Growing up with a disability is a form of life. Depending on the severity of the disability, it may influence all aspects of life to different degrees. An adult who, due to disease or trauma, acquires a disability, may have to change most habits and everyday functions, including education and work. To understand this life form, it is necessary to acknowledge that "disability" is a social and cultural construct, which reflects a society's policy and practice towards people with disabilities (cf. Oliver, 1986). Such policies and practices have been created mainly by the able-bodied majority and vary from country to country. They have changed during recent years, typically from segregation of disabled people to non-segregation, and from their dependence towards independence.
"We have had people with disabilities, however, throughout recorded history, in all of the world's countries. The problems of these people were dealt with by their families, at the community level. That makes sense, in a profound way that we only recently have begun to appreciate. It is, after all, in the community that these people live and should live" (Bowe, 1990).
The quotation above reflects on the situation that has dominated in rural settings, and highlights the positive elements of the "community approach" within (re)habilitation practice. (Habilitation is concerned with people with developmental disabilities while rehabilitation is concerned with people who have acquired disabilities). However, what may be true for rural communities is not necessarily valid in an urban society. In fact, the charity practice and communal solidarity with poor and disabled people found in medieval villages in Europe until the thirteenth century, progressively disappeared with the growth of towns (le Disert, 1987).
Many of the community attitudes with regard to disabled people were based on a general belief that considered them as a part of the world's order and God's will. The traditional notion that poor and disabled people "will always be with us", is no longer valid when such people are not considered as individuals in a community or identified as members of a family, but looked upon as a "mass" of underprivileged beings in the streets of the town, a mass that may menace the social organisation.
The development of policy and practice with regard to the position of disabled people in society can be divided into three basic approaches resuming a long history of attitudes and conceptions in relation with disablement. The longest period historically corresponds to a "traditional approach". The second approach is the "(re)habilitation model", and the third one is termed the "independent living model". The three approaches partly reflect the views of different age periods, but many elements of all three paradigms live together in the attitudes and apprehensions towards disabled people in the European societies of today.
It is a paradox that throughout history, the problem for people with disabilities has not been a lack of integration, but, rather, an unfulfilled form of "integration", with limited possibilities for education, work and social life. Disabled people have always had a place in society, but a place that the misconceptions of the leaders of the community and the community itself prescribed for them. Mainly, the roles given to disabled people had negative characteristics. In antiquity, for example, deafness was regarded as a kind of disease that made the deaf person unable to develop the skills that were necessary to function as a responsible citizen. Followingly, the Roman law and derived systems treated deaf people as special cases. Occasionally, a disability was linked to a special ability. For example, blind people have often had special skills attributed to them, particularly with regard to music and poetry, and "seeing" into the future. Old Greece, Rome and Egypt represented examples, both of rejection (sometimes physical elimination) and sacralization. In one extreme, the person with an impairment could be the expression of Evil, and, in the other extreme, a hierophant.
With the rise of Christianity, the focus changed. People who were crippled, sick, blind, or deaf, were regarded as objects of charity, and people who were mentally retarded as "innocent". It was thought proper that they should beg, in order to give others an opportunity to show charity, or to be taken under the care of the church. The task of the church was not only to provide care, but also to gain the person entrance to Heaven. For example, if the person was not confirmed, he or she could not be saved. This was a reason for the church to undertake to teach deaf people to speak and learn the catechism. These complementary roles of the church and the disabled person may be regarded as a first basis of the later development towards institutional care.
In the fifteenth and sixteenth century, during the constitution of the modern European states, poor and disabled people became subjects of administration as an aspect of the Public Order. The time of enlightment transformed them to subjects of care during the eighteenth century. At the same time, the "normal" citizens were, step by step, obtaining civil rights through confrontation with the ruling class (the word "normal" appeared at this time in France [le Disert, 1987]).
The positivism of the nineteenth century led to a new emphasis. The disabled person became a problem subject, and an object of study for psychology, medicine and education. Techniques for the education of blind and deaf people, which started in the previous period, became consolidated (including strong scholastic differences and trends). New categories of impairment were studied at the same time as the differentiation between the asylum and the hospital was reinforced, the latter being a centre with socio-scientific functions. For example, the first school for deaf in the USA, which was founded in 1807, was called "The Asylum".
