ALTER, European Journal of Disability Research 5 (2011) 317327

et galement disponible sur www.em-consulte.com

Book reviews

Special issue: The body in disability studies, J. Pols, A. MCharek (Ed.). Medische Antropologie,
22 (2) (2010).

Disability studies have just recently witnessed a new impetus in the Netherlands. In
November 2009, research in the disability eld until then widely scattered was restructured around
a major action plan supported by public authorities. A year later, a number of researchers working in
the eld wished to celebrate the event in their own way by launching a debate on the boundaries den-
ing the scope of intervention of disability studies. Which research subjects, involving which actors,
which disciplines, to achieve what objectives? These were some of the issues researchers intended to
bring up for discussion, but not without rst raising a few questions: why, they asked themselves, is
the body marginalised to such an extent in disability research? Is there not, instead, real reason for
bringing it back into disability studies and rehabilitating it as a subject of research? These two ques-
tions provide the underlying theme in this special issue of the journal Medische Antropologie, which,
we feel, will help to renew approaches that have become established classics in the eld of disability.
At rst, this questioning on the part of the researchers may be disconcerting. One of the main
contributions of the disability studies is indeed to break with the individualistic biomedical disability
model and replace it with a social model according to which disability, far from being a persons
attribute, is instead the result of an unadapted environment. Admittedly, unlike the medical model,
the body is not the focus in the social model. But this is with good reason, one might say. By focusing on
the environment, it is society, and not the individual, who is tasked with reducing disability situations.
There is no need in such circumstances to concern oneself with the body. And if, despite everything,
there is a need to care for, rehabilitate and adapt the body, those best placed to do so are disability
experts and not social organisation specialists.
The authors contributing to this special issue take the exact opposite stance to this reasoning.
Not to revert to the biomedical model, but, conversely, to develop a cross-disciplinary, i.e. social and
medical, approach to the body. For these authors, the biological body is not a given of nature that
imposes itself on culture, but an entity that never ceases to build and rebuild itself through social
interactions. Far from relegating the biological to the medical sphere, the contributors to the journal
are instead interested in their inextricable entanglement.
The example of the Down syndrome dolls given by Amade MCharek clearly illustrates this cross-
disciplinary and plastic approach to the body. The production of Down syndrome dolls has received
strong support from professionals and parents alike. Such toys are deemed to have an educative value,
both for children with Down syndrome themselves (who can thus play with toys that look like them),
and for able-bodied children (who can grow accustomed to difference). It should, therefore, be deter-
mined which Down syndrome child model should be adopted to produce such dolls. There is no
such model, since the commonly identied features are not always present and can appear in many
different combinations. Manufacturers, therefore, produce a limited number of models based on infor-
mation supplied to them by the medical professionals. Among them, two models meet with different

1875-0672/$ see front matter

reactions depending on the environment. Professionals opt for Down syndrome dolls with a pro-
truding tongue (which can be seen in some, but not all, Down syndrome children), while parents opt
for dolls with a closed mouth (likewise seen in some, but not all, Down syndrome children). This latter
example is especially relevant since it plainly demonstrates that the Down syndrome body cannot
solely be identied from a medical point of view (where characteristics are based on probabilities),
any more than from a social point of view. Not only does this situate the body at the biomedical and
social crossroads, but its denition is, by no means, stabilised as a result.
This biosocial plasticity of the human body grows more acute when we focus our attention
on the concrete lives of individuals. As is well known, as disabled people insistently repeat:
people with disabilities cannot be dened by their disability. The whole point of this issue of
Medische Antropologie is to show what exactly this phrase means. Not just that the disabled peo-
ple are far more than their disability, which everyone agrees upon, but also that they put the
very disability category itself to the trial through their lived experience. The articles of the jour-
nal abound with concrete illustrations, which invalidate disability as a stable and objectively
(biomedically) circumscribed category. The body-based or embodied approach proposed by Karen
Mogendorff contributes to disaggregating, complexifying and rendering the disability category
mobile.
Based on two examples, Sue Thomson, Tom Shakespeare and Michael Wright show that the exis-
tence of an impairment, in no way, determines the identity of disabled persons (which is presupposed
by the biomedical approach). On the contrary, such an identity is dynamic and can vary, for example,
according to the various life stages. Moreover, individuals adopt strategies according to their impair-
ment. Thus, short-statured people do not consider themselves disabled. In the United Kingdom, they
do not form an association, or become involved in movements to defend their rights. Yet, 60 % of
them benet from disability living allowance and 56 % have a parking card. Although disabled from
an administrative view, they are not disabled from an identity standpoint. Except that at certain life
stages such as during their teenage years they can feel the full weight of disability. The second
example is different, but leads to the same conclusions. Unlike the condition of short stature, skele-
tal dysplasia is a biologically dened impairment. The weight of the medical gaze would, therefore,
appear to be important here in the attribution of identity. Yet the authors show that there is a great
variety of attitudes towards this biologically objectivated impairment. While some individuals seize
the opportunity to consider themselves disabled, others do not choose this path. They resist the idea
that they are disabled, which does not prevent them, at a later life stage, from wondering whether, in
the end, they were right to do so.
This instability in identity is perhaps even more important in everyday life, irrespective of life
stage. With the aid of the Deleuzian moving body concept, Karen Mogendorff describes in her article
the uid identity of the body. Because embodied agents are enmeshed with the human and non-
human objects surrounding them, body images are formed, deformed and reformed in a permanent
interplay. In a constant movement, the body never stabilises, which, in the case in hand, is not without
incidence on identity reversals. It is through encounters and situations that the disability is put to the
trial. Karen Mogendorff cites her own example. Although on Dutch buses, the seats behind the driver
are all reserved for people with disabilities, she prefers to sit on seats provided for the able-bodied,
at the back of the bus. Why? Simply to avoid an identity confrontation with able-bodied people.
Thus seated, her impairment can no longer be seen, which in fact makes her sometimes the butt of
unkind remarks from the able-bodied who feel that youngsters should volunteer to give their seats
up for older people. It is interesting to note, at this point, that it is not the disabled person who is
stigmatised. Buses have reserved seats, and more importantly, it is precisely because the able-bodied
take note of the differently-abled that Karen is wrongly rebuked. It is these concrete, genuine, and,
above all, very common experiences, which are masked by the social disability model and which the
embodied approach tries to address.
The identity uncertainty is just as pronounced when the impairment is not visible. Which strategy
is adopted by those who, for example, have a chronic disease whose symptoms are not visible, at least
not all of them? Silke Hoppe, using the example of multiple sclerosis, shows that nothing is easy. The
constant interplay renders behaviour undecidable. Showing ones impairment is sometimes a positive
strategy when it opens access to benets. But it is sometimes (and at the same time) negative when
 Book reviews 319

