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Berghs M, Atkin K, Graham H, et al. Implications for public health research of models and theories of disability: a scoping study and evidence synthesis. Southampton (UK): NIHR Journals Library; 2016 Jul. (Public Health Research, No. 4.8.)

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Implications for public health research of models and theories of disability: a scoping study and evidence synthesis.

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Chapter 3Scoping models and theories of disability

This chapter presents the findings from our first scoping review, in which we offer a synthesis of the research discussing and critiquing models, definitions and theories of disability. We identify the range of models and theories (including strengths and possible limitations in generating inclusive approaches and capturing diverse experiences); their place within the field of disability studies and within the social and political movements of disabled people; the dialogue between them; and their potential contribution to mainstream public health research and policy. This chapter identifies four broad models in the disability literature:

  1. The medical model: this model views impairment as a problem located in an individual.
  2. The human rights model: accords fundamental human rights to persons with disabilities.
  3. The social model: makes a distinction between impairment (physical/mental/sensory) and disability (as the experience of social oppression).
  4. The CDS model: questions the dualism between impairment and disability.

We offer a contextual account of the assumptions underpinning these models before discussing, in Chapter 4, the potential implications for how public health research is undertaken, including reflecting on a potential dissonance between public health and disability discourses. We begin, however, with a reflective and historical note on the difficulties we faced when mapping a shifting debate.

Mapping a shifting debate

We found a wide variety of models (statistical, professional, psychological, rehabilitative, policy, ecological), including models that focused on specific impairments (i.e. autism, arthritis, depression). Most of these models were located in the Global North, although a number of large quantitative studies were based, for example, in China. There was much less meta-analysis of models or in-depth (theoretical) exploration of strengths and weaknesses of a particular model. The earliest models that we found were linked to rehabilitative public health146 and were located mainly in the USA.21 Many of the models also had an economic basis or were concerned with quantifying disability, especially from the early 1990s onwards (see the activities of the World Bank and the WHO).12,59 The need for international standards of measures was strongly correlated to global development discourses as well as to debates about the definition of health and the meaning of QoL. One of the most influential QoL measures was Amartya Sen’s147 capabilities or capability approach. The capabilities approach has transcended its original economic origins to become a normative framework associated more with human rights approaches.148150 Such an approach argues that, when promoting human development, the focus should be on ‘functioning’ in terms of ‘being and doing’, consistent with what people are able to achieve.151 This has been hugely influential in social justice152 and human rights151 and has been applied to understanding thresholds of deprivation in economic development (the UN’s Human Development Index). Nussbaum and Sen152 argue that human development should be related to an understanding of QoL in terms of people’s capabilities. The capabilities approach was foundational for feminist approaches to, and in indices measuring, gender development.153 The capabilities approach has also been influential in public health, in particular in linking financial capability, health and disability.154 These factors tie in with larger international public health programmes and interventions linked to welfare or social security, which, for example, examine the impact of conditional and unconditional cash transfers on health to increase capacity and capabilities. Nevertheless, the capabilities approach, although seemingly positive, is still largely related to the measurement of the economic impact of ill-health and disability,155 although there are signs that this might change, as the capabilities approach has the potential to develop into a paradigm more accessible to empirical researchers.148,156 Furthermore, and perhaps reflecting its original association with socioeconomic policies, there remains a tendency for capability debates to conceptualise social justice in relation to the distribution of welfare ‘goods’, rather than as a broader connection to social equality and discrimination. Resolving these tensions is likely to be an important consideration when assessing the usefulness or otherwise of capability approaches in engaging with more critical rethinking of disabling experiences.

The most influential approaches to measurement are found in the International Classification of Diseases157 (ICD) and the Global Burden of Disease (GBD).158 The GBD uses metrics based on ‘disability’ gaps such as disability-adjusted life-years (DALYs).41,159 DALYs similarly appear in the literature from the 1990s onwards and are used in the World Bank’s World Development Reports160 and Disease Control Priorities Review.161 DALYs measure health lost as a result of mortality or non-fatal injuries or disease and are calculated by adding years of life lost and years lived with disability.162 The GBD study is updated each year and calculates the prevalence of disability using a number of measures such as DALYs;44,163 it also increasingly involves the measurement of acute and chronic diseases and injuries.122,158

In terms of metrics such as health-adjusted life-years, quality-adjusted life-years (QALYs) or DALYs, there has been little discussion about how and why these measures were developed or the ways in which they could be seen to imply that disability or ill-health are ‘costs’.160 This is a problem to which we shall return. Methodological issues were discussed in the associated literature but this tended to focus on issues relating to weighting of variables and the definition of life expectancy to calculate cost-effectiveness164 rather than to offer a critique of the concept of disability underpinning the quality-adjustment of people’s health.

By the late 1990s, criticisms of the use of DALYs had emerged. These criticisms questioned the norms and values underpinning such a measure, highlighted the dangers of viewing health in a silo without connection to the broader social environment, and asked whether or not such metrics adequately captured disabling experiences.164166 Later criticisms of DALYs focused on attempts to understand the influence of self-report, cost-effectiveness and culture on understanding disability.167171 For example, a person with a visual impairment may not be in poor health, and being ‘blind’ might be an issue linked to welfare rather than to health.167 Several critiques note the insufficiency of current measures to capture both the increasing complexity of impairments and political understandings of disability.63,172 Measurement tools linked to measuring health expectancies in longitudinal data also came to the fore, particularly in the 2000s, as demonstrated by disability-free life expectancy, disability-adjusted life expectancy or healthy life expectancy.166,173 Similar criticisms about the ability of such tools to capture complexity have emerged. We return to this in Chapter 4.

The tendency to view disability in terms of health measures has sometimes resulted in the neglect of other relevant health policy priorities directly linked to disabled people’s daily lives in the UK, such as independent living, direct payments or the personalisation agenda.39 Debates about measurement have also struggled to reflect the conceptual debates over how disability is understood.122,174

From the 1990s onwards, research on development and poverty began to include disability, but epidemiological research on how inequality links to disability did not come to the fore until the 2000s. Even then, most studies were quantitatively driven and rarely reflected more qualitative experiences of disability.175 However, critical voices, often aligned with the social model of disability, began to have an influence (see A more social model approach below). Mike Oliver’s reworking of the Office of Population Census and Surveys (OPCS) (now the Office for National Statistics survey) demonstrates some of these tensions (Box 2).

Box Icon

BOX 2

Survey example What’s wrong with you? (OPCS survey question)

Other problems included difficulties over how measurements captured changing debates about health and social care and in particular incorporated ideas about ‘self’ care, management and advocacy.88 Measurements informed by the political movements of disabled people or advocacy were equally rare. Nonetheless, over the past 5 years, we note an international and national move towards viewing disability as an essential feature of all future public health initiatives, which in turn are strongly influenced by rights-based models. The influence on public health practice, however, appears to have been slow. Most developments continue to focus on screening for disability or its measurement within population groups.

