Death, Dying and Intellectual Disability Research

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EDITORIAL
Death, Dying and Intellectual Disability
Research
Stuart Todd*, Jane Bernal
†
and Rachel Forrester‐Jones
‡
*Faculty of Health, Sports and Science, University of Glamorgan, Pontypridd, Wales, UK;
†
Cornwall Partnership NHS Foundation Trust, St
Austell, Cornwall, UK;
‡
The Tizard Centre, University of Kent, Canterbury, UK
Accepted for publication 13 January 2013
In the 10 years since it was claimed that death and
dying were perhaps too emotive and certainly too
incongruous for intellectual disability researchers (Todd
2002), there has been a small but growing international
interest in this field of study. This changing attitude
towards death and dying within intellectual disability
has been marked by two key events. Firstly, a changed
view on what counts as a ‘significant death’. Secondly,
there has been an acceptance that the deaths and
periods of dying people with intellectual disability
present important personal, academic and professional
challenges.
Early work in this sensitive field tended to be
concerned with bereavement and, in particular, the
impact the death of a loved one, usually a family
member, had upon the life and well-being of people
with intellectual disability. At this time, death itself was
not so much the focus for scholarly activity. Rather, it
was a device used to cement the notion that people with
intellectual disability had emotional selves, capable of
reflection and feeling. Within this bereavement
literature, seldom was it entertained that the death of
people with intellectual disability might have potent
meaning for someone who in turn loved them. That
death comes to people with intellectual disability as
well as to the rest of us seemed to be simply
overlooked, as was any recognition that a relationship
with a person with intellectual disability could be
positive and grieved for. The idea that people with
intellectual disability might leave a social legacy was
not entertained. This absence of thought that people
with intellectual disability might just leave a gap in
society when they die, no doubt, related to the general
devaluing of people with intellectual disability,
including their relationships with others. Now, people
with intellectual disability form a part of the huddle of
humanity, which Berger (1963) described as one bound
together in the face of death. Perhaps the final step in
the move towards full inclusion is the admission of the
relevance of death. The study of death and intellectual
disability, as for other populations, encourages and
reiterates a sense of belonging and community, a sense
that death itself threatens. A turn in bereavement
research has led from building evidence that people
with intellectual disability are affected by death, to
considering how to support people through their
bereavement experiences, and examples of this are
provided in this special issue. The impact the death of a
person with intellectual disability has on others remains
an important but less addressed concern for research.
Perhaps another reason for the lack of interest in
death and dying within intellectual disability research
was that for almost a century, the lives and deaths of
people with intellectual disability were sequestered,
hidden behind the walls of the institution. Indeed,
institutionalization could be characterized as a form of
death, ‘social death’ (Sudnow 1967). Blatt & Kaplan
(1966), for example, described institutionalized patients
as being neither dead nor alive but in purgatory. Living
people with intellectual disability were treated as if they
were as good as dead. Hidden and removed from
society, their social death preceded their biological one,
sometimes by many decades. It is interesting to note
that the wider and more general interest in the social
dimensions of death occurred at the same time as the
de-institutionalization of people with intellectual
disability. This was a period of change to the template
of social control that was applied to all excluded
groups, for example people with intellectual disability,
the dead and the dying (Baudrillard 1976). The deaths
of people with intellectual disability became more
public and hence less easily overlooked. The rise of
©2013 Blackwell Publishing Ltd 10.1111/jar.12027
Journal of Applied Research in Intellectual Disabilities 2013, 26, 183–185
Published for the British Institute of Learning Disabilities

normalization and acceptance of human rights for
people with intellectual disability can be described as
ways of tackling social death and as an attempt to
narrow the temporal gap between social and physical
death.
The second change in research in the past decade has
been concerned with the temporal dimensions of living
and dying. The untimeliness of death has been a subject
for research. It has been shown that many of the deaths
of people with intellectual disability are premature and
that this in itself is the outcome of economic, social and
health inequalities (Glover & Ayub 2010). People with
intellectual disability still tend to die young and from
causes that are preventable. This work and the
responses that are required to prevent premature death
are represented in this issue.
However, even when premature death is postponed,
people with intellectual disability, like all human beings,
will die eventually. As the institutionalized indifference
to the health of people with intellectual disability
decreases, many will live longer; they will receive more
medical attention and investigation and, towards the
end of their lives, will be more likely to be diagnosed
with life-limiting or terminal illnesses. With increasing
frequency, there will be a longer period of time when it
is recognized that the person is dying. Here an interest
in the last years, months and days of people with
intellectual disability becomes essential. Residential
services will need to understand death and dying.
Another strand of research, and one well represented in
this volume, considers the ways residential services
respond to the deaths of people with intellectual
disability. The deaths of people with intellectual
disability have considerable impact and are considerably
challenging for staff in intellectual disability services.
