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Web Posted on: August 24, 1998

Technology, Policy and Disability: "A perspective from the user"


Manuel Lobato (Spain)
E-mail address: manuel.lobato@lgr.servicom.es


As I was preparing this paper, I remembered the story of Koldo. Koldo was a citizen of the European Union who, since being diagnosed with Amiotrophic Lateral Sclerosis (ALS) had lived his life in a wheelchair. Eventually, his computer became an indispensable tool to replace more conventional forms of human communication. His life, characterized by his indomitable will to live, was cut short by pneumonia. While in hospital, he was unable to tell anyone that the position of his head prevented him from breathing properly. Only the unexpected visit of the occupational therapist who had been working with him in the city of Vitoria enabled him to communicate this difficulty and get some relief. That same day he died.

Olga also comes to mind. In spite of her youth she has already written a book about her experiences fighting ALS. Her bedroom is like an Intensive Care Unit installed in her parents home with her family performing all of the functions of the health workers, on duty round the clock. Up till now, only her mother was able to understand her barely legible scribbles. Her severe motor difficulties as well as extreme vision problem make it difficult to provide her with a technological tool which could enable her to communicate. As time goes by her mother finds it increasingly difficult to understand her and we all get more and more nervous.

I also recall the many children who don't have access to the technological tools or health care workers that would provide them with the autonomous movement so necessary from an early age. Without this help these children grow up with severe deficits in their personal development. In the future people will say that in addition to their physical, psychological or sensory deficits they also have developmental disability.

In extension, I think in millions of european citizens that haven't a dignified quality of life, an access to a dignified qualitative education, a job, to travel o simply relax. Many of them are suffering because they know their disabilities are affecting to family and friends.

Probably everyone has heard, at onetime or another, on the radio, television or through the press, of the European Union but for most of us, the concept of a Europe of Citizens is still meaningless.

At the present time there are many handicapped people, including myself, for whom the simultaneous and/or complementary role of technology and personal assistance is the only guarantee of an independent life in which we can make our own decisions. Any policy regarding the disabled, especially on the European level, should be based on the recognition of the civil rights of all disabled people and that discrimination should be penalized as is the case when a member state exceeds, for example, its designated quota of milk production.

This recognition of civil rights, currently a weak and virtually non-existent practice should insure, among other things, that disabled people have access to the technology they need in order to achieve the level of personal dignity which distinguishes us as Europeans, form other regions of the planet.

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The central role of technology in human affairs is undeniable. Technology is involved in most of our activities, prospects and even our beliefs. Traces of the human use of technique can be found in our earliest appearance as humans on Earth. Actually the documentation of human presence on the planet is all based on the presence of artifacts (technics). In addition, almost all objects used in daily life contain or imply a highly developed technology. It is clear that, initially, technique and subsequently, technology which implies the systemization of scientific knowledge, are intrinsic to human nature.
When technology is applied to the field of the disability (Assistive Technology - AT) there is, nevertheless a nuance which must be taken into account and which differentiates it from other applications. The products derived from RT not only satisfy those needs related to the performance of tasks but also provide people with different levels of "being"; a wheelchair, for example allows the user to "be" a child, youth or an adult and goes far beyond the issue of mobility for which it was originally designed.

John Smeaton , a great English engineer, said that "the capacity of an individual is a debt which must be paid to the common good of happiness and the satisfaction of public needs". This philosophy of technology, which, in part, continues to exist to this day is in contrast with the political control that is exerted on it. On one hand, technology applied to the field of health services, especially in relation to diagnosis and surgery has drastically reduced mortality and increased life expectancy . As a result of this technology thousands of people are alive albeit burdened by deficiencies and disabilities, and in many cases, in an indigent and inhuman manner. Health is an important political issue when it comes to getting votes which is why it the development of Health Technology is the focus of great interest and political protection, while Assistive Technology receives meager support.

These political interests can also be seen with AT when AT for the disabled is compared with AT for the aged. I believe that this specialization responds more to a desire to satisfy an increasingly powerful pressure group, the elderly, than to any purely technical issues : assistive devices basically facilitate independent activity regardless of the age of the user. Whether age is taken into account in the development of specific products does not affect AT as a discipline or set of disciplines.

