“Dealing with anger, self-loathing and daily experiences of rejection and humiliation are among the hardest aspects of being a disabled person.” (Shakespeare et al, 1996 p 42)
The psychological effects of disability are considered some of the most difficult to cope with. Not only does the individual have to deal with the impairment itself (often this is something that has come about, since as Siebers (2001) has indicated, only 15% of disabled people are born with their impairments), but there are also the stigmatizing effects of society, which includes the attitudes of those family and friends, colleagues and health professionals in direct contact with the individual (often this is compounded with the individual’s own negative stereotypes of disability that had been formed prior to the onset of disability). Albrecht and Devlieger (1999) note that people (individuals as well as their families and wider communities) are not usually prepared to acknowledge or willing to accept disability, and as such its appearance “shatters preconceived expectations and norms and calls accepted values and notions of well-being into question.”
Oliver (1990) explains that some of society’s response to impairment is the mistaken belief that when something happens to the body the mind is somehow affected in the process, and as such full treatment must include some form of “psychological adjustment or coming to terms with disability” in addition to medical intervention and physical therapy so that the individual is able to pass through stages of mourning over their apparent loss and thus emerge more satisfactorily adjusted from the rehabilitation process (p 63). He points out that this image of disabled people as bitter and full of self-pity is extended in media imagery, and often acceptance or adjustment comes about through ‘an emotional slap in the face’ delivered by a long-suffering family member or friend.
“Sometimes [disability] leaves physical scars, but mostly it marks one’s psyche, preying upon one’s sense of well-being with a deep recognition of the frailty of life.” (Allbright, 1998 unpaged)
Abberley (1991) points out that the horror of impairment, or ‘lost body-image’, is apparently greater than that of the death of a loved one. This in turn creates a primacy of the disabled status above all other aspects of the person’s identity. Recovery, which relies on medical intervention, instills a desire to triumph against the odds, to refashion a new self from the remains of the old body. Such an image of striving to be ‘healthy but disabled’ Abberley maintains, does more to allay the fears and values of able-bodied society, where impairment = death. He goes on to claim that psychological abnormalities displayed by disabled people usually come about not as a result of impairment, but the way society fails to meet their needs. Oppression takes the form of society’s attitude, since the disability problem is located firmly in the individual.
“rather than being an unchangeable feature of social life, the disablement of impaired people can be overcome, through legislation and practices which remove the impediments to fuller participation in social life.” (Abberley, 1991, p 14)
One of the problems associated with the social model has been identified as its disproportionate emphasis on more public experiences of oppression at the expense of personal, intimate or emotional experiences. In effectively dispensing with psycho-emotional experiences as part of one’s ‘private life’, claims Thomas (2004, p 42), key aspects of the disabled experience are overlooked, and the psychological effects of oppression are mistakenly dismissed as ‘personal angst’. As Reeve (2004) has pointed out, the psycho-emotional experience of disability (feelings of shame or worthlessness brought about by stares or condescension from strangers) can be as effective in preventing disabled people from participating in mainstream activity as physical barriers, while often the two dimensions reinforce each other (being reduced to the position of asking for help in a disabling environment, for example). She notes that the agents of oppression include family members and ‘professionals’ but are also present in the larger society, bolstered by representations in mass media and elsewhere. She also remarks on the power of the medical gaze to reinforce such oppressive societal attitudes, consequently making disabled people feel even more rejected and worthless (2002, p 498). Morris (1991) speaks of the sense of unease felt among disabled people when interacting with non-disabled people, especially in public situations:
“Going out in public so often takes courage. How many of us find that we can’t dredge up the strength to do it day after day, week after week, year after year, a lifetime of rejection and revulsion? It is not only physical limitations that restrict us to our homes and those whom we know. It is the knowledge that each entry into the public world will be dominated by stares, by condescension, by pity and by hostility.” (p 25)
She discusses coping strategies that range from ignoring or pretending not to notice the reactions of the public to head-on confrontation. She mentions the fact that physical differentness evokes such strong feelings that people feel compelled to react in some way, often without considering the cruelty of their words or the private space they are invading with their vocalized observations and judgements or simply to satisfy their curiosity (ibid, pp 28-9). Morris also observes that disabled people are often made to feel ‘less than human’, ‘better off dead’, or at the very least excluded and unwanted in non-disabled physical environments; the implicit message is that they do not belong in the homes, educational institutes, workplaces and leisure venues where non-disabled people spend their lives (1991, p 27).
Reeve (2002, p 495) identifies three principle forms of psycho-emotional effects: firstly, there is the effect of exclusion, ranging from leisure activities to access to employment and institutionalization, as well as physical barriers; then there is the effect of the public gaze, where the disabled person feels ashamed, as if something is wrong with them; this leads to ‘internalized oppression’, where the discrimination is accepted, since the disabled person believes it to be justified on the grounds that they are worthless.
