Professional Documents
Culture Documents
Dangaerous Discourses of Disability, Subjectivity and Sexuality.-75-81
Dangaerous Discourses of Disability, Subjectivity and Sexuality.-75-81
and shame that the medical model has implicitly endorsed to embrace
the non-normative, and to generate the very different reality evidenced
by positive self-representations of disabled people. At the same time,
specific empirical studies (Nosek et al 2001; Shuttleworth 2002) have
uncovered a level of sexual expression that belies the myth of asexuality.
It would be easy to assume that the widespread ignorance of both the
sexual actuality and potential of disabled people that persists despite
such moves was no more than that, but in a socio-cultural context that
has trouble acknowledging irreducible differences of all kinds, the ben
efits of a better education about how non-normative others could or do
express their sexuality seem limited. None of us is able to escape the
coils and effect of normative discourse, and it takes courage to resist
dominant attitudes and values and insist that things could be other
wise. While loving and caring relationships involving disability on one
or both sides are usually - though not always - approved and recognised,
and functional sex may be reluctantly admitted by the non-disabled
majority and increasingly claimed by those who are disabled, the real
problem lies in the widespread disbelief or denial that sexual pleasure
could be any part of such relationships, still less that desire could be val
ued for its own sake. It is where the sexual intention concerns not the
goal of reproduction, but the expression of desire as such, that the dis
qualification of disabled people from the discourses of pleasure is at its
most acute - an absence that can be as marked in the disability activist
agenda as in mainstream concerns.8 1 shall return to this, but first it is
worth exploring in more detail both the advances and the constraints
that have shaped the recent sexual politics of disability. In particular the
emergence and subsequent dominance of the social model of disability
has been the occasion for some very impressive improvements to the
conditions of everyday life, whilst at the same time serving to discour
age exploration of some very specific concerns in which sexuality in all
its aspects - relationship, identity, expression - is a major factor.
In broad terms, the theoretical and activist challenge to the med
ical model of a pathologised body as the meaning of disability has
successfully replaced that image with a model that insists on consid
eration of the injurious effects associated with the social construction
of a devalued identity. As I have already outlined, the drawback of
the shift to a recognition of the contingent obstacles and barriers that
society places in the way of those who cannot function according to
normative standards has been that the actual significance of differential
embodiment - a significance never captured by the medical model - may
be easily overlooked. More specifically, the move away from a focus on
68 Dangerous Discourses
the pathologised body has often sidelined the body as such and played
into the existing tendency of disabled people to discount the need for
recognition of their sexual becoming. In recent years, the shortcom
ings of the social model of disability have been more widely discussed
(Shakespeare 2000) with a greater emphasis given to understanding the
phenomenology of embodiment (Paterson and Hughes 1999; Price and
Shildrick 2001; Snyder and Mitchell 2001). In short, as I discussed in
some detail in Chapter 1, bodies matter not because we live in them,
but because the experiences that constitute the self are always embod
ied. As the sexual activist and theorist Eli Clare comments, 'in defining
the external, collective, material nature of social injustice as separate
from the body, we have sometimes ended up sidelining the profound
relationships that connect our bodies with who we are and how we expe
rience oppression' (2001: 359). The more particular problem, then, is
that the social model analysis can neither fully account for, nor mobilise
concern for, the silencing and invisibilising of the sexuality of disabled
people. What is at stake clearly encompasses more than the removal of
obstacles, and alternative approaches that emphasise that living in the
world is always a matter of embodiment are better positioned to open
up and address the domain of sexuality as part of the wider problematic.
Nonetheless, given my own further interests in the operation of a cul
tural imaginary, I think that although phenomenology is essential, it is
not sufficient by itself. What is required is an intersectional analysis that
considers the interlinked significance of various perspectives, as well as
the places in which a particular analytic model takes precedence.
For many disability activists the slow moves over recent years towards
what is called independent living - which signals a mode of existence
that is structured by personal choice and the self-administration of wel
fare benefits - has delivered many improvements in the way in which
disabled people are able to manage their own lives, not least in the area
of sexuality. Instead of being subject to the supposedly best-practice
standards imposed on them by external agencies - be they state con
trolled or commercial - recipients of the UK independent living allowance9
are now theoretically able to set their own priorities, which may well
include allocating resources for the satisfaction of desires as well as
needs.10 Clearly, such provisions open up extensive new arenas to the
search for personal fulfilment and, more importantly, they break with
one of the major obstacles to disabled people being enabled to engage
fully with their own sexuality. In a society self-consciously committed
to equity, the conceptual split between what is classed as a need and
what is classed as a desire plays into a distinction between those claims
Contested Pleasures and Governmentality 69
The difficulty, of course, is that even those disabled people who are sex
ually conservative in their own identities may find that their personal
options for sexual expression may by necessity fall outside normative
practice, not least in requiring active assistance. While some participants
in Earle's study - who all occupied a role that represented the progressive
side of social policy - were willing to facilitate requests, many were con
fused, defensive, offended, and dismissive about their employers' needs
for sexual assistance. One of the most resistant helpers, a young man
named Derek, was noteworthy for his argumentative invocation of the
72 Dangerous Discourses
I mean if you don't get your pee or your shit out you’re going to
explode. You know you're going to be in serious discomfort you're
going to be sitting in a mess for the rest of the night, whereas, you
know masturbation...
(Earle 1999: 316)