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Independent Living & Medical Model of Disability

Editor's Note: Editor's Note: This article is reprinted from the Disability India Journal, November, 2000.

Our opinions, as disabled people, on the subject of disability are not generally rewarded with the same validity as the opinions of experts, particularly, medical "experts". They reproduce the myths of disability through books, articles, lectures and other forms of soothsaying and oracle, whilst also having the good fortune of receiving a salary for their effort. It is not, of course, in dispute that they deal with facts-the question is rather one of whether these facts can be adequately interpreted from a strictly medical point of view. Is the perspective of medicine in historical blinkers, such that the facts are inevitably sucked into a mode of interpretation that has been predetermined? Are these facts simply processed in such a way that there is necessarily built upon them an image of the disabled person as inadequate?

Presumably it is possible under certain conditions to isolate a set of facts, in the form of a list of general physical or intellectual characteristics, that apply to each form of disability. But the use of these is limited, as there cannot be a formula derived from them that will cope with the particular needs of an individual. Indeed, taken alone, the facts may lead to distortion and misunderstanding and to a view of disabled people as a category of rejects, as people flawed on some aspect of their humanity. The medical mode of disability is one rooted in an undue emphasis on clinical diagnosis, the very nature of which is destined to lead to a partial and inhibiting view of the disabled individual.

In order to understand disability as an experience, as a lived-in thing, we need much more than medical "facts", however necessary these are in determining medication. The problem comes when they determine not only the form of treatment (if treatment is appropriate), but also the form of life for the Person who happens to be disabled. Therefore, we need to build up a picture of what it is like to be a disabled person in a world run by non-disabled people. This involves treating the experiences and opinions of people with disabilities as valid and important. More than this, they must be nurtured and given an overriding significance in order that they begin to outweigh the detached observations of the medical "expert". Our experience must be expressed in our words and integrated into the consciousness of mainstream society.

If the experience of disability is always presented in the context of the medical implications it is supposed to have, it will always be seen as largely a matter of a particular set of physical or intellectual dysfunctions and little else. In this way the myth is perpetuated that disabled people require medical supervision as a permanent factor in their lives.

As in society generally, the language used and the situation in which it is expressed will determine the message that goes out to those listening. What we have to get to, instead of this, is the real person inside the image of disability. To begin with, we are not "the disabled". We are disabled. We are disabled people or even people with disabilities. It is important that we do not allow ourselves to be dismissed as if we all come under this one great metaphysical category "the disabled". The effect of this is a depersonalization, a sweeping dismissal of our rights to be seen as people with our own uniqueness, rather than as the anonymous constituents of a category or group.

Similarly, we must note the way in which the form of presentation of a disabled person's experience can be prejudicial to whether that experience is understood. It can predetermine the image of a disabled person's life that comes through, while appearing on the surface to be an objective attempt at allowing us to speak for ourselves.

We are people with different requirements, yet we are disabled by a society that is geared to the needs of those who can walk, have perfect sight and hearing, can speak distinctly, and are intellectually dexterous. If society was organized on a more equitable basis, many of the problems associated with not being physically "perfect". I refer to a problem of access to building and facilities in the community, and to the callous disregard with which our needs are ignored despite the efforts of sundry committees, working parties and other bodies on our behalf. We are disabled by buildings that are not designed to admit us, and this in turn leads to a whole range of further disablement's regarding our education, our chances of gaining employment, our social lives in the construction of society. However, this argument is usually rejected, precisely because to accept it involves recognizing the extent to which we are not merely unfortunate, but directly oppressed by a hostile social environment.

The Medical Model Limits Progress

The question of definition bears very directly on the outlook of the medical profession, which has exhibited an unwillingness to revise the manner in which it views people with disabilities. The problems, from our point of view, is that medical people tend to see all difficulties solely from the perspective of proposed treatments for a "patient" without recognizing that the individual has to weigh up whether this treatment fits into the overall economy of his life. In the past especially, doctors have been too willing to suggest medical treatment and hospitalization, even when this would not necessarily improve the quality of life for the person concerned. This definition has portrayed disability as almost entirely a medical problem.

