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Becoming dishuman: Thinking about the human through dis/ability

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DOI: 10.1080/01596306.2014.930021

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 Discourse: Studies in the Cultural Politics of Education

ISSN: 0159-6306 (Print) 1469-3739 (Online) Journal homepage: http://www.tandfonline.com/loi/cdis20

Becoming dishuman: thinking about the human

through dis/ability

Daniel Goodley & Katherine Runswick-Cole

To cite this article: Daniel Goodley & Katherine Runswick-Cole (2016) Becoming dishuman:
thinking about the human through dis/ability, Discourse: Studies in the Cultural Politics of
Education, 37:1, 1-15, DOI: 10.1080/01596306.2014.930021

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 Discourse: Studies in the Cultural Politics of Education, 2016
Vol. 37, No. 1, 1 – 15, http://dx.doi.org/10.1080/01596306.2014.930021

Becoming dishuman: thinking about the human through dis/ability

Daniel Goodleya* and Katherine Runswick-Coleb
a
School of Education, University of Sheffield, Sheffield, UK; bResearch Institute of Health and
Social Change, Manchester Metropolitan University, Manchester, UK

In this paper, we seek to develop an understanding of the human driven by a

commitment to the politics of disability, especially those of people with intellectual
disabilities. Our position as family members and allies to people associated with
this phenomenon of intellectual disability influences our philosophical conceptions
and political responses. This has led us recently to develop a theory of dis/human
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studies which, we contend, simultaneously acknowledges the possibilities offered by

disability to trouble, reshape and re-fashion the human (crip ambitions) while at the
same time asserting disabled people’s humanity (normative desires). We sketch out
four dis/human considerations: (1) dis/autonomy, voice and evacuating the human
individual; (2) dis/independence, assemblage and collective humanness; (3) dis/ability
politics, self-advocacy and repositioning the human; and (4) dis/family: desiring the
normal, embracing the non-normative. We argue that this feeds into the wider project
of dis/ability studies, and we conclude that we desire a time when we view life
through the prism of the dishuman (note, without the slash).
Keywords: disability; humanism; human; civil society; dishuman; inclusive education

1. Introducing dis/ability studies

Our personal and professional associations with the politics of people with the label of
intellectual disabilities1 have driven the writing of this paper. Our aim is not simply to
write a theoretical paper for theory’s sake (a naval gazing indulgence according to some
disability studies scholars, such as Barnes, 2012 and Shakespeare, 2013). However, we
do seek to find new vocabularies in order to honour the humanness inherent in dis/ability
alongside its disruptive potential. Hence, we find that, at times, there is nothing better
than doing theory for theory’s sake because dis/ability’s disruptive potential urges us to
engage in such doings. This contrary relationship with theory captures a more generalised
ambivalence. We seek to develop an understanding of the human being that is driven by a
commitment to the politics of disabled people associated with the label of intellectual
disabilities. Let us be honest here – we hate having to use these labels at all, and worry
that they violently mark our children, peers, friends and allies. Our position as family
members and friends to people associated with this thing called ‘intellectual disabilities’
directly influences our ‘philosophical conceptions of cognitive disability’ by virtue of our
personal experiences that create an ‘inextricable relationship between the personal, the
value of the political, and the philosophical’ (Kittay, 2009, p. 606). We do, though, note
the ways in which the offerings and takings of labels function in disabled people’s lives to
include or exclude. Moreover, we recognise a tradition in which the presence of disability,

*Corresponding author. Email: [email protected]