The time had still not come, however, to discuss education for severely disabled children. Thus, the available efforts were directed towards children who posed minor and moderate problems for the teacher. Segregation in education was introduced to provide disabled children with a possibility to learn, and this initial segregation no doubt had positive effects if one disregards the fact that, with exception of deaf children who are dependent on a signing environment, non-segregated special education probably would have given the same results.
The order of the Church was replaced by the order of the bourgeoisie. The age of enlightment had led to a growing educational focus, but while the general concern of the society was on work and production, disabled people were not yet regarded as able to continue industrial production. They were still, to a large extent, deprived of the role of worker, and thereby also deprived of the possibility of obtaining a reasonable status in society. The function of disabled people was to be the subject of protection by a liberal and progressive society, with the control lying within that society. The first schemes of social protection and social provision appeared, which formed the basis of modern social security and compensation benefits.
In many ways, it was the consequences of the two world wars that led to the creation of a new approach, with an emphasis on repair of functional impairments. According to a (re)habilitation model (Dejong, 1979; 1984), the main problem is the impairment of the individual, and his or her lack of skills. The aim of (re)habilitation is the development or recovery of functional skills (e.g. activities of daily living) and employment (productivity). Because the problem resides in the individual, the key to resolving the problem is professional intervention by physicians, physiotherapists, occupational therapists, rehabilitation counsellors, psychologists, social workers etc. The social role of an individual with a disability is that of patient or client. The focus of control always lies with the professional, typically a physician.
The model of (re)habilitation is a medical-industrial model with a therapeutic and recuperationist technology that transcends the traditional paradigm by seeking to change the prospects of the disabled person. It is a consequent application of the industrialist and positivist ideology, and a result of the approach which takes the disabled person as an object of study. In line with the ideology of the industrialization of society, people are evaluated within the framework of useful-unuseful, or able-unable.
The ideology of medical rehabilitation, which is the core of this paradigm, was established during the Second World War by Rusk, and is still maintained today. It is a philosophy of medical responsibility, striving towards the goal of individual restoration and an optimal level of self care and functional performance (Kottke, Stilwell and Lehman, 1988). The following quotation from the Spanish legislation is evidence of the emphasis on individual repair: "All have the right to correct or modify his/her state" (when this is an obstacle to be integrated into society).
From a medical point of view, (re)habilitation represents a third phase of medical care. The first phase is preventative, the second curative and surgical and the third is (re)habilitative. This chain, or - better - assembly line conception, was first introduced by practitioners in the USA in the 1940s, and later adapted by most other Western countries. True to the values of the industrialized society, i.e. productivity and functionality (work), a cost-benefit analysis was the basis for evaluation of the rehabilitation process (Kottke et al., 1988).
In many ways, the (re)habilitation model represented a major step forward, and has led to improved life for many people. It has inspired the invention of many different forms of equipment and techniques, and has thereby contributed to a more active life for people who would otherwise have been institutionalized or would have languished in the old convalescence systems. Still, the focus on production skills and individual repair implied some severe limitations. In recent years, the framework has been altered. Significantly, new and better evaluation approaches have been introduced, including more quality-of-life criteria (Emerson & Pretty, 1987; Fugl-Meyer, 1987). The analyses are not only concerned with the limitations of the individual, but also include the environmental barriers. This focus is also dominant in the World Health Organization's "International classification of impairments, disabilities and handicaps" (WHO, 1980).
However, it is important to realize that much of the (re)habilitational work is still performed by professionals who "know best" what the needs of people with disabilities are. These attitudes are typically linked with professional interests that overshadow the interests and preferences of the individual. For example, the interest of special teachers to remain in large institutions has hampered the transition of handicapped people to non-segregated educational institutions, and the learning of skills that are needed in a non-segregated society.
