‘Coming to terms’ with an impairment and ‘coming out’ as a Disabled person.

‘Coming to terms’ with an impairment and ‘coming out’ as a Disabled person.
Interrogation of the discourses of denial and acceptance

Andrew Bogle 302CMC

Introduction

My dissertation will focus on the representation of disabled people in contemporary British television. I will also make small reference to American and British film to highlight some of the possible origins of the cultural discourses I will be examining. I will be drawing from theories established within disability studies and will also use work from cultural theorists concerned with the creation and progression of discourses within culture. The research is book-based and the cultural products analysed, the television programmes, were recorded from British terrestrial broadcast between March 2004 and April 2006.

My research will identify two discourses in particular that I believe to be dominant within the texts that are the basis of my study. Both discourses have been identified and labeled for the purpose of this piece of work. However, Chapters 1 and 2 aim to explain the origins of these discourses and establish their roots within a wider cultural setting than their existence within the cultural products analysed.

The first discourse that will be discussed is what I will call the ‘coming to terms with impairment’ discourse. This is the most dominant of the two and is unapologetic in following traditional societal attitudes towards disability. That is to say it views the impairment as the problem and treats disabled people very much as victims. The discourse reinforces the medical model of disability identified by disability studies.

The second discourse that will be discussed is what I will call the ‘coming out as a disabled person’ discourse. This makes assumptions about disabled people’s attitudes to themselves and is supported by a lot of theorists in the disabled studies field. It presumes a state of denial that disabled people have about their sense of self, and talks of a cathartic process which takes place when the disabled individual identifies itself with the group and becomes politically aware.

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It will be suggested that the former discourse is very widespread in, not only television texts, but also in wider culture. The latter discourse is presented as a positive, progressive representation that furthers the standing of disabled people in society. However, I will suggest that the two discourses share essential features and position the disabled subject always on a journey from isolation to acceptance. The discourses place disabled people in a slightly different ideological context, but they both see them battling their bodies or their psyche for a distant goal. Where either of these discourses are present there is a distinct lack of room for other narratives to be told. It is my contention that texts where these discourses represent the reality of disabled peoples’ lives limit the actual complexities that are afforded to representations of non-disabled people.

The ‘coming to terms with impairment’ discourse, which will sometimes in this dissertation be shortened to the ‘coming to terms’ discourse, finds its ideological basis in the medical model of disability. The ‘coming out as a disabled person’ discourse, sometimes referred to here as the ‘coming out’ discourse, finds its grounding in the social model of disability. For simple definitions of both the medical and social model of disability please see Appendix 1. It is very important to note that the two discourses central to the analysis of this dissertation, despite drawing from and interacting with the two models of disability, are distinct from the approaches they originate from.

When disability, in this dissertation, is discussed the language that is deemed appropriate by the social model of disability will be used (See Appendix 1). However, considering that central to the debates that will be discussed is society's approach to disability, it is important to note that the majority of the texts analysed do not show the same awareness of disability equality as this research will. Also important to note, when disability or impairment is used here, for the vast majority of the time it can be presumed the terms refer to physical disability. I do not wish to reinforce a general narrow view of disability, common in society, but suggest the discourses analysed commonly exist where physical disability is represented.

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Chapter 1

Origins of the ‘coming to terms with impairment’ discourse.

The narratives that draw from the ‘coming to terms’ discourse have their foundations firmly rooted in wider culture. The fact that society values the normate and measures deviances from it means that impairment is traditionally seen as a problem.

...in terms of a disability discourse, the social identities of those who consider themselves to be normal (or non-disabled or able-bodied) are secured only through a process which involves the systematic social exclusion and marginalization of others 'the disabled', who are identified in terms of their deviance from an imagined ideal (Swain and Cameron, 1999: 75).

This contributes to impairment being seen as an individual problem for people to overcome instead of disability being a symptom of an unequal society that needs negotiating. The physicality of disabled people is seen as the problem and therefore the onus is on the individual to come to terms with their deviancy.

Foucault (1990) highlighted that institutions such as the medical profession categorise people in terms of how far they stray from what is considered to be normal behaviour. He said that power was:

.. centered on the body as a machine: its disciplining, the optimization of its capabilities, the extortion of its forces, the parallel increase of its usefulness and its docility, its integration into systems of efficient and economic controls, all this was ensured by the procedures of power that characterized the disciplines: an anatomo-politics of the human body (139)

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The inability of disabled people to fit in to an economic system designed for non-disabled people presents a problem. Traditionally a person’s usefulness is heavily tied in to ideas of physical strength and self reliance.

Traditional television representations act to reinforce disabled people’s status as deviant from the normate. There are several negative stereotypes that embody this deviancy including: the connotations of evil connected with physical impairment; the angry bitter person who wants to take their pain out on others; and the placid asexual cripple who is to be pitied.

People with disabilities are courageous or longsuffering; we're invited to praise or pity them. They're applauded in 'aren't they wonderful' stories for triumphing over their disability, and for performing tasks as proficiently as the able-bodied (Karpf, 1997: 79).

Although all three of the stereotypes add to the sense that being disabled is a undesirable state to be, the latter of the three is most relevant to the ‘coming to terms’ discourse. This is because in a sense what Karpf (1997:79) describes is the supposed end product of this journey of acceptance. The disabled person needs to accept that they can not achieve as much as they could of if in other circumstances their bodies were less physically restricted. This is obviously a view that follows the schema of the medical model’s approach to disability. This approach is still dominant, and therefore sets up an environment where the representation of a state of denial can be seen as a credible standard for the disabled self.

This is why the ‘coming to terms’ discourse, where acquired impairments are concerned, heavily focuses on the quest of disabled people to regain as much physical ability as possible. Acceptance of an impairment is only shown after a narrative has been told

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about how the disabled person and medical professionals have determinedly battled to regain movement in legs, for example. The long term effects of the impairment are

always weighed against how much progress has been made physically since an initial injury. The ‘coming to terms’ discourse naturally inhabits the milieu of the hospital as this is where physical steps are made back towards normality. This approach to telling stories about disability conforms very much to the medical model view of disabled people as tragic. However, I would suggest that often it is not just presented as personally tragic, but for the reasons stated by Foucault (1990:139) tragic for society’s progression as a whole.