© 2014 Taylor & Francis
 2 D. Goodley and K. Runswick-Cole

no matter how we define it, does some profound things to our thinking about the human
(Kittay & Carlson, 2010). Intellectual disability is always profound because it enlarges,
disrupts, pauses, questions and clarifies what it means to be human. Intellectual disability
‘disses’ (or disrespects) the human but it also desires the human. People with intellectual
disabilities seek to be recognised as human: ontologically, materially and politically. In
our personal and professional entanglements with people who are associated with the
label of intellectual disabilities we have discovered some bound and freed moments as
disability and humanity come together. Disability has the radical potential to trouble the
normative, rational, independent, autonomous subject that is so often imagined when the
human is evoked, social policies are made, social and human sciences are developed and
forms of activism are enacted. This is the dis of our dis/human approach.
Indeed, people with labels of profound intellectual disabilities offer us exciting new
ways of thinking about our humanness in relation to interdependence, mutuality and
interconnection (Goodley, 2014). They extend and expand what it means to be human
beyond the narrow, normative and rigid view of the neoliberal capitalist self (Kittay, 2002).
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Simultaneously, many of these same individuals, their families and allies crave recognition
from the human register. It feels like they occupy this strange and precarious no-man’s land
in-between disability and humanity. One only has to recall recent media stories of abuse of
disabled people with intellectual disabilities in the British care system to see evidence of this
precarity.2 On closer inspection, however, we are relieved to find, that intellectual disabilities
is a phenomenon that illuminates humanness and disability. We describe this reality as a dis/
human one which, we contend, simultaneously acknowledges the possibilities offered by
disability to trouble, reshape and re-fashion traditional conceptions of the human (to ‘dis’
typical understandings of personhood) while simultaneously asserting disabled people’s
humanity (to assert normative, often traditional, understandings of personhood).
Our dis/human approach builds upon our recent theoretical writing (e.g. Goodley &
Runswick-Cole, 2012; Goodley, Lawthorn & Runswick-Cole, in press; Runswick-Cole &
Goodley, 2011) and our commitment to both critical disability studies (CDS; Goodley,
2011) and the fledgling dis/ability studies (Goodley, 2014). These interdisciplinary
approaches to the study of disability and its antitheses (ability) have emerged in what has
been termed second-wave disability studies writing. If the first wave of disability studies
was about securing a political and sociological handle on the workings of disability in
capitalist society, second-wave analyses were connected with other transformative
politicised agendas including feminism, queer and post-colonial politics. Second-wave
writers drew across the disciplines of the human and social sciences to develop what we
consider to be CDS. Proponents of CDS emphasise the complex social, cultural, material
and economic conditions that undergird the exclusion of disabled people – a term Thomas
(2007) refers to as disablism.
As one of us has argued, CDS hold up the disability identity as a moment of reflection
that Davis (2002) coins as dismodernism, and impairment and disability are interrogated
as phenomena enacted at the levels of the psyche, culture and society (Goodley, 2011,
2012). While CDS might start with disability, they never end with it: remaining ever
vigilant of political, ontological and theoretical complexities. And in order to analyse
disablism we need to be mindful of the complementary hegemony of ableism. CDS
contest both disablism and ableism. One key theoretical development of CDS relates to
the disruptive, desirable and resistant or crip qualities of disability. Crip theory is one of
the strongest growing insights in contemporary CDS. The work of Robert McRuer (2006)
 Discourse: Studies in the Cultural Politics of Education 3

has catalysed relations between disabled and queer activists. For Sykes (2009), disability
studies have:
interrogated what gets counted as a ‘normal’ body, challenging taken-for-granted ideas about
mobility, productivity, and even that anybody is able across different circumstances and times
of life. (p. 248)

She continues:
focusing critical analysis and politics on the construction of normative bodies, in this case
‘able’ bodies, has obvious similarities with queer theory and has recently developed into crip
theory, which seeks to analyze, and challenge, connections between the social construction of
heteronormativity and able-bodiedness. (Sykes, 2009, pp. 247–248)

Queer and disability studies have the potential to unsettle one another and find shared
vocabularies embodied in McRuer’s term of crip theory (Goodley, 2014). Recently, this
has led us to an emerging analytical approach of CDS which one of us (Goodley, 2014)
refers to as dis/ability studies.
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Dis/ability studies acknowledge the theoretical, practical and political work that takes
place either side of the binary, a binary denoted by the presence of ‘/’ (the slash). Dis/
ability studies ask us to consider how we value the human and what kinds of society are
worth fighting for. One might suggest that many disabled people have been denied the
opportunity to occupy the position of the modernist humanistic subject: bounded,
rational, capable, responsible and competent. Being recognised as having these ideals is
understandably a big deal (it is a mark of being considered human after all) and
emphasises one side of the dis/ability binary in order to make a case about a valued
human. Consider, for example, any Paralympic athlete whose work, preparation and
conditioning were recognised in terms of sporting athleticism rather than achievements in
spite of his/her disabling impairments; consider parents with intellectual disabilities who
have been judged fit enough to keep their children. Each athlete and parent has proven
their individualistic worth in their respective fields of sport and parenting. They have
shown they are (uber) able. We know, too, that this modernist ideal of the human subject
that undergirds and feeds our philosophical, sporting, educational and legal frameworks –
if left to be the only way to live life as a human subject – would displace large sections of
the population who will, perhaps, fail to match the ideal. Disability has the potential to
emphasise the other side of the dis/ability binary; disability asks of ability: ‘Is that all
you’ve got: ability?’ ‘Are you really that superficial in what you consider to be worthy of
merit?’ and ‘Is individual achievement all you desire and live for?’ Dis/ability studies
allow both poles of the binary to be held in tension precisely because this is what happens
everyday in the mundane and ordinary lives of those who find themselves working with
the dis/ability complex. Dis/ability, we suggest (and the ensuing analyses provided
through dis/ability studies), has the potential to fundamentally destabilise things that we
have taken for granted. Moreover, dis/ability studies permit a moment of critical
reflection or reflexivity: to revisit ideas that we might have taken for granted.
In this paper, we argue that a dis/ability studies approach allows us to recognise the
ambivalent relationships that disabled people with intellectual disabilities have towards
traditional notions of the human. A dis/human analysis allows us to claim (normative)
citizenship (associated with choice, a sense of autonomy, being part of a loving family,
the chance to labour, love and consume) while simultaneously drawing on disability to
trouble, reshape and re-fashion liberal citizenship and, thereby, to invoke what we call
 4 D. Goodley and K. Runswick-Cole