Definitions of ‘impairment, ‘disability’, ‘illness’, ‘disease’, ‘disorder’ and ‘chronic illness’ are constantly shifting, especially in terms of how they are linked to what is understood as ‘disabling’. Armstrong,176 maintaining a critical stance, saw the emergence of concepts such as ‘chronic illness’ as linked to the medical pathologisation of ageing. During the scoping review, we also noticed a further inconsistency in how ‘disabling’ is defined, with terminology more consistent with ‘disease’ or ‘disorder’ noted when discussing addiction and obesity. This may point to a growing emphasis on biomedical understandings171 rather than on more collective experiences of disability and disablement, linked, for example, to austerity.177,178

Medical definitions and classifications have also been influenced by the WHO’s international global policy priorities and classifications in terms of their differing models, classifications (i.e. ICD) and/or diagnostic manuals [i.e. Diagnostic and Statistical Manual of Mental Disorders179 (DSM)]. However, the language linked to impairment could still be regarded as paternalistic, by, for example, focusing on ‘vulnerability’, or as patronising, by prioritising models for professionals working with disabled people rather than the perspectives of disabled people themselves.180,181 This is also evident in public health policies linked to disabled people and their emphasis on dependency.182 The emphasis on the measurement of impairment could also be regarded as particularly unhelpful, as could the discriminatory language (‘retarded’, ‘retardation’, ‘deficiency model’, ‘subaverage’, ‘slow’ or ‘slow-functioning’)183,184 and implicit concern with ableism (‘failure to adapt’ and ‘challenging behaviours’).185

Despite critical challenges to such views, which have been influential in public health, there remains a tension between viewing impairment as an ‘outcome of disease or impairment’ or as a disability, informed by social limitations connected to discrimination.21 It is unclear, for example, if mental health, pain or substance abuse issues were viewed as ‘impairments’ or as ‘disability’ when quantified as such in bureaucratic, administrative or professional models.

Current debates about obesity are likely to generate similar confusion. Administrative, legal and medical understandings exist side by side, with each influencing the other but in ways that are not always recognised, questioned or acknowledged.

The growing influence of more holistic measures, however, has been welcome, particularly as more ecological paradigms have become influential. From the early 2000s onwards, for example, we see more analysis in terms of the intersectionality of disability (such as gender, age, ethnicity and socioeconomic class). There has also been a greater willingness to explore how the biosocial, institutional and cultural processes influence understandings of disability. An issue such as ‘addiction’, for instance, has shifted from being understood in terms of a disabling ‘brain disease model’ to ‘ecologies of addiction’,186 ‘neurosocial’187 or even ‘neuroplastic’188 understandings. These models are correspondingly linked to recent (bio)social science challenges and innovations,189 for instance, in terms of the importance of longitudinal analysis and big data.190

Problems remain, however. Some epidemiological studies, for example, explicitly focus on modelling a particular type of impairment in a delimited setting, for instance by assessing levels of lower back pain as a form of disability affecting the working population in Europe.191 This growing kind of research demonstrates the importance of ‘risk’ discourses linked to impairment that focuses on the consequences of prognosis and diagnosis for economic and bureaucratic measurement.192 This has been termed an ‘actuarial model’193 but is also linked to the growing political importance of quantification of health as providing evidence for policy and practice. This is evident in public health research and the influence, however subtle, of more positivist theories, implicit in medical models and governance, remains.194

Finally, our review demonstrated how theoretical developments in how we understand disability have been recently influenced by other social movements, such as those associated with feminism, queer theory, intersectionality and critical race theory. However, the links between social justice theories and inequalities literature on poverty, although influential, have remained undertheorised, and the practical impact on the operationalisation of more evaluative methodologies used in public health remains small.

To summarise, our initial review demonstrated a variety of different models explaining disability, many of which are sensitive to time and place. Consequently, a historical or genealogical reading of these theories and models is important in understanding the evolution of these debates. During this evolution, it is rare for one model not to be influenced by, and to interact with, the other models. The medical model, for example, has successfully incorporated aspects of the more critical debates associated with the social model (see International Classification of Functioning, Disability and Health below). To this extent, any attempt to provide operational definitions can do little more than provide an ideal type. Nonetheless, these ideal types are a useful starting point in beginning to understand the (potential) connection of different models with public health interventions and research.

The medical model

A medical model of disability was the most discussed model in our first scoping review. This is perhaps not surprising, as the other three models were developed in response to the ways in which medicine has viewed disability. In essence, medical models see impairment as a consequence of some ‘deviation’ from ‘normal’ body functioning, which has ‘undesirable’ consequences for the affected individual. Impairment is seen as indicative of an underlying physical abnormality (pathology), located within the individual body, and medical treatment, wherever possible, should be directed at the underlying pathology in an attempt to correct (or prevent) the abnormality. Critics argue that this is a form of biological reductionism which views disability in terms of an individual deficit/problem that has to be fixed, rehabilitated or prevented rather than in terms of being generated by the social consequences of impairment.195,196 This tension has come to inform how the medical model has been debated.

Disability has tended to be theoretically conceptualised as a physical rather than a mental health problem, at least initially. There is also some debate about whether the medical model should be viewed as a transactional model or systems approach. Llewellyn and Hogan197 argue that a systems approach views development as ‘synergistic’ within the environment, whereas the transactional model understands development as a transaction or exchange between person and environment. These early understandings heralded the later influences of ecological models and the growing importance of science and technology studies in the sociology of health and illness. More recently, (bio)medical models have been used to consider obesity, smoking, violence, risky sexual behaviour and even climate change, but, as we shall see, they are rarely linked to theoretical (and more inclusive) discussions of disability.

The medical model could be seen as especially weak in conceptualising comorbidities or multimorbidities, which is at odds with the idea that many people will possibly experience various forms of impairment during their lifetime. Disability has been seen as an extraordinary, unusual, life-changing event and has often been viewed as an individual personal tragedy.198200 Oliver198 explicitly states that the medical model encapsulates both biomedical and psychological perspectives but that the ‘individual medical model’ has medicalisation as a key aspect. Barnes199 views rehabilitation and the norm of the able body as central to the ‘individual’ medical model and the way in which disability is understood. Nonetheless, most theoretical analyses of disability models, despite containing critical references to ‘a medical model’, do not always expound what they understand by it or reflect ways in which the model has changed.200

Early articles on health, which were informed by medical models, were nearly always linked to measurements such as the tacit models underlying health status instruments or the need for normative reference case against which deficits and deviations could be compared and measured.201 The earliest medical models were also linked to defining scales of measurement such as those associated with ‘quality of life’.202 When focusing on outcome measures for QoL, it was, however, rare for studies to consider environment, opportunity or disabling process.203,204 The focus tended to be on individual conditions, with little attempt to explore how disability could be socially generated.

