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 Sobre a Deficiência Visual

Understanding Disability

Poul Rohleder, Stine Hellum Braathen and Mark T. Care

A parábola dos cegos - Cornelis Massijs/Corneille Metsys (c. 1545)
 A Parábola dos Cegos | Cornelis Massijs/Corneille Metsys (c. 1545)

 

Abstract | This chapter explores the various theoretical approaches to understanding and defining disability. It focuses on giving a critical outline of four of the major explanatory models for disability: the biomedical model, the social model, the psychosocial model and the biopsychosocial model. The chapter includes some exploration of different cultural and contextual factors that may influence disability and sexual health issues, including some discussion of disability in relation to living conditions and experiences in different contexts. The medical model understands disability as resulting from an impairment, which in turn is caused by an underlying biological disorder, disease or deficit. As with other theorists criticising the social model of disability, Marks argues that the social model of disability excludes people's subjective experience from its analysis of disability. The cultural perspective, extensively covered in the field of cultural disability studies, tends to move away from economic questions while focusing on the cultural representations of disability.


What do we understand by the term ‘disability’? This may seem like an odd question to many unfamiliar with disability studies. It may seem obvious to such readers what ‘disability’ means, or why we may refer to someone as ‘disabled’, and what makes them disabled. But this is not straightforward, and if we look more critically at our understanding of ‘disability’ we will see that this very much depends on where the experience of ‘disability’ lies, from which perspective and in which context. Is a person who makes use of a wheelchair ‘disabled’ because he or she makes use of a wheelchair in and of itself, or are they disabled because they face stairs that prevent them from accessing a space? Is a person who is blind ‘disabled’ because they cannot see, or are they disabled because they cannot access written information? Is an individual who is deaf ‘disabled’ due to the hearing loss, or because most people are unable to communicate with them in sign language? Is a white individual with albinism as ‘disabled’ as a black individual with albinism? Much of our understanding of disability involves a comparison to the ‘norm’ – we understand ‘disability’ as distinct from ‘ability’ – distinguishing what is the ‘abnormal’ body from what is the ‘normal’ body. However, it is more than just comparison to the norm (because the ‘norm’ after all is average); it is what comparatively is seen as ‘sub-normal’ as opposed to the norm and the ideal (above normal); and so ‘disability’ equates with undesirable deviance. Where the boundaries of these concepts are, is not clear-cut. There is also not one unanimous understanding of what causes disability. Many readers may say that it is a result of a medical condition or biological impairment. Others might say that disability is the experience of social and environmental barriers to equal access; still others will understand disability as ‘the will of God’, ‘karma’ or a spell.

As readers will hopefully see in this chapter, ‘disability’ is a complex, dynamic, multidimensional and contested concept (WHO & World Bank, 2011). This is not just a theoretical matter or concern; it is also political and personal. This chapter will explore the various theoretical approaches to understanding and defining disability. There are numerous theoretical models for understanding disability and it is beyond the scope of this chapter to look at each one of them. This chapter will primarily focus on giving a critical outline of four of the major explanatory models for disability: the biomedical model, the social model, the psychosocial model and the biopsychosocial model. For a fuller outline of the various theoretical models, readers would do well to read Goodley’s (2011) excellent introduction. In this chapter we will also include some exploration of different cultural and contextual factors that may influence disability and sexual health issues, including some discussion of disability in relation to living conditions and experiences in different contexts (low-, middle- and high-income contexts) and countries (with different laws, policies, structures and health care systems).


‘Disability’ as a moral tragedy

Disability has always been part of the human condition, and all societies have complex belief systems and practices related to health and disability (Groce, 1999; Gronvik, 2007; Kleinman, 1980; Kleinman & Benson, 2006; WHO & World Bank, 2011). Throughout history people with disabilities have been subject to hatred, curiosity, fascination and sympathy, they have been made exotic, pitied, patronised, ignored and admired (Goodley, 2011). We have mostly tended to see ‘disability’ as a tragedy and historically many societies have arrived at supernatural, spiritual and religious explanations for the ‘tragedy’ of disability (Goodley, 2011).