dis/citizenship (to rethink how we choose, act, love, work and shop). This perspective
draws on the lessons from crip theory (which we have discussed above) to celebrate the
disruptive qualities of disability, whilst acknowledging the complex associations of
disablism with other forms of oppression including hetero/sexism and racism, and sets
out an analytical agenda of contemplating how the dis and the able are always working in
tandem as simultaneous processes that are, at times, in contradiction and, at other times,
in line with one another (Goodley, 2014). Ableism is, following Fiona Kumari Campbell
(2009), a world view, a preferred ontology and methodology for the making of
humankinds that will eventually, if left unchallenged, bulldoze the disparate variegated
nature of humanity. Ableism is an entity around which many ethical political souls can
organise against. When we start to interrogate ableism and ability, then disability emerges
not just as the Other side of the oppressive coin but also as a resistant alternative. Dis/
ability studies draw attention to the work that takes place either side of the binary. As
researchers and activists who associate our work with CDS, we also seek to address
criticisms identified by Vehmas and Watson (2013). In their paper, they suggest that CDS
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writers are in danger of committing ‘normative disorientation’, specifically around the

difficulties such writers have with ableism. They suggest that in viewing ableism as
always oppressive, CDS writers such as ourselves are in danger of ignoring normative
desires of society for well-being, health and a good life:
Is the promotion of the use of folic acid before and during pregnancy based on an anti-
disablist or perhaps ableist viewpoint; and if so, should CDS be campaigning against those
who seek to promote these views? (Vehmas & Watson, 2013, p. 3)
We acknowledge that, at times, equating all things able to all things oppressive is
problematic. Moreover, we have found in our work with the politics of people and with
the label of intellectual disabilities, an appeal to normative idea(l)s including a right to
work, education, a healthy love life, heteronormative desires for family, marriage and
parenting. A CDS approach need not inevitably lead us down a path where we ignore the
importance of normative, perhaps even, ableist ideals, but, and this is the crucial point
here, the presence of disability always disrupts, shakes up and interrogates the normative
position. We may desire normative but what we might define as a dis/normative desire
demands us to think again about the values and consequences of what we desire.
Disability inevitably disorientates normativity. Take, for example, these tricky questions
(taken from Goodley, 2014, p. 155):

. When you celebrate one of your children excelling and getting A grades in their
end of year exams, are you being ableist?
. If my football team beats your football team and I punch the air with glee, am
I embracing ableist normativity?
. By treating his depression with ante-depressants, has Brian bought into ableism?
. Does the treatment of Dan’s short-sightedness with eye laser treatment denounce
the ontologies of blind people?
. When activists with the label of intellectual disabilities use the term People First to
describe their politics are they distancing themselves – in a normative fashion –
from other disabled people?

The answer to each question, and to the question posed by Watson and Vehmas above is
‘no – as long as the debates, questions and conversations about the dis/ability complex
 Discourse: Studies in the Cultural Politics of Education 5

continue’ (Goodley, 2014, p. 155). We all feel a fundamental problem of the seductive
nature of (hyper)ability in terms of its individualistic tendencies. It:
yearns to internalize: to find a home in each and every one of us: to reside in our interiorities;
to fuel our desires; to narrow our ambitions; to shape our worlds; a periscopic concern for
only our child and our team, distinct from an Other’s. (Goodley, 2014, p. 155)
We argue in this paper that a critical dis/ability studies perspective politicises the
experience of living with (or without) an impairment in contemporary society. Critical
dis/ability studies then keep in mind the pressure of both disablism and ableism and
contemplate how we circumnavigate these often-contrary and conflicting positions.

2. Dis/human: a post-human condition

There are times when it is essential to embrace the able or the normal. After all, like them
or loathe them, these phenomena undergird the language of citizenship, law and
humanity. We also recognise an imperative to ‘dis’ ability. To ‘dis’ is a slang term
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from African-American culture: to put down, fail to show respect, abuse and disparage.
At times, we will ‘dis’ the normal (necessarily refusing to show the normal the respect it
expects), while, at times, respecting the normal (when one thinks, for example, about
normative notions of human rights, morality and universal notions of basic respect of the
human). The prefix dis indicates negation, lack or deprivation: to deprive something of its
power. We feel this when we disagree. To negate is to nullify, invalidate, render null and
void, make invalid, neutralise, cancel out, undo, reverse, revoke, rescind, abrogate,
overrule, over turn, avoid and retract. To dis is to trouble. There is no doubt, whether or
not we like it, that the dis/ability complex does some troubling work to the register of the
normal and the condition of the human. This is hardly surprising when, paraphrasing
Tanya Titchkosky (2012), making lives on the edges of humanity takes some guile and
creativity. A dis/human position means that we recognise the norm, the pragmatic and
political value of claiming the norm, but we always seek to trouble the norm. Becoming
dis/human does not offer a prescriptive opposite to the conception of the norm, rather it
works away at a norm that is always, and only can be, in flux. Disabled and human are,
we suggest, too often set up as opposites, as the antithesis of one another. However,
following Puar (2012, p. 50), we argue that they need not be oppositional but, rather,
viewed as frictional: rubbing up against one another in interesting, dare we say,
desirable ways.
In thinking about our recent work with disabled people, their families and their allies,
we have come to think of dis/ability studies as having a number of bifurcated complexes
(Table 1).
Our thinking is still in the early stages of germination in relation to this list of dis/
human concepts. This paper allows us to start pulling apart, interrogating and testing out
the conceptual clarity and utility of these ideas. We want to ask what disability does to
typical, common-sense normative human categories of adult, youth and family. How
might disability affirm some of the ways in which these categories are lived out whilst,
simultaneously, demanding new ways of living (dis/life)? When we think of the goals of
capitalism, science, medicine and citizenship, what assumptions are these huge societal
practices based upon, and in what ways does disability disrupt these assumptions (dis/
capitalism, dis/science, dis/medicine and dis/citizenship)? Similarly, were we to accept
that disability has the potential to rethink how we might approach labour or independent
 6 D. Goodley and K. Runswick-Cole

Table 1. Dis/ability studies: becoming dis/human and other possibilities.