Both the traditional and the (re)habilitational approach place the focus of the problem in the individual. The traditional approach focused on identification and care of disabled people. It had very limited (re)habilitational goals, reflecting the static and deterministic view of human development that has characterized most of historic development. The (re)habilitational approach placed the repair and development processes into focus, but was to a large degree technical and mechanical. Aside from production skills, little attention was given to the person's function in society: it was a personal catastrophe (cf. Oliver, 1986). If segregation was assumed to provide the best restoration of production skills (with education as part of the repair process), there was no hesitation about segregating the person.
The model for independent living is a socio-political model that represents a radical break with both the role as an object of charity, and as a patient. The view incorporates the fundamental willingness to repair or improve an impaired function, but transcends the (re)habilitation by rejecting an evaluation of the individual based on production and self help abilities. The shift in emphasis was to a large degree initiated by the increasing awareness of people with disabilities, with regard to the roles they were allowed to play in society (cf. Abberley, 1987). Thus, the important contribution of the model of independent living is an emphasis on participation in society, strongly rooted in a belief in equality.
The model of independent living and accessibility to society reflects a fundamental change in attitudes, and consequently, of the roles attributed to disabled people. These attitudes both inspired, and were inspired by, the movements of people with disabilities themselves (e.g. "deaf consciousness" and "centres for independent living"), which were and still are important tools in the process of desegregation. People with severe physical impairments - and their relatives - have demonstrated in practice that the prognosis of dependency and institutionalization assigned to them could be conquered. Starting in California in USA in 1972, the movement and its ideology spread to other countries, mainly in Europe (see Heumann, 1986). The movement has been dominated by intellectually well-functioning people with motor disabilities, and has only to a lesser degree been concerned with people who have impaired linguistic and cognitive skills. However, the role of intellectually handicapped people in society is also discussed within this framework today (e.g. Abraham, 1989; Hewitt, 1987; Rock, 1988).
Many of the attitudes toward disability and the trends in society got a foothold first among professionals, and only later appeared in the legal and political world. For example, the normalization principle proposed by Bank-Mikkelsen has significantly influenced the policies on people with mental retardation. It is founded on the right to be considered and treated like anybody else, but initiated in a critique of the concept of "normality". The ideas of "mainstreaming" in USA and "school integration" in Europe also originated in a critique of the traditional segregated special education, and have been extended to all other domains of life.
The basic notions - mainly elaborated by people with disabilities - expressed in the independent living model both oppose and complement the (re)habilitation approach (Dejong, 1979; 1984). In this model, the main problem (particularly for adolescents and adults, but initiated in early development), is the dependency on professionals and family. The problem resides in the environment and in the characteristics of the (re)habilitation process itself; the keys to its solution are peer orientation, legal action (advocacy), self-help, consumer control, removal of physical and psychological (attitudes of other people) barriers in the environment. The person with a disability is a citizen with equal rights, and should have access to the usual variety of roles that are filled by different members of a society. Significantly, the aim is independent living, and the disabled person should be the controller of the processes.
Although the movement of independent living was named by the members of the movement, the content may be better described by the term "autonomy". From the point of view of classical rehabilitation, "independence" has a functional and physically connotation, which is to improve performance of the activities of daily living. Within the framework of "independent living", "independence" expresses the capacity of the person to take his or her own decisions. In this approach, the consequences of disability on the individual's life should be looked at from a social, economical and political perspective, and not exclusively from a reductionistic physical- medical point of view (Zola, 1988). Even a physically extremely dependent person (with a high need of attendant care) could be independent (autonomous) from this point of view, insofar as he or she decides the daily matters and the degree and form of assistance (cf. Brisenden, 1986; Rock, 1988). On the other hand, a "successfully" (re)habilitated person, for example, who has recovered a high degree of physical autonomy, could still live a dependent and protected life. The lack of autonomy may be caused by fears and misconceptions about the world, which have been formed by professional restrictions and the attitudes relayed by the people in the social environment (family, peers, teachers, etc.).
