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The Independent Living Movement: Empowering People With Disabilities

From: Australian Disability Review
Creator: Irving Kenneth Zola (author)
Date: 1988
Publication: Australian Disability Review
Source: Available at selected libraries

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In The Beginning There Were Words


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and there were fifty of them:

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"No otherwise qualified handicapped individual in the United States as defined in Section 7 shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance. "

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Within the last decade words similar to these have been embodied in legislation in states, provinces, and countries around the world. They represent a shift of more than symbolic importance. They dramatise a change for all people with disabilities in our relationship to the larger society. They call for an end to our reliance on private goodwill and public charity. They call instead for a recognition of society's responsibilities and our own civil rights.

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In its wake has come a movement with different names throughout the world: Disabled People's Movement; Handicapped Rights; (and for me, I like the name because of what it conveys) The Independent Living Movement.

The Roots of the Independent Living Movement
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Like all social movements it has its roots in several others and like many movements of the Post-World War II era, it focuses on a group who has felt disenfranchised, shut off, if not excluded from the mainstream of life.

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From the Civil Rights Movement, the Independent Living Movement learned that rights without opportunity is meaningless; and so it also emphasised certain entitlements to education, income and medical assistance. It emphasised the need for affirmative action and recognised that oppression runs deep in society and thus coined the terms 'healthism' and 'handicappism' to rank with our other sins of age, sex and race.

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The Consumer Movement has often been critical of the sovereignty of the professional. As you know, this sovereignty is especially true of the medical world. For instance, the United States Rehabilitation Act of 1973 no longer allows the professional counsellor to have the final work in case planning. Instead it provides for an individual written rehabilitation plan (IWRP) to be drawn up jointly by client and counsellor.

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The Self Help or Mutual Aid Movement has long advocated that someone who has been 'there' is often the best source of support and help. This has been enshrined as one of the key services to Independent Living Centres, its peer counselling programs.

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Those involved in the processes of 'self-care' have long criticised the increasing medical domination of many of life's problems. The Independent Living Movement both recognises the important storehouse of information that former patients have, and that much of chronic care can be better handled free of medical supervision. In fact, much of this medical presence, as in the supervision and training of personal care attendants, may be unnecessary, if not counterproductive.

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And finally, there are the links to the Women's Movement. Like the Women's Self Help Movement, those in Independent Living could well have the same mother: 'Anatomy is not Destiny'. Women are struggling to reclaim their bodies from medicine. They question the growing medicalisation of their everyday lives. They criticise the necessity of labelling many of their conditions not only as medical, but then by definition something 'diseased' if not 'disabling' and thereby something to be controlled and gotten rid of (Boston Women's Health Book Collective 1985). The protest of those of us with disabilities is similar. So too are our realities. There is no denying that women menstruate and become menopausal, become pregnant and give birth. Similarly, we with disabilities do not deny that we have physical differences, be it a loss of vision, hearing, or mobility. But this does not mean we are thereby 'less thans'. The barriers to this realisation as well as to our full participation are rooted in myths, socially induced and socially maintained by some who wittingly or unwittingly have something to gain by keeping us in out places.

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Thus whatever else our challenge is about, it is about power and its locus of control: who has the right to determine what about the quality of our lives.

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In my remaining time I wish to analyse what some key quality-of-life issues look like from the Independent Living perspective.

Independence -- Whose View?
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The striving for independence is a hallmark of the rehabilitation literature (Crewe and Zola 1983). The key too often seems to be who is defining what is independence. Let me illustrate this with the physical condition I know most about: mobility. Most people with mobility problems have had to face the increased physical difficulty in doing things which once were easy. We have had to overcome much reluctance, fear, and even pain to use our muscles while our arms, legs, and even heads rebelled. And once we could reach certain physical goals -- take those steps, climb those stairs, scale that hill -- we were told explicitly that we must always do them in order to maintain out strength and independence.