Dis/ability studies
Dis/human
Dis/life
Dis/citizenship
Dis/autonomy
Dis/neoliberal
Dis/normative
Dis/normal
Dis/choice
Dis/development
Dis/ablement
Dis/labour
Dis/advocate
Dis/qualify
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Dis/science
Dis/youth
Dis/family
Dis/medicine
Dis/populate
Dis/recognise
Dis/reason
Dis/adult
Dis/capitalism

living, what would this look like in reality (dis/work and dis/independence)? What do
disabled children do to the widely held phenomenon of the ‘normally developing child’
that is at the epicentre of many national educational systems (dis/development)? Equally,
though, what normative aspects of the child do we (should we) hold on to (dis/child)?
Dis/ability usefully disarms, disrupts and disturbs normative, taken-for-granted, deeply
societally ingrained assumptions about what it means to be human and what it means to
be able (dis/human). At the same time, however, we are mindful of keeping hold of the
human: not wanting to abandon it (dis/human). Who would want to give up the human?
When so much political work has been done around the human and his/her rights, it
would seem unthinkable to dismiss the human. But, we also worry about what the human
is (or what it has become) and the foundations on which this human is based. We are, of
course, not alone in having these anxieties. In the arena of dis/ability studies, Titchkosky
(2011, 2012, 2014) in particular has explicitly raised questions about the human as it
relates to disability. She observes:
Critical projects such as feminist research, gender and queer theory, and cultural and critical
race studies share an interest in questioning how certain people are regarded as on the edge
of all that counts as human. Disability studies shares this interest as well; it explores how
disabled people figure on the edge of the ordinary orders of daily life, including education,
work, leisure, and love, and it studies how such exclusion is normalized. (2012, p. 82)
She is especially concerned about the rigidity of what we often pass off as human. It
remains the case today, she argues, that despite the universal human condition of
 Discourse: Studies in the Cultural Politics of Education 7

embodiment, and even with efforts to establish a universal and transcendent sense of
human, not all bodies are granted the status of persons (let alone of human). In this sense,
she concludes, ‘segregated from life, disability appears as though it is detached from the
wider question of what it means to be human’ (2012, p. 82). Titchkosky’s work parallels
the post-colonial studies of Sylvia Wynter (2003) who describes her analytical–political
project as: Human Struggle vs. Ethnoclass Man (the capitals are in the original paper).
Her project circles around two questions: who is excluded from ethnoclass man and, in
contrast, who is engaged in human struggle? Those categorised as outside, excluded and
often invisible are that:
category defined at the global level by refugee/economic migrants stranded outside the gates
of the rich countries … with this category in the United States coming to comprise the
criminalized majority Black and dark-skinned Latino inner-city males now made to man the
rapidly expanding prison-industrial complex, together with their female peers – the kicked-
about Welfare Moms – with both being part of the ever-expanding global, transracial
category of the homeless/the jobless, the semi-jobless, the criminalized drug-offending prison
population. (Wynter, 2003, p. 260)
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To this list of outsiders we can add, we would argue, those people caught up in the dis/
ability complex. For citizens to claim a ‘normal’ North American identity entails putting
up of a ‘visible distance between themselves and the Black population group’ (Wynter,
2003, p. 260), and then over-presenting their normative selves as the only way to live.
Hence, the struggle of our times, ‘one that has hitherto had no name, is the struggle
against this over-representation’ (p. 262). She notes:
The central over-representation enables the interests, reality, and well-being of the empirical
human world to continue to be imperatively subordinated to those of the now globally
hegemonic ethnoclass world of ‘Man’. (p. 262; italics added)
Our dis/human studies remain, therefore, ambivalent about the human because too often
they represent only a minority and bypass the empirical human world (to use Wynter’s
vocabulary). Ambivalence is the state of having mixed feelings or contradictory feelings
about something or someone. Becoming dis/human is our response to the ambivalent
state we find ourselves in relation to the human. We are interested in the experience of
having simultaneously conflicting feelings towards this concept of the human. In trying to
understand dis/ability, we find ourselves necessarily ambivalent. Ambivalence – we are
told by the Oxford English Dictionary – relates to equivocation, doubt, uncertainty,
irresolution, vacillation, tentativeness, shilly-shallying, haziness and equivocacy. This
latter term also resonates with our feelings about the human. Our intimate experiences of
dis/ability have meant that we have found our interpretations lacking and are therefore
forced to commit the fallacy of equivocation. The fallacy of equivocation occurs when a
key term or phrase in an argument is used in an ambiguous way, with one meaning in one
portion of the argument and then another meaning in another portion of the argument.3
Our equivocacy around the human – and the ambivalence intrinsic to the equivocal
phenomenon of dis/ability – has been further illuminated through our work with people
with the label of intellectual disability and their allies and alliances. As we shall develop
in detail below, they have drawn our attention to the complex work they are involved in
around dis/human moments. Like Eva Feder Kittay, our lives with the phenomenon of
intellectual disability, both personally and professionally, have demanded us to rethink
our philosophical positions on the meaning and nature of what it means to be (dis)human:
 8 D. Goodley and K. Runswick-Cole

