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February 2001

Zen and the Art of Wheelchair Maintenance
By Jen Longshaw

A civilized society can be judged by the way it treats its weakest citizens and when it's most vulnerable members are the disabled then even more so. So why is it that the very people put in charge of supplying care to that sector of the community are often the worst possible choices?

There seems to be several types of disability worker. Firstly there is the person who has a barely concealed dislike of those with a physical disability. Often they are found in positions of power within Government agencies, organizations for the disabled and the medical professions. There is the caseworker that cuts your Government benefit for no good reason and won't explain why, who wants you to come in for an appointment when they know that you have no transport, who will tell you have multiple bank accounts when you've actually got an overdraft. This person has the power to make your life a living hell. They can remove your income at a whim, refuse you medical help and can even smash your self-esteem.

There is the occupational therapist that refuses to allow a house to be adapted for a wheelchair. In one particularly harrowing case a paraplegic woman was left in an inaccessible house for six years. The doorways were too narrow for her to manoeuvre her wheelchair through and she could not even get into the toilet. She had to lay rubber sheeting on her bed and defecate on this before disposing of it in her laundry. Not surprisingly she developed Hepatitis B. She was unable to go outside by herself as a ramp hadn't been built. Her case was constantly "under review" by the Department of Social Welfare. In the end a national current affairs programme filmed her daily struggles. The outcry after this programme aired was so great that the long-awaited improvements to her home were undertaken within a week. When questioned about her case the Government Minister in charge remarked that she had "slipped through the cracks in the system" and that she really should have contacted them first before talking to the media. But she had been asking them for help -for six years!

The second type of disability worker is the medical/political animal. They usually are to be found in disability organizations trying to run everything although on closer acquaintance they will tell you that they're not actually interested in "touch feely support groups". Often they have no interest in the very people they're meant to be helping. In the medical professions they see their patients as "interesting conditions" rather than as a human being with feelings. They categorize them into a collection of symptoms to be observed rather than actually talking to them and trying to understand what they're going through. In the nursing profession this sometimes leads to cases of cruelty such as a nurse refusing pain medication to a paraplegic patient because she felt they weren't in as much pain as they were making out because "paraplegics don't feel anything".

The third type of disability worker is the one who actually feels they have a calling. They have spent four years studying and obtained their degree. Unfortunately they come across as very patronizing. They are always right and always have an answer. The answer usually is that they have spent four years studying the disabled and know what they're talking about! When their clients try to put across their point of view they reply with their standard "yes but..." which infers that yes you've got an opinion but their point of view is actually the right one. They also take pleasure in informing the public at large how much they enjoy working with the "physically challenged". Unfortunately they never realize that the disabled actually don't enjoy working with them! In fact if they had spent one year in a wheelchair instead of four years reading about it then they might truly know what it was all about.

Why then do these obviously unsuitable individuals enter the disability field? Especially as they often seem to demonstrate no genuine interest in helping their "clients". The answer is these people like to control and to achieve a position of importance. When someone is physically or financially weaker than you then this is much easier to do. Also the public are often only too happy to have these people undertake what can be seen as a difficult and emotionally charged job. There is an undercurrent of fear amongst the able-bodied with regard to anyone with a disability. The fear is that it could have been them. This says a great deal about the general attitude to the disabled, that they are somehow regarded as lesser than their healthy compatriots.

In his book "Declarations of Independence: War Zones and Wheelchairs" John Hockenberry describes his experiences from the automobile accident which paralyzed him at 21 through to his work as a reporter in the Gulf War. He raises an interesting thought. Of all the places he travelled to he found the greatest acceptance in the Middle East. People were only too willing to help and treated him as just another person who happened to use a wheelchair. Why was it that he felt more accepted and validated in a Third World economy? The fact is that living in a wheelchair is like living in the Third World. You never know what each day will bring and in its way each day is a struggle both physically and mentally. Living with the daily threat of war and in physically trying conditions the people of the Middle Eastern countries had developed a compassionate attitude to those they saw as fighting their own private war. In this regard they were far and away more "developed" than their First World cousins.

The world doesn't owe the disabled a living. What it does owe them is the freedom to explore their own individuality without constantly fighting "the system". Political correctness has abolished the outward signs of discrimination but underneath the same attitudes prevail. What the law has done has been to wallpaper over a crumbling wall. Everyone in the world deserves the same right: that is the right to a life of dignity.

Jen Longshaw  flopsy@ihug.co.nz


Copyright Jen Longshaw  this article may not be resold, reprinted or redistributed in any manner, print or online, without prior written permission of the author.  Reproduced in Paralinks with the expressed consent and approval of  the author.

From New Zealand or "Aotearoa" (the Land of the Long White Cloud) where men are men and the sheep get nervous, comes a collection of eclectic writing about animals, art, cruelty to food and the just plain bizarre. Jen's Web Site: Art, Animals & Anarchy


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