In 2001, there was an attempt by the WHO to engage globally with disabled people and use their ideas to rethink medical care.35 The influence of the medical model remained, as evidenced by the continued refinement of the ICIDH, which is now known as ICIDH-2. The papers included in the scoping review do not reveal why the model espoused by the WHO became configured as ‘the medical model’, particularly when there was a conscious attempt to move beyond it.

International Classification of Impairments, Disability and Handicap

The WHO hired an external consultant, David Wood (University of Manchester), to develop an extension of the 1976 ICD157 to cover ‘chronic illnesses’ and to focus not only on impairments but also on their social and functional consequences.23,205 Although David Wood was mainly involved in classification, it was the sociologist Mike Bury and the public health epidemiologist Elizabeth Badley who attempted to understand the conceptual links between disability and handicap. This built on previous work, such as variations of the Nagi model,146,206208 which made distinctions between pathology (as disease), impairment, functional limitations and disability (as societal functioning), and the Quebec model, in which ‘handicap’ was viewed as an outcome of social creation.209,210 In many ways, revising the ICIDH-2 was a response to an ageing population and people with impairments living longer and having complex health needs.211 However, the ICIDH-2 tended to be less successful when trying to understand and incorporate models and outcomes of successful ageing, but was successful in developing a classificatory scheme linked to disability. For example, although medical advances enabled people with chronic illnesses to live for longer, a medical model struggled to adapt to their functional needs, as well as to the idea that QoL was equally social in nature.

The WHO’s ICIDH-2212 implies a causal relation between biological processes and social outcomes, whereby disease leads to impairment, which leads to disability, which leads to handicap. It focuses on disease but uses a threefold classification between impairment, disability and handicap, as follows:

  • Impairment: any loss or abnormality of psychological, physiological or anatomical structure or function.
  • Disability: any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.
  • Handicap: a disadvantage for a given individual, resulting from an impairment or a disability that limits or prevents the fulfilment of a role that is normal (depending on age, gender, social and cultural factors) for that individual.212

In the first scoping review, myriad applications of ICIDH-2 were found, especially in Social Science & Medicine. For example, there were several applications of the ICIDH-2 to understanding processes of ‘disablement’.213 Hartley and Wirz214 modified the ICIDH-2 in the development of a ‘communication disability model’, which could be used to positively influence the professional delivery of services. Bickenbach et al.215 argue that the UK social model or US civil rights minority model represented ‘models of disablement’, and that the ‘universalism’ of ICIDH-2 counted this. Other thinkers view the ICIDH-2 in a more pluralistic environmental sense, with a strong connection to ‘human ecology models’.216 Despite this, the use of the ICIDH-2 was largely classificatory, as evidenced by its use in the second OPCS national survey of disability.23,217 As such, it came under considerable criticism, particularly in how it continued to assume a causal link between impairment and ‘disability’, thereby enabling the conceptualisation of impairment primarily as an individual’s medical ‘problem’, which needed to be fixed or rehabilitated.218 This led to further refinement, in an attempt to capture the social construction of disability and the process of disablement.219221

International Classification of Functioning, Disability and Health

Responding to criticism by disabled people and the growing influence of a more social model of disability and the impact of environmental barriers (see A more social model approach below), the WHO commissioned a revision of the ICIDH-2.215 This revision attempted to bring together an individual medical understanding of impairment, with an acknowledgement, reflecting more social models of disability, that society disables:

Disability and functioning are viewed as outcomes of interaction between health conditions (diseases, disorders and injuries) and contextual factors . . . Among contextual factors are external environmental factors (for example, social attitudes, architectural characteristics, legal and social structures as well as climate, terrain and so forth), and internal personal factors, which include gender, age, coping styles, social background, education, profession, past and current experience, overall behaviour pattern, character and other factors that influence how disability is experienced by the individual.

World Health Organization222

Furthermore, according to the WHO:12

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).

World Health Organization12

The resulting ICF223 is typically represented in a visual diagram in which the functioning of the body or body part, personal activities and social participation are a central triad (Figure 3).222 Disability involves any dysfunction of impairments, activity limitations or participation restrictions. The arrows are bidirectional to indicate that components of health are interlinked and affect each other. This responded to the critiques of those advocating a more social model of disability, who question the linear relationships implied by the ICIDH-2.

FIGURE 3. The ICF (reprinted with permission from Towards a Common Language for Functioning, Disability and Health ICF, World Health Organization, 2002, www.

FIGURE 3

The ICF (reprinted with permission from Towards a Common Language for Functioning, Disability and Health ICF, World Health Organization, 2002, www.who.int/classifications/icf/training/icfbeginnersguide.pdf.)

Interventions can also be mapped on to this triad, as different interventions can be used for the body, personal activity or social participation. This is why the ICF is also known as the relational or ‘bio-psycho-social’ approach. The ICF also can be mapped on to interventions or preventions (Table 6).222 This is potentially useful to public health research, and this is an idea to which we shall return.

TABLE 6

TABLE 6

Intervention or prevention

The literature in our scoping review indicated that the ICF has been richly conceptualised in terms of comorbidities or secondary conditions.11 However, this has mainly been in terms of risk and a connection to rehabilitation. This is why Rimmer et al.11 argue that such models need to be interdisciplinary to work. However, Ravesloot et al.75 found that some categories of the ICF could be mapped on to behavioural change models used in public health promotion. However, they found that neither the ICF nor behavioural change models addressed the reasons behind how people would find ‘meaning’ when participating in interventions.75 The ICF also continues to be criticised by disabled people.23,71

Strengths

The ICF was seen in the literature to have a particular value when discussing policy.224 Advocates of the ICF have argued that it improves on the ICIDH-2217,225 by providing a scientific standard to inform national and international policies on disability at both an individual and population level. To this extent, the ICF has been successfully applied in a range of surveys such as by the WHO (health and disability) and the statistical office of the European Union (Eurostat) (disability and social integration).226,227 More generally, the ICF has contributed to studies exploring the prevalence of disability and its measurement,228 while also providing the opportunity for comparable data.

The ICF can also be used with other WHO instruments such as the ICD, Tenth Edition (ICD-10) and ICD, Eleventh Edition (ICD-11)229 and an ICF-CY230 specifically for children and youth. Üstün et al.,231 for example, argue that, although there are many ‘condition specific assessment tools’ (e.g. the Hamilton Rating Scale for Depression232) as well as ‘generic measures’ [i.e. Short-Form questionnaire-36 items (SF-36)], the ICF was specifically developed to counter these ‘data silos’. This is why the ICF is being used to reflect a global public health agenda [i.e. human immunodeficiency virus (HIV), malaria]. The ICF can also accommodate different outcome measures (technical, clinical or patient-oriented) and has ‘linking rules’ to illustrate how to connect health status measures to technical and clinical data or interventions.233 Cieza et al.233 explain that the strengths of the ICF are its standard terminology and definitions, an ability to disregard competing and condition specific instruments and the power to distinguish between outcomes and outcome measures.