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My own case has relevance here. For those who have not met me, let me briefly explain. Shortly before my sixteenth birthday I contracted polio. As a result of this and an auto accident four years later, I wear a long leg brace on my right leg, short leg brace and knee support on my left and a back support, and use two canes. The most general advice I was given was to push myself to the maximum of my physical capability. Yet I was never given any advice as to what to do when my capability had reached its limits. For me this meant travelling just like everyone else. I would park my car where they parked and walk the full distance to wherever it was that I wanted to go, even in winter on icy sidewalks. No matter that it took me five times as long to get there or that I slipped along the way, or that I arrived at my destination exhausted. The important thing was that I got there under my own steam, physically independent and mainstreamed. But the price I paid was a high one. After awhile, fewer and fewer people wished to walk at my pace. Thus, either through my embarrassment or theirs, I eventually went earlier or alone, or not at all.

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In my professional life I repeated this sequence. Arriving at Brandeis with my freshly-minted Ph.D., I was greeted by a colleague who gushed about my new office. 'It has a beautiful view', he said, pointing to the third floor window. 'Can you make it up there all right?' 'Of course,' I nearly shouted. No matter that it would take me fifteen extra minutes to reach my destination or that some colleagues might have thought me inhospitable when I did not regularly drop in on their offices one or two flights below for a coffee break. Such notions of independence thus meant that until my late thirties I omitted many activities which required considerable walking or where my slowness impeded the progress. Specifically, I stopped going on tours, visiting museums, attending large public events, and going with colleagues for a quick lunch. I occasionally mentioned this to my varying orthopaedists and prosthetists. They, in turn, only shook their heads in sad acknowledgement. None of them ever suggested that I use a wheelchair! This only a change in consciousness permitted. And then very reluctantly and only in the last decade! In fact, it is only within the last several years that I have permitted myself the luxury of regularly using wheelchairs in airports. My point is that in living in accord with someone else's definition of physical independence, I for far too long contributed to the demise of my own social and psychological independence.

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The dilemma becomes even clearer with people who only use wheelchairs, particularly those who are forced to use physical means to propel themselves when electronic means are unavailable. I would argue that there are few physical circumstances of which I am aware where the increased physical independence is worth the decreased social and psychological independence. In the rare situation where the physical exercise is essential, I am sure other forms can be created. And where, in the rarer circumstances, a substitute cannot be created, why then not have at least two wheelchairs: one electric and one hand propelled?

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The Independent Living Movement crystallises very well with this issue. Its very philosophy proclaims a new notion of independence. Independence, we claim, is not measured by the mundane physical tasks we can do but by the personal and economic decisions we can make. It is not the quantity of tasks we can perform without assistance but the quality of life we can live with help (DeJong 1983). To retain the old physicalist criteria of independence can only ironically contribute to the very isolatic dependence we clearly seek to avoid.

Assessment -- A Question of Premature Closure
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Sometimes operating assumptions are not so visible as in ideas about independence. Sometimes they are buried in more pragmatic matters such as the way rehabilitation programs assess an individual's physical and mental capabilities. That such assessments may be unduly influenced by historical and cultural considerations was illustrated to me by an experience I had when living at Het Dorp (Zola 1982). If you are unfamiliar with this place, let it suffice to say it is a village in the Netherlands, created specifically to house people with severe physical involvements. People lived there because there were no community alternatives and because no further rehabilitation was possible.

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While the village did have medical services, there was no formal rehabilitation program. And yet, during my stay a few people 'improved' sufficiently to leave the village. While some critics have attributed this to a faulty selection policy, I do not think it was so simple. For many residents, uninhibited by external standards and timetables, were simply able to experiment with new ways of doing things with no cost to themselves. They were able to fail; and when they did, they would try again. And some did until they eventually 'succeeded'. One implication of this observation is that many programs not only give up too early in the rehabilitation process but also have no systematic way of assessing our long-term progress and capability. In fact, most of us with disabilities are never given the chance to learn about new devices.