Such explanations typically take a moral position towards understanding disability, where disability is seen as a divine punishment for sin, evil or a failure of faith (Goodley, 2011). The presence of a disability brings shame to the individual and their family as the public stigmata of their immorality. From this perspective, disability can also be cured by divine intervention. The problem of ‘disability’ here lies within the individual (his or her moral character specifically), who needs to be fixed and made right. For example, Hindu scripture teaches that the cause of human suffering is due to wrongs committed in a past life, known as karma. Under this system, disability is primarily seen as a result of fate, or kismet, in areas where such beliefs predominate, such as rural India. Although disability as a consequence of fate is often accepted as a punishment for misdeeds, Mehrota (2008) notes that this does not stop people with disabilities from seeking out pseudoscientific as well as medical cures. Moreover, belief in divine causes of disability may lead to people without disabilities engaging in rituals to ward off the possibly of becoming disabled. The commonality in these approaches is that disability is seen as something to be cured and not adapted to. In fact, these cultures may have a long tradition of marginalising people with disabilities through oral histories and folk songs (Mehrota, 2008).

However, this ‘moral’ model is not lost to history. For many cultures, it is still a dominant conceptualisation. Understanding of disability may also involve concepts about evolutionary progress and development. Baynton (2013) observes how along with conceptions of ‘normality’ and disability, are evolutionary ideas about progress, with the ‘sub-normal’ thus seen as an evolutionary step backwards. Moral ideas can come to play here, with people with disabilities historically often being seen as ‘defective’ and ‘primitive’ and thus their treatment as sub-human was seen as justified. Some of the moralising aspects of such perspectives still prevail, as can be seen by the contemporary discourse in the UK (and elsewhere) of the moral neo-liberal citizen, with discourses contrasting those moral citizens who contribute to society and the immoral ‘scroungers’ who do not (Garthwaite, 2011). Or where barriers to achievement for people with disabilities are seen as only because of a ‘bad attitude’ (Young, 2012). Those with visible, severe disabilities may be excluded from this as charitable cases.

What at first was regarded as a moral tragedy, disability in recent decades came to be seen as a medical tragedy. The development of what has come to be known as the medical model of disability for many years dominated our understanding of disability.


The medical model of disability

In more recent history disability has been seen as a medical condition, defined through a biomedical model, which focuses on impairment (Gronvik, 2007; Officer & Groce, 2009). The medical model understands disability as resulting from an impairment, which in turn is caused by an underlying biological disorder, disease or deficit. This was once the model adopted by the World Health Organization in their definition of disability as “any restriction or inability (resulting from impairment) to perform an activity in the manner or within the range considered normal for a human being” (WHO, 1980, p. 1). As with the ‘moral’ model, the medical model also offers an individualistic understanding of disability, referring to deficits in the body, something missing in the individual: a limb, an organ or a mechanism in the body (Finkelstein & French, 1993; Harpur, 2012; Officer & Groce, 2009; Shakespeare, 2014; Shakespeare, Iezzoni, & Groce, 2009). As Edwards (1997) pointed out, the medical model characterises disability as intrinsic to the individual, resulting from impairment and is context neutral. In this model, the disabled individual suffers a medical tragedy that could be ‘fixed’ by means of medical intervention. The disabled individual is alterable, while the assumption is made that the environment remains fixed (Barnes & Oliver, 1993).

It has been argued that the medical model is backward-looking and reactionary (Shakespeare, 2014), with its lack of focus on social factors, such as discrimination, prejudice and inaccessibility (Officer & Groce, 2009), and as such has contributed to the oppression and marginalisation of people with disabilities (Bricher, 2000; Officer & Groce, 2009; Thomas, 2004). Practitioners of Western biomedicine have traditionally, and often continue to, reinforce the medical model of disability through their medical practice (Bricher, 2000; Gronvik, 2007), focusing on causes, consequences and treatment of the disabling conditions (Gronvik, 2007; Shakespeare et al., 2009). One must not forget, however, that people with disabilities do have health conditions and can often benefit from medical care.

The main limitation to the medical model lies not in its focus on medical conditions, but rather in its lack of focus on structural issues that contribute to disability, such as poverty, environmental barriers and social exclusion (Shakespeare, 2014; Shakespeare et al., 2009).

As a result of these criticisms, the past decades have seen a shift from disability viewed as a personal predicament, as in the biomedical model, to a more critical perspective, where disability is viewed as a social, cultural and political phenomenon (Goodley, 2011).