Although the ICF seems complex in terms of the different ways in which it can be translated, the ways in which people use the ICF can be creative. For example, one study in the review examined the ‘capacity’ of people with psychiatric disabilities to work and measured the gap in terms of their current social participation.234 In this way, disability is viewed as an environmental construction. The application of the ICF to rehabilitation, in addition to its use globally to collect statistics (i.e. the UN’s Washington Group)235 and to monitor the CRPD, has been particularly successful.62,236 Bickenbach237 sees the ICF as a ‘bridge’, insofar as statistics are needed as indicators to monitor progress on global policy issues such the Millennium Development Goals and how nations are conforming to legal conventions such as the CRPD.

The link between the ICF and CRPD is not always welcomed by those who take a more critical approach to understanding disability (see A social model approach and Critical disability studies below). However, our scoping review revealed that those working within a more global perspective on disability rights have creatively connected theories such as Sen’s147,151 ‘capabilities’ approach to the ICF149,150,238 and, more recently, to social capital.239 Furthermore, the versatility of ICF can be seen as an attempt to link it with debates about inequalities or social determinants of health (SDHs),240 in addition to human rights instruments and social justice in global public health.241 However, our analysis suggests that among those broadly supportive of the ICF, there is uncertainty about how best to connect the ICF to the CRPD or other international instruments and conventions. Baylies242 argues that ideas about ‘participation’ can be used to locate the ICF within discourses of ‘rights, capabilities and human development’ and ‘environment’:

These new elements are specifically intended to link the ICF with the standard Rules on the Equalisation of Opportunities for Persons with Disabilities so as to provide, ‘an appropriate instrument for the implementation of stated international human rights mandates as well as national legislation’ (WHO 2001: 6). In acknowledging the legitimacy of a broadened discourse on disability in terms of rights, inclusiveness and participation, the ICF has enlarged the understanding of the nature of disablement, emphasising the crucial importance of context of the social and physical environment.

Baylies242

Our scoping review suggests that the potential of such an approach is still to be fully realised.226 Furthermore, tensions have emerged, particularly in terms of how clinicians, bureaucrats and disabled people expect the ICF to do different things. However, overall, the conceptual strength of the ICF is that it has the potential to move from a rehabilitative domain to one informing a broader approach to social welfare.

Potential weaknesses

Although the ICF is an attempt to transcend the medical model, it struggles to escape fully from its associations with it. A systematic review on the use of the ICF, for example, found that most papers were about clinical and rehabilitative use.243 Applications to public health research are rare, although when used it tends to emphasise a ‘functional’ approach to disability.213 The perceived association between the ICF and rehabilitation has become a particular social and political focal point in the disability literature for reasons that are not entirely clear. This is despite the links between ICF and CRPD.221,244 This might reflect a tension between aspiration and practical application. Although the ICF has a broad application,222 its implementation remains narrow. A particular and persistent criticism, for example, is that the ICF is predicated on norms and values that are still fundamentally disablist.

The ICF, despite having considerable influence on defining outcome measures, has been less successful in encouraging an exploration of what happens during an intervention and, in particular, in how measurement is linked to rehabilitation.38,245,246 A connected problem is the possible confounding of function (i.e. functional limitations or measures) with what it means to live healthily with impairment.38 This might have particular importance when discussing public health research. Activities of daily living (ADL) and measures of self-reported health such as SF-36 can, for example, confuse function with health.204 Moreover, the focus on the content of outcome measures entails comparisons. This can sometimes mean that response categories are taken for granted and not linked to conceptual critique.247 The relationship between health status, biopsychosocial and environmental functioning can, therefore, be unclear. In attempting to make sense of this, Bickenbach248 notes that the ICF is a classification system and neither an ‘assessment instrument’ nor ‘measurement tool’, despite being used as such. He argues:

Despite this, the descriptive qualifiers for Body Functions, Activities and Participation and Environment Factors were scaled, both qualitatively (No problem; Mild; Moderate; Severe; and Complete Problem) but also quantitatively (No problem = 1–4%; Mild problem = 5–24% and so on). Clinicians in the various rehabilitation professions and measurement theorists have developed assessment tools to measure specific Body Functions. Some of these have acceptable statistical properties, are reliable, and are widely accepted by professional communities worldwide. Other such tools have been developed for very local purposes –specific diseases, specialised clinical settings – often primarily designed to regularise professional remuneration or insurance pay-out in specific jurisdictions.

Bickenbach248

Bickenbach goes on to say that the ICF raises issues with the definitions of activity and participation:

The pattern is same: disability is a matter of the body, the person and the person in society. Hence the triads: impairment, disability, handicap (ICIDH and Quebec); and impairment, functional limitation, disability (Nagi). It stands to reason that in the ICF the pattern should be repeated, and it apparently is: Impairment, Activity Limitation, Participation Restriction. But there is a catch. The Activity and Participation classification ‘merges’ the two; or more correctly, the individual categories in the classification are both Activity and Participation categories. But how can Activity and Participation be conceptually different, but identical in terms of their list of categories?

Bickenbach248

Participation and personal factors are especially criticised for being undertheorised.23 The more critical literature suggests, for example, that the use of the ICF has neglected overarching structural issues, such as the links between poverty and inequality in the creation of impairment and disablement.242 The use of the ICF in employment fields is viewed as especially problematic, particularly given that disability is conceptualised as a barrier to valorisation.243 Criticisms, therefore, have focused on how the ICF has rarely been used to challenge or change policy to create a more enabling society in line with the CRPD or social model.23,242

There are also concerns that the ICD defines impairment as a variation from the statistical norm and that ‘an individual’s capacities are assessed against that of someone without a similar health condition (disease, disorder or injury)’.23 This raises broader concerns about what it is to be human221,249,250 and about the ability of the medical profession to define what is normal.251 Kras,252 for example, raises concerns about how public health interventions aimed at disabled people who have autism can become linked to ideas of ‘prevention’ and rehabilitation. Ginsburg and Rapp253 agree and argue that:

Most researchers who ‘count disability’ – demographers, statisticians, economists – are rarely in dialogue with scholars in disability studies, whose concern has been to show how ‘disability counts’ across a range of qualitative fields.

The plethora of visuals, decision aids and assessments associated with ICF is also seen as constraining creativity and innovation and encouraging a rather mechanistic, uncritical application.239 This is an especially telling critique given the points raised in the previous paragraph.

The recommendation of the WHO and the UN for the ICF to be a universal standard measure is not without its problems, especially given the criticisms of some disabled activists, who are keen to identify theoretical and conceptual weaknesses,254 while arguing that no consensus exists.39 Those working within more critical disability models argue that there can be no universally applied measures,39 and to think that there can be fails to acknowledge the way in which the ICF reflects a bureaucratic and medical approach divorced from the local sociocultural realities in which people live.255 The ‘universal’ approach has also been criticised for a lack of sensitivity to gender and ethnicity, in addition to its relationship to western scientific concepts and formulations.242,256,257 A more human rights-based approach is presented as possible means by which to overcome these difficulties.

The human rights model

Many of the criticisms highlighted above find specific and defined expression in alternative approaches to conceptualising disability. Despite having a long history,258 the human rights model has only recently assumed analytical importance in the context of disability. Nonetheless, it generated the second highest number of papers in our scoping review, taking various national and international forms.259 The model was initially linked to the 1948 Declaration of Human Rights.260 Early rights-based models were linked with the political movements of the time, such as civil rights,261263 feminism264 and children’s rights.265

Although international treaties incorporated ‘disability’ (see, for example, the 1976 International Covenant on Economic, Social and Cultural Rights266 and International Covenant on Civil and Political Rights267), most early discussions of rights were usually framed in terms of the need for national legislation that made discrimination a crime. Later policy documents such as those from the Disability Rights Commission97,268 and Human Rights and Equality Commission,101,102 supported a human rights paradigm, which eventually became enshrined in legislation in the USA and the UK. The US-based literature focused on the Americans with Disabilities Act (1990),269 while in the UK the legal rights of disabled people were enshrined in the Disability Discrimination Act (1995) which was later incorporated into the Equality Act (2010).28 In the Equality Act (2010),28 disability was regarded as a protected characteristic, against which discrimination, harassment and victimisation was illegal. The Act also established equality of opportunity and placed a public service duty on public sector organisations to foster good relationships between groups both with and without protected characteristics.

Historically, the 1980s marked the emergence of disability as a global issue. The International Year of Disabled Persons was marked in 1981, and in 1982 the UN published a World Programme of Action Concerning Disabled Persons.270 By the 1990s, which marked the start date for our scoping review, disability was firmly on the UN agenda and beginning to be mentioned explicitly by conventions such as the International Committee on Economic, Social and Cultural Rights in 1993. There were also mentions of ‘rights models’, with links being made to movements such as the global ‘right to health’ and the health activism of the 1990s and 2000s. There was a strong association of disability with biosocial identities and health inequalities.271 Our scoping review suggests that, from 2006 onwards, there was a gradual move from general discussions of civil and political rights to more specific discussions associated with the CRPD.272,273

Researchers and activists involved in the development of the CRPD advocated it use as an explicit ‘new’ human rights paradigm.274 This meant that research was moving towards a more encompassing, albeit critical, understanding of rights. Most countries have signed up to this international legislative instrument.

Conceptions of citizenship predicated on tacit rights-based approaches have been increasingly applied to understanding the difficulties facing disabled people.275 For example, the importance of active agency in decision-making by young disabled adults is discussed in the context of transitional care.276 Disability activists and academics have also taken up rights-based approaches, but this has not been without tensions, particularly among those who espouse a more ‘international’ disability approach12,200,277 and those who see rights-based approaches as failing to fully embrace emancipatory paradigms.23,71,278,279 Sayce and O’Brien280 argue that ‘rights’ represent both risks and rewards for disabled people, especially if they become medically defined or disconnected from practical outcomes (see also Sayce281).

Early work in disability studies and activism examined what a move from ‘needs based assessments’ to ‘rights based assessments’ would look when applied to independent living.282 Drewett283 concluded that, although ‘rights’ are presented as ‘fairer’ than the ‘needs-based character of welfare policies’, it is not clear how such an approach would change the delivery of health and social care. This is why some argue for legislative protection, alongside more inclusion in social life, which is informed by normative values and assumptions. For Rioux and Heath,260 quoting Quinn et al.,284 a more rights-based approach can be defined as follows.

Importantly, it means locating any problems outside the person and especially in the manner by which various economic and social processes accommodate the difference of disability . . . The debate about disability rights is therefore connected to a larger debate about the place of difference in society.

This quotation suggests a more fundamental tension between ‘recognition versus redistribution’,260 which has been identified by several authors.285,286 Concerns have also been expressed by the demands of both negative and positive rights. Although civil and political rights are understood negatively in terms of protection from discrimination, they do offer legal redress. Cultural and social rights are understood more positively, but, because they are often enforced through the ‘redistribution’ of resources, they become threatened in times of austerity.260,285,286

Strengths

Advocates view the CRPD as a rights outcomes approach which argues for the removal of barriers to allow both non-discrimination and participation in social life.272,273 Such an approach, which it is hoped will be embedded in legislation, brings together previous rights-based instruments, which encompass both social needs and political rights. Adopted in 2006, the CRPD is viewed as one of the most innovative and extensive human rights instruments.22 It contains over 50 articles and an optional protocol. The UK is a signatory to the convention and its optional protocol, which it ratified in 2009. The CRPD is conceptually linked to the ICF but it also ensures that the definition of disability remains dynamic by:

Recognising that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.

From Convention on the Rights of Persons with Disabilities, United Nations, © 2006 United Nations. Reprinted with the permission of the United Nations22

Health, for example, is mentioned explicitly in Article 25 of the UN CRPD,22 which states that:

State Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular parties shall:

a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes;

b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimise and prevent further disabilities, including among children and older persons;

c) Provide these health services as close as possible to people’s own communities, including in rural areas;

d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;

f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

From Convention on the Rights of Persons with Disabilities, United Nations, © 2006 United Nations. Reprinted with the permission of the United Nations22

Health is also closely linked to Article 26 (rehabilitation), as well as to other articles in the CRPD, such as Article 1 (respect for dignity); Article 2 (communication, respect for dignity, reasonable accommodation and universal design); Article 9 (accessibility, i.e. of medical facilities); Article 17 (protect physical and mental integrity of person); and Article 31 (statistics and data collection to inform policy). Intervention is linked to a right to health but also to minimising and preventing further disabilities. Article 25 begins with accessibility of care in terms of different gendered needs but is also inclusive of population health and a life-course approach. As such, it straddles both the need for prevention and duty of care and health across the life-course.287 In addition, the CRPD notes that inequalities exist in terms of accessibility and affordability of health care. Perhaps importantly, given the focus of this review, Stein et al.100 note that Article 4 means that states have an obligation to ensure accessibility to health care, which also includes research.