When we try to look at the world in the sunlight, we continue to see the very real shape of
many things too easily missed by others in the exposure of too much light. Even if
philosophy whitewashes disability and therefore passes over children such as ours, with their
impairments, with the special care they require, their lives direct us to the point and purpose
of philosophy – the pursuit of wisdom. Their lives help us in our quest to discern what the
meaning of life is; what makes life worth living or what makes a life a good life; what makes
relationships ethical; what personhood is; how to understand beauty, anomaly, function,
capacity, joy; what justice and equality are. (Kittay, 2002, p. 239)
Such philosophical work comes from rejecting the fiction that ‘philosophy is news from
nowhere’ and, instead acknowledging, ‘we’ve spoken from a position’ (Kittay, 2002, p.
240). One position that we have spoken from before – and one from which our interests
in the dis/human originates – is that of post-human theory (see for example Goodley &
Runswick-Cole, 2012). Now is not the time or space to capture this complex area of
theory and analysis. Suffice to say, though, that those of a post-human persuasion are
sceptical about the centrality of the individual in our everyday thinking. The fully
functioning person as an entity psychologised, internalised, rational, autonomous and
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individualised self – distinct, bounded and separated from others – is a classic humanist
trope. Appropriating Rosi Braidotti (2003, 2006), this categorisation of the same
individual human as distinct from many monstrous Others has a number of origins, one
of which is the enlightenment in which rational man emerged as victorious over irrational
nature. Following Goodley (2014, p. 63) are not only valued forms of humanness found
to have deep historical roots in the rise of science, rationality and capitalism, but they also
have been moulded further into preferential categories (reified types of humanity) and
their opposite (disposable forms of humanity). Erevelles (1996) carefully guides us
through this changing relationship with humanness:
[W]hen even those who espouse radical discourses seem unable to reconceptualise an
alternative world without being locked into the political constructions of what constitutes
appropriate humanness, then it becomes apparent that the disability movement has a task that
goes above and beyond merely extending the boundaries of the discourses that celebrate
humanism and instead needs to focus its energy on re-theorising itself. (p. 522)
Post-human advocates are primed ready to debate humanness and the taken-for-granted
assumptions that underpin such a ubiquitous though nebulous term (see Goodley et al.,
in press). What it means to feel human is also a matter of how one is meant to feel as a
human in contemporary society. We suggest that, like post-human interventions,
becoming dis/human allows us to interrogate the kinds of human currently valued by
society: humankinds that are contested and directly contravened by the presence of
disability. At the same time, desiring the dis/human allows us pragmatically and
politically to claim the human in the lives of disabled people with intellectual disabilities.
This, for us, is key to our project because of the ways in which the status of human has
been and continues to be denied in the lived experiences of disabled people with
intellectual disabilities.

3. Our research study and some emerging dis/human considerations

This paper emerges from the beginnings of a research project Big Society? Disabled
people with intellectual disabilities and Civil Society.4 The project runs from June 2013 to
June 2015 and is a partnership between four universities (Manchester Metropolitan
University, the University of Sheffield, the University of Bristol and Northumbria
 Discourse: Studies in the Cultural Politics of Education 9

University) working with three partner organisations (Speak Up for Action, the
Foundation for People with Learning Disabilities and independent living consultants) in
the UK. The overall research question is: How are disabled people with intellectual
disabilities faring in Civil Society and Big Society? Big Society is a contemporary policy
narrative associated with devolving state power to communities and creating a small state.
Big Society is premised on the assumption that free and equal citizens will participate in
their communities and this preoccupation with independent and rational citizen engagement
has positioned disabled people with intellectual disabilities in an ambiguous position in
relation to Big Society (Runswick-Cole & Goodley, 2011). The research will be carried out
through seven overlapping and interconnected phases as follows:

Phase 1: Key stakeholder interviews: interviews with disabled people with intellectual
disabilities, members of the third sector, policy-makers and lawyers.
Phase 2: Longitudinal documentary analysis: an extended analysis of academic and
policy literature relating to Big Society.
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Phase 3: Ethnographic case studies with co-researchers: an extended period of

ethnographic work with the three partner organisations.
Phase 4: Analysis: a period of analysis following the data collection in phases 1, 2
and 3.
Phase 5: Impact workshops: a series of impact workshops to share our findings and
develop analysis and impact.
Phase 6: Researcher in residence: a researcher from the project will work with partner
organisations to promote knowledge exchange.
Phase 7: Public Engagement Events: a series of events to share research findings and
increase the impact of the project.