The social model of disability

In the 1970s, disability activists, particularly in the UK, began to challenge the individualistic, medical understandings of disability. One of the most influential disability groups at that time, the Union of the Physically Impaired Against Segregation (UPIAS) was most vocal in challenging the medical model of disability, stating that “it is society which disables physically impaired people. Disability is something that is imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from the full participation in society” (UPIAS, quoted in Barton, 1998, p. 56). This definition was developed further by disability academics, particularly Oliver (1986, 1990, 1996), to what has come to be known as the social model of disability. This model sees disability as a social construct, with physical and social barriers leading to lack or loss of opportunities preventing people with disabilities from taking part in everyday life on an equal level with others (Finkelstein & French, 1993; Harpur, 2012; Shakespeare, 2014). So, for example, a person with a physical impairment who makes use of a wheelchair, is disabled when they face an inaccessible building where stairs are the means of access. Or a person who is deaf, is disabled when they can only access specific information in audio format. From this perspective, disability is seen as a form of social oppression, where disability is understood as representing the “social, financial, environmental and psychological disadvantages inflicted on impaired people” (Abberley, 1987, p. 17). This arises from a social environment that is constructed by non-impaired people, and constructed in their interests (Abberley, 1998). People with disabilities may also face social barriers, resulting from social stigma and negative representations in the media (see Chapter 3 for a brief discussion in relation to film). In relation to the topic of this book, such stigmatising representations may be that of people with disabilities as non-sexual and undateable. According to the social model, it is not the individual that needs to be fixed and altered, but rather the social and physical environment that needs to be adjusted in order to meet the needs of persons with disabilities.

While the medical model is seen as having contributed to the oppression and marginalisation of people with disabilities, the progressive social model has been assumed to involve and empower people with disabilities (Bricher, 2000; Officer & Groce, 2009; Shakespeare, 2014; Shakespeare et al., 2009; Thomas, 2004). The limitation to the social model, on the other hand, lies in its lack of focus on the impact of impairment on disability (Thomas, 2004). Some theorists (Hughes & Paterson, 1997; Shakespeare & Watson, 1997) have criticised the social model of disability for excluding the lived experience of impairment. As argued by French (1993a, p. 17): “I believe that some of the most profound problems experienced by people with certain impairments are difficult, if not impossible, to solve by social manipulation.” French distinguishes between her blindness, which she argues should be conceptualised as impairment, and her lived experience of disability, for example due to the availability of literature accessible largely to sighted persons. It has also been argued that the social model, with its origin in physical and sensory impairments, to a large extent neglects issues relevant for people with psychosocial and developmental disabilities (Chappell, Goodley, & Lawthom, 2001). Adding to this, the social model has been criticised for being too general in its approach to the human experience that disability is, with too little emphasis on the individual, contextual and cultural variations that shape these experiences (Dewsbury, Clarke, Randall, Rouncefield, & Sommerville, 2004; Shakespeare, 2014).


The psychosocial model of disability

As with other theorists criticising the social model of disability, Marks (1999a, 1999b) argues that the social model of disability excludes people’s subjective experience from its analysis of disability. She develops a psychosocial model of disability by arguing that ‘disability’ involves a relationship between the environment and the body as well as the person’s psyche. She insists that “disability does not reside in a particular body or environment, but rather is an embodied relationship” (Marks, 1999b, p. 611). In theorising the psychological aspects of the model, she draws predominantly on psychoanalytic theory to argue how prevailing negative stereotypes and social and cultural oppression of people with disabilities are internalised by the person with disability to become an embodied experience. In psychoanalytic theory ‘internalised oppression’ (like internalised homophobia) can be read by some as pathologising, in that it places the ‘problem’ of oppression in the internal psychology of the individual (Russell & Bohan, 2006). Oppression of course, exists in the external realities, but the usefulness of this psychosocial approach is that it allows us to understand how these experiences can be incorporated, or indeed rejected, by the individual, shaping their sense of self.

Marks (1999a) provides a review of the historical representations of persons with disability. For example, she refers to the representations of superstition and divine punishment with regards to persons with disabilities during the Middle Ages (see above discussion on the moral model of disability). In later years, people with disabilities were exhibited in public shows as ‘freaks’ and objects of curiosity – the ‘Elephant Man’ being a famous example of this. She also refers to the disturbing history of eugenics, euthanasia and even the systematic murder of people with disabilities during the 1940s in Nazi Germany. Marks uses these examples to illustrate the fear and revulsion often expressed towards people with disabilities, seen as subhuman monsters. Thankfully, we do not live in those times anymore, but what she argues is that the response (often unconscious) of fear, deformity and monstrosity towards many people with disabilities still prevails. This is evident in the prevalence of everyday hate crimes towards persons with disabilities.

