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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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Freeing oneself from a 'warehousing' or physicalist perspective is not easy. Like the Women's Movement, we, too, find ourselves railing against the assumption that 'Anatomy is Destiny' and the consequent perspective which traps us into some roles and excludes us from others. On the other hand, the seductiveness of the 'everything is possible horticultural' mode can be equally entrapping. Any message that implies that with sufficient effort there is no physical problem that could not be overcome is not, however, 'the curse' I seek when I ask for 'possibilities'. To be always held up to some arbitrary overoptimum standard can only be more depressing when one can't make it, or when once achieved, one can never give it up. Just because an individual can do something physical does not mean that he or she should. While for some people it might be very important, if not essential to their self-image, to spend two hours dressing by themselves or several more writing a single-page letter, many would just as soon spend their time and energy elsewhere. By spending so much time and energy on basic tasks, we eliminate the possibility of even realizing other possibilities. Most tritely, we find ourselves too tired to think and, thus, in a sense to live more fully. What is often misunderstood is that this is by no means an individual decision, but one again where many of us feel we are living up to someone else's ideals. No matter that for many an external monitor is absent, the socialization process has taken, the message has been internalized.

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Thus, to emphasize the individual personal qualities as the reasons for success in overcoming difficulties (and the reason for failure if the barriers prove insurmountable) is self-serving for the individual and the society. For individuals who have lost so much it rewards us at a cost of making us ignore not only what we owe to those who helped us but also what we share with those who did not make it. To the society this emphasis merely allows the further disavowal of any responsibility, and more important, any accountability for the process which makes a chronically disabled person's entry or re-entry into life so difficult. Were my family poorer and less pushy, my friends fewer and less caring, my champions less willing to fight the system, then all my personal qualities and strengths would have been for naught. On the other hand, if we lived in a less healthist, capitalist and hierarchial society which spent less time finding ways to exclude and disenfranchise people and more ways to include and enhance the potentialities of everyone, then there wouldn't have been so much for me to overcome (Zola 1977).

In Conclusion
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Two words summarize what faces an individual with a disability. Infantilization is the process. Invalidation is the result. Having an illness calls forth in feelings, behaviour and even treatment, a state of dependency most characteristic of children. When the temporary acute state becomes permanent, then too, unfortunately, do the child-like qualities inherent in the role. But even more than the necessities of being 'dependent' do this. In a society which frowns not only on being dependent but also upon being nurturant to one's peers, the able-bodied has only one sanctioned model for making both her/him-self, and the person needing help, psychologically comfortable: the model of the 'well parent' and the 'sick child'. It is, thus, a two-sided bind. Only children can continually demand help, and only parents can be continually expected to give it. Thus, in recognizing our needs for dependence and nurturance we take the only roles open to us.

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The process of infantilization is, however, not only in the roles but in the content. Parents usually set limits on both their children's physical activity and their emotional expression. In particular, parents deny children their sexuality, anger, and vulnerability (i.e. we tell them not to be a cry-baby, etc.) and put limits on their potentiality (i.e. the parents and the society determine when they are ready to engage in certain activities). But for children there is, theoretically, a time limit. When society engages in the same process with adults, the infantilization inevitably leads to invalidation.

References
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Miller, E. S. and Gynne, G. V. (1972), A Life Apart - A Study of Residential Institutions for the Physically Handicapped and the Young Chronic Sick, Tavisstock Publications, London.

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Zola, 1. K. (1977), 'Healthism and disabling medicalization', in I. Illich, I. