MENTAL HANDICAP VOL. 11 JUNE 1983

What is desirable is an attempt at a re- education of the public’s attitude to mental illness and handicap, bringing about a change in people’s behaviour towards their less fortunate fellow humans; but possibly more realistically, a widening, however small, in the layman’s concept of normality, to embrace as many “abnormal” groups as possible.

After all, each one of us is “at a disad- vantage” in some situations - the most eminent nuclear scientist might feel at a disadvantage at a conference for mid- wives, a lady dressed in champagne mink and Chanel would appear, and would probably feel, ill at ease in a situation with youngsters clad in denim, where

pressed jeans and polished shoes class as sartorial suicide.

Every individual has experienced such “out-group” situations, perhaps on a less extreme but nonetheless uncomfortable level. However, good self-concept and an ability to balance the effects of an indivi- dual situation enable most of us to main- tain a realistic estimation of ourselves and protect us from ego disintegration. Imagine, though, the possibility of such negative feedback in all situations, at all times during every day. Horrifying pros- pect it may be, but one which many people face at some time or other, due either to physical or mental difficulties.

After all, when the veneer is stripped

off, we are all basically “ordinaries”, with basic needs of food, drink, warmth, sex; and when the veneer is there we are all “special”, unique individuals. Where the imbalance arises is when a group of people is classed as “special” without the allowance of the “ordinary” components.

We all like to feel that we are the same as everybody else: we like to have a drink with friends, go to the football, get married and have children, hold down a job, and moan about the boss.

Are you Special enough to let eve ybody be Ordinary?

Does the community care?

Roger Hutchinson

This article seeks to direct attention towards the need to educate the community to care for mentally handicapped people prior to the establish- ment of further community care systems. It is argued that mentally handi- capped people living in the community are isolated in terms of both social contacts and occupation; and that certain assumptions are made, without supportive evidence, about the community’s willingness to care.

Introduction For a number of years community care

has been advocated as an alternative to residential care for mentally handicapped people in Health Service establishments. Increasingly, social service administra- tions are taking on the financial commit- ment to provide this care, largely as a result of Central Government directives or suggestions (Care in the Community, 198 1; Mental Handicap: Progress, Pro- blems and Priorities, 1980). Whilst the case for community care has been well- argued in professional spheres, little has been done to survey the desires of the community at large with regard to the type of care and support they would wish to provide for mentally handicapped people within their midst. Hawks (1975) called into question some of the assump- tions made regarding the support that the community would provide for psychiatric patients living in the community:

“It is assumed, for example, that the community is more than a geogra-

phic entity, that it is possible to identify it as capable of showing con- cern, of harbouring those skills and tolerances which previously were the province of the hospital, or else the community is capable of acquiring these skills. It assumes too, a com- munity willingness to tolerate the long term support of non-productive persons visible to the community’’ (page 277).

These assumptions apply equally to the care of mentally handicapped people.

Are assumptions fulfilled? Utilising the principle of normalisa-

tion, and an increasing concern for the rights of mentally handicapped people by those persons involved with them, has directed professional people, voluntary bodies, and parents to take up the case of care in the community. A recent article in Mental Handicap (McConkey, Walsh, and Mulcahy, 1982) has called into ques- tion the idea of community care, by rais-

ROGER HUTCHINSON is a Clinical Psychologist at St. Catherine’s Hospital, Doncaster.

ing the points that community care is often used to describe a situation in which a mentally handicapped person’s family is expected to care for him with professional rather than community support (I would argue it is not usual to expect parents to provide residential care for their children until the parents’ death) and that, when in community residential accommodation, the handicapped person is often isolated in the community in which he lives even if he is living in the parental home. McConkey et al. conducted a survey of mentally handicapped people living in the community in and around the city of Dublin. Of 562 people in the survey, only 20 per cent (mainly those in the high ability group) had a non-handicapped friend. Most mentally handicapped adults spent their leisure time with their parents, or their brothers or sisters. Only a minority spent their leisure time with friends or in community facilities. All were largely home and family bound. As McConkey et al. states, this hardly counts as community care. With an increasing number of more severely handicapped people now moving into hostels and group homes from large mental handicap hospitals, it is likely that even fewer will become involved with the local community.

Quality of life It is thought that, by living in the

community, an individual’s quality of life is improved. As yet there is no systematic study supporting this notion in respect of mentally handicapped people discharged from hospital to a smaller community

54 @ 1983 British Institute of Mental Handicap

MENTAL HANDICAP VOL. 11 JUNE 1983

unit or hostel. Many people who work in community settings with mentally handi- capped individuals find that they face pre- judice and alienation in the community in which they live.

