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E D I T O R I A L
Dorothy Atkinson and Jan Walmsley
The first issue of a new year, and not just any year: 2003 is the
European Year of Disabled People. And, despite the progress
made in the implementation of Valuing People, there is still
plenty to do if its commendably high aspirations of choice,
independence, rights and inclusion are to be fulfilled. To
mark the Year of Disabled People, we plan later in this
volume to experiment with accessible versions of the papers,
so that they can be accessed more easily by people with
learning disabilities.
To underline shifts in thinking towards the Valuing People
ideals, this issue highlights some relatively new themes,
particularly around gender, ethnicity and emotions. It would
have been highly unlikely even 5 years ago to have just one of
these themes represented in one BJLD issue. In this issue,
however, they predominate.
We open the issue, very appropriately given the White
Paper’s principles, with a paper by John Harris on ‘choice’.
Although choice sounds straightforward as a principle, and
it has been a slogan for many years, John argues that there is
confusion over its meaning and over the best ways to offer
and enhance choice. This is demonstrated through a review
of the literature. The paper ends with some eminently prac-
tical ideas about how choice can be made more meaningful in
practice settings.
One of the planks of John Harris’s paper is that to make
choices you need to know about what you are choosing
between. The importance of basic knowledge for people with
learning difficulties is highlighted in the next paper, by
Michelle McCarthy and Lorraine Millard. This focuses on
a subject that has only just begun to be discussed: the
menopause and the understandings that women with learn-
ing disabilities have of it. Using a methodology similar to that
used in her previous research into women’s sexual lives –
semi-structured interviews with women with learning dis-
abilities – she discovered how little the women actually
knew. The findings have alarming implications, given that
women may experience uncomfortable menopausal symp-
toms without having the words or the confidence to discuss
them. There is much to be done if women (and men) with
learning disabilities are to have enough knowledge of basic
health issues to be able to make informed choices – or even to
seek appropriate help.
The next paper is concerned with another gender-related
issue: parenting. This relatively small-scale study, under-
taken by Jean O’Hara and Hemmie Martin in East London,
adds to our knowledge of the topic by undertaking a cross-
cultural perspective, comparing white English and Bangla-
deshi populations. While the data shows that far more
Bangladeshi than English parents retained their children,
the authors suggest that the practice of the Bangladeshi
grandmother taking on the main parenting role may be quite
distressing for the mother. Outcomes for neither group
appear to be very positive, with continuing evidence of
assumptions being made that people with learning disabil-
ities cannot make good enough parents.
The next four papers tackle matters around emotions.
While challenging behaviour has received much attention
in the literature and in services, people’s emotional needs
have been pretty comprehensively neglected. Andrew
Arthur’s paper gives an overview of the relevant literature,
and indicates that quite high numbers of people with learn-
ing disabilities have emotional disturbances that could, if the
will and the services were there, be usefully addressed
by using psychological techniques. This argument is well
illustrated by a detailed description of one individual who
was offered therapy, and how she made use of it, in the next
paper, by Heidi Mason, Alex Johnson and Paul Witherst (‘I
might not know what you know but it doesn’t mean you can
be awful to me’). The next paper is also a case study of
therapy with one person – another young woman – the death
of whose father triggered some very complex feelings and
odd behaviours. This is the work of S.J. Summers and P.
Witts, and is a good illustration of the need to take bereave-
ment seriously with people with learning disabilities. Oye-
peju Raji, Sheila Hollins and Ange Drinnan’s study of the
limited extent to which people with learning disabilities are
involved in funeral rites, across a number of different faiths,
underlines the message that people are too often excluded
from major life events, and thus are denied the opportunity
to explore and make sense of their experiences. The authors
took the practical step of preparing a leaflet for use by funeral
directors. However, deeper cultural change will be needed,
one suspects, if the situation is to change radically.
Dorothy M. Bell and Colin Espie’s single case study,
‘Overcoming mutism’, is not described by the authors as
an issue related to emotional development. And they took a
different tack in addressing the voluntary silence of Pat, a
36-year-old woman: non-aversive behavioural methods. The
# 2003 BILD Publications, British Journal of Learning Disabilities, 31, 1–2 1
authors describe how intensive work over a relatively short
period brought considerable benefits. It is interesting to
speculate what Pat might have been offered by practitioners
working in the psychodynamic tradition espoused by
Mason, Johnson and Witherst and by Summers and Witts.
Perhaps there needs to be some dialogue between people
working in these different ways. The Editors would be
pleased to receive any papers considering this issue.
The final paper, by Marisa Smyth and Roy McConkey,
makes a contribution to one of the major Valuing People
priorities, namely the improvement of the transition between
school and adult life. They show that if rights and choice are
to be respected, a great deal needs to be done to develop new
forms of services and to ensure that the voices of young
people themselves are heard, given the differences in aspira-
tion shown between parents and young people.
2 Editorial
# 2003 BILD Publications, British Journal of Learning Disabilities, 31, 1–2