ANEXO C: ENTREVISTA PRISCILA A ver, que edad tienes?

There 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 and intellectual

33 Inextricably tied to the disregard for unique disabled identities lies the main critique against the social model – its failure to reflect the personal and emotional content of disabled lives (Beauchamp-Pryor, 2011; Hughes, 2002; Hughes & Paterson, 1997; Morris, 1991; Reeve, 2002; Shakespeare & Watson, 1997). Watermeyer (2013) vividly describes the existing and “alive” inner worlds of people with disabilities. He writes, “Disabled lives carry every aspect of human complexity; of relationship, uncertainty, self-regard, loss and hope” (p. 44), and elsewhere, “It is becoming clear that the world of disability has human reach which extends way beyond the material and rational, beyond tangible barriers, to the recesses where these are mirrored in psychic life” (p. 44). However, in contrast to this moving acknowledgement of human complexity within the psychological lifeworlds, social model writers deliberately overlooked the personal and emotional experience and pain of a body that is impaired

(Shakespeare, 2006; Shakespeare & Watson, 2001; Thomas, 1999, 2001; Watermeyer, 2013).

Often, this disregard for the personal stemmed from a fear of the gloomy consequences of medicalisation (Watermeyer, 2013). Early disability writers who vividly remember medical discourse and oppression, may be cautious that a focus on the personal inner struggles of people with disabilities would subsume any political agenda. It may have been their belief that, if dependency and vulnerabilities of people with disabilities become known, this would confirm disabled stereotypes. Hence, they were concerned that vulnerability and personal acknowledgement of struggle would counter political action and thereby, inevitably, lead us back to domination and control over our lives. In denying social systems‟ role in the

construction of disability, they argue, people with disabilities will return to the margins of society (Abberley, 1987, 1996; Barnes, 1990; Oliver, 1986, 1990). Shakespeare (1996) captures this fear when he writes, “to mention biology, to admit pain, to confront our

impairments has been to risk the oppressors seizing on evidence that disability is really about physical limitation after all” (p. 40).

34 Watermeyer (2013) acknowledged that these fears were not entirely ungrounded. Indeed, stories of personal tragedy tend to overshadow accounts of discrimination. However, he argues, we should not brush over these inner worlds, not least because they reveal very real experiences and painful effects of disablism (Watermeyer, 2013). Therefore, he continues his warning, excluding the psychological from disability theories may be impoverishing and even dangerous. Separating the experiences of the impaired body from the political agenda might lead disabled people to disown their personal feelings or hide them for political gain. They might get to believe that showing their vulnerabilities will be toxic and render the political movement ineffective. Hence, they might trade authentic acknowledgment of inner feelings for political emancipation (Watermeyer & Swartz, 2008). In hiding the painful, bereaved parts related to disability, we deny others the chance to know us fully and we stand the risk of self- alienation (Watermeyer, 2009).

Underscoring this belief, feminist writers such as Morris (1991, 1992, 1996), and Wendell (1996) call this alienation of personal experience an injustice. In conjunction with feminist theory, they claimed that the personal is also the political (Reichart, 2014). These feminist writers argue that impairment involves some form of suffering, pain and loss and that it is politically honest and valuable acknowledging these bodily experiences rather than reducing them to the removal of societal barriers (Hughes, 2004).

From this it flows naturally that recent disability authors started arguing for a theory that would capture and reflect their embodied, psychological experience (Crow, 1996; Howell, 2005; Morris, 1993; Schneider, 2006; Shakespeare & Watson, 1997; Watermeyer & Swartz, 2008). Some authors even claim that it is possible to understand disability as both a political struggle and phenomenological experience (Turner, 2001; Williams, 2001), since it is both individually and socially caused (Schillmeier, 2008). While social model writers have

35 responded to this criticism by claiming that the social understanding of disability does make room for bodily experience through its distinction between biological impairment and societal disability (Shakespeare, 2014), Watermeyer (2013) proclaims, “The social model movement, like other revolutionary formations, is incomplete without an account of the personal and psychological, but simultaneously unable to accommodate one” (p. 39). In this distinction between extreme opposites, the biologically impaired body is similar to the medical model‟s body. In this conception, the body has no history or meaning, but is thrown into the world with only biology as its essence. It is timeless, physical and separated from the self and culture. Hughes and Paterson (1997) write, “It also posits a body devoid of meaning, a dysfunctional, anatomical, corporeal mass obdurate in its resistance to signification and phenomenologically dead, without intentionality or agency” (p. 329), and further “. . . within disability studies the term “body” tends to be used without much sense of bodiliness as if the body were little more than flesh and bones” (Paterson & Hughes, 1999, p. 600). Opposing this view, Paterson and Hughes (1999) point out that the impaired body is an active agent in political change, rather than the passive victim of fate. According to Shakespeare (2014) the biological impairment and societal disability is always intertwined and simply cannot be separated into two neat categories. It is therefore no surprise that Hughes and Paterson (1997) plead for a realignment of the impaired and disabled body.

In other accounts, social model authors argued that emotional and psychological pain and discomfort should be viewed as a direct consequence of political marginalisation (Abberley, 1993; Finkelstein & French, 1993; Oliver, 1995). However, in my inability to see my husband‟s face, to appreciate in all sensory fullness the impressions of nature; if all these losses make me sad – can I blame social oppression for it? Could I hold others, albeit political figures or close friends, accountable for these unremedied parts of my impairment? In the face of these undeniable and often inescapable realities, I want to agree with Watermeyer (2013)

36 when he writes about the social model‟s conception of psychological issues. He writes, “It is . . . inaccurate to accuse social model authors of completely ignoring the psychological realities of disablism, but it is undeniable that the model allows for the most awkward of spaces to examine these issues” (p. 39).