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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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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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