[More details available at: http://bigsocietydis.wordpress.com/]

Ethical clearance has been gained and we are in the early stages of the overlapping phases 1, 2
and 3. This initial empirical work and meetings with research partners and the impact research
management group have pushed us to think, together, critically and theoretically about the
lives, ambitions and civil society of disabled people with intellectual disabilities. Our
partners’ practices, along with our own research experiences, led us to the ideas of dis/human
and a number of emerging considerations which we will now expand on. Our analyses are
necessarily tentative but do suggest some potency to our new analytical approach.

3.1. Dis/autonomy, voice and evacuating the human individual

Once upon a time in Yorkshire: Rachel arrives at the meeting by minibus from the local
Autistic Community. She does not speak often. She spends her time quietly and apparently
contentedly smelling her fingers and looking around the room. She doesn’t appear to interact
with any of her friends. At break-time Bill asked her if she would like a cup of coffee or tea.
Erica, who lives with Rachel, replied, ‘She likes coffee, don‘t you Rachel?’ Bill looked at
Rachel, ‘Coffee then?’ (Goodley, 2000, p. 193)
At the beginnings of our research, we were reminded of this story. Now some 14 years
old, the story relates to an event in a self-advocacy group, somewhere in Yorkshire,
witnessed by Dan during his Ph.D. research. Our new project will involve us revisiting
self-advocacy, post-Blair, the White Paper on Learning Disability, during a time of Big
 10 D. Goodley and K. Runswick-Cole

Society. It seems apt to revisit this story now as we begin our work with self-advocacy
groups. Dis/autonomy is made visible when self-advocacy group members participate as
citizens through their collective actions and, thereby, contest ‘the meaning and extent of
their citizenship’ (Armstrong, 2002, p. 342). Dis/autonomy recognises the relational,
rather than the individual, nature of autonomy in the lives of disabled and non-disabled
people. Dis/autonomy allows us to disrupt narrow notions of neoliberal citizenship while
acknowledging the pragmatic and political imperative to engage in and to claim such
discourse in neoliberal times. Interestingly, we as disability researchers have often
encountered colleagues who ask of the self-advocates that we quote or whose opinions
we cite: ‘Are they really learning disabled? Are they really representative of other people
with learning disabilities? What about the ones that cannot speak? Is it ok for others to do
the speaking for them?’ Such questions (admittedly with our italicised emphases)
implicitly evoke an idealist vision of the individual human being (speaking clearly and
rationally for themselves) and his opposite (mute and incapable of representation). In
contrast, the story of Bill, Rachel and Erica deconstructs such normative assumptions.
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The answer to Bill’s query does not come from the individual it was aimed at; instead, we
are treated with an answer from a distributed voice. The three work for one another in
order to proffer an analysis. This notion of distributed competence is a crucial element of
self-advocacy (Booth & Booth, 1994). At the same time, while the trope of voice as an
individual’s asset is troubled by this encounter, the three members collectively claim their
individual normative human worth in a self-advocacy group. We are people, individuals
in our own right, with preferences not just for tea or coffee but also for other elements of
our lives such as where we live, what we do in the daytime and who we would like to
share our lives with. This claim for autonomy – a human quality historically denied to
people with the label of intellectual disabilities – is often associated with the familiar
discourse of giving one’s voice: ‘speaking up’, ‘telling others how you feel’ are the
hallmarks of self-advocacy. ‘Being normal’, ‘being just like …’, ‘having the same rights
as …’, ‘having a home, a job, a family just like everybody else’; just like other human
beings, having a voice and others recognising this. Hence, again, we see disabled people
with intellectual disabilities flipping from one side of the dis/human binary to the other in
order to encapsulate their deeply complex political work. A dis/autonomous analysis of
the ambitions of self-advocacy groups recognises why members would desire the quality
of autonomy; precisely because this is a phenomenon often associated with an able
individual human being – a category that many members have been excluded from (dis/
autonomy). In contrast, but equally, Bill, Rachel and Erica’s interactional encounter
displays the playing out of autonomy in a distributed, relational and extended manner: a
form of distributed competence made so by the presence of disability (dis/autonomy).

3.2. Dis/independence, assemblage and collective humanness

An account from our Inclusive Living colleagues, Pete and Wendy Crane, along with
colleagues including person-centred planning coordinator Max Neil, have developed the
Circles of Support approach to community living. This involves individuals such as Matt (a
pseudonym) using their disability benefits to recruit a network of advocates and support staff
to support him 24/7 in his own home which is located a couple of streets down from his
parents. (Goodley, 2014, p. 168)
Pete, Wendy, Max and others desire a normal life for Matt. Yet, when we interrogate the
‘normal life’ enjoyed by Matt we find it to be extraordinary (or dis/ordinary) in the ways
 Discourse: Studies in the Cultural Politics of Education 11