Technological development often needs challenges to stimulate it. The conquest of space, as well as being of military interest, has posed technological challenges that have increased knowledge and revolutionized technology. Unfortunately, neither politicians nor technologists have perceived the challenge of human limitation, especially those caused by disabilities as an attractive one. I, on the other hand, have no doubt that AT is a technological challenge that can generate an enormous amount of knowledge since it involves satisfying the needs of a system as complex as a human being.

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The establishment of the European Union has been a slow and difficult process which is still underway and may possible continue indefinitely. This process is of great importance as it offers a united Europe the choice of either rescuing millions of European citizens from oblivion or paralysis or abandoning them to continue being outcasts. I am referring to the social situation of disabled people and to their status within the framework of the Union.
We must not forget that the European Union has, among others, the following mandates :

  • To promote economic and social progress.
  • To strengthen the protection of the rights and interests of the people of its member states through the creation of Citizens of the Union.
  • To maintain and develop liberty, safety and justice within the Union.

The Union is based on the principles of justice , democracy, respect for human rights and fundamental liberties, and the State of Rights, which are common to all member states.

The political organization of the European Union has designed the R+D structures which are currently in use under the IV Framework Program. A brief historical vision of the development of AT in Europe shows the lack of interest in this technology not only on the part of the Commission but also of the member states (with a few exceptions).

The TIDE program (Telecommunication Initiative for the Disabled and Elderly), the European body responsible for AT, has had to face innumerable difficulties and problems. It began as a grassroots movement of technologists and disabled people who through their daily work became increasingly convinced of its technological and social importance. At thattime we really believed that a structure that would develop AT on a European, and member state, level would be available. One of the projects that came out of that period was HEART. For the first time a systematic analysis of the AT situation in Europe was carried out which defined the goals AT should pursue. The struggle to maintain an independent AT program within the IV Framework Program, faithful to its original mandate was lost in the effort to create a political image of concern for the problems of the disabled. The politicians were unable to understand, and still don't understand, that AT cannot be developed solely from an information technology and telecommunication standpoint. Fields as important as technical aids, normalization, legislation, training and a series of other areas which are not included in the same framework are lost. From what I can see, TIDE's activity is necessary but clearly insufficient.

Today we still lack a solid, politically supported, social and technological AT project which responds more to the needs of European citizens than to political institutions. The way the V Program Guidelines are structured, it doesn't seem likely that this will be the case. In this situation the real losers are the Citizens of Europe, disabled people have had to learn to live with much less.

For the disabled, the defense of civil rights must include the promotion of AT along with other actions.

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I have to thank Erwin Seyfried, of the University of Berlin, for reminding me that the term rehabilitation comes from roman law and originally meant, the restoration of the honor and status of a person falsely accused of a crime. Thus the term implies moral issues associated with the relationship between an individual and society. Both parties involved in the process must change; the rehabilitated person achieves a higher social status and the society must alter its perception of the person who had been excluded.
Today this definition is only applied to the disabled person who needs rehabilitation through a series of compensatory techniques. Society feels that its job is done if it proclaims the principals of integration, normalization and deinstitutionalization. Just as writing a program is not the same as carrying it out since the latter requires the desire and the funding to do so, the principles which state that a disabled person has equal rights must be followed up with the creation of programs which respond to their needs and interests.
One example is deinstitutionalization. This term should not be limited to the closing of institutions specifically designed for disabled people but should also include the process by which the structures, contents and organization of social institutions are developed in order to satisfy the needs and outlooks of the disabled. If a disabled person is going to attend a normal school, transport must be arranged, the appropriate assistive devices must be provided so that people can carry out their own activities. Therefore, political attention to the disabled should be restructured to change the focus from "attention" to the right to a free and independent life.
The modern theoretical concept of disability inevitably demands the provision of elements which will free people from their physical, psycological and sensory limitations as well as from the limitations imposed by the environment. Basically, what is being proposed is what humanity has always done from time immemorial which explains why Man has developed his technological capacity.

The implementation of assistive technology and personal assistance services which avoid political public image-making and vote-getting interests are the pillars on which the development of the education, employment and transport as well as each and every activity of disabled people are based.

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