PLANNING SERVICES TOGETHER WITH DISABLED PEOPLE:

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PLANNING SERVICES TOGETHER WITH DISABLED PEOPLE:

THE IMPORTANCE OF A COMMON LANGUAGE

a Victor Finkelsteinb

The 1981 International Year of Disabled Persons reflected and encouraged changes that were already happening all over the world, and that have created the need for new definitions of disability. It is these changes that make it necessary for us to improve our understanding of disability. Before looking at different definitions and concepts, it is worth deter- mining the starting points for discussion on the need for changes in the way we think about disability, namely:

• the important consequences arising out of the greater participation of disabled people in their own communities; and

• the growing criticism of existing disability-related services.

Greater participation of disabled people

Disabled people have become more integrated into their communities. Three areas where this change is most notable can be listed as public influence, visibi- lity, and access. There are now more disabled people occupying influential positions in ordinary life. For example, the vice-chairperson of Disabled Peoples International has become a city councillor in Zimbabwe. In France, one of the government min- isters is a disabled person. An increasing number of books written by disabled people are being used as textbooks in training and are having an increasing influence on services.

Until recently, policy in industrialized countries had gradually led to the provision of a wide range of special facilities which effectively removed disabled people from their communities, and it had become rare to see disabled people in public. However, in recent years, this trend has been somewhat reversed (most markedly, for instance, in Nordic countries).

Ramps, beeping pedestrian crossings, etc., have made "disabled living" more familiar and less threatening to non-disabled people. Very often the wider spaces needed for wheelchair access and the improved communication systems needed for blind and deaf persons have also made life more comfort- able for the non-disabled.

Deeper and sharper criticism of services for disabled people

An increasing number of reports criticize the inadequacy of services for disabled people. In this light, one should question the adequacy of rehabilitation concepts as a framework for service delivery and the

a This article is based on a paper presented at a meeting on the United Nations Disability Data Base, held in Budapest (Hungary), on 17 november 1988.

O Lecturer, the Open University, United Kingdom; formerly Chairman, Disabled Peoples International Research Committee; and formerly Member, Disabled Peoples International World Council.

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competency of rehabilitation as a coherent mode of helping disabled people. There is growing literature questioning not only the adequacy of service delivery to disabled people but also the appropriateness of some of the basic premises behind these services. The most widely expressed criticism ques- tions the relevance and appropriateness of the medical approaches to the social problems that disabled people face. Research is also beginning to reveal a gap in perception of the value of services between service providers and service users.

Some professions that have evolved to fill service roles related to disability may suffer from a professional rigidity which can quickly put them out of step with changing conditions. For example, occu- pational therapy took on the role of assessing disabled people for the provision of equipment and recommending house adaptations after it had ma- tured into a profession, based upon medical ideas about therapy in the hospital or rehabilitation set- ting. One could however argue that it may be prefer- able for the provision of equipment to disabled people to be based on the principles of engineering and design rather than on medical or paramedical theories.

As long as services are planned and developed on the basis of concepts and definitions which are not fully appropriate, these problems will remain. It is important, therefore, to go back and take a clearer and deeper look at basic definitions of disability and the appropriate forms of help.

Basic assumptions: the "cure or care" forms of help

There are two assumptions in disability about which all can agree:

1. Disabled people have real personal and social problems which are neither the result of their denying their disability (as many professional workers are taught), nor simply a question of changing the attitudes of non-disabled people (as many disabled people believe).

2. Disabled people need practical assistance in overcoming these problems.

The interpretation and the consequent definition of the real problems disabled people face critically influence the decisions concerning the kind of help required. Criticisms of existing services suggest that problems faced by disabled people have been wrongly defined, and therefore the type of help provided has not been appropriate. Helping other people is not simple, and involves interactions which affect all those involved. Paralysed people taught to try and walk with calipers and crutches as a way of getting to an otherwise inaccessible toilet will de- velop long-term attitudes towards themselves that

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- 178 - will psychologically affect them. Both the type of help and how this is provided will affect the relationship between helper and helped. The way help is planned is very important and it is essential to understand this helping relationship better.