Inclusivity is at the heart of a rights-based approach to disability. Perhaps because of this, our scoping review revealed that much work explores the link between a rights-based perspective and those anchored in concepts of ‘human development’ or ‘capability’.242 Discrimination is specifically seen to prevent inclusivity. Article 2 of the CRPD notes how discrimination can be ‘political, economic, social, cultural, civil or in any other field’.22 Although there is some work linking the CRPD to the effects of discrimination and disablism,69,288,289 our scoping review suggests that this is rather undertheorised. Nonetheless, there is an opening up of debates about how and why certain bodies and people are included or excluded.253,290,291 Interestingly, our scoping revealed how some ethical arguments on research design are using human rights-based discourses to justify inclusion and mainstreaming of persons with disabilities and children. However, there has been less of a commitment to strengthening evidence and using this to change policy.292

Potential weaknesses

Most analyses of the impact of the CRPD identify non-enforcement as a problem. Evidence suggests that the CRPD has very little national ‘bite’ in terms of defined sanctions.99 Furthermore, the links between the CRPD and other legislative bodies such as the European Court of Human Rights remain unclear to disabled people.293 Conceptual difficulties have also occurred in the UK, where more medical models have been used to define adverse outcomes in legal judgements.293 Fraser Butlin293 notes that, semantically, the Equality Act (2010)28 seems to shift from a rights-based language to a welfare model that views disabled people in terms of ‘needs’ and, thus, by implication, as not contributing to society.

A frequent issue linked to the implementation and enforcement of the CRPD is how to understand what ‘reasonable accommodation’ means. This has particular implications for research. The way in which environments should be ‘modified’ to accommodate and ensure that disabled people can exercise their rights is open to interpretation.294,295 These difficulties equally apply to the Equality Act,28 despite the detailed descriptions of what reasonable adjustments contain; consequently, innovation remains a problem, particularly when the CRPD is seen as a defined and unreflective instrument.296 Inclusion tends to be defined in relation to access and, ignoring diversity among people with disabilities, assumes a universal research design will solve problems for all. Young and Quibell297 argue that, for some categories of impairment such as intellectual disabilities, a rights-based approach is never sufficient. They note that having entitlements to rights and citizenship may not change social and political exclusion or ensure justice.297 Furthermore, the legal status of people with fluctuating impairments or conditions or comorbidities is ignored.298

Underpinning these critiques is a more fundamental questioning of the ontological and epistemological foundations of rights and personhood. Such philosophical debates are outside the scope of the review, but the policy consequences are not. Silvers299 calls for a much stronger link between the legal status of ‘disability’ and ‘real justice’. The legislation of disability can also be viewed as a challenge to the unity of the model.300 Barral301 notes that both user-led activism and European Union policies have led to the proliferation of rights-based frameworks. Like Meekosha and Soldatic,302 Barral is concerned that if these are imposed on people, they can become a form of colonisation in which the interests of the state take precedence over the rights of the people.301 Despite these misgivings, there has been a move towards the development of standard indicators linked to rehabilitation, health and the CRPD.303,304 This could be indicative of the lack of an ethical framework. Likewise, Lawson296 argues that, although the public sector has an equality duty to involve disabled people, they can just as easily slide into tokenism or even abandon such processes without an obligation. Isaac et al.305 note that disability mainstreaming in terms of rights is viewed as a ‘responsibility’ for others and this can have paternalistic overtones. Although the CRPD can be used to advocate for individuals, its use can also be seen as having to ‘protect’ and ‘safeguard’ individuals rather than to ‘enable’ environments. There is a danger, therefore, that, despite the CRPD, disability will still be framed as a ‘problem’ of the individual. This suggests a continued role for the more established social model of disability.

A social model approach

Papers included in the scoping review, regardless of whether they are for or against a social model of disability, were widely seen as foundational to disability studies and advocacy.198,306309 A social model of disability developed from the experiences and activism of disabled people in the UK from the early 1970s onwards. It was also heavily influenced by activists in the USA and the independent living movement. It countered an individual medical model that viewed disability as a problem of/or caused by impairment, which had individual consequences (see The medical model). It also reclaimed the experience of disability from the expertise of health-care professionals and social workers.199,310312

Disabled people’s activism was founded on the rejection of professional control over their lives. Barnes313 explains how up until the late 1960s, ‘severely disabled people’ did not have access to disability-related welfare and their only options were residential care or ‘poverty and social isolation in the community’. Welfare entitlements, for example, existed only if a person had gained injuries through employment-related activities. In the UK, therefore, early activism was linked to ensuring economic welfare and attracted key disability activists, including Paul Hunt, Vic Finkelstein, Ken Davis and Maggie Hines.310,313 All were founders of the Union of the Physically Impaired against Segregation (1976) and were committed to the idea that impairment did not ‘disable’; rather they argued that:

It is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.

Union of the Physically Impaired Against Segregation314

These insights were primarily taken up and further developed along materialist and Marxist lines by Vic Finkelstein,315 Mike Oliver72,316 and Colin Barnes.313,317 According to Oliver:

This new paradigm involved nothing more or less fundamental than a switch away from focusing on the physical limitations of particular individuals to the way the physical and social environments impose limitations upon certain groups or categories of people.

Oliver318

Disability is thus understood as a form of social oppression generated by barriers, (dis)ableism and exclusion from social life.23 This interpretation has changed over time in accordance with disabled people’s activism for social change and inclusion.

Early studies focused on barriers in the physical environment and disablement in social life. This changed by the early 2000s, when key thinkers began questioning the dualism between impairment and disability.307 Goodley319 argued that intellectual disabilities were socially constructed. Shakespeare and Watson stated that disability was caused by bodies (biological and social), as well as by restrictive social barriers.307 Interesting debates occurred among key thinkers,279,308,309,320 with a concern to make the social model more ‘relational’, and an emphasis on innovation and dynamism.72 These discussions moved the social model in interesting directions, such as conceptualising what a sociology of disability would look like; the concept of ‘impairment effects’;309,320 psychoemotional disablism;69,321 and intersectionality with chronic illness and gender.131 Despite this, the social model maintained its importance in unifying people to ‘fight’ against social oppression.322,323

Strengths

A perceived strength of the social model is that it is socially and politically located in disabled people’s movements and activism for social change.310,311,324 It also put disabled people in control of their own lives. Research, for example, was encouraged to follow paradigms of participation, coproduction and/or emancipatory research.23,198,278,325 Furthermore, the social model is regarded as accessible, as it is based on a simple premise of using people’s experiences of exclusion or disablement, to enable them to make the connection between removal of barriers and fight for equality with greater justice in society as a whole. This is why Beresford326 describes the understanding of the social model as a ‘light bulb’ moment for disabled people.