in which it draws upon myriad forms of community support. Like any good collective,
Matt gets lost in the multitude of helping hands and collective gestures. Matt becomes
enveloped within the community assemblage. The concept of the assemblage is
developed by Deleuze and Guattari (1987) in an attempt to reappraise subjectivity by
visualising self-and-others as types of machine and assemblages that are ‘composed of
multiple and variously embodied parts that interchange and create new relationships,
alliances, and communities’ (Ramlow, 2006, p. 181). Just as Deleuze and Guattari contest
the centrality of the individually bounded self (distinct from others, solitary, alone and
sovereign in his actions), Matt equally contests what it means to be an independent
member of a community (dis/independence). But, simultaneously, he also necessarily
claims his independence: Matt is a homeowner, he has a job and he has his ‘own life’
(dis/independence). Matt’s dis/human politics does what the disability theorist Nirmala
Erevelles (2002a) seeks to do: radically disrupt humanist notions of autonomy and
subjectivity (p. 29). Matt’s relationships with others also evoke the image of the
assemblage: ‘a term that means design, layout, organisation, arrangement, and relations –
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the focus being not on content but on relations, relations of patterns’ (Puar, 2012, p. 55)
which ‘de-privileges the human body as a discrete organic thing’ (p. 57) and proffers a
‘posthumanist framing that questions the boundaries between human and non-human,
matter and discourse, and interrogates the practices through which these boundaries are
constituted, stabilized, and destabilized’ (p. 58). Following Goodley (2014, p. 166), dis/
independence is played with (or assembled) in some interesting ways here – shifting the
perspective from individual with profound communication difficulties in to a distributed
entity at the heart of a profoundly complex relationship between the human and their
world. Following Puar (2012, p. 57), categories including race, gender and sexuality – to
which we can add dis/ability – are considered as events, actions and encounters between
bodies, rather than simply entities and attributes of subjects. This sounds very much like
the dis/human project that we have in mind. Matt is both a person and an assemblage: dis
and indeed human.

3.3. Dis/ability politics, self-advocacy and repositioning the human

A view from the grassroots: argues that people with learning difficulties face discrimination
in the disability movement. People without learning difficulties use the medical model when
dealing with us. We are always asked to talk about advocacy and our impairments as though
our barriers aren’t disabling in the same way as disabled people without learning difficulties.
We want concentration on our access needs in the mainstream disability movement. (Simone
Aspis, cited in Campbell & Oliver, 1996, p. 97)
Aspis displays a desire for her politics to be recognised and respected in similar ways to
the politics of her physically and sensorily impaired brothers and sisters. Activists with
intellectual disabilities are just as capable, she states, as their physically impaired
comrades (dis/ability). That said, the politics of self-advocacy invites a deep engagement
with the meaning of the human: captured perfectly by the choice of moniker for many
groups across the globe (People First). As Gillman, Swain, and Heyman (1997) observed,
the fight for many activists with intellectual disabilities has differed from the activism of
their physically and sensorily impaired brothers and sisters, precisely because People First
seeks recognition of personhood that exists in spite of or behind the often deficit-making
label of intellectual disabilities. As Erevelles (2002b, p. 6) puts it in her analyses of
cognitive impairment and education:
 12 D. Goodley and K. Runswick-Cole

Death-invoking discourses constitute disability as marking the outermost limits of human

existence, and therefore, never engage the everyday reality of what it means to be a citizen
with cognitive/severe disability. (Erevelles, 2002b, p. 6)

Dis/ability politics captures activists to claim their humanity (we are People First) whilst
also modelling new forms of interdependent politics and advocacy (we are Assemblage
First).

3.4. Dis/family: desiring the normal, embracing the non-normative

At the end of the [self-advocacy] meeting, Annie tapped me on the shoulder to show me the
photographs on her iPad. Annie, who is in her fifties, told me she used to live with her mum
but that her mum had died in June last year. At that point, Annie met Angela and Caron,
social workers from the Shared Lives Scheme5 in the local area. Angela and Caron helped
Annie to find a new family. Now Annie lives with Jean and Keith, their teenage daughter and
their three dogs. Annie showed me some photos with three lovely dogs and her new family.
(ethnographic field notes from Katherine)
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We must not lose sight of the very normal desires disabled people with intellectual
disabilities have in relation to a sense of belonging, home and support (dis/family). Living
in a family is a quintessential normative desire too often denied to people with intellectual
disabilities confined to institutionalised care. The Shared Lives scheme is an example of
what we might call the dis/family. Annie’s family is a non-normative family in the sense
that it is not constituted as a result of biological relationships or traditional parent/child
roles; Annie is about the same age as Angela. The relationships described are between
‘service user’ and paid ‘carer’ – this emboldens the dis element of the dis/family. However,
the dis/family is also responding to Annie’s desire to live in a normal family and perhaps to
recreate the closeness of the relationship she lost when her mother died. The dis/family is
simultaneously normative and non-normative; it appeals to the notions of traditional family
and yet it troubles traditional biological kinship and parent/child relationships that underpin
the ‘normal’ family. Normal family life is a powerful contemporary public discourse that
permeates policy and popular culture, an example of which we stumbled upon in a recent
television programme. The programme is a part of a series in the UK in which each week a
team of builders, plumbers, electricians and so on with a group of local volunteers, improve
the home of ‘deserving recipient’. In this episode, the recipient was a disabled child and his
family, which led the presenter to reflect:
Michael [a carpenter on the programme] said an interesting thing to me this week: ‘We
undervalue normal’. Normal is doing the same thing sitting in front of the telly saying, ‘We
always do this. Why can’t we do something else?’ Normality is the kids fighting and running
round the house causing problems. Normality is something that a family does together all the
time. It’s something that this family couldn’t do because Josh was excluded from so much of
the house. And the way these people have worked on the house has meant they’ve given him
that back. They’ve given him a little bit of normality. It’s really important when you think
about it. Maybe you know someone who needs your help’. (Nick Knowles, TV presenter,
DIY SOS, 2013)