Let us look at the practice of "help" that has become normal in existing services for disabled people. Med- ical rehabilitation is perhaps a good place to start because it is in this approach that a particular form of help became systematized before being adopted in nearly all other services.

Cure

In the first instance, the label "disability" comes to mind when an individual with a physical or mental impairment who is not functioning "normally"

comes to the attention of a helper (usually a health worker), who becomes conscious of disability as a facet, or personal attribute, of the disabled individual. The objective of the helper is thus to cure the individual's problem and return him or her to normality. The aim of returning the individual to normality and eliminating the personal disability problem is the foundation upon which the whole rehabilitation machine is constructed. However, if the disability cannot be cured, normative assumptions are not abandoned: the aim of treatment now becomes "to be as normal as possible". The result can be endless soul-destroying hours of exercise trying to approximate able-bodied standards (e.g. people with a complete spinal injury learning to "walk"). In rehabilitation even "sport" ceases to be a pleasure and is imposed as a therapy, although most disabled people, like most people generally, are not as a rule mad about sport. Rehabilitation philosophy em- phasizes physical normality and the attainment of skills that allow the individual to align behaviour as closely as possible to that of the able-bodied. For example, a wheelchair is seen as a last resort, rather than as a mobility aid for disabled people (just as a pair of shoes is a mobility aid for able-bodied people).

Care

Emphasis on being and behaving as normally as possible can condition helpers and planners to think very narrowly about the kind of lives disabled people can lead. Given that disabled people cannot be "cured", the "degree of normality" achieved can assume great significance in the minds of those who plan helping services. The logic of rehabilitation is that the closer people get to functioning in a normal way, the more they are thought capable of living in normal society; conversely, the further they are from normal functioning, the greater the degree of care considered necessary. From the point of view of rehabilitation, therefore, planning requires informa- tion about the degree of normality, or, in question- naires designed for planning, measures of the loss of normal function. This emphasis on normality gets reinforced at the practical level; for example, public transport (an able-bodied mobility aid) cannot be used by people with mobility impairments, who are thus in effect prevented from doing their own shop- ping. Under those circumstances, they have no alternative but to rely on others to care for them.

This can reinforce the view that, if there is no complete cure, the degree of normality achieved during rehabilitation determines the degree of care that will eventually be needed in the community.

Rehabilitation workers thus have an incentive to follow disabled people out of the hospital, and half- way schemes, into the community (community- based rehabilitation); in this context, the choice for disabled people, in practice, is either to succeed in being normal or else suffer indefinite intervention in their lives in the community.

At the psychological level, it seems natural, if the key objective of rehabilitation is normality, to en- courage disabled people, as far as possible, to assimilate the standards of normal role models.

However, disabled people are not "normal". They do not look or behave "normally"; there is a limited possibility of a "normal" social life for them in a world designed for people with able bodies. Even when the objective is to be "as normal as possible"

the inaccessibility of a world designed for people with able bodies constantly reinforces the lesson that disabled people have failed the ultimate goal of rehabilitation, and entails pressure on them to ac- cept their limitations in the able-bodied world by adjusting, to disability. In this context, the choice for disabled people is again either to succeed in assimil- ating the values of normal society, or suffer feelings of inadequacy indefinitely.

Rehabilitation values are a powerful force in the planning side of disability services. The central concepts and philosophy of rehabilitation, which per- meate medical rehabilitation and its offshoots, e.g.

community-based rehabilitation, present no obvious alternatives to "cure or care". This philosophy tends to dominate all services for disabled people. In Britain, for example, the Chronically Sick and Dis- abled Persons Act (1970) applied the medical rehabilitation concepts of disability to life in the community.