In television and film disabled people are frequently shown denying that their impaired physical state is a permanent feature of their identity. The disabled patient is often represented as believing they will make a full recovery. This is the case in Born on the Fourth of July (Stone, 1989) where disability is presented as tragedy. Denial is shown when Ron Kovic is dragging his motionless legs on the floor while on crutches, in Bronx Veterans Hospital. This is even after the doctors have told him that he will never walk again. The scenes of Ron defying his impairment end when he falls over, breaking a bone in his leg, that punctures his skin. In a later scene where he seems to have accepted that he will never walk again he says:

I think Timmy I’d give everything I believe in, everything I’ve got, all my values just to have my body back again, just to be whole again. But I’m not whole I never will be and that’s the way it is, isn’t it. (Stone, 1989).

Although Ron changes his political attitude to the Vietnam War through the course of the film, in terms of disability there is no political awakening. His impairment is always seen as the ultimate sacrifice he paid when betrayed by his government into fighting an unjust war.

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When the focus of the ‘coming to terms’ discourse is a person with a congenital impairment the narrative is often told in a hospital setting. However the nature of these impairments means that the subject of the discourse, the disabled person, is a child.

Parents play an important role in these narratives, as will be shown in chapter 3, and the notions of normal family life are often questioned.

An essential feature of the ‘coming to terms’ discourse is the notion that a disabled person’s life is less fulfilling than a non-disabled life. The acceptance that disabled people arrive at is an acceptance of being a second class citizen. They accept that it is their impaired bodies that cause the problems that they face and that it is their responsibility to negotiate the restrictions. This is a view that is totally rejected by the social model of disability which puts the responsibility on society to negotiate the problems that disabled people face. The ‘coming out as a disabled person’ discourse, discussed in the following chapter, can therefore be seen as a direct response to the ‘coming to terms’ discourse.

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Chapter 2

The long drive away from denial we are all on? The disability studies/rights theory of ‘coming out as a disabled person’.

The discourse of ‘coming out as a disabled person’, evident in progressive television representations of disabled people, stems from a theory within disabled studies / the disabled rights movement. The theory is heavily tied into the social model of disability as it urges disabled people to re-conceptualise their sense of self. This is equivalent to the social model's request to society to redefine disability.

The ‘coming out’ theory works on the concept that the self is defined in relation to the normate (Swain & Cameron, 1999:76). The invalidation, and isolation caused by society’s medical model approach, causes many disabled people to disassociate themselves from the label and/or concepts of disability. The theory is that because ‘..disabled people may experience the isolation of being different from other family members’ (Shakespeare et al, 1996:50) psychologically individuals do not identify themselves as disabled. The negative stereotypes connected to disability, discussed in Chapter 1, are not recognised by many disabled people as being relevant in the formation of their individual identities.

Disability theorists liken this denial of identity to the experience of the gay community (Shakespeare et al, 1996:50. Swain & Cameron, 1999:68. Campbell & Oliver, 1997: 106). The fact that heterosexuality and non-disability are presumed the norm by society, groups that deviate from this can feel invalid. However, unlike gay people, although some disabled people have impairments that are not visibly obvious, many disabled people cannot pass in society as the normate. Even for these disabled people the denial of identity is still very relevant because disability studies sees this denial in cultural terms and demonstrated by a rejection of group identity.

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This denial is seen to have many damaging effects both psychologically to the individual and culturally to the specific minority. It is suggested that the only way to rectify this negative behaviour is to positively claim an identity that deviates from the norm.

Coming out, then, for disabled people, is a process of redefinition of one's personal identity through rejecting the tyranny of the normate, positive recognition of impairment and embracing disability as a valid social identity. (Swain & Cameron, 1999:76)

This process is seen as the deployment of the social model of disability within a disabled person’s life. Identification with the label, and the group identity, of disabled people leads to greater contact with the disabled community and therefore can facilitate a greater understanding of the self.

..‘coming out’ for our respondents involved redefining disability as a political oppression; identifying collectively with other disabled people and with disability culture; overcoming the internalized oppression [….]. It therefore has personal and psychological benefits, as well as social and political value. (Shakespeare et al, 1996:58)

The change in the disabled self once “outed” and recognised as a member of the specific group seems to carry with it a certain obligation to politically promote the social model of disability. Activity in the breaking down of negative stereotypes and active political campaigning is the natural progression of an individual who has been through the coming out process, according to Swain & Cameron (1999:76). Therefore if the coming out process is the redefinition of disability in the individual’s life, there seems to be another redefinition inherent, one of redefining the disabled person as the disabled activist. No doubt political activism is necessary in order to extend the rights of disabled people. However within any oppressed group there will be people that are more politically

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engaged with emancipation than others. The theory of ‘coming out as a disabled person’ seems to leave no room for the less politically engaged members of the group. Swain & Cameron (1999:78) say, ‘..to be “otherwise stated” is to be personally and politically committed’.

However, the presumption that self worth attained from a disabled person coming out will lead to a predilection for involvement in the disability rights movement is a gross generalization. Bury (1996:35) suggests that a similar presumption is made within disability studies research, one that values the disabled researcher over their non-disabled counterparts.

A political imperative for the disabled rights movement, and disability studies, is to create a sense of cohesion between a diverse group of people with varying impairments. The social model’s redefinition of disability, from medical tragedy to social discrimination, is no doubt a positive political tool. However:

Critics have argued that the sense of political commonality often associated with the social model has been contested as an over-simplification of the complexity and diversity in disabled people's lived experience. (Watson, 2004:103)

The way that the conventional disability studies expresses the ‘coming out’ theory, in such universal terms, is therefore an act of reductionism. For the sake of a united group experience they have neglected to take into account other factors that might effect disabled people’s formation of their own sense of identity. It is presumed that all disabled children are exposed to the same level of medical model rhetoric and have no positive disabled role models until later in life, when the ‘coming out’ process is meant to occur. Indeed Pinder (1996) suggests that the tendency to group all disabled people with one collective voice is risking, ‘…re-producing the very inflexibility of a wider ablist society’ (139).

