Professionals who care for people with intellectual disabilities face many challenges in their work. Ageing in their patients adds further complexity as it exacerbates existing health issues and disabilities. The professionals aim to balance promoting autonomy while also providing care and protection. They approach each unique situation with uncertainty and adapt their approach through discussion and trial. Unlike previous claims, the professionals are not paralyzed by ageing but rather view it as just one of many factors to consider through their established practices of "uncertain decision making". While ageing brings gradual changes, the professionals accept evolving their practices as long as adequate support and resources are provided.

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Master thesis
Doubt clinic and uncertain decisions: how ageing is integrated in the practices of
professionals accompanying persons with intellectual disabilities.
University of Lyon 2, Faculty of anthropology, political sciences and sociology
Philippe Chaize, 8 July 2015
ABSTRACT
Over the past ten years, the ageing of people with disabilities has become a growing issue for both
the medical and the welfare sectors. Thanks to the improvement of health conditions – and more
generally of people’s close environment – the increase in the general population’s life expectancy has
also benefited people with disabilities. Though fragmented and still lacking a comprehensive analysis,
an abundant literature has addressed the issue of ageing persons with disabilities. But this literature
is mainly focused on the policies and institutional aspects of this major trend. Few reports actually
address the impact on the practices of the professionals who give support and accompany persons
with disabilities. Among these reports, Gabbaï’s study in the field of intellectual disabilities looked
interesting to us. The author suggests that the various deteriorations coming up as symptoms of
ageing, such as mobility reduction and an increasing occurrence of diseases, for instance, will create
major difficulties for professionals whose background training contrariwise prepared them to aim at
the development of people’s capacities. He believes professionals are becoming powerless and
distressed as ageing symptoms emerge. To us, this radical statement seemed – to say the least –
worth a field check through research. This starting assumption was put forward to initiate our field
survey, as proposed by the “comprehensive interview” (Kaufmann, 2011) methodology. Our final
research hypothesis has then been formulated during our field survey. Adapei du Rhône, as a non-
profit organization taking care of people with intellectual disabilities, is said to face the issue of
ageing and two of its institutions have shown concern for this subject. They warmly received our field
research.
Still, there was confusion at first for the second institution: even though both institutions said they
were concerned by the ageing of their residents, the average age happened to be 60 in one of them
and only 42 in the other. Moreover, the more we investigated the ageing issue, the more it became
elusive. Indeed, professionals indicated they couldn’t make the distinction between the ageing
characteristics and those of disability, disease, somatic or psychic disorders… We therefore
orientated our study on analysing their daily practices to better understand how ageing is taken into
account, among other characteristics. Three major features were thus identified.
Firstly, professionals who accompany persons with intellectual disabilities face five major classes of
troubles (see Chapter 1): communication and understanding disorders restrain the capacity to get a
clear understanding of the person’s situation. Moreover, intellectual impairment creates confusion
on the status of the person who is either treated as an adult (that they legally are) or as a child.
Residents of both institutions suffer from somatic and psychic disorders, both being either
independent from their disability or directly – or indirectly – related to it. When ageing symptoms
occur, they will blend with pre-existing troubles.
Secondly, we looked at what appeared to be a dilemma for the accompanying practices (see Chapter
2). They generally go along two main objectives: the development of the autonomy (Ehrenberg,

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2000), related to the concept of empowerment and a search for the person’s well-being, related to
the concept of care. These objectives imply two opposite categories of actions. Improving the
autonomy of persons requires actions such as stimulation, encouragement and incitation although
well-being requires such actions as protection, attention and care. Both objectives can always be
reconciled but the actions they require are in opposition, which puts professionals in a situation
where they have to choose between stimulation and protection. But basically they don’t pick one out
of these two options, rather they alternatively go for one or the other according to the situation
(Ravon, 2014).
Thirdly (see Chapter 3), the development of autonomy, which is given a pivotal role in the
professional practices, is harmed by the various coercion mechanisms (Foucault, 1975) a person with
intellectual disabilities has to face. The institutions’ residents in our study are under the legal
measure of protection of incapacitated adults which restrain their self-capacity for decision (Eyraud,
2013). In addition, the institution also sets coercive systems (Goffman, 1968) such as the use of
sanction towards residents. This “constrained autonomy” paradox is another complex issue
professionals have to deal with.
Troubles, dilemma, paradox… these three main features have induced specific mechanisms of action
in the daily practices of professionals (see Chapter 4). Instead of paralyzing their acting capacities,
they are brought into controversial debates and used by practitioners in their deliberations. Their
opinions are neither final nor reliable; they are characterised by uncertainty and precaution
(Aristotle, 1975). Discussions are therefore opened to many options and leave room for trials. Their
collaborative work allows testing as a solution, the possibility of making mistakes and eventually
reconsidering the case. Thus, they design a brilliant and reversible step-by-step system of “uncertain
decision” (Callon, Lascoumes, Barthe, 2001) enabling them to permanently adapt their modalities of
action. This is how the various troubles persons with intellectual disabilities may have are taken into
consideration in professional practices. Unlike Gabbaï, we believe professionals are not specifically
distressed by the emergence of ageing symptoms; they are confused but no more than they usually
are in their daily routine.
Ageing symptoms being mixed with others, ageing is naturally taken over by professionals without
noticing it… at least on a short-term basis (see Chapter 5). On the longer run, they experience the
effects of ageing on their activity: slower rhythms, more important nursing needs, taking their
practices towards more care rather than empowerment. For most of them, this evolution of their
practices is well-accepted, as far as the institution provides adequate resources (training courses,
human resources and technical equipment). Besides, the issue of ageing is certainly more of a
concern for the Adapei du Rhône organization than for its professionals. Allocating resources
certainly is an issue, but not quite as important as an overall rethinking of their missions.