it results in embarrassment and rejection. The act of hiding ones fatigue and certain difculties gives
unimpeded access to the world of the able-bodied. Except that the slightest lapse may be considered
inappropriate or insulting, through lack of being attributable to the disease.
Thus, if the impairment clearly exists, it is not necessarily translated in terms of disability, still less
in terms of identity. Individual positions depend upon contexts, interactions and personal strategies, in
other words upon how each individual is going to cope with his/her impairment. It may be concealed,
displayed, or even exaggerated, such as when, for example, lameness is emphasised to avoid the ordeal
of justication on leaving a reserved parking space. And above all, these ways of coping with the
impairment can vary according to time and social circles. Thus, the desire to reveal ones impairment
or disease to relatives can exist side-by-side with a concealing strategy used in the work environment.
Moreover, the truth may only be partly and differently displayed in either circle. For Petra Jorissen,
the interplay with clothes enables her to escape her disabled identity. This latter prompts her to
seek to rehabilitate the act of shopping, which for her is far more than just a pastime for women who
have nothing upstairs.
By focusing on the moving body, caught in its attachments, this special issue has the merit of ridding
us of the classic dichotomies between social and individual, human and non-human, body and mind,
voluntary action and involuntary action, impairment and disability. It forces us to examine disability in
a transverse way. One may, therefore, think that it is in line with the thinking that inspired the revision
of the International classication of disability, and that has given rise, not to a linear, but a systemic
(biopsychosocial) classication of disability. However, we feel that this issue of Medische Antropologie
leads elsewhere by pinpointing the oating dimension of disability. The authors do not attribute this
oating aspect of the category to conceptual inaccuracies, but instead link it to the variety of contexts,
interaction situations and nally to individual strategies. But while the embodied approach allows
grasping the lived experience more closely, it also raises de novo the issue of public action in favour
of people with disabilities. It is this question that we would like to discuss in conclusion.
Indeed, one of the assets of the social model of disability is that it has helped to promote policies
based on accessibility and non-discrimination. The embodied approach shows the limitations of this
categorical model. By merely focusing on the fair distribution of social places, it tends to neglect the
concrete experience that is always singular, uctuating, non-categorisable. How then, under these
circumstances, is it possible for public policies to address this new approach to disability that is built
on deconstructing the category?
In a conclusive article, Jeannette Pols, joint editor with Armade MCharek of this special issue,
identies a few policy lessons that may be drawn from the embodied approach. Drawing upon a survey
of individuals with a chronic obstructive lung disease (COPD), she shows that lay people perform an
act of translation, thus enabling them to transition from a situation of medically dened, ready-to-use
know-how to one of know-now. Therefore, the ill people develop a practical knowledge, based
on a series of minor arrangements that operationalise scientic know-how. For Jeannette Pols, that
practical knowledge could be turned to good account, as already experimented in the eld of mental
health. Spurred on by their experience, disabled people could be mobilised in the eld of health and
disability policies to come to the aid of their peers, who might thus, in turn, be supported in the
development of their own know-now.
The political signicance of such a proposal is relatively strong. This leads to value lay knowledge
and to rely on the ill and disabled people themselves to dene the conditions for living together. It, thus,
meets the expectations of those who intend that nothing is undertaken without the participation of
the concerned parties. Nothing about us, without us, as disabled people say, Alice Schippers reminds
us. It is part and parcel, therefore, of a policy of empowerment.
Nevertheless, it is questionable whether, through this latter proposal, the embodied approach
might not bring about certain difculties from the point of view of public policies. If, as the authors in
the special issue show, these physical experiences and strategies are always singular, is it possible to
refer to the category of peers? Of a we and representatives of that we? Short-statured people, as
we have seen, do not all consider themselves to be disabled, nor do they all adhere to this category.
Under these circumstances, can a we truly emerge without betraying those who do not see them-
selves as part of it, at least not fully? By focusing on the singularity of physical experiences, do we
not run the risk of entering a political impasse, while ruining to a certain extent the social model of
320 Book reviews