Drawing on psychoanalytic theory, Marks (1999a) and others argue that unacceptable parts of the self, such as the notion of dependency, physical imperfections and damage, helplessness and vulnerability, may be disavowed or split off by the person without disabilities, and located in the person with disability (Marks, 1999a; Shakespeare, 1994; Watermeyer, 2013). In psychoanalytic terms, this process of disavowal is done in an attempt to protect the self against such threatening aspects of human experience. As Marks (1999a) and many others argue, we live in an increasingly narcissistic culture, where individuals strive for perfection, independence and achievement. As Shakespeare (1994, p. 297) states, persons with disabilities “remind non-disabled people of their own vulnerability”. There is a denial or disavowal on the part of people without disabilities of their physical vulnerabilities and mortality, which is then projected onto people with disabilities who come to represent this vulnerability, becoming “dustbins for disavowal” (Shakespeare, 1994, p. 283). Watermeyer (2006) points out how we have all at some stage of our lives had experiences of vulnerability, dependence, shame, rejection, inadequacy and feeling undesirable, ugly and unacceptable. He goes on to argue that “by constructing and regarding disabled people as broken, damaged, defective and dysfunctional, members of the broader nondisabled society are able to reaffirm and reinforce an identity of being the opposite of those unwanted characteristics” (Watermeyer, 2006, pp. 33–34). Marks (1999a, p. 25) notes “denigration and exclusion as the two key forms of psychic oppression suffered by disabled people”, which are then internalised by some people with disabilities and impact on their self-esteem, and may often keep people with disabilities submissive. Sinason (2001) refers to a “secondary handicap” that occurs, which she refers to as the “defensive, extra-handicapping that comes from the emotional pain at being different”; of being the “other” (p. 2). According to these theorists, the person with disability can be locked in a dynamic interrelationship with others who do not have disabilities in an attempt to manage the anxieties that the disabilities cause. In sociology, this is similar to what Goffman (1963) refers to as the management of a stigmatised identity. French (1993b) provides a good personal example of this: She describes how family members would anxiously try to get her to see things, to see a rainbow, for example. This she felt was out of an attempt to manage their own fear and anxiety with regards to her increasing loss of colour vision. She describes how she eventually attempted to alleviate others’ anxieties, by declaring that she could see, denying the fact that she could not.

In contrast to the sort of denigrating process of projection described above, psychoanalytic theory has also been useful in describing the idealisation of persons with disabilities as a defensive process (Marks 1999a; Watermeyer, 2013). In idealisation, the unwanted fears and underlying denigration are defended against by a process of idealisation where the disabled person is attributed with excessive positive aspects and admiration. There are many instances where we are called to admire the achievements of people with disabilities and how they have overcome their personal tragedy. This idealisation can be seen in the everyday prevalence of what some have termed ‘inspiration porn’, where stories of ‘heroic’ individuals who have overcome their personal tragedy of disability are admired. The term was used by disability activist Stella Young (2014) – she gives an excellent TED talk about this that is worth seeing (“I’m not your inspiration thank you very much”). We can observe this in reference to the ‘superhuman’ Paralympian, for example. Young (2014) states how this only serves to objectify people with disabilities for the benefit of people without disabilities to make them feel better about themselves.

For Reeve (2002, 2012, 2014), internalised oppression arises not only from the relationship that people with disabilities have with others, or themselves (which she calls ‘direct psycho-emotional disablism’), but from the relationship they have with their environment, termed ‘indirect psycho-emotional disablism’. She does not draw on psychoanalytic theory (in fact she is quite critical about psychotherapy, because of its individualist tendency), but rather comes from a more discursive position, noting that psycho-emotional disablism is caused by oppressive social practices, including the oppressive discursive actions exercised by society on people with disability. She also notes that the experience of being faced with a structural barrier, such as an inaccessible building, may evoke negative emotions like anger or distress. Moreover, inaccessible environments are a frequent experience for people with disabilities and may prevent them from accessing vital services such as sexual and reproductive health care (Anderson & Kitchin, 2000). Kitchin (1998) argues that such repetitive experiences serve to remind people with disabilities that they are ‘out of place’, which Reeve (2012) suggests has consequent negative implications for their sense of self and emotions. What the social psychoanalytic approach (Watermeyer, 2013) provides is a model for understanding how these discursive oppressive relationships get internalised.


