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Four Steps On The Road To Invalidity: The Denial Of Sexuality, Anger, Vulnerability And Potentiality

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

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It is thus that a full circle of anger-denial is completed. On the one hand, those of us with a disability are unable to express our anger and on the other we are protected from seeing why anyone might be angry at us. What was originally fostered by our physical and medical dependency has ultimately been translated and reinforced as a modus vivendi for our social dependency.

On Feeling Vulnerable

Of all the emotional qualities I have dealt with, vulnerability is, perhaps, the hardest in which to find some path between denial and 'narcissistic self-indulgence' or what is more commonly called 'self-pity'. There is an almost instinctual drive towards narcissism in all of us which is, in many ways, curtailed by society. For those who have a disability, this drive is difficult to resist. In the physiological state of having an illness, our body cries out for attention. In the social position of having an illness we are deprived of all our usual sources of action, distraction, and entertainment. Both situations force us even more into ourselves. The usual sterile environment of long-term 'care' institutions further exacerbate this tendency. All of these features might seem to demand strictures against the focussing on one's weaknesses. And yet I suspect that these tendencies become problems precisely because society allows for little, if any, admission of vulnerability. The strictures against crying, particularly for males is a prime example. The fear is that once started, it, like self-pity, will never stop. My own observation is that those people with an over-supply of tears are the ones who have been unable to mourn their losses fully, especially when they first occurred. As a result, they 'leak' and mourn a little bit all of the time.


Most of us are shut off from our losses prematurely. We are pushed to get on with the future and forget what is past or left behind. To mark the generally recognized losses and transitions, there are, however, at least ceremonial rituals; from divorce proceedings to retirement parties, from funerals to wakes. Moreover, specific 'mourning' periods are set aside; from specified times during which one cannot remarry after a divorce or death to the daily ritual kaddish said for a year by the orthodox Jewish male. Though many of these ceremonies have become attenuated, at least the forms exist. A chronic disease or disability, whatever else it may mean, also constitutes a loss -- of time, of capacity, of function, of appearance -- and as such it has to be acknowledged and mourned before it, too, can be put aside. In a logical way the mourning may also not be a once and forever thing, for unlike the departure of a person whose loss we may only occasionally be reminded of, the physical loss of a function or bodily part is with us all the time. Our braces, limps, drugs, weaknesses are a constant reminder. From this perspective it may be remarkable that we are not 'crying' all the time.


In short, if those of us with disabilities are not made 'sick' by the loss, we surely are by the ways we are forced to deal with it. The current approaches make us lose perspective. With little opportunity to confront our realities, we find ourselves thought of as distant because we refuse to acknowledge our big problems, or cry-babies because we dwell so much on the small ones. Yet this is the very trap we are forced into by a society which neither acknowledges our losses nor our need to express them. And without this, all are losers: we for not being able to clarify our needs and the society for not being able to hear them.

On Having Possibilities

The issue of potentiality epitomizes the 'damned-if you do, damned if you don't' dilemmas often facing those with a chronic condition. In trying to plan our lives, we are either pushed to regard our physical difficulty as the all-encompassing touchstone or to claim that we are just like everyone else, needing and wanting no special consideration. These alternatives are paralleled by two social defence mechanisms, what Miller and Gynne (1972) have called the 'warehousing' and 'horticultural' modes. In a sense, society uses both approaches at the same time. The 'warehousing' perspective, where the individual is seen permanently 'in need' of help is the prevalent mode in most institutional and interpersonal arrangements facing the disabled. The 'horticultural' model of 'unlimited' possibilities is the standard by which people are measured before society gives up and 'warehouses' them. Though one may appear conservative and one liberal, both have a history and result detrimental to those with a disability.


The 'warehousing' perspective develops out of the view that the lives of people with a disability are entirely determined by their physical condition. Much of this view is rooted in a certain reality. Our early lives as 'chronically disabled' are essentially spent under medical supervision if not medical dominion. For the most part our conditions are known and our physical dependence, be it on medicines, prostheses or people, obvious. This is a reality so overpowering, so visible, so continually confronting that it is difficult to resist. Still weakened by our physical condition we find ourselves the recipients of rehabilitation programs where further assumptions are perpetuated about our abilities and our best interests. This trend is exacerbated by the fact that most programs operate within a medical perspective: a perspective in which the giver of help and the recipient are most distant from one another and where the latter must place oneself completely in the hands of the former with few if any questions permitted. Finally, medicine is a very pragmatic applied science focussing very heavily on practicalities. As a result, there is a push to focus more on the practical possibilities of our limitations than the unknown potentialities of our strengths.

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