These papers themselves raise other important questions
for future research. We know where people with
intellectual disability are and have come to some
agreement about where those lives should be lived.
However, we are less knowledgeable about where
people with intellectual disability should die and how
well they are supported as they die. The papers here
suggest that there is a shared aspiration that people
with intellectual disability should have a good quality
of dying and death in those same places that supported
their living. The next step is to determine the extent to
which such aspiration translates into a reality.
It might be suggested that the little attention paid to
death within intellectual disability research was a
simple expression of a death taboo. Even if this is
accepted, and it has been argued that this taboo has
been breached more than it has been observed, it does
lead us to consider how we should talk about death
with people with intellectual disability. If there is one
enduring lesson from the research on bereavement, it is
that talking about death is difficult and requires special
handling and conventions. Death tended to have been
avoided entirely in conversations with people with
intellectual disability (Oswin 1991). People with
intellectual disability were not told that a person they
had loved had died, but had to work out themselves
why that person was now absent from their lives. This
secrecy may well have ceased. However, as some
papers in this issue suggest death might not be a taboo,
but dying continues to be hidden from people with
intellectual disability. We might be able to tell a person
with intellectual disability that someone has died, but
how are people prepared for that death, if at all? How
much harder might it be to have this conversation when
the task is to inform a person with intellectual disability
that they themselves are dying? Disclosure and the
awareness of dying are addressed in this special issue.
The papers in this special issue represent the current
level of academic questioning about the relationship
between death, dying and intellectual disability. They
take us from the encounters people with intellectual
disability have with death to their last breath. The
notion of intellectual disability services as being a cradle
to the grave phenomenon is just about fully embraced.
However, it seems that the research interest often
expires at the same moment and yet there remain
important death-related questions that would help us
understand the relationship between intellectual
disability and death and that would give some detailed
insight into the meaning of intellectual disability itself.
Decisions about how the remains of the dead are
managed, and the way the dead are represented in life
will say much about our society and its views of people
with intellectual disability. A more recent turn in death
research in general (Hockey & Draper 2005; Walter
2008) suggests that such questions will be addressed in
the near future for people with intellectual disability.
This new research interest questions the dichotomy of
life and death and recognizes that the dead have some
social presence. The person may be dead but
relationships with that person are modified rather than
erased. Individuals whilst living, through the creation of
funeral and memorial plans, may seek to have some
influence over how these relationships are modified and
what components of their identity should be
remembered. Such issues should draw attention to the
death preferences of people with intellectual disability
©2013 Blackwell Publishing Ltd, 26, 183–185
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and also the way people with intellectual disability are
remembered. This is addressed tentatively in some of
the papers and more directly in one. The ways people
with intellectual disability are remembered in death and
whether intellectual disability has some continuing,
meaningful influence over the identity of people after
death are research questions for the future in this
growing field of study.
The introduction of death to the intellectual disability
research agenda need not imply the creation of a
separate academic interest. It has the potential to be
incorporated into many existing and established
academic interests. For example, death might extent the
focus for family research in terms of how parents cope
with the predicted, expected or actual death of their
child. It might also extend the focus for research on the
quality of support provided within intellectual disability
services. The history of institutions for people with
intellectual disability is one that perhaps overlooked
that these were places of dying as well as living. As
well as the rituals and disciplines of admission that
affirmed the identity of their populations, institutions
had to manage and dispose of their dead. Studies of the
death rituals and practices of institutions and how these
may or may not have had some identity-fixing potential
would add to our understanding of those settings and
also provide a historical backdrop to current practices
and values. The relationship between death and
intellectual disability is an exciting area for research and
one that has the potential to further illuminate our
shared concern to understand what it means and has
meant to live with an intellectual disability.
References
Baudrillard J. (1976) Symbolic Exchange and Death. Trans.
Hamilton Grant. Sage Publication, London.
Berger P. (1963) Invitation to Sociology: A Humanistic Perspective.
Penguin, Harmondsworth.
Blatt B. & Kaplan F. (1966) Christmas in Purgatory: A
Photographic Essay in Mental Retardation. Allyn and Bacon,
Newton.
Glover G. & Ayub M. (2010) How People with Learning
Disabilities Die. Improving Health and Lives, Learning
Disabilities Observatory, Durham.
Hockey J. & Draper J. (2005) Beyond the womb and the tomb:
identity, (dis)embodiment and the life course. Body and
Society 11,41–57.
Oswin M. (1991) Am I Allowed to Cry? A Study of Bereavement
Amongst People Who Have Learning Difficulties. Human
Horizons, London.
Sudnow D. (1967) Passing On: The Social Organization of Dying.
Prentice Hall, Englewood Cliffs, NJ.
Todd S. (2002) Death does not become us: death and
intellectual disability research. Journal of Gerontological Social
Work 38, 225–240.
Walter T. (2008) The Presence of the Dead in Society. University of
Bath, Bath.
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