Cultural disability studies

While the medical and social models for disability have remained the most influential and most debated models for disability, other suggested models have also emerged over the years, such as the tragedy model, the affirmative model, the charity model (Swain & French, 2000), the minority group model, the social constructionist model and the relational model (Shakespeare, 2014). It is beyond the scope of this chapter to discuss all of these. A common characteristic to most of these models is that they have moved away from the individualistic, medical view of disability, towards a view promoting social inclusion for people with disabilities (Shakespeare, 2014). One important limitation to the models described so far that is important to highlight is that issues of culture and identity have been relatively neglected (Shakespeare, 2014). The argument has been made that these disability models, largely developed in the global North, contribute to the marginalisation of the disability experience in the global South (Meekosha, 2011). The cultural perspective, extensively covered in the field of cultural disability studies, tends to move away from economic questions while focusing on the cultural representations of disability. The weakness of this field, however, has been said to be that it speaks more to academics than to advocates and policy makers, and as such has not been influential on the political disability agenda (Shakespeare, 2014). All societies have complex belief systems and cultural interpretations related to disability, which are as important in shaping the disability experience as the specific health condition related to the disability (Groce, 1999; Gronvik, 2007). For instance, in many African cultures people base their disability understandings on local knowledge systems, where mental and physical impairments are attributed to animistic causes, such as witchcraft, ancestors’ anger, breach of taboo or punishment from God (Braathen & Ingstad, 2006; Groce, 1999; Groce & Zola, 1993; Helman, 2007; Ingstad, 1995, 1997, 1999; Ingstad, Bruuns, & Tlou, 1997; Ingstad, Munthali, Braathen, & Grut, 2012; Kleinman, 1980; Munthali, Braathen, Grut, Kamaleri, & Ingstad, 2013; Ross, 2008; Sentumbwe, 1995; Whyte & Ingstad, 1998). Adding to this, disability is sometimes thought to be contagious (Braathen & Ingstad, 2006; Smith, Murray, Yousafzai, & Kasonka, 2004). With these beliefs and interpretations follow assumptions about how individuals with disabilities should be treated and what rights and responsibilities they have (Groce, 1999). These beliefs and assumptions have in some instances led to people treating the disabled individual in a positive, mythical and elevated manner, or on the other hand, in a fearful, disrespectful and excluding manner (Braathen & Ingstad, 2006; Groce, 1999; Whyte & Ingstad, 1998). The treatment is largely dependent on whether the attribute of disability is a valued or devalued attribute in that particular setting, context and culture (Groce, 1999). We will return to discuss culture again briefly in Chapter 3.


The biopsychosocial model of disability

Based on the argued shortcomings of the disability models described above, an attempt at a more balanced approach to understanding disability has been developed over the past two decades (Leonardi, Bickenbach, Ustun, Kostanjsek, & Chatterji, 2006; WHO & World Bank, 2011), presented in the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001). The ICF conceptualises disability as both a social and medical construct, a dynamic interaction between health conditions and contextual factors; both personal and environmental (WHO & World Bank, 2011), and as such integrates components of the medical and social models for disability, as well as cultural disability studies (Shakespeare, 2014). This model for disability is known as the ‘biopsychosocial model’ (WHO, 2001).

In the World Report on Disability (WHO & World Bank, 2011, p. 4), based on the ICF, disability is described in the following way: “Disability is the umbrella term for impairments, activity limitations and participation restrictions, referring to the negative aspects of the interaction between individual (with a health condition) and that individual’s contextual factors (environmental and personal factors).” It has been argued that the ICF is theoretically underdeveloped, and does not adequately explore the complex dynamics between health conditions, individual characteristics, social and cultural context and so on. It has been criticised for failing to fully acknowledge and account for distinctions between ‘activity limitations’ and ‘participation restrictions’ and also between ‘impairment’ and ‘activity limitation’ (Bickenbach, 2012; Davis et al., 2012; Imrie, 2004; Shakespeare, 2014). However, others argue that the framework is the definition that best captures all aspects of disability. It highlights the interactive and dynamic nature of disability; acknowledging both individual health status as well as personal and environmental factors in the disability experience (Leonardi et al., 2006; WHO & World Bank, 2011). The definition is seen as a contributor to equal rights, opportunities and participation in society for people with disabilities (Leonardi et al., 2006).