The limited parameters of this model have been passed on to other professionals and to people with disabilities themselves, leading to unimaginative responses by service providers and to low expectations for themselves. This depressing situation may, to some extent, be changing, but disabled people still suffer from being viewed and defined within this medical model, with its implication that someone will, and should, always be in and out of hospital.

This way of looking at things ignores the sociological and psychological aspects of disability. It ignores the fact that frequent hospitalization and medical treatment is itself one of the most disabling factors about being disabled.

But the truth is, like everybody else, we have a range of things we can and cannot do, a range of abilities both mental and physical that are unique to us as individuals. The only difference between other people and us is that we are viewed through spectacles that only focus on our inability, and which suffer an automatic blindness--a sort of medicalized social reflex--regarding our abilities. The dustbin definition of us as the "disabled" is a way of looking at us not as people with different abilities, and consequently different needs, but as non-people with non-abilities. We are not viewed as people who can construct a life out of our different abilities, but as helpless individuals who have been forced into a life that is constructed for them.

Image: Close-up of wheelchair wheel, with hand

Disability vs. Disease

In order to break this disabling definition of a disability being exclusively a medical problem, with medical and para-medical solutions (which in most cases means "no solution"), we must distinguish between a disability and a disease, for there is frequently a confusion of the two. Whereas a disease has a demonstrable physical manifestation (with the exception of the controversial area of mental illness), a disability is by no means so tangible. It results in the inability to carry out certain activities. It is entirely inappropriate to see someone with a disability as a person who "suffers" from a disease, as this does not contribute to an understanding of the life they lead. It may well be drawing the individual back within the medical model and its debilitating emphasis on physical limitations and its consequent low expectations.

Many disabilities are clearly not diseases, as they might have resulted from traumatic accidents, but even in cases where a disease can be named, it is tangential to see the individual as a "diseased" person. The disability is simply a part of being the person one is, in the context of the social world one lives in. Indeed, there is literally no case in which a disabled person should be seen as "diseased", because no disease related to disability (or anything else for that matter) extends so completely into a person's life as to define that person.

In the independent living movement, we reject definitions that limit and control us, because they do not describe our aspirations. We emphasize our desire for a place in society, to participate as equal members with something to say and a life to lead; we demand the right to take the same risks and seek the same rewards.

We raise our voices against being victims of a vicious circle, for the control that is defines the disabled individual by the medical profession, social services, relatives, etc., conditions that individual to accept a dependent status in which their life only takes place by proxy, resulting in them being unable to visualize independent ways of living.

The control that we demand over our own lives is one that accepts that we are as irresponsible as everybody else and that we may not always do the right thing from a medical point of view. This is what I mean by the right to take risks. If we are to be treated as individuals who are due the same respect as other people, then we must be allowed to choose a way of living that confronts all the options and risks throughout life that are inherent to living in, rather than outside, society. We believe fundamentally that all individuals have the right to live independently in the community regardless of their disability.

Yet it is important to note the sense in which we use the word "independence" because it is crucial to everything we are saying. We do not use the term "independent" to mean someone who can do everything for themselves, but to indicate someone who has taken control of his life and chooses how that life is to be led. It cannot be applied to someone living in an institutional setting, therefore, because the routine of their life will be predetermined, to a greater or lesser extent, by the needs of the professionals in charge of the institution. However, it can be applied to the most severely disabled person who lives in the community and organizes all the help or "care" they need as part of a freely chosen lifestyle. The most important factor is not the amount of physical tasks a person can perform, but the amount of control they have over their everyday routine. The degree of disability does not determine the amount of independence achieved.

We believe that the choice of independent living is not a privilege conferred on us by a generous society, but is the right of all individuals, regardless of disability, to live in the community. We see it as a right that has to be restored to us rather than a freely given gift. Those people with disabilities, who have achieved it in our society today, usually have done so through a process of struggle that continues day in and day out. Yet the benefits far outweigh the disadvantages of the struggle, and the struggle becomes less difficult as more and more people with disabilities assert their right to live independently.

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