E D I T O R I A L

Dorothy Atkinson and Jan Walmsley

Welcome to the third issue of the year, another longer issue to

continue clearing our healthy backlog of papers. I write this

fresh from the first IASSID Europe Conference in Dublin

(June 2002), which was a most interesting occasion with the

usual schism between the more traditional academic papers

and the small but vocal group of self-advocates and their

supporters pressing for a more widely accessible format.

There were some splendid papers in the mainstream events,

as there were in the ‘user participation’ sessions. I admit to

some sympathy with the self-advocates though, as it can be a

little relentless listening to four of five papers in quick

succession, with little time for questions and discussion.

More attention to the needs of the slowly growing number

of people with learning difficulties attending these events

might result in an enhanced experience for all, and, at an

international event, there is also a case for native English

speakers to consider the needs of those in their audience not

in the same linguistically privileged position.

It was good to see prominent stands at the conference from

both BILD and Blackwell, BJLD’s publishers, and even better

to note how quickly sample issues of BJLD disappeared!

On the theme of self-advocacy, our conversation piece this

time is based on interviews with three leading self-advocates.

It is remarkable that self-advocacy in the UK is now 20 years

old, and it is very helpful to have the memories of Gary

Bourlet, the founding ‘father’ of UK self-advocacy – and, as it

happens, the first self-proclaimed self-advocate I met. Gary’s

been a pillar of the UK self-advocacy movement since its

inception, under the auspices of Mencap, back in the early

1980s. In the Conversation Piece, he is joined by two more

recent joiners, Andrew Bright and Joan Scott, currently co-

chair of the National Forum. Gary and Andrew in particular

regret the failure of the movement to develop a national

organization while celebrating the immense achievements of

People First groups. It is important for the future of the

movement that some way is found to create a nationally

united voice for people with learning difficulties. In its

absence, it can be quite hard for the government, even when

well intentioned, to get involvement right.

Most of our refereed papers this time, cluster into two major

themes. The first of these is communication. Three papers, all

based on small scale studies, comment usefully on particular

aspects of communication. David Preece and John Green-

wood set themselves the task of considering and trying out

techniques for accessing the views of children with autistic

spectrum disorders about their experience of short-term care.

They found considerable challenges, linked closely to the

condition itself, in accessing views, but rightly end with an

assertion of the importance of seeking means to overcome

these. Lois Cameron and Joan Murphy used ‘talking mats’ as

a means of allowing young people with learning disabilities,

some of who had limited ability to speak, to express their

views on what they want of adult life. In view of current

interest on the use of symbols as opposed to language, this is

a particularly topical paper. If, like me, you are bemused by

the idea of ‘talking mats’ then read the paper! You will be

enlightened. The third in the cluster on communication is

on the subject of bereavement, mental health and challenging

behaviour. Although it has taken some time since the late

Maureen Oswin first raised the issue of people with learning

disabilities being allowed to grieve for lost relatives (Am I

allowed to cry? Published 1991), there is a resurgence of interest

in this area. Rosemary MacHale and Sean Carey used a classic

small scale study with controls to explore whether people

with learning difficulties who had recently lost a close relative

were more likely to exhibit challenging behaviour. Not sur-

prisingly, they found that in significant areas, people who had

recently lost close relatives were more likely to experience

psychiatric disturbance than the controls.

The second cluster in this issue is around eating or feeding

as it is sometimes disconcertingly referred to in the literature.

Both papers examine the involvement of families in encoura-

ging children to eat. In a study based on a single case study,

J.F. Brown, Kate Spencer and Stella Swift describe how

professionals worked with the parents of a child who was

refusing to eat, with positive results. Lindsey Rouse and

colleagues consider the impact of the ‘gastronomy button’,

used to ensure that children who have feeding problems get

adequate nutrition, on families. Having a child who resists

eating must be quite distressing. The authors encourage

professional intervention at an early stage to assist parents

to work with the techniques recommended by experts, and to

help them work through their feelings.

Finally, in this issue, is a brief paper reporting the results of

a study of staff use of their training in physical intervention

(by Neil Kaye and David Allen). It’s a useful study in that it

offers evidence for revising the content in the light of the

challenges staff commonly face.

# 2002 BILD Publications, British Journal of Learning Disabilities, 30, 93 93