Because the disability experience is shaped both by the social context as well as by medical conditions, disability is essentially a human rights issue as well as a medical concern (Groce, 1999; Officer & Groce, 2009). All human beings are protected by the Universal Declaration of Human Rights (United Nations, 1948).

Despite this, people with disabilities have been, and continue to be, denied many of their basic human rights (Harpur, 2012; Officer & Groce, 2009). In 2006 the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was developed (United Nations, 2006). The convention is perceived by many as a shift in how disability is viewed, and as a major step forward for people with disabilities (Meekosha & Soldatic, 2011). The purpose of the convention is to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (United Nations, 2006, p. 4). In the convention, disability is defined the following way: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (United Nations, 2006, p. 4).

While the UNCRPD is based on the ICF (Officer & Groce, 2009), it has been argued that the definition of disability adopted by the convention is too medical, restricted to people with long-term impairments, while ignoring level of social participation. As a result, the convention risks excluding a number of short-term, fluctuating or episodic impairments (Leonardi et al., 2006). Adding to this, it has been argued that the convention is largely influenced by disability discourses of the global North, and as such fails to sufficiently address experiences of people with disabilities in the global South (Meekosha & Soldatic, 2011). There are wellestablished associations between disability and poverty, poor health outcomes and poor access to health and social services, education and employment; all of which are far more pronounced and prevalent in the global South than in the global North (Eide & Ingstad, 2011; Elwan, 1999; Groce & Trani, 2009; WHO & World Bank, 2011). It has been argued that one cannot separate disability from other social and health issues, and that disability issues cannot be appropriately addressed without also considering issues of global power and wealth imbalances (Grech, 2009; Soldatic, 2013). As outlined in Chapter 1, most people with disabilities in the world live in relative poverty.

The biopsychosocial model may offer a useful route to understanding the complex ways in which people with disabilities may express their sexuality, or be prevented from doing so by individual, structural or social barriers. Recent definitions of sexuality, such as that provided by WHO (2006a), position the ability to lead a healthy sexual life as a human right for all. Similarly, the biopsychosocial model acknowledges that disability is partly created by social factors, thereby framing it as a human rights concern (Groce, 1999; Officer & Groce, 2009). Therefore, this model provides a useful heuristic device by which to understand the ways in which the sexual lives of people with disabilities are variously facilitated and obstructed around the globe. However, the biopsychosocial model does not go far enough to question assumptions of ‘normality’ and ‘abnormality’ and thinking more about the context of disability. This, for us, is particularly important when challenging normative assumptions about sexuality, and what is ‘normal’ and ‘abnormal’ sexuality. In that respect, crip theory offers us a valuable framework to critique assumptions.


Crip theory

The foregoing models that offer a critical perspective to disability (in contrast to the medical model) all conceptualise disability as a construction dominated by barriers, the experience of which prevent people with disabilities from participating fully in society. On the other hand, the aim of crip theory, first proposed by McRuer (2006), is to radically challenge the demarcation between what is considered ‘normal’ and ‘abnormal’. In doing so, crip theory asserts the existence of a distinct disabled identity and culture, whose members must challenge pejorative terms applied to people with disabilities and appropriate them. This is why the theory’s name is shorthand for the term ‘cripple’, an intensely offensive term for a person with a physical disability. That is, the usage of ‘crip’ is designed to be provocative and present a route of attacking stigmatised constructions of disability through labelling oneself a ‘crip’ as a badge of pride. Crip theory is situated squarely within critical disability studies and has been described as providing one of the most valuable insights within the discipline (Goodley, 2014).

Crip theory combines the fields of disability studies and queer theory. However, while both theories aim to trouble constructions of normality, crip theory shifts the focus from the demarcation between heterosexuality and homosexuality to the one that exists between the abled and functionally impaired body (Löfgren-Mårtenson, 2013). McRuer (2013) argues that both sets of constructions are interwoven with one another, that ‘abnormal’ is contextualised by what is ‘normal’ and vice versa.

