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