A historical understanding of capitalism as linked to the ‘working’ body was initially fundamental when making sense of the social model. The materialist basis of the model led to work on understanding capitalist modes of production and their relationship to structural inequalities and social exclusion.312,316,327329 Not being able to contribute or sell one’s labour in a capitalist system often meant exclusion from social life, which is why social models advocated ideas such as independent living, the right to work and a shared ‘disability’ culture.313,316,328 Access to meaningful work remains at the heart of the social model,330,331 as does rethinking disability in positive terms. Swain and French332 and Swain et al.333 argue that the social model should be moving towards an ‘affirmative model of disability’ that celebrates impairment and disability. Celebration of impairment and disability culture lies in direct opposition to more (bio)medical understandings of impairments which states that they should be intervened in, prevented or cured.

A positive framing of disability has also led some authors to rethink a capabilities approach.242,334 Burchardt,334 for example, emphasises the commonalities between a capabilities framework and the social model in terms of how they view ‘social barriers and individual limitations, the importance of autonomy and the value of freedom, and dissatisfaction with income as a measure of well-being’. She explicitly connects social justice with a focus on how a capabilities approach can lead to combating poverty and social, economic and political exclusions.334 These arguments have become increasingly influential and also connected to rights-based approaches, although the use of a capabilities approach, within social justice frameworks, has come under considerable philosophical criticism, particularly in terms of the potential neglect of the ethics of caring relationships and the construction of mutual dependency.335338 It remains to be seen how influential the more socially oriented capabilities approach will become.156

Nonetheless, the emphasis on capabilities is illustrative of how the social model can be flexible and innovative, in particular in the way in which it views intersectionality and how disability might vary across the life-course. Attempts to understand multiple discrimination or simultaneous oppression is evidenced by linking gender, ethnicity and disability to explain the high incidence of schizophrenia among Afro-Caribbean populations in the UK. Some of the more interesting theoretical directions and possible renewal of the social model339 have come from movements generated by social model activism, such as that associated with the ‘psychiatric system survivor’ movements326 and newer forms of activism linked to ‘neurodiversity’340,341 and ‘madness and distress’.342 The ‘neurodiverse’ movement,343 for example, argue that they provide a bridge between the social model and psychiatric survivors.341 The movement began in the 1990s with people with autism spectrum conditions, dyslexia, dyspraxia and attention deficit hyperactivity disorder (ADHD), and it argues both for the social acceptance of their conditions and a recognition that such conditions are ‘real’.344 The movement tends to be antinormalisation and sensitive to medical pathologisation.

The social model is able to adapt to changing circumstances and is particularly adept at being able to absorb criticisms and use them to develop more nuanced and sophisticated applications. However, the scoping review also reveals that later innovative theoretical thinking has struggled to impact on political action. This is how strengths can become weakness, as the constant theorising of a model could be seen as failing to generate social action. For example, the social model, although incredibly influential in developing the ICF and CRPD – at least at the conceptual level – has struggled to ensure that a rights-based approach becomes connected to emancipation.

Potential weaknesses

Various critiques of a social model of disability have risen to prominence since the late 1980s. Many of these have developed from within the social model. More fundamental critiques centre on the ontological and epistemological neglect of ‘the body’. Several authors have questioned the basis of ‘impairment’ as purely biological by arguing that impairments are socially constructed, personal and limiting. For example, the social model is seen to struggle to explain where the social and medical overlap, for example in, the physical and psychological pain of impairments. This is why Shakespeare and Watson307 argued that disability is caused by bodies (biological and social) as well as by restrictive social barriers (see A social model approach).

The political framing of ‘disability’ as an inclusive category, in the sense that it posits a political and affirmative disability identity, has also been queried. Disabled people, for example, have questioned the democratic framing and inclusion of ‘diversity’ within a social model, particularly groups such as d/Deaf, those with intellectual disabilities, those with mental health issues and those from neurodiverse categories. Individuals categorised into such groups may not view themselves as ‘disabled’ or adhere to an idea of biological ‘impairment’. For example, d/Deaf people see themselves as having a unique minority group culture,345 and war veterans may prefer to view themselves as ‘war-wounded’ rather than ‘disabled’.346 Other aspects of a person’s identity, for example in terms of ethnicity or lesbian, gay, bisexual and transgender identity, may be more ‘positive’ and affirmative in an activist or social movement framework than a disability identity (see Corbett347). Disability, therefore, might not be a primary factor in the construction of a person’s identity. Deaf culture, for example, assumes a primary Deaf identify and struggles to accommodate those who wish to express different aspects of who they are, such as their ethnic and cultural identity.348 More general critiques emerging from feminism,119,349,350 critical ‘race’ theory,351 and cultural studies352 further reflect this and have partly led to the development of CDS,353,354 although, as Priestley355 notes, these positions and theories do not necessarily negate the social model but can be incorporated within it.

Another strand of criticism has focused on the extent to which ‘disability’ can be ‘fixed’, particularly given that the boundaries between disabled and non-disabled are fluid. This has led Goodley319 to question the epistemological framing of a social model. The conceptual difference between impairment and disability is thus seen as reinforcing the Cartesian dualism of the body and the mind that is implicit in biomedicine and the medical profession.356 In particular, Shakespeare and Watson307 have argued that the social model has become an outdated ‘ideology’ and the dualistic distinction between ‘impairment’ and ‘disability’ cannot be upheld.

Finally, there is an inbuilt hierarchy within the social model that prioritises activism and emancipation that is controlled by disabled people themselves rather than by their allies. Political activism and emancipation by disabled people can be viewed as a strength69,313 but can simultaneously alienate allies and make it difficult to establish links with other social movements.200,307 Furthermore, a degree of moral policing can occur, with attempts to establish an agreed orthodoxy which can be difficult to challenge.121 This is the starting point of CDS, which offers a more fluid approach.

Critical disability studies

Critical disability studies is a more recent development. It is also difficult to define, and the boundaries between CDS and the social model are especially blurred.357359 CDS is informed by postmodernist and poststructuralist perspectives, such as those offered by Foucault360 and Derrida,361 which question the foundations of concepts such as ‘impairment’ and ‘disability’. This allows for considerable flexibility. In addition, CDS argues against an overarching ‘biomedical’ understanding of disability, focusing instead on the cultural and linguistic construction of ‘disability’ and disableism.312 It can, however, take on ideas of emancipation or rights-based approaches, although this does not necessarily mean that everyone working within CDS associates with these ideas.