If normalisation is a concept to be used in the provision of services for them, then a conclusion to be reached is that handi- capped people must be encouraged and supported to take as full and active a part as possible in the social life of the com- munity. When assessing whether an indi- vidual is suitable for community accom- modation or would prefer to live in the community an analysis of his likely involvement (in its widest sense) in the community is rarely made. Often the only formal club or society seeking to provide opporrunites for handicapped people to mix socially is the Gateway Club. It can be argued that it is much more appro- priate for mentally handicapped people to be members of other local clubs and societies. This does occur on an indivi- dual basis, but professionals supporting mentally handicapped people in the com- munity should attempt to involve groups in clubs and societies in the locality. This would enable them to take part in activi- ties provided within the community and to be supported - not by a professional, a volunteer, or a parent - by members of the community at large. In this way the community could take on some of the responsibilities for the care of the ment- ally handicapped people living within it.

Employment As long as special adult training centres

(ATC‘s) are provided to occupy mentally handicapped people during the day, there is little pressure on employing agencies to provide an alternative. Whilst ATC‘s are supposed to train andlor educate for employment, they often end up as hold- ing environments for handicapped persons. All ATC‘s can identify people within them who are quite capable of open employment. Special provision should be made through the employment services for such individuals to take up such employment, which would help greatly to overcome much of the isolation that mentally handicapped people experience.

Educating the community The community itself appears to be

prejudiced against mentally handicapped individuals; hence the community itself requires educating. At the same time, it must be allowed to take part in the planning of services for the mentally handicapped. Professional people involved in the planning of such services frequently exclude the community from participating in the planning, and this may well contribute to community prejudice.

Before building or adapting buildings to provide community accommodation for mentally handicapped people, it may be more appropriate to provide finance

for community education at a national or regional level, in much the same way as it has been done for breast cancer, smoking, and care of the elderly. If this is not done, mentally handicapped people will remain isolated from the community as a whole, and the community will continue to ignore its responsibilities.

Conclusion By moving a mentally handicapped

person from a large residential environ- ment such as a hospital, or by supporting the person’s family to care for him in the community, we may be doing that person a disservice by placing or maintaining him in an environment in which he is not tolerated and in which he feels isolated. To overcome this, some resources should be directed towards educating the com- munity itself to provide the care and sup- port the mentally handicapped individual requires.

References Care in the Community - a consultative document on

moving resources for care in England. London: DHSS, July 1981.

Hawks, D. Community Care - An analysis of assumptions. Brit. J . Psychiat., 1975; 127:276- 285.

McConkey, R., Walsh, J., Mulcahy, M. Mentally handicapped adults in the community - a survey conducted in and around the city of Dublin. Mental Handicap., 1982; 103, 90-93.

Mental Handicap: Progress, Problems, and Priori- ties. London: DHSS, 1980.

A SMALL NOTE OF CAUTION

Michael Wardley

Living in a small residential unit within the community Undoubtedly, on humanitarian should mean a greatly improved quality of life for severely grounds to

deinstitutionalise” mentally handi- mentally handicapped people. It can, however, mean isolation, capped children and adolescents from regression, severe problem behaviour, and much unhappiness. large mental handicap hospitals is a

This article argues for a better understanding of the complex strategy which must command support. processes involved when residents of large institutions are re- In essence, such moves can only be located in a community situation. By concentrating upon condoned; in practice, however, it is

possible that far too many vital factors factors which mainly concern the educational situation, some of may not be being taken into full con- the major problems are discussed in greater detail. sideration. In simple terms, I am worried

It is hoped that, whilst the impetus for community place- that individuals now being transferred ments continues unabated, we should not, through lack of from hospital to community residence adequate foresight and planning, relegate the handicapped not be getting the best

possible. Politically, the country is aware of some community resident to the status of a second class citizen.

necessity for movement, and a drive for action is manifest in verv real terms. Such

the present

MICHAEL WARDLEY has responsibility for Curriculum Innovation an ideological consens;s, however, may and Development at the Royal Albert Hospital Special School, Ashton r:i ~~~$~~~~~ $ ~ ~ ~ ~ ~ ~ : ~ Road, Lancaster. tion. Whilst politicians, bureaucrats, and

@ 1983 British Institute of Mental Handicap 55