Expanding on these 3 forms, in a later work Reeve (2004) provides examples of physical environments that serve to instil the notion of being a second class citizen, such as being forced to use back entrances or goods lifts to gain access to public spaces. Regarding the public gaze, Reeve states that although the visibility of impairment is directly related to how disabled the person is perceived to be by society at large, with it frequently becoming their most dominant characteristic (2002, p 499); those individuals who ‘pass’ with less visible impairments are not released from psycho-emotional effects since the fear always exists of being discovered (what Goffman (1963, p 94) refers to as the ‘shadow’ cast over intimate relations). Internalized oppression manifests itself as low self esteem resulting from negative stereotypes of disability within society, and reflects the values and attitudes of those in direct contact with the impaired individual (family, friends, and professionals). To illustrate the significance of the psycho-emotional effects of disability, as well as to emphasise the shortcomings of the social model, Reeve provides the following example:
“Sometimes I don’t go into my local town centre because I cannot manage the steps on that day, other times I don’t go shopping because I cannot deal with the stares of others.” (2004, p 92)
Stressing how important it is to recognize that both situations come about as a result of oppressive social attitudes rather than an individual reaction to impairment or disability, Reeve also points out that even were all socio-structural barriers to be removed from society, psycho-emotional disablism would still exist since the prejudices and stereotypes are too ingrained to disappear with any rapidity. She argues that one of the roles of disability culture is to challenge societal oppression by providing alternative images of disability as well as a platform for disabled people to exchange and reflect on their different group experiences (p 100). By not addressing the issue of psycho-emotional effects of disability, the disability movement runs the risk of having elements of social life such as self esteem, sexuality and interpersonal relationships evaluated from outside, according to the personal tragedy paradigm.
Elsewhere, Reeve (2006) points out that the psycho-emotional dimensions are not fixed, depend on time and place, as well as how visible the impairment is and a number of other factors including class, gender and ethnicity (p 96). Negative societal attitudes – avoidance rather than engagement through fear of contagion, or simply because a person feels they may be called upon to assist in certain unforeseen ways – come about through ignorance or a lack of awareness among the general public, through their not taking the trouble to ‘see beyond the wheelchair’ (p 99). Reeve analyses how people with impairments internalized the oppression they received at the hands of health professionals, their families as well as societal values in general, and such experiences need to be addressed psychologically;
“the experience of exclusion, prejudice and the reactions of others can adversely affect someone’s emotional well-being, a situation which can be exacerbated by the emotion work which some disabled people undertake as a way of resisting psycho-emotional disablism.” (ibid, p 106)
The problem of internalized oppression is summed up by Paulo Freire in his Pedagogy of the Oppressed:
“Self-depreciation is another characteristic of the oppressed, which derives from their internalisation of the opinion the oppressors hold of them. So often do they hear that they are good for nothing, know nothing, and are incapable of learning anything – that they are sick, lazy and unproductive – that in the end they become convinced of their own unfitness” (Freire 2000, p.63).
This internalization of oppression leads to the disabled person’s self-denigrating ‘melancholia’ as Freud (1917, p 247) described it: “a loss in regard to his (sic) ego.”
However, in a similar way that mentioning impairment is shunned in disability studies, there has been a reluctance to engage with psychology “lest the individual tragedy model be re-invoked through suggesting that disabled people need some form of psychological help” (Reeve 2006, p 94). On the other hand, it has also been remarked that disabled people wishing to end their lives are more likely to be granted the right to commit suicide, implying their lives have less value since non-disabled people would probably receive suicide prevention counseling (Shapiro 1990).
Challenging the conventionally accepted stages approach to loss (DABDA, Denial-Anger-Bargaining-Depression-Acceptance, or the Kübler-Ross model) Sapey (2004) looks at a number of theories on the psychology of loss and grief that offer alternatives that are less rigidly linear, more fluid and cyclic, fluctuating between dominant emotions of acceptance or grief according to particular environments or activities. These biological approaches recognize that grief is a natural process and deeply personal – the impact of grief and the ways of integrating and making sense of loss vary considerably from person to person. Rather than denying reality, reconstructing a positive identity through personal reevaluation of diversity and difference is central to the process of coming to terms with loss. Whereas the medical model of disability requires the individual to accept a “diminished role” or “inferior identity” within society, the social model implies that societal attitudes towards impairment need to change (Sapey, 2004 p 99). Using this reconstruction theory, Sapey proposes that individual psychological dimensions can be included in the social model without weakening its political force.
In analyzing what they refer to as the ‘disability paradox’, Albrecht and Devlieger (1999) reveal the discrepancy between how disabled people view their quality of life and how it is negatively perceived by non-disabled people, particularly those in the medical and rehabilitation professions, since their notions of quality of life are limited to health related concerns. According to their research, quality of life depends on disabled people embracing their impairment rather than denying their disabled status, while “establishing and maintaining a sense of balance between the body, mind and spirit and with the individual’s social context and environment” (p 986). Central to this is the notion of taking control of one’s life: introducing predictable order, understanding one’s abilities and setting goals accordingly, engaging in social networks in valuable and reciprocal relationships. Though they do concede that often the physical aspects of impairments, including pain and fatigue, as well as lack of access to resources and knowledge can prevent or discourage individuals from attaining licence to act as agents in their own lives.
Susan Wendell (1989) claims that quality of life notions are embedded in able-bodied mythology surrounding what people ‘ought to do’ in order to be normal, happy and well-balanced, and that the disabled experience is largely ignored in favour of the cognitive authority of medicine, and silenced when the bodily experiences of a condition radically depart from its scientific descriptions and definitions (she cites the case of phantom limb pain, which is undergoing reassessment after doctors who had undergone amputation surgery began corroborating patient testimonies).