Homofobia e injuria

Over the last 40 years there has been a significant shift in the understanding of disability leading to a strengthening of disability movements and activism both within the UK and internationally and the development of disability studies. At

53 the core of this movement was the conceptualisation of the ‘social model of disability’, which was developed in the 1970s by activists in the Union of the Physically Impaired Against Segregation (UPIAS). The model was then given academic credibility by disabled writers such as Oliver (1990, 1996). At the heart of the social model of disability was the distinction between the terms

‘disability’ and ‘impairment’:

[W]e define impairment as lacking all or part of a limb, or having a defective limb, organism or mechanism of the body and disability as the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (Oliver, 1996: 22)

Oliver (1996) argues that disabled people are an oppressed group in society whereby through structural physical barriers they are is olated and excluded. The social model of disability was developed in defiance and opposition to the traditional medical and individualistic model of disabili ty. The traditional model places the impairment as the primary cause of the problems faced by disabled people. As a result services and research are then also aimed at the individual level whereby the aim is to alter the individual rather than changing social or environmental elements. As outlined by Shakespeare and Watson (1998) the aim is to restore or generate ‘normality’ and therefore disabled people are presented as a ‘tragedy’ because they cannot conform to this ‘normality’. This approach is very apparent, as outlined in Chapter 2, in the research on sleep and disabled children. Sleep is seen as problematic for disabled children because of their impairments. Interventions (both medical and behavioural) are held in high regard if they successfully ‘fix’ the sleep problem and thus align disabled children and their sleep to that of their ‘normal’ non-disabled counterparts.

Shakespeare and Watson (2002) explain that the social model of disability has been important to the disability movement in the UK for two main reasons. Firstly, it identified a solution to the oppression and discrimination of disabled people, namely barrier removal. If people with impairments are

54 disabled by society, then a strategy of removing such barriers has to be the priority:

Rather than pursuing a strategy of medical cure, or rehabilitation, it is better to pursue a strategy of social change, perhaps even the total transformation of society. (Shakespeare and Watson, 2002: 12)

To this end the social model of disability has been a powerful tool in influencing policies and legislation. Watson (2012) outlines the influence it has had on UK policy, for example the Prime Minister’s Strategy Unit (2005) and on European Union policy, for example, the European Commission of the European Communities (2003), as well as informing The UN Convention on the Rights of Persons with Disabilities (2006) and forming the basis of the case for anti-discrimination legislation. Secondly, the social model of disability enables the liberation of disabled people since the fault does not lie with them but with society. They do not and should not have to change. Change has to happen at a societal level. In theory the social model of disability empowers people with impairments to join a movement and to demand, and fight for, equal civil rights.

3.3.1 Criticisms of the social model of disability

Undoubtedly, the social model of disability has led to enormous positive change at a structural and political level. However, critics of the model (some of whom were the early proponents of the model, for example recent writing by Tom Shakespeare and Nick Watson) argue that it is too simplistic and is useful only in the political arena and as rhetoric for activists rather than having academic and empirical relevance (Watson, 2012). Shakespeare and Watson (2002) argue that the need to uphold a ‘strong’ version of the social model of disability in order to demand and achieve social change has led to a rigid dichotomy between disability and impairment. In reality this dichotomy need not exist and impairment, and therefore difference, needs to be recognised as real and impacting on the lived experiences of disabled people. Through the social model of disability the multiple voices and experiences of individuals with impairments has been lost. Writers and theorists, particularly those writing from

55 a disabled feminist viewpoint, have argued that this has been hugely detrimental and needs to be rectified. As Morris (1991:12) explains:

[T]here is a tendency within the social model of disability to deny the experience of our own bodies, insisting that our physical differences and restrictions are entirely socially created. While environmental barriers and social attitudes are a crucial part of our experience of disability – and do indeed disable us – to suggest that this is all there is to it is to deny the personal experience of physical or intellectual restrictions, of illness, of the fear of dying.

Furthermore, Shakespeare and Watson (2002) argue that to deny impairment and ignore difference runs the risk of leading to a reluctance to identify with the disability movement on the part of disabled people and to commentators dismissing the movement as ‘idealistic’.

The dichotomy between impairment and disability as socially constructed is further weakened if consideration is made, as highlighted by Shakespeare and Watson (2002), of variable effects of different impairments. This not only has implications at an individual level, in terms of health and capacity, but also at a wider social level as different impairments will lead to different responses

‘from the broader cultural and social milieu’ (p19).

3.3.2 The social relational model of disability

In response to criticisms of the social model of disability there have been theoretical developments in the understanding of disability. One such development comes from the work of Thomas (1999, 2004) and the social relational model of disability, which originated from the accounts of disabled women. This has particular resonance for my own research as it has been adopted and applied to research with disabled children by Connors and Stalker (2003; 2007) whose research is discussed in more detail in Section 3.4.2.

The social relational model retains the materialist basis of the social model of disability and continues to emphasise that structural barriers are the cause of many issues faced by disabled people. As such disability is rooted in

56 unequal social relationships leading to the oppression of disabled people by those without impairments. Thomas (1999) labels this as ‘disablism’ (rather than disability as conceived by the social model of disability) in a deliberate way to draw comparisons with racism, sexism and other identity-based discriminations. However, in an extension to the original social model of disability, Thomas (1999) perceives disablism as a form of social oppression that operates at both the public and personal levels, ‘affecting what people can do as well as who they can be’ (Reeve, 2004). Disablism is the result of two processes that can occur separately or together. ‘Barriers to doing’ are akin to the structural, physical and environmental barriers as highlighted by the social model of disability. ‘Barriers to being’ refers to behaviour that is directed towards a disabled person (wittingly and/or unwittingly) that is hurtful, hostile or inappropriate and leads to a negative impact on the disabled person’s self confidence, self esteem, self worth and value. Thomas (1999) terms the disablism occurring through ‘barriers to being’ as ‘psycho-emotional disablism’.

As outlined by Reeve (2004) psycho-emotional disablism emerges from the relationship that a disabled person has with other people, often family members, friends, professionals or strangers, but also with themselves in the form of internalised oppression. Reeve (2004) discusses how disabled children may experience more acute internalised oppression because of their less powerful position (as both children and as disabled) resulting in higher levels of vulnerability to the views of the wider society. Reeve (2004) goes on to say that their parents may be ‘unwitting oppressors’ in the process of psycho-emotional oppression because ‘their beliefs and expectations will be shaped by the professionals they defer to’ (p91). Indirect psycho-emotional disablism can arise from the experience of structural disablism especially through such barriers as exclusionary institutional policies and practices as well as the emotional impact of being faced with, for example, an inaccessible building.

In addition, and in response to criticism of the social model of disability, the social relational model recognises the existence of impairments and that some restrictions of activity faced by disabled people are the direct consequence of living with impairment. Thomas (1999) terms these restrictions

57 as ‘impairment effects’ and they could include fatigue or pain associated with certain impairments or the inability to do certain things (Connors and Stalker, 2007). Thomas (1999) argues that impairments are not irrelevant and their effects can combine with disablism.

Difference is, therefore, also acknowledged and not denied so that disabled people are seen as ‘essentially’ different from non-disabled people (it is important to note that the dichotomy of ‘disabled’ and ‘non-disabled’ has also been criticised – Shakespeare and Watson, 2002). As Morris (1991) argues the social model of disability deliberately denies difference in order to push forward a progressive and liberating agenda because these differences have such negative meanings for non-disabled people, for example, damaged, tragic, weak, and abnormal. But as a disabled person, Morris (1991) acknowledges that she is different. Therefore, it is possible to reject the meanings that are attached to disability by non-disabled society while at the same time accepting that the differences form an important part of a disabled person’s identity.

The social relational model of disability highlights how impairments, impairment effects, and disablism are intertwined with ‘the social conditions that bring them into being and give them meaning’ (Thomas 2007, p137) and, therefore, the boundaries between them are in a ‘dynamic relationship’.