By defining the problem as residing in the environment, the movement of independent living provided a basis for the notion of "accessibility". With regard to the physical environment, accessibility implies a need for awareness in design, so that only a few people will be excluded (cf. Shalinsky, 1989). The current possibilities offered by technological advances, especially in the field of information and communication technology, are increasing the expectations of people with disabilities, that is, the hopes that they will be able to share the services and facilities that modern societies provide for their citizens, such as access to telecommunication. For example, it took about a hundred years from the invention of the telephone before people with profound deafness obtained the means to communicate on the telephone network by means of writing; and in many countries, this possibility still hardly exists. The likelihood that many of the great expectations with regard to access to society will be filled is to a lesser and lesser degree dependent on technological development in general, and to a greater degree dependent on the attitudes of politicians and other members of society, and on their willingness to use legislation and regulations as means for providing a basis for less commercial aspects of technological development in the field of (re)habilitation.
At the same time, it is important that the development does not lead to "electronic care" and a return to the traditional role of the disabled person. For society to function, different obstacles must be surmounted. Obstacles of communication may be overcome by building roads, bridges, telephone networks, etc. People may experience obstacles of different degrees and types, but still have equal right to have them removed. In a true non-segregated society this is not a matter of charity, but of sharing the resources of the society. And, it is not enough that the physical environment is as accessible as possible. For the expectations of disabled people to be fulfilled, the social environment, that is, contact with people, must also be accessible.
All three traditions are part of the lives of people with disabilities. Some of the elements are positive, while others lead to increased dependency and oppression of disabled people (cf. Abberley, 1987). The "problem" approach of the eighteenth and nineteenth century is still apparent in the attempts to understand the development of language and learning disorders, and thereby of human development in general. Today, contributions from cognitive science may lead to new understanding and may change some of the traditional views of cognitive functions, such as memory, language, perception and reasoning. This knowledge is likely to have implications for the design and function of aids for disabled children and adults: for example, in the construction and choice of vocabulary in communication aids. However, the role of charity and the failure of society to understand the disabled person within a wider context are elements of this tradition that should be substituted by the more life quality oriented philosophy of independent living.
Similarly, the medical (re)habilitational model is important in its willingness to repair impaired functions, although the impact may have been greatest for people with acquired impairments; but its focus on the disabled person as a client is too narrow. Both impairment "as a problem" and "as something to repair" is supplemental to the independent living model, and for some -for example people with intellectual impairments- is even a prerequisite for optimal adaptation of the environment to the functions of the person. Many people with disabilities need and want help, both technical and manual. However, they do not want to be told how to live and what help to get. They want to devise and control their own life styles within the scope of their own limitations, in the same way as the rest of society (Brisenden, 1986). Not all disabled people are seeking an active life. The differences between disabled people are the same as those within society at large; some may prefer a more passive form of participation. In a typical restaurant conversation there will be people who speak all the time while others hardly say a word, but both kinds may experience social participation in equal degrees. This may not be the perfect analogy, but many well -meaning persons make the erroneous assumption that their own frantic life style is the best for everyone. One should not underestimate the factor of time. For many disabled people, most activities take longer time, and more effort. For them, a full and rich life may have fewer or shorter elements.
To sum up, today's societies are moving towards an era in which disabled people will not settle for their traditional role. To accommodate this change, disability must be understood from a comprehensive point of view, in line with the social definition of the concept (cf. Oliver & Zarb, 1989). It is not enough to make technological devices and provide these to the users. The role of these devices in shaping the life of the users must be understood. The influence on work, education and other aspects of personal and social life must be investigated, as well as the role of models for distribution of devices and services, and the funding of research, development and supply to individual users. In this development, it is important that disabled people neither assume nor are given the role of passive consumers. Participation must be equal, not only with regard to matters of concern to people with disabilities, but also in matters of concern to society in general, in the same way that people without disabilities should be concerned with matters for all groups, whether they have disabilities or not. There may be a long way to go before this era comes. The power of disabled people as a social movement is limited, despite the fact that in recent years the rights of disabled citizens has become an acknowledged political problem. Many disabled adults are still living at home or in settlements that give them limited freedom to choose their own life style (Clark &Hirst, 1989). The passive role they assume is also manifested by the fact that a large proportion of disabled people do not themselves take the initiative by using their right to vote (Oliver & Zarb, 1989).References:
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