4. Conclusions
Any theoretical account, especially in the social sciences, will be subjected to a number
of questions about utility. The first usually goes along the lines of how relevant is this
analysis to the lives of disabled people? The second relates to social policy; how can this
 Discourse: Studies in the Cultural Politics of Education 13

analysis be used to inform policies around disability. The third is a query about activism:
does this have any connection with the politics of disability? We respond to each of these
questions in turn.
First, how relevant is this analysis to the lives of disabled people? We would argue
that our project of claiming the human while simultaneously seeking to trouble, to
reshape and revise the human emerges from our enmeshment with the day-to-day lives of
disabled people with intellectual disabilities. We have shown how the advocacy work by
and for disabled people with intellectual difficulties necessarily demands a recognition of
sameness (I have the same rights to a job, a home and a family because I am the same as
you) but, at the same time, seeks to disrupt normative notions of work, home and family
(in order to work and live might require more creative ways of being supported and
enhanced). Being in a position where one is forced to equivocate not only disrupts the
concept of the human but also disrupts the lives of disabled people with intellectual
disabilities and their allies who are left holding the fallacy of equivocation on a day-to-
day basis. A failure to recognise or, indeed, honour the work that disabled people with
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intellectual disabilities are doing to maintain a dis/human equivocation is a failure to

recognise their experience (and reworking) of humanity. Through their lives ‘we learn
that humanity is not discovered, but achieved through the taken-for-granted grounds of its
assumed presence or absence’ (Titchkosky, 2012, p. 92).
Second, how might becoming dis/human inform social policy? Public policy
discourse is always on the side of the human, conceptualised as a bounded, rational,
independent, individual self. So the current personalisation agenda, enshrined within
Valuing People (Department of Health [DoH], 2001) and the raft of policy documents that
it gave birth to, focuses on individualised plans to enable individual disabled people with
intellectual disabilities to become active and contributing members of their community.
And yet, despite the policy rhetoric, the practice we have witnessed emboldens the other
side of our dis/human binary (dis/human) so that employment is enacted as supported
employment facilitated through an assemblage of the disabled person with intellectual
disabilities, their family members, their colleagues and the job coach; independent living
is achieved through circles of support or the Shared Lives Scheme in which assemblages
or networks create what we see as dis/independence. A public policy informed by the dis/
human would recognise, honour and promote these networks.
Third, how does becoming dis/human connect to a politics of disability? In the UK,
disability politics has been built upon a conception of the human that asserts disabled
people’s normative human identity. Identity politics emboldens the human to advocate for
equality. However, disability politics and disability studies have been troubled by the dis.
First-wave feminists in disability studies sought to emphasise the dis of dis/ability by
bringing personal experience into the fray, rejecting the hard materialist analysis of first-
wave social modelists (e.g. Morris, 1991; Wendell, 1996). Academics who locate their
work in second-wave CDS have sought to embolden the dis by troubling normalcy
(Davis, 1995), naming ‘compulsory able-bodied-ness’ (McRuer, 2006) and exposing the
ableist practices that haunt disabled people’s lives (Campbell, 2009). We desire a time
when dis/human becomes dishuman: when any thought about the human has in mind
what disability does to it (see also Goodley et al., in press). It is not simply the case that
we want to jettison the ‘/’ because we find it ungainly, we want to move to a time when
thinking about the human will always involve thinking about disability.
 14 D. Goodley and K. Runswick-Cole

Notes
1. We use the term intellectual disabilities to recognise that this is a common term applied across
the globe. Other labels would include learning disabilities and developmental disability. This
term is often used in psychological and medical contexts to refer to someone with cognitive
impairments. Traditionally, horrendous nomenclature has included mental handicap, mental
retardation and educational subnormality. We acknowledge, of course, that many people so-
labelled prefer no labels whatsoever.
2. For details see: Department of Health (2013), Transforming care: A national response to
Winterbourne View hospital. Available at: https://www.gov.uk/government/publications/winter-
bourne-view-hospital-department-of-health-review-and-response
3. See this site for a really helpful overview of this philosophical position: http://www.txstate.edu/
philosophy/resources/fallacy-definitions/Equivocation.html
4. Economic and Social Research Council (ES/K004883/1).
5. Shared Lives is a little-known alternative to home care and care homes for disabled adults and
older people. It is used by around 15,000 people in the UK and is available in nearly every
area. A Shared Lives carer and someone who needs support get to know each other and if they
both feel that they will be able to form a long-term bond, they share family and community
life. See more at: http://www.sharedlivesplus.org.uk/what-is-shared-lives/shared-lives#sthash.
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PiGQBD2Q.dpuf

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