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Chapter 3

Coming to terms with representations of disability on

British television. Contemporary manifestations of the ‘coming to terms with impairment’ discourse.

Contemporary British television reinforces the ‘coming to terms with impairment’ discourse when it seeks to explore the disabled self. The discourse presumes a state of denial concerning the physical restrictions which result from impairment. This denial is manifest in a number of different forms within the programmes analysed. Sometimes we see a straightforward denial of impairment, a refusal to accept that physical restrictions are part of a permanent impairment, reminiscent of the denial of Ron in Born On The Fourth Of July. However, the search for a cure to correct congenital impairment, although similar, represents a different manifestation of denial within the same discourse. While they both are medicalised, the former treats impairment almost as a temporary illness that can be overcome by the patients’ hard work, while the latter looks more to the miracle of science to defeat nature’s cruelty.

The denial is justified within the cultural text because disability on television generally has extremely negative connotations. Ross (2003) says :

The orthodox view of disability as aberrant and abnormal is played out continuously by the framing of disability as alternately tragic, dependent, and helpless (and sometimes brave), or else bitter and twisted (and sometimes evil). (30)

It is with these cultural presumptions circulated by television representations, that impairment is presented as something that any reasonable person would go to extraordinary lengths to avoid.

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Retrospective talk of possible terminations of pregnancy, ‘if they had known’, also represents another manifestation of denial within the programmes conforming to the ‘coming to terms’ discourse. The acceptance on offer for the disabled selves, involved in programmes that follow the ‘coming to terms’ discourse, means accepting they have an inferior existence.

A straightforward telling of a narrative, following the lines of the ‘coming to terms’ discourse, can be seen in an episode of Tonight With Trevor McDonald (ITV1, April 24th 2006). The episode focuses on Martine Wright’s story, a survivor of the 7/7 bombings, who became a double leg amputee as a result of injuries sustained from the terrorist attack. The narrative of the half hour documentary is driven by the progression of her physical rehabilitation. Early on in the programme we see the very first time she tries on her new prosthetic legs. Great emphasis is placed on how quickly Martine is going through her rehab and this is repeatedly attributed to her personality. Trevor MacDonald says, ‘..since that day her courage and determination have been tested as never before’ (ITV1, April 24th 2006).

This is a common theme in the ‘coming to terms’ discourse, as the idea is espoused that determination can defeat much of the limitations that are caused by the impairment. However, as again in Born On The Fourth Of July we see in this narrative that this determination to limit the restrictions can turn into a denial of the impairment. This is shown when, close to her completing her rehabilitation, Martine risks further injury by ignoring the pain of a torn muscle in order not to delay her return home. This type of denial is seen as justified within the programmes analysed because it goes hand-in-hand with the determination of disabled people that is much revered.

Within the discourse of the programme impairment is seen as a terrible price to pay that has been meted out to Martine by the chaos of chance. The cause of the impairment is described by Trevor MacDonald as ‘appalling injuries’ (ITV, April 24th 2006) and the

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sense of the injustice is highlighted when Martine says that she still questions why it happened to her. Indeed the recklessness of terrorism is here presented in the same way as the recklessness of the Vietnam War is presented in Born On The Fourth Of July.

The fact that Martine has regained so much physical ability from the initial injury is presented as the thing that ultimately brings her acceptance. This acceptance seems to involve recognising that people with impairments have inferior lives. Near the end of both the documentary and her rehabilitation she is walking, on crutches, side-by-side with Trevor MacDonald and says that it is good to ‘..chat away as well and not be down there in my chair. You know it feels fantastic’(ITV, April 24th 2006) . The fact that she sees being in a wheelchair as an inferior position, suggests that she does not identify herself with other disabled people. This therefore is the final confirmation that the road to acceptance, that is shown in the documentary, is an acceptance of her physical restrictions and not of the status of a politically aware disabled person.

The search for a cure for impairment is very prominent within the ‘coming to terms’ discourse. It tends to be a traditional focus of investigation into the subject: ‘Medicine offers them the possibility of a cure, or helps them function more 'normally' by supplying increasingly sophisticated technological aides..’ (Karpf, 1997:79). Indeed several of the programmes analysed follow narratives that look to the medical profession for cures. New Face New Life (BBC1, 8th February 2005) follows several children as they embark on a quest to gain surgical correction for facial disfigurements caused by Aperts Syndrome. While the main focus of the narratives included in the series Born To Be Different (Channel 4, August 2005) are concerning the disabled children and their parents going through surgery and other therapies to correct impairments as much as possible.

Within these narratives the ‘coming to terms’ discourse has a strong presence. Several of the parents featured in New Face New Life insist that they love their children regardless of how they look. Haley’s dad says ‘the surgery was there to make it more acceptable’

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(BBC1, 8th February 2005). He explains that he sees society as discriminating against people with facial disfigurements and therefore feels the surgery to be necessary, even though he does not care about Haley’s appearance himself. The mother of Honey, a baby with Aperts Syndrome, expresses similar sentiments: ‘The thing that runs this society is how you look and if you don’t look right your life is absolutely buggered, you won’t have the same opportunities’ (BBC1, 8th February 2005). Here the parents recognise society’s role in discriminating against disabled people, however the connotations of their comments are still medical model based. This is because in their view, which is justified by the programme makers who never suggest a non-surgical solution, is that to stop this discrimination you correct the impairment of people instead of changing society’s attitude. The limitation of impairment through medical intervention is again seen as a precursor to the acceptance of disability. However this type of representation sees the children purely in terms of their impairment:

Disabled audience members were insistent that their disabilities were but one part of themselves; they were not necessarily the primary signifiers for their lives, but simply facts of them; the media's fascination in focusing on this one aspect therefore seemed to be inappropriate and lazy to them. (Ross, 2003:29).

In Panorama: Special Babies Grow Up (BBC 1, 22^nd September 2004) we see parents alternate between acceptance, in the form of love for their children, and denial in terms of conversations about terminations of life support. In this programme scenes of a severely disabled child called Bright, being bathed, are shown alongside pieces to camera where his father debates if he had another disabled child whether he would withdraw life support or not. In this episode of Panorama there is an open discussion with medical experts about whether they should offer intensive care for babies born before 24 weeks. Therefore denial, in this manifestation of the discourse, is more extreme because it calls into question the value of a disabled person’s life in the most drastic way. This is contrasted within the same programme by a woman who has disabled twins and says that

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‘…they beat the odds before birth, so there is no question of them going anywhere’ (BBC 1, 22^nd September 2004). The brief moments of this mother's total acceptance of her children's impairments does not impact greatly on the programme's serious questioning of the value of a disabled person's life. It does however show parents at varying stages of the coming to terms process.

In Born to be Different again we see parent and child at various stages of therapy and miracle surgery through the narrative of the documentary. Varying different attitudes to disability / impairment are on display as we see different families’ stories. In a scene where a mother gets frustrated with her daughters reluctance to cooperate with treatment she says to her toddler; ‘Chuck it all away, fair enough, Zoë end up in a wheelchair’ (Channel 4, August 2005). This particular parent seems very intent on limiting the impairment of her daughter. Sometimes we see her lose her temper and act in a way that some of the audience may find inappropriate. However, the documentary never comments via voiceover or interviewer on this type of behaviour negatively. There is a message therefore that a near obsession to normalise your disabled offspring is understandable. Necessary in telling the ‘coming to terms’ discourse is showing people at different stages of the process. In contrast to the attitude of Zoë’s mum, Hamish’s dad seems to have accepted his son’s impairment. He says ‘he is just as likely to be exceptional like any other child, just in a slightly more restrictive field’ (Channel 4, August 2005). It is often a feature of both discourses that the story of an individual’s journey from denial to acceptance cannot be told, so we see people at different stages of the acceptance process within the same programme instead.

An example of someone who seems to have reached the total acceptance within the ‘coming to terms’ process, is Jonny Kennedy, in The Boy Whose Skin Fell Off (Channel 4, 26^th March 2004). This documentary follows Jonny’s last three months of life as he makes preparations for his own funeral. The cameras are present when the horrific job of changing Jonny’s bandages is performed by his mother. This makes the audience well

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aware of the very real physical discomfort that he has to go through. He seems to make sense of his life through his work for the charity that supports people with the same impairment that he has got. He also draws strength from being involved in the Spiritualist community. Much of the content within the programme is considered with acceptance of death. This has the effect of sharpening the question concerned with coming to terms with his impairment.

Again the issue of the value of a disabled child's life is a topic of conversation. Jonny Kennedy says:

I was asked one time whether I would carry on with the birth knowing that an EB child would be born and I said no I would terminate, it’s not just a disabled child that is being born it is disabling a whole family’ (Channel 4, 26^th March 2004).

The fact that this question arises quite frequently within documentaries concerning disability validates the concept of aborting disabled children. It therefore has the effect of making a life as a disabled person seem invalid. Jonny’s attitude to himself is further demonstrated when he is talking about having romantic relationships:

… but once things get too heavy in that I just backed off and let other people move in and get on. I don’t think it’s fair on the other person to have to cope with all I have to cope with, which is what they would do’ (Channel 4, 26^th March 2004).

Jonny obviously sees himself and his impairment very much in line with the medical model view of disability. His life has been hard and he seems to accept that this is due to his inferior physical state. He rationalises this by saying, ‘… I feel that I came down to understand what it’s like to be in discomfort all your life. To learn about frustration and possibly overcome that’ (Channel 4, 26^th March 2004). There is a sense of karma around his ideas about why he is disabled. The fact that he says that he was sent to learn about

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frustration and discomfort again reinforces the inferior view of a disabled life which is essential in telling the ‘coming to terms’ discourse.

Jonny makes the clearest statement of acceptance, which conforms to the ‘coming to terms with impairment’ discourse, of all the programmes analysed. He says:

I feel I have learnt my lessons, I feel I have come to terms with it and come to terms with people around me like my father, people when I’m out in the street. I don’t get frustrated when they say “What’s wrong with you?..” (Channel 4, 26^th March 2004).

He states that he has accepted people’s adverse reaction to his impairment including his own father’s inability to deal with it. Instead of working to change attitudes towards disability Jonny chooses to accept that he is inferior and changes his life in accordance.

Haunting all of the narrative of the ‘coming to terms with impairment’ discourse is the possibility of total cure. Jonny Kennedy is committed to charity work concerned with medical research (Channel 4, 26^th March 2004) while nearly all of the other disabled protagonists of the discourse are engaged in lessening their impairment medically. The acceptance that is portrayed within these programmes is a resignation that despite their best efforts the person involved still remains disabled.

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Chapter 4

Coming out with it - Discussions of self-denial and acceptance of the

disabled self on British television

In response to the traditional medical model representations of disability, shown on British television, progressive writers have responded with more positive images. The ‘coming out’ discourse when presented in its purest form, as I am about to discuss, borrows heavily from the disability studies theory of ‘coming out’.

In the drama Every Time You Look At Me (BBC 2, 14^th March 2004) Chris and Nicki are two disabled people successful in their jobs. Both characters are seen as successfully integrated into mainstream society by the fact that one works as a teacher and the other as a hairdresser. They are also presented in the exposition of the drama as socialising with non-disabled people in mainstream environments. However, as the narrative progresses the fact that they fit in so well is presented as a negative, it being the by product of their denial of their disabled status. ‘Self-representations are, therefore, the basis for ideologies, and for this reason their investigation is of primary importance for an understanding of the constitution and functioning of social groups’ (De Fina, 2006:356).

Their denial is symbolised within the exposition by the social awkwardness when they are around each other. Early on in the drama this is shown in the scene shortly after they have met and are eating lunch with mutual acquaintances. There is a close up shot, from the point of view of Chris, on Nicki’s necklace which consists of silver letters that spell out the words ‘Great Tits’ (BBC 2, 14^th March 2004). The next shot is of Chris looking uncomfortable and averting his eyes. The use of the mise-en-scene of the necklace challenges a stereotype of traditional concepts of disabled people as asexual. It also challenges the view that disabled people hate their bodies.

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In Happy Birthday Thalidomide (Channel 4, 1^st April 2004) the issue of disabled self denial is more explicitly stated. The presenter of the programme Mat Fraser (who also plays Chris in Every Time You Look At Me) meets two young disabled Brazilian people and asks them about their social and sex lives. Hercules has no problems with taking a disabled lover. Fraser says

…it took me a long time until I was about 30 years old before I could accept other disabled people as lovers or as partners, which is bad because it means I didn’t respect myself (Channel 4, 1^st April 2004).

In both Every Time You Look At Me and Happy Birthday Thalidomide issues of disabled people being in self denial are mediated through the initiation, or refusal of, sexual relations with another disabled person.

Part of the ‘coming out’ discourse says that in romantic/sexual relationships, where one partner is disabled and one non-disabled, there are ulterior motives involved. In Every Time You Look At Me Nicki says to Chris ‘…like your so superior just cause you’ve got the degree in the able bodied girlfriend you still haven’t got any arms’ (BBC 2, 14^th April 2004). In the later scene she implies that Chris’s girlfriend Michelle is with him because she is very insecure and ‘…walk in the door with a crip and you’re bound to get noticed’ (BBC 2, 14^th April 2004). This sentiment is validated by the narrative of the drama when Chris leaves Michelle, claiming that he doesn’t love her, for Nicki. At no point is Nicki’s analysis of her lover and his girlfriend’s relationship questioned, this conveys to the audience that relationships between disabled and non-disabled partners are suspect. There is a very strong crossover here with the ‘coming to terms’ discourse, where these kinds of relationship are also seen as problematic. A common arc of narratives is that the angry recently impaired man rejects his non-disabled girlfriend because he thinks he “can’t love her like a man should” and that she is just pitying him.

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The idea that the medical model view of disability is so oppressive and all-encompassing that it will condemn disabled people to self-loathing, is also a central thread of the ‘coming out’ discourse. This is evident in Happy Birthday Thalidomide when Mat Fraser tells of the reaction when the first Thalidomide survivors were born. He mentions a case in Belgium where a woman conspired to kill her Thalidomide affected baby rather than bring him up. In the ‘coming out’ discourse the non-disabled world is often presented as totally unsympathetic to the issues of disability. The attitude of society often expressed in representation of a patriarchal figure failing to empathise with his disabled son, as in My Left Foot (Sheridan, 1989), is seen to drive disabled people into a state of denial. .

Essential to a fully told ‘coming out’ narrative is the moment of realisation when the disabled protagonist claims a positive disabled identity. However, sometimes the narrative of the television programme ends before the disabled protagonists have reached their destination of acceptance.

It can be said that the moment of realisation in Every Time You Look At Me is evident in the scene where Nicki is locked in the toilet cubicle. The character overhears some of Chris’s pupils talking about how much they like him but also doubting his and Nicki’s relationship. Chris eventually finds Nicki who is locked in the cubicle but is too embarrassed to call for help. Nicki expresses concerns about the relationship that do not revolve around the issue of disability. Chris reassures Nicki through the cubicle door, this is the first time we sense his commitment to the relationship. This is an interesting scene because it shows that the insecurities have stopped revolving around the issue of disability, moving onto more recognisable worries that all couples face. The fact that she is locked in a cubicle, not designed to meet her needs, can be seen as a metaphor that society does not meet the needs of disabled people and it is this that causes disability and not peoples' bodies.

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The resolution of the ‘coming out’ narrative contained within Happy Birthday Thalidomide is a little bit more complex. This is because the discourse is narrated through Fraser retelling his own experience, so in a sense he is at the destination of acceptance from the very beginning of the programme. However, he repeatedly talks of a time when he was in denial, letting the audience know how important ‘coming out’ was to him. When we see him exasperated by Jacqueline’s family misuse of her pension, we see the political activist persona of Fraser. The fact that he gets so upset about the injustice of another disabled person’s life shows the audience that he is a fully outed disabled person and prepared to accept the role as the disabled studies/rights lobby would assign to such a person.

It is common, in these kinds of progressive programmes containing the ‘coming out’ discourse, for more aware disabled people to get involved in advising what are presented as less empowered disabled people about their lives . This can be seen when Zupan introduces Keith to wheelchair rugby in Murderball (Rubin & Shapiro, 2005).

It can also be seen when the participants of Beyond Boundaries (BBC 2, October 2005) are having group discussions about disabled identity. In a conversation around the camp fire Lorraine reassures Sophie that she will one day feel comfortable with her body in romantic relationships and sexual situations. Here we see Lorraine, who has been a disabled woman for longer than recently ‘injured’ Sophie, passing on her advice. This also links the denial process into issues of sexual activity as Sophie is continuously represented as someone who hasn’t, come to terms with their impairment or come out as disabled. In the same camp fire scene Glen says:

Before we all met up, I can put my hands up and say I just closed myself off with anybody with the same condition or even anybody in the disabled family at all, cos I didn’t want to label myself like it but now I’ve spent so much time with a bunch of crips…… (BBC 2, October 2005)

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Here Glen admits to what disability studies would label a classic case of denial and he eludes that in the course of the making of the programme the coming out process has begun within him.

The discussions around the camp fire in Beyond Boundaries, and the way Mat Fraser tells Hercules of his past denial in Happy Birthday Thalidomide, mirrors the manner ‘coming out’ is talked about in disability studies. Swain & Cameron (1999), Shakespeare et al (1996) and Campbell & Oliver (1997) all contain personal anecdotes from disabled people.

It was only when I moved down into south London and met other disabled people, and disabled people in another context other than in hospital or the medical world, when I actually met activists, definitely people who were much more politically aware, much more supportive, and much more sharing, that I began to realize that a lot of the anger I was feeling was not me, but was because of society. Therefore I began to sort of feel proud of saying I was a disabled woman, because I no longer felt ashamed, I no longer felt apologetic, it was OK that I was disabled. (“Jenny” cited in Shakespeare et al, 1996:56)

Here the type of evidence that disability studies calls upon to support the ‘coming out’ theory is very similar to the discussions which take place in Beyond Boundaries and Happy Birthday Thalidomide. An awful lot of first hand accounts, included in these academic texts, of experience of denial and ‘coming out’ are from older people looking back on their youth. This mirrors Mat Fraser’s conversation with Hercules and the older participants of Beyond Boundaries counseling of Sophie. This strong characteristic of older disabled people telling younger disabled people of their previous struggles with their sense of identity as a way of help is central to the discourse. ‘These modes are (likely to be) highly developed - with an awareness by members of that culture of their grammar-like organisation’ (Kress, 2001:56). The participants in Beyond Boundaries

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seem to know the ways in which the subject of claiming a disabled identity should be talked about. The camp fire conversation, that I referred to earlier, soon turns into a debate about appropriate language used to label impairment and disability, with Toby saying ‘I prefer the term differently abled’ (BBC 2, October 2005). There is always great debate within disability studies, disability arts and the wider disabled community about the reclaiming of negative language and what is the latest politically correct label. It is very interesting in the context of examining the emergence of the ‘coming out’ discourse within progressive television that certain conversations take place. The Beyond Boundaries participants followed similar topics, discussed in a similar way, that disability studies concern themselves with. ‘..modes become shaped in response to discourse, where discourse itself is the effect of the socially shaped design practices’ (Kress, 2001:56). The fact that disabled people who are not academics are debating these issues on television results in an ever changing discourse. Toby’s preference for the term ‘differently abled’ (BBC 2, October 2005) is not in line with the official terminology of British disability studies, disability and impairment, but his opinion is seen as valid.

It is true that ‘the burden of representation’ discussed by Mercer (1994) applies to any representation of disabled people, as it does to Black art and artists. If a group of people get under-represented in mainstream media the few pieces that emerge are going to be under scrutiny by audiences within and on the outside of the specific minority. People involved in these pieces whether writers, producers or participants in documentaries, are going to feel the burden of responsibility to make that representation accurate, or positive (Mercer, 1994:237).

Not only does this affect how the piece is received by audiences and critics it also affects the content and the direction of its discourse. This is demonstrated by the self consciousness about the issue of disabled people being under represented and misrepresented in mainstream media. This can be seen in Mat Fraser’s attempts to highlight international inequalities that exist concerning disabled peoples lives (Channel

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4, 1^st April 2004). It is also demonstrated by the repeated message within Beyond Boundaries that the participants are there to prove a number of things, one of them being that they are resourceful in a team. The voice over at the beginning of every episode says, as the title sequence begins, ‘Individually they would never be able to cross such unforgiving terrain but if they work together they might just have a chance’ (BBC 2, October 2005). The participants throughout the series repeatedly say to camera that they are there to prove something to themselves, their families or to wider society. Whenever the ‘coming out’ discourse is told there are two political actions that occur; the first being the actual claiming of a positive disabled identity; the second being the broadcasting of the discourse and the resulting furthering of the social model of disability.

Issues of under-representation of the disabled and the burden of representation (Mercer, 1994) become a key element in the ‘coming out’ discourse. The fact that disabled people have been betrayed by inaccurate depictions is blamed for many denying their disabled identity. The obligation to political activism promoted by the disability studies theory is felt within the realms of progressive media, putting the onus on disabled people to provide positive and accurate representation.

However, I will argue that the proposed concept of "populist modernism" paradoxically participates in a similar process of reductionism that it otherwise challenges, namely a tendency whereby black arts criticism comes to be reduced to a system for making value judgments that are ultimately moral, rather than aesthetic, in character. (Mercer, 1994:239).

A similar process that Mercer describes above can be applied to the reception of representations of disabled people. If these cultural texts are only judged by what model of disability they promote their ability to cross over to the mainstream is limited.

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There is eagerness within disabled cultural producers who are eventually finding a way to make their voices heard, to readdress the wrongs of years of poor representation. The repetition of the ‘coming out’ discourse can be seen as part of this process and aims to change the way society sees disability but also the way disabled people see themselves. However, if the ‘coming out’ discourse becomes too dominant it will block other narratives concerning disabled people, and therefore be as unhelpful as the dominance of the medical model’s ‘coming to terms’ discourse.

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Chapter 5

Contradictions and similarities of discourse. The journey to acceptance.

Both the discourses that have been discussed share similar features, in this chapter I will look how within the same texts elements of the two can coexist. I will also suggest how many audiences may not appreciate the subtleties of the two separate discourses.

Beyond Boundaries is a series in which such contradictions exist, within the multi narrative structure of the documentary. Initially the issue of impairment seems to be dramatised as detailed medical accounts follow soon after the introduction of each participant in the programme. The very physical nature of the challenge that is undertaken within the programme also makes the audience, and indeed the participants, focus heavily on various mobility restrictions. Sophie explains how she acquired her impairment by saying:

I don’t know what happened, I just lost control of the car, I was just driving really fast, arguing about music and fighting and being silly and I lost control of the car. (BBC 2, October 2005).

This anecdote is typical of the participant’s retelling of incidents that eventually led to impairment. There is a very real sense that impairment is caused by the reckless actions of youth. This idea is also dominant in Murderball where the wheelchair rugby athletes acquired their impairments include incidents involving a fist fight, car accidents and a motor cross accident. Yet again the belief that impairment is caused by the recklessness of youth reminds us of Born On The Fourth Of July. The acquired injuries explained in Beyond Boundaries and Murderball are presented as resulting from irresponsible activities connected with youth. There is a sense of quasi–karma created when these narratives are told.

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The prominence of acquired impairment is noticeable within the programmes analysed. The narrative of disabled people gaining acceptance whether ‘coming out’ or ‘coming to terms’ is seen to fit with the personal stories of those people injured in accidents rather than those people with congenital impairment. The incident that causes the impairment can be seen as the act of disruption of the status quo of the non-disabled person’s life, ‘A story event creates meaningful change in the life situation of a character’ (McKee, 1999: 34). As in fiction a narrative is best understood when a clear change has happened. In the programmes analysed there is a lot of people with acquired spinal injury this maybe because a non-disabled audience is thought to be able to empathise with this kind of impairment. Sutherland (1981) suggests that people relate to visual impairment in the same way:

If so, the difference probably lies in the fear that many able bodied people have of blindness as something they can imagine happening to them, which is not an attitude they have towards, for example, cerebral palsy or polio. (14)

Even in programmes where there is a wide range of impairments the acquired injuries get more dramatic attention. Editing means that Sophie’s experience in Beyond Boundaries is a memorable section of the series. The spinal injury narrative of a reckless action followed by an angry paralysed person that ends with some kind of acceptance is sometimes told unnecessarily. This can be seen within Murderball where the story of Keith returning home from rehab is told even though he has nothing to do with the Paralympics wheelchair rugby team, which is the focus of the documentary. This only further proves the need society has for hearing the journey of disabled people from isolation to acceptance.

The situation is made more dramatic in Beyond Boundaries by the repeated showing of gory pictures of the participants when they were in hospital shortly after their accidents.

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The medical aspect of the impairment is also made dominant in Murderball by the use of captions. In the exposition of the documentary athletes are introduced in a scene where they are moving around in their wheelchairs at a training session. The frame freezes on each of the athletes individually and a caption appears, saying: their name; the nature of the incident when they acquired the injury; and how long they have had the resulting impairment for. This not only dramatically emphasises their impairment as a key feature of their identity but the inclusion of details of the length of time also firmly establishes how far along the journey to acceptance each athlete may be.

In the early stages of both programmes it is not yet clear which discourse; ‘coming out as a disabled person’ or ‘coming to terms with impairment’ the journey to acceptance narrative will follow. Indeed as the programmes progress there are elements of both discourses contained within the narrative of both documentaries. These contradictions lead to more discourses being created,

New ensembles of discourses ensure that the resultant material semiotic object, whether 'textual' or other, is always new in some significant respect. The appearance of the discursive ensemble and its materialisation as text or other object has its effect on each of the co-present discourses. In the compromise of accommodation to each of the co-present discourses, each discourse is transformed. (Kress, 2001:64).

Alongside the repeated reinforcement that disability is a medical tragedy there is also some quite apparent stories that conform to the ‘coming out’ discourse, within Beyond Boundaries. An example of this is Glenn’s camp fire admission of past denial of group that I quoted in the chapter previous. There is also heavy focus on the personal narrative of Sophie who also partially becomes more politically aware about her disability during the course of the journey through the jungle. However, Sophie’s journey is one of confusion, for both herself and for the audience. There are repeated scenes throughout

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the series of her retelling the story of the incident when she acquired her impairment. Also reinforced, by the fact that the piece to camera scenes are repeated, is the fact of how much an ordeal her impairment is:

I don’t know whether they really understand, I have no balance, I have no feeling, I have no movement in my whole body all I have is my boobs and my arms and my head. I want people to understand exactly what is wrong with me. I don’t mind people knowing about my problems with how I have to go to the loo, that I have to use a catheter to pee and that I have to put a fucking finger up my arse to go to the loo, but I want people to know how hard my life is and how hard it has become since my accident. (BBC 2, October 2005).

Here Sophie very much medicalises her own impairment and does not appear to have ‘come to terms’ with the restrictions that it brings. She invested a lot of her identity into her physical ability or newfound lack. Throughout the series she talks of ‘losing everything I ever loved’ and ‘more sadness and loss and grief and just unfairness in my life than is right, it just shouldn’t happen’ (BBC 2, October 2005).

The trek involved in Beyond Boundaries creates an interesting dichotomy between the physical and emotional. The producers try to create an external challenge that requires the participants to face internal challenges in order to work together. This is demonstrated by two scenes intercut: the first is where the participants are navigating canoes down a jungle river; the second features Lorraine doing a piece to the camera and images of her doing her housework. Over all the scenes Lorraine’s voice over is present:

I don’t want people to see my leg because I’m probably just vain. Where before my accident I’d be in little skimpy shorts with little cheeks hanging out and stuff and I don’t really want people to see what I’m really like under my trousers. But I’m prepared to get over it; I’m going to get over it. (BBC 2, October 2005).

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Here Lorraine talks of a denial which can be argued fits into the ‘coming out’ discourse, her pledge ‘to get over it’ can be seen as adopting the positive self image of a disabled person. This personal journey is directly compared to the trip down the river that the audience sees alongside her story. In this way the trek is presented as a metaphor for the challenges that the participants face in everyday life as disabled people. However, the fact that the trek is reliant on immense physical exertion, any real commitment to the ‘coming out’ discourse, explicitly or implicitly, is fundamentally undermined.

Throughout Beyond Boundaries there are repeated denials of disability or impairment from the majority of the participants. Jane a double amputee first comment was concerning how her doctor colleagues treat her, she reports them saying: ‘…but you don’t count. You don’t count as one of them’. She goes on to say ‘I’ve never sort of, I’ve never really felt disabled’ (BBC 2, October 2005).

Denial is an important part of the ‘coming out’ discourse however when stated in Beyond Boundaries there is often a sense of ambivalence to the participants not accepting they are disabled. In Every Time You Look At Me acceptance, of Nicki and Chris, by non-disabled people is presented as having down sides where as in Beyond Boundaries it is sometimes presented as a completely positive thing. Amar says: ‘My disability isn’t really at the forefront of my mind, I listen to music, do drama, I’m in a team of finance people and by the way you know I’m blind’ (BBC 2, October 2005). Here his impairment is compared to the leisure activities he enjoys, as he makes the valid point that his identity is defined by more than just his impairment. However valid this point is in making it he is setting his impairment against the fact that he is a rounded person. This has the effect of creating a statement about the disabled self which, at best can be considered as ambiguous and at worst implies that most disabled people do not have full lives.

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The 'New ensembles of discourses' (Kress, 2001:64), have increasingly simplified conclusions because the more complex elements of the discourses clash and therefore in effect cancel each other out. Lorraine’s and Glen’s commitment to adopt a more positive disabled identity, to ‘come out’, is contrasted with ambivalent denials of disabled identities from other participants of Beyond Boundaries.