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Here, again, it is easy to be very concrete. For I am an excellent example; a well educated, rather informed individual, with good health insurance, interested in prevention, a staff member of several local hospitals, and a friend and colleague of many eminent physicians. It has been almost thirty-eight years since my polio and thirty-three since my accident and yet I have never, in the over thirty years since my rehabilitation was 'completed', been called in by any of my orthopaedists or prosthetists for a check-up or to discuss new ways I could do things or new devices I could use. I do not mean, of course, that I have not seen these people but rather that I only did so when something was awry and then, quite naturally, we all focussed on the trouble. Anything new that I do or use today I learn from friends or journals. Now some might argue that this is the road to self-help. I would argue that it is haphazard rehabilitation: a consigning of me and many like me to the 'we have done all we could' category. I am not claiming callousness. I am claiming that there exists a system built on certain assumptions that prevents the rehabilitation world from ever really knowing if it has done all it can.

Safety -- At What Price?
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With such global considerations as a context, I want to examine the effect of similar assumptions on the direct application of rehabilitation technology. An issue of great concern in the design of activities as well as devices for those with disabilities is safety: the protection of the individual from unnecessary harm. While the wish to protect vulnerable people from danger is a worthy goal, it is often achieved at too great a cost. Loring Mandel wrote of this in a play Do Not Go Gently into This Good Night (Mandel, 1967). Melvyn Douglas portrayed a retired cabinet maker who for 'his own good' was placed in a nursing home. His breaking point occurred when the staff refused to allow him to use the available wood working machinery because it was too dangerous. He rebelled. He claimed that he had the right as a human being to run the risk of injuring or losing his finger. Since they disagreed, he quit the home. Most of us are not so fortunate. We do not have the power to quit. The authorities will not let us leave. And we have no place to go.

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There is a body of psychological literature which claims that risk taking is essential to the growth and development of all individuals. Robert Perske summed it up best when he concluded:

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"The world in which we live is not always, safe, secure and predictable. It does not always say 'please' or 'excuse me'. Everyday there is a possibility of being thrown up against a situation where we may have to risk everything, even our lives. This is the REAL world. We must work to develop every human resource within us in order to prepare for these days. To deny any retarded person his fair share of risk experiences is to further cripple him for healthy living. "(Perske 1972, P. 26).

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I spent a day not so long ago With a man with paraplegia who races cars and sometime before that with a man with quadriplegia who was learning how to ski. Both of these are activities I would not have engaged in BEFORE I got polio! Without trying for a moment to denigrate the achievement and courage involved in their doing this, what else I think they are doing is putting some risk back into their lives where so much has been denied them. Hoping there are no police safety officials within hearing, I realise my risk defiance comes from a continual neglect of seat belts and an almost congenital inability to keep to the fifty-five mile per hour speed limit. Given that I travel a lot, I think I am on the way to collecting a speeding ticket in every State.

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In short, if society does not let us have normal risk in our lives, many of us will go to extreme lengths to establish it. Thus, to design an environment or device to prevent any kind of risk may go too far. It may not produce a real life but a mirage of one. There is human dignity in risk. There can be dehumanising indignity in safety.

Doing Too Much Too Technically
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Technology can also do too much for those of us with disabilities. The machines technology creates may achieve such completeness that they rob us of our integrity by making us feel useless. There is an example of this in a very different area but it has relevance here. Many years ago when the 'convenience food' business was in its most expansive phase, the manufacturers discovered that where cake mixes were concerned, they had gone too far. Early in their marketing all the ingredients were included. All one needed to do was to add water, stir and then bake; the same formula that worked so successfully with soups. But there was customer resistance and sales faltered. Their market research teams went to work and soon they discovered that cake making contained some important elements that differed from soup preparation. Baking had more intimate connotations; it had associations with being 'fresh' and even 'special'. As a result, the manufacturers quickly altered their strategy. They not only instructed the customer to add fresh eggs but on the sides of the box they gave hints on how to improve the recipe; how to make it more special, more one's own.