Advocates of CDS argue for a conceptual ‘paradigm shift’,362 which questions the dualism of impairment and disability. CDS is also strong on intersectionality and has links to, for example, critical ‘race’ theory.363 Critical realism is central to understanding CDS,364 although there is little agreement on what this might mean in practice. Consistent themes, however, include disregarding naive realist/empiricist approaches355,365 and a focus on viewing an individual as simultaneously being part of biological, psychological and social worlds.366,367 Meekosha and Shuttleworth368 argue that CDS is about rethinking how disabled people become marginalised by using critical social and cultural theory, although in their case, this is aligned with an ‘emancipatory focus’. For Meekosha et al.,369 critical engagement consists of:

the irreducibility of the social to empirically derived ‘facts’; (2) the necessity to link theory with praxis; (3) a reflexive awareness of the historical development of our own thinking; and (4) an openness to and dialogical engagement with ideas emerging from diverse cultures.

Critical disability studies aim to reframe the ‘disabled bodies/minds along the lines of capacity, potential, interconnection and possibility’.370,371 CDS has been especially influential in discussion about the origins and operation of ableism and normative assumptions about a functional body, the connection between sexuality and disability, including queer studies, and ‘mad studies’.372,373 ‘Mad studies’, for example, is an ‘umbrella term’ bringing together critiques of psychiatric diagnosis and interventions with ‘survivor’ movements374,375 to argue for more equal representation and involvement in health policy and practice, thereby politicising a need for not only user involvement but control and representation.376,377

Strengths

Critical disability studies covers many critical theoretical developments, which offer alternative ways of viewing disability. Questioning existing assumptions, for example on the site of the body, is probably one of its important strengths.378 CDS is not incompatible with rights-based approaches, and many thinkers remain committed to emancipatory activities302 and, in particular, disability justice,379 in which impairments function as sites of moral blame and shame linked to health inequalities. There has been a recent stream of critical thinking around the norms and values of neoliberalism, the measures being used to ‘count’ disability and what it means to be able-bodied.380 For example, Jain,381 Puar382 and Fritsch383 examine differences between affect, debility and capacity. They examine the diffusion of the category ‘disability’ and its construction in terms of ‘variability’ and ‘risk coding’381 or as ‘anticipatory’ in terms of a ‘debility’.382 There are also some interesting applications of CDS that are relevant to public health approaches. These include understanding power dynamics, reconceptualising embodiment as fluid rather than binary, rethinking ‘intersectionality’ in political terms and ensuring a ‘critical’ perspective in how ‘disability’ is constructed.

Potential weaknesses

Although CDS can contribute to our critical understandings of disability, criticisms have invariably concentrated on its refusal to define ‘disability’, its poor link to policy change and its apparent inability to include disabled people in its more theoretical debates. Furthermore, CDS can be so diffuse that it can mean almost anything.384 When thinking about explicit links to public health and interventions, for example, the constant emphasis on the ‘critical’ runs the risk that evidence is continually deconstructed and rendered unreliable. CDS, therefore, is in danger of leaving a ‘waste-ground devoid of meaning’,385 although ideas such as ableism373 or ‘sanism’375,386 can provide some counter to this by offering the opportunity to rethink interventions to ensure that they do not impose able-bodied or mental health norms. The CDS relationship to ‘rights’ can also be problematic,302 and this explains Shakespeare’s277 attempts to generate ‘a social relational’ model linked to international and institutional understandings of disability.387

The increasingly specialised language of CDS does not make it especially accessible to disabled people. There is no ‘light-bulb’ moment (see A social model approach) and, as such, CDS is vulnerable to the criticism that it is controlled by a small number of intellectual elites. CDS has struggled to unify disability or rights-based activists or mobilise research to ensure real policy changes or activism. This gives some credence to those who have argued that a focus on theory and the cultural construction of ‘disability’ takes away from the analysis of economic norms of production and political activism.313 There are also concerns that a focus on the body will lead back to the biological essentialism of a medical model and negative ascriptions of disability as akin to disadvantage and deviance.313,388

Conclusion

The scoping review revealed that theories and models are rarely used in a ‘discrete’ way but rather create a broad ranging and often polemical debate with no fixed point of reference. This is the first challenge facing those who wish to connect public health research with more inclusive approaches to disability. The different models are presented in perhaps a more static or idealised fashion than is the case in practice, although this was a conscious choice to make the models accessible and to highlight their main thematic elements. The medical model, for example, has changed considerably over the years and has been refined to take account of ongoing critique. Debates, therefore, are dynamic, interdisciplinary and engage with each other, creating fluidity, which is sensitive to practical applications and theoretical development. Current theory, for example, has become more sensitive to the life-course as different elements of identity, belief systems and definitions of disability struggle for predominance.

This flexibility is reflected in how research on disability has been conducted, although the more social models and CDS seem to have had less influence on public health research than, say, the ICIDH-2 or ICF. The ICIDH-2 and ICF are, of course, more closely aligned to the study designs on which evaluations of public health interventions are based. This perhaps explains the interest of public health research in measurements of disability and a movement towards amalgams of definitions based on models or combinations of models so that they are more inclusive of variations in impairment across the life-course.64,172 There would, however, seem to be less interest in this in theoretical development and the more critical approaches to disability. This creates potential tensions. The need for standardised, comparable measures of disability could be in conflict with the diverse experiences associated with disability and fail to accommodate intersectionality, the impact of the life-course and fluctuating conditions. Experience and skill are needed to apply the nuances implicit in many models, and the historical struggles of public health to engage with more critical approaches to disability might make this problematic.

Public health research is not alone in finding it difficult to reflect disabling experiences. The scoping review, although demonstrating how most models are developed in opposition to ‘a medical model of disability’, also provides evidence about its residual influence. The ICF, for example, could be seen as a classificatory, administrative model that attempts to ensure that medical norms have a more social meaning.12,389 The scoping review, however, found little evidence of a connection between this arm of the WHO and the WHO plan of action on the SDHs.390 Our scoping review in particular indicated that measurements of disability are not especially well aligned with definitions of disability found in various paradigms and theories. Examples include the environmental creation (prognosis) of impairment effects, sociocultural barriers to health-care access or how disability discrimination and disablism increase exposure to social determinants of poorer health.15,289,391,392

To address the commissioning brief, we need to be able to translate the models and theories to work practically in the evaluation of public health interventions. Only the ICF has been easily explained and applied to differing contexts. This perhaps explains its popularity. To focus on only the ICF, however, would ignore the detailed and sophisticated critique of its use and the value of other models outlined by the scoping review. Consequently, an important next step in our analysis is to think about how different models could be visualised, applied and used to critically evaluate interventions in line with various definitions of disability and their measurements. We also need to connect with the theoretical approaches used in public health. We realised, therefore, that it would be useful to define what a public health of disability should look like and to try to link together definitions of disability and public health. This is unlikely to provide a definite answer, but, in keeping with our iterative intent, contributes to a more reflexive framework that has a range of options with which public health research could engage.

Copyright © Queen’s Printer and Controller of HMSO 2016. This work was produced by Berghs et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Included under terms of UK Non-commercial Government License.

Bookshelf ID: NBK378951

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