What results is an overcrowded and chaotic narrative which inevitably tends to simplify what it seeks to describe and explain precisely because it is impossible to condense and contain such a rich and complex history in one brief burst of discourse. Mercer, 1994:234)

This leaves the more basic common strands to become dominant and the audience of the programmes referring to their knowledge of other cultural discourse to make sense of what they are watching.

The key point, however, remains this: meaning does not only reside in discourse and design, it also resides in production. It results from human engagement with the world, and the resources we use in articulating and interpreting meaning comprise both semiotic modes and semiotic media. (Kress, 2001:68).

Even the more explicit expressions of the ‘coming out’ discourse, like Every Time You Look At Me, can not escape the fact that the majority of the audience will relate to disability through the dominant medical model schema.

Even though the concept that is being denied is different, one being the medical impairment and the other being the political identity of a disabled person, the processes shown in the two discourses are similar. In both, a personal internal struggle is fought by the disabled individual where denial is presumed to be prevalent and understandable. Both discourses involve a moment of realisation where angry youth turns into a mature

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self acceptance. To some extent this means that the ‘coming out’ discourse even though heavily tied in to the social model takes an individualist approach to disability, more often connected with the medical model.

Ultimately the similarities between the ‘coming to terms with impairment’ discourse and the ‘coming out as a disabled person’ discourse creates a confused and diluted message. The result positions disabled people as being involved in an eternal quest for acceptance.

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Conclusion

It is the fact that disability has such negative connotations within wider culture that makes a state of denial seem credible. There are many negative stereotypes connected with disability and impairment that mean that society sees disabled people as leading inferior lives. The negativity surrounding disability is reinforced by the majority of representations of disabled people in the media. Television representations contribute to certain stereotypes which code the identity of a disabled person as invalid.

When this is the case a state of denial is not only represented as common for people dealing with impairment, but is justified as a reasonable reaction by representations with such negative views of disability. This dissertation has identified a discourse that uses this denial as a starting point, and has been termed the ‘coming to terms with impairment’ discourse. It has been shown that in contemporary British television this discourse is dominant. One of the main features of this discourse is that before disabled people can move from denial to acceptance, limitation of their impairment has to take place. Therefore narratives that conform to this discourse often take place in a medical setting and often focus on the disabled person’s steps back towards physical “normality”. The acceptance, on offer within the discourse of ‘coming to terms’, is an acceptance that a disabled person's life will be less fulfilling and productive than a non-disabled person’s life.

In response to the very medicalised discourse that is ‘coming to terms with an impairment’ there is a more progressive set of narratives that follow the ‘coming out as a disabled person’ discourse. This dissertation has highlighted the origins of this new discourse in theories of disability studies. The claiming of a positive disabled identity and finding a commitment to political activism is presumed to be a very cathartic experience for all disabled people. The political aspect of the discourse is manifest in progressive television programmes that are self-consciously addressing issues of past misrepresentation and debate the issue explicitly or implicitly within the text. Often these programmes also feature the telling of personal anecdotes where disabled people initially deny a collective identity before having an epiphany and ‘come out’. The analysis shows how the grammars of the discourse are similar both in its forms as academic theory and in its incarnation within progressive programming. Older disabled people who have been through the cathartic process are commonly seen imparting their knowledge on a younger, angrier group of disabled people.

The fact that both discourses share similar features and are often present within a television programme simultaneously, raises problems for the effectiveness of the ‘coming out’ discourse. Due to the fluid nature of the creation and dissemination of discourse (Kress, 2001) it is hard for these new narratives that explore the formation of the disabled self to escape the grip of more medicalised schemas.

Both discourses encourage narratives that take disabled people on individualized journeys from a state of denial and isolation to a state of acceptance. However, as discussed in Chapter 5 these discourses are not always told within clear guidelines and indeed elements of both are often expressed within the same text. This means that audiences familiar with the much more dominant medicalised discourse of ‘coming to terms with an impairment’ will not appreciate the subtleties of the new progressive ‘coming out as a disabled person’ discourse. This results in a fluid homogenous discourse that places disabled people on a seemingly never ending quest for acceptance.

Both forms of denial stem from the negative assertions that surround the disabled self. However, as the ‘coming to terms with impairment’ discourse accept the inferior status of disabled people the ‘coming out as a disabled person’ discourse makes a claim of positive action and a group commitment to emancipation.

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Even though the denial expressed by both discourses are different from each other the fact that disabled people suffer some kind of denial seems absolute. There is a presumption that all disabled people encounter negative responses from their environments and so initially have a low self esteem. For the case of the ‘coming to terms with impairment’ discourse this reinforces stereotypes, of the embittered cripple angry at the world. For the ‘coming out as a disabled person’ discourse this creates a presumption that all disabled people have the same problems forming their identity, reinforces the idea of a collective oppression. Acceptance again has different connotations within the different discourses, however the significance of this goal when achieved is unchallenged in both. This creates little room for other narratives to be told about disabled people as these transformative stories of self seem to be the only narratives being told. This is demonstrated by the fact, that within the programmes analysed: a trek across South America; an illicit love affair and the preparation for the Paralympics of a team of athletes; all include transformative stories of the disabled self at their centre. It seems impossible for narratives concerning disabled people to be told on television that do not conform to either of the discourses that have been discussed. This creates a very limited view of the reality of disabled people’s lives.

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Appendix 1

The medical model acts to

..the medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and, significantly, as an individual burden personal tragedy. Society, in agreeing to assign medical meaning to disability, colludes to keep the issue within the purview of the medical establishment. (Linton,1998:11).

The Social Model defines disability as

..the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS, 1976, quoted in Swain et al 2003: 23).

And impairment as

.. lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body. (UPIAS, 1976, quoted in Swain et al 2003: 23).

Linton, S (1998) Claiming Disability. New York: New York University Press

Swain, French and Cameron (2003) Controversial Issues In A Disabling Society. Buckingham Open University Press.