.1450454 

  19. Martiniello, Natalina, Leila Haririsanati, and Walter Wittich. 2020. “Enablers and barriers encountered by working-age and older adults with vision impairment who pursue Braille training.” Disability & Rehabilitation 1–16. DOI: https://doi.org/10.1080/09638288.2020.1833253 

  20. Michalko, Rod. 1998. The mystery of the eye and the shadow of blindness. Toronto: University of Toronto Press. DOI: https://doi.org/10.3138/9781442681781 

  21. Sacharowitz, Hazel. 2005. “Visual impairment in South Africa: Achievements and challenges.” South African Optometrist, African vision and eye health 64(4): 139–149. DOI: https://doi.org/10.4102/aveh.v64i4.239 

  22. Scott, Robert. 1969. The Making of Blind Men: A Study of Adult Socialisation. New York: Russell Sage Foundation. 

  23. Srivastava, Prachi, and Nick Hopwood. 2009. “A practical iterative framework for qualitative data analysis.” International Journal of Qualitative Methods 8(1): 76–83. DOI: https://doi.org/10.1177/160940690900800107 

  24. Sullivan, Martin. 2005. “Subjected bodies: Paraplegia, rehabilitation, and the politics of movement.” In Foucault and the Government of Disability, edited by Shelley Tremain, 27–44. Ann Arbor: University of Michigan Press. 

  25. Swain, John, and Sally French. 2001. “The relationship between disabled people and health and welfare professionals.” In Handbook of Disability Studies, edited by Gary Albrecht, Katherine Seelman and Michael Bury, 734–753. Thousand Oaks: Sage Publications. 

  26. Tremain, Shelley. 2005. “Foucault, governmentality and critical disability theory: An introduction.” In Foucault and the government of disability, edited by Shelley Tremain, 1–26. Ann Arbor: University of Michigan Press. DOI: https://doi.org/10.3998/mpub.12678 

  27. Tremain, Shelley. 2017. Foucault and feminist philosophy of disability. Ann Arbor: University of Michigan Press. DOI: https://doi.org/10.3998/mpub.8504605 

  28. Watermeyer, Brian. 2013. Towards a contextual psychology of disablism. London and New York: Routledge. DOI: https://doi.org/10.4324/9780203112762 

  29. Watermeyer, Brian, and Leslie Swartz. 2006. “Introduction and overview.” In Disability and Social Change: A South African Agenda, edited by Brian Watermeyer, Leslie Swartz, Theresa Lorenzo, Marguerite Schneider and Mark Priestley, 1–7. Cape Town: HSRC Press. DOI: https://doi.org/10.1007/978-3-319-74675-3_1 

comments powered by Disqus