This does not mean that normal and abnormal identities are situated as equals, but rather denotes that what is institutionalised as ‘normal’ thereby also subjugates what is considered ‘abnormal’. He further argues that the existence of normalcy within these systems produces compulsion to belong to the dominant category (i.e. heterosexuality, the able body), while, at the same time, the obverse desire to avoid association with the subordinated categories (i.e. homosexuality, the functionally impaired body) also acts on the individual. Therefore, the appearance of choice, for example in terms of sexual preference, is viewed as an illusion to mask compulsion towards normalcy. These phenomena are known as compulsory heterosexuality and compulsory able-bodiedness within queer theory and crip theory respectively (McRuer, 2013).

Theorists within queer disability studies argue that there is much to learn from the intersectionality embedded within a queer/disabled existence (e.g. Goodley, 2014; Sherry, 2004). In this vein, it has been highlighted that queer identities share a common history of medicalisation with disabled identities, for instance, that homosexuality used to be considered a disorder, and thus a ‘disability’ (McRuer, 2013). As such, viewing those with queer identities as disabled may pave the way to trouble constructions of able-bodiedness. Similarly, people with disabilities are often viewed as non-sexual or hypersexual (assumptions we will revisit in Chapter 3), identities that are ‘queer’ compared to the institutionalised norm of heterosexuality. Such queering helps disabled identities challenge this dominant pathology. For McRuer (2013), a queer/disabled existence will never manage to dissipate constructions of normalcy. He suggests such constructions are ultimately impossible to embody, and that rather it is the disabled identities that are inevitable, given that able-bodiedness is temporary and may be lost with age. However, as marginalised identities themselves are necessary for dominant identities to exist within such systems, a queer/disabled existence is always in danger of disrupting normalcy.

We are now in a clearer position to appreciate how crip theory critiques what other models of disability take for granted, namely that there is a ‘normal’ existence that people with disabilities are somehow excluded from. The dialogue of crip theory is emancipatory, which Sykes (2009, p. 250) terms a “narrative of attack”. However, as we have seen above, its aim is not to eradicate constructions of normalcy, which McRuer (2013) deems impossible, but to demand a reappraisal of able-bodiedness and to build transformative space in which social participation does not rest on the functional body. In this respect, Goodley and Lawthom (2011) recount the example of a youth with a disability, Alex, discussing sexual topics, such as masturbation and girls he is attracted to, with his mother, Isobel. They suggest that such exploration of material conventionally located in private spheres challenges typical discourses that surround disabled and youthful bodies.

Notwithstanding crip theory’s usefulness to disability studies, it has been criticised for not offering a similar emancipatory discourse to people with intellectual disabilities (Löfgren-Mårtenson, 2013). That is, crip theory has tended to be written mostly from the perspective of physical disabilities and challenging assumptions of normality and the body; crip theory does not draw a distinction between types of disability (see McRuer, 2006, 2013). Furthermore, given that the aim of crip theory is to galvanise people with disabilities who can understand their situation, the applicability of crip theory in general to people with intellectual disabilities has been questioned (Löfgren-Mårtenson, 2013).


Concluding comments

We have outlined some of the many models for understanding disability. What do models of disability mean for people with and without disabilities? And which one is right? Researchers have argued that explanatory models for disability are crucial in limiting or ensuring the realisation of human rights for people with disabilities (Bricher, 2000; Harpur, 2012; Siminski, 2003). The models provide a starting point for disability-related research, practice, theory and everyday living (Chappell et al., 2001). Moreover, any two individuals may find that different models of disability resonate with them, especially if they are living in different areas of the world. For instance, although the moral model is considered outdated by many, it is still the dominant conception of disability within several cultures.

Our intention in presenting this overview of models of disability is to equip you, the reader, with the knowledge necessary to understand disability in a way that is meaningful to you.

 

Note: Parts of this chapter are adapted from the PhD theses of Stine Hellum Braathen and Poul Rohleder.

 

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Understanding disability


'Understanding Disability'
is an excerpt  of
DISABILITY AND SEXUAL HEALTH
A Critical Exploration of Key Issues
authors: Poul Rohleder, Stine Hellum Braathen and Mark T. Carew
Routledge, 2019

 

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19.Abr.2022
Maria José Alegre