Its starting point was that when a complete cure was not possible, what was needed for the individual to survive in the community was personal care. The

"cure or care" approach to helping disabled people has a long history and represents the traditional way of viewing assistance to disabled people. This approach presents the following characteristics:

• it is personal-disabled people need personal help in overcoming the problems which they face (hence, impairment, disability and handicap are defined in personal terms);

• it lays stress on abnormality-problems result from an individual's abnormality of body or mind (hence, an emphasis on assessing individual functioning for access to the services);

• it lays stress on inability-the abnormality of body or mind is interpreted as preventing indi- viduals from doing something that is normal for their peers (hence, an emphasis on caring services);

• it tends to be piecemeal-planning of personal care services tends to follow a series of crises over time, using ad hoe definitions which often do not get to the heart of the matter. Each new approach attempts to patch up gaps (hence a lack of understanding of the nature of disability, and the development of strategic ways of solving outstanding problems).

Moving on from "cure or care"

One problem lies in that people think that the "cure or care" approach can be successfully applied in

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- 179 - areas where it is not appropriate. The benefits of good medical practice are undeniable. When I became disabled, tetraplegics were not living more than a few years. More than 30 years later, as a direct result of help, I am still around, criticizing the medical profession. However, the intrinsic negative implications in the rehabilitation approach to help have not been properly analysed and understood.

The development of new techniques and industrial materials in the late 1960s opened up innovative prospects for disabled people in their communities.

This, in turn, brought problems inherent in the rehabilitation concept of disability into the open. The positive side of the "cure or care" approach to help is increasingly overshadowed by its negative effects.

In industrialized countries, the (re)appearance of disabled people in the community may be a turning point in breaking down the "cure or care" approach to rehabilitation. When disabled people try to get about in the able-bodied world, they are bound to see and define the problems that they face more in terms of social and physical environment than in terms of abnormalities of their own minds and bodies. With this approach, disabled people will be doing just what their able-bodied peers do in a similar situation-seeking ways of modifying environment and behaviours, so that barriers to independence are removed. Able-bodied people, faced with the problem of swifter transport, did not think that the problem lay in their defectiveness of body;

they invented the fast train and the airplane. Such

"able-bodied aids" adapt the physical and social environment to able-bodied imagination; they pro- vide proof that there is no set limit to human independence, and that the choice does not have to

be between finding an effective cure or providing appropriate care.

The key principle in redefining the impact of disability (and the ways of living with it) is to redefine disability as a dynamic relationship between:

- people who have specific physical and mental impairments; and

- the social and physical barriers imposed by a world designed for able-bodied living.

One suitable definition might read:

- impairment: lacking part of or all of a limb, or having a defective limb, organ or mechanisms of the body;

- disability: disadvantage or restriction of activity caused by a social organization which takes no or little account of people who have physical impairments and thus excludes them from the main- stream of social activities.

This concept represents a fundamental shift in think- ing, from the individualistic, "cure or care" approach, to a social interpretation of disability, the elements for a new understanding of which are already present in society. Arguments in favour of such an understanding (such as those developed by the Union of the Physically Impaired Against Segre- gation in their 1976 statement on Fundamental Princ- iples of Disability) will increase in importance as we move into comprehensive planning towards the development and practical application of a community- based support system for disabled people.

SUMMARY

The very terms used to describe the consequences of disease have normative implications which have important repercussions on the elaboration of pol- icies with respect to the identification and treatment of these consequences. The author highlights the

problems and effects caused by an individualistic procedure based mainly on the "cure or care" approach, and suggests a terminological and con- ceptual framework which might take better account of the social aspects of disability.

RESUME

La planification des services en collaboration avec les

personnes atteintes d'incapacites: l'importance d'un langage commun

Le vocabulaire meme utilise pour la description des consequences de la maladie est base sur des implications normatives qui ant des consequences impor- tantes pour le developpement de politiques relatives

a

!'identification et

a

l'approche de ces consequences. L'auteur releve les difficultes et les consequen-

Wld hlth statist. quart., 42 (1989)

ces qu'entrainent les approches individualistes es- sentiellement basees sur la dualite «guerir ou soi- gnern, et presente une argumentation pour une orientation terminologique et conceptuelle qui fasse aux interpretations sociales de l'incapacite une part plus appropriee.