disability that relies on the categorisation of situations? Although the authors in the special issue, in
no way, intend to liquidate the social model of disability. As Stuart Blume and Anja Hiddinga suggest,
the social model should never be abandoned given its input in the ght against discrimination. Is there
not a certain contradiction here?
There probably is, but we feel that it is a politically and ethically productive one. Tackling the body
head-on, taking an interest in a persons concrete experience, but without renouncing the social model,
is perhaps a means of fostering a salutary concern: a reminder that, however positive they are, policies
attached to the social model of disability can only partly achieve their goal and should never be let
off. Whatever the degree of accessibility, the disabled persons continue to live with pains, limitations,
fatigue and an obsessive fear of decline, as underlined by Jacqueline Kool. Despite the existence of
reserved seats on buses, these will continue to be an ordeal that some will seek to avoid. . . Holding
together the collective ambition and the attention paid to the individual, thus giving esh to the social
model, such is, we feel, the body back in project at stake.

Pierre Vidal-Naquet
CERPE, 22, rue Ornano, 69001 Lyon, France

E-mail address: [email protected]

Available online 1 October 2011

Special educational needs. A new look, M. Warnock, B. Norwich, L. Terzi (Eds.). Continuum Inter-
national Publishing Group, London-New York (2010)

Publi dans la srie Key Debates in Educational Policy , voici un livre bienvenu. En effet, il fait
le point sur les dbats suscits par cette expression de besoin ducatif spcial issue de langlais et
de lAngleterre mme, et qui a pntr lentement en France sous la formule besoin ducatif par-
ticulier , en gommant la rfrence au spcial , comme sil sagissait de tourner le dos au pass de
nos institutions et de nos pratiques. Cette dernire expression ne fait pourtant pas partie de larsenal
administratif ofciel francais puisque la loi (celle du 11 fvrier 2005) dsigne certains enfants, des
jeunes ou des adultes comme handicaps . Mais, selon des canaux dinuence que la recherche elle-
mme devrait expliciter, elle est de plus en plus utilise quand il est question de la formation des
personnes concernes et surtout de la scolarisation. Se manifeste donc une extension de vocabulaire,
au-del du handicap, mais qui lenglobe aussi et qui est en troite connexion avec les perspectives
actuelles de linclusion scolaire, dont la formulation provient encore de la langue anglaise. Autant de
raisons de prter attention cet ouvrage trois voix, o les auteurs se rpondent et mme nhsitent
pas se critiquer. Il est videmment centr sur la situation britannique mais il soulve des ques-
tions fondamentales, en termes de notions utilises, de modles de comprhension et de pratiques
institutionnelles.
Lorigine de louvrage est un pamphlet qui a t rdig par Mary Warnock, en 2005, sous lgide
de la Socit de philosophie de lducation de Grande Bretagne. Ce texte, reproduit ici, se prsente
comme un nouveau regard (a new look) sur lexpression besoin ducatif spcial , comprenant un
retour sur son histoire, un examen critique de ses applications et enn une contestation virulente de
lidal de linclusion scolaire. Il est suivi dune rponse actuelle de Brahm Norwich laquelle Mary
Warnock rpond son tour. Enn, Lorella Terzi, responsable de ces dbats, fait le point et suggre des
orientations nouvelles, inspires de la thorie des capabilits de Amartya Sen.
Pour comprendre lancrage de ces dbats, il est indispensable de bien reprer lorigine de
lexpression. Elle provient dun rapport de 1978 auquel le nom de Mary Warnock est directement
associ. Celle-ci avait prsid un comit du dpartement de lducation et de la science, consacr
lducation des enfants et des jeunes handicaps (notons que le terme handicapped tait encore
utilis, ce qui nest plus le cas aujourdhui en Angleterre). Le comit proposait plusieurs orientations
pour renforcer la dimension proprement ducative des actions destines aux enfants, aprs labolition