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I believe a similar phenomenon is occurring with device use. I have noticed that many disabled persons have invented an addition to their appliance or altered its use to suit their purposes. For years I thought this was merely our way of correcting the faults of our prostheses. But now I think something more is at stake. For decades, my own leg brace has not fitted properly. No matter what they do, there seems to be one place where within twenty-four hours a pressure sore will be produced. It is, however, a problem which I have solved by creating a special patch which I place over the spot every day. It is clear I have a certain pride in solving something the professionals could not. But I have also done something else. I have made the brace more a part of me because I have given it my own unique stamp. Now again, I am not arguing that the rehabilitation world should stop inventing devices that we need, particularly when we ask for them. But, rather, that whatever the device, it need not do everything. It may even be worthwhile to encourage us to create things that not only service us better but make it more our own.

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There are other even more subtle ways in which the use of technology has and is going too far; where our very integrity is at stake. There is very little understanding of what happens when bodily parts and functions are replaced by equipment. It is not an unmixed blessing. It has been found in regard to transplants and skin grafts, that the physiological body rejects parts which it feels are alien. So, too, the psychosocial person rejects parts which he or she feels are alien. The problems escalate the closer the appliance gets to the human body. Thus it is not at all clear what it means to have as part of one's daily routine the putting on of braces and the strapping on of prosthetic limbs. The adjustment may become more serious, if not psychosis- producing, when we become internally attached and thus dependent on machines; from the insertion of pacemakers to the attachment of the kidney dialysis machine.

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I am not, of course, arguing for the elimination of all such mechanical aides but merely that those who use them may neither be as proud nor as grateful as the inventors think they should be. For these appliances alter a sense of self so profoundly as to make the now liveable life not worth living.

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There may be a similar problem in the over technicalisation of 'care' such as in the invention of robots or the training of chimpanzees to service, dress and feed people with quadriplegia. While it might well be cute when one's favourite pet brings in the newspaper or, in rare instances, one's slippers, it is less cute when these involve more intimate tasks. I realise that part of the appeal of machines and animals is because of the intimacy which it may be perceived easier to share. But there may be a long term loss of this short term gain. I did not accidentally use the term 'care' when I introduced this thought.

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According to Webster's dictionary 'care' involves:

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"painstaking or watchful attention
regard coming from desire or esteem
a person that is an object of attention, anxiety or solicitude"

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My point is a simple one -- that care, as in the terms 'medical care' or 'personal care' is not merely a technical task. On the contrary, it involves quite personal aspects. To thus objectify this care into a technical service, to replace the human element with a mechanical or animal one, can only lead to the further objectication -sic- of the individual receiving that service.

In Conclusion
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It is in the nature of this historical moment that the encounter between health care providers and persons with disabilities inevitably have elements of a confrontation. In previous times when we have disagreed, felt abandoned or misunderstood, we have always had a recourse, but it was essentially a passive one: non compliance. Now that is changing. Words that were once used only for rhetorical effect -- like 'negotiation'-- have become real, if not legal, parts of practioner-patient -sic- relationships. The world of people with disabilities has begun to find voice. Occasionally that voice is harsh and strident. If so, it is because it has been a long time in coming; and in order to be heard, there is often a feeling we have to shout. Jay Katz, a professor of psychoanalysis as well as law, has noted that the reluctance of doctors to share information and converse meaningfully with patients has a 2000 year history (Katz 1984). While this means that the changes that do come will come slowly, it does not mean that we can wait for it to happen. For if we do, we will find ourselves living out a 1960s cliche: if we are not part of the solution, we are part of the problem.

References
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Boston Women's Health Book Collective, (1985), The New Our Bodies Ourselves, Simon & Schuster, New York.

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Crewe, N. and Zola, I. K. (eds) (1983), Independent Living for Physically Disabled People, Jossey-Bass Inc., San Francisco, CA.


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de Jong, G. (1983). 'Defining and Implementing the Independent, Living Concept,' in Crew and Zola, pp, 4-28.

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Mandel, L., 1967, Do Not Go Gently into this Good Night, Plaz.

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Katz, J. (1984), The Silent World Of Doctors and Patients, The Free Press, New York, NY.

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Zola, I. K. (1982), Missing Pieces: A Chronicle of Living With a Disability, Temple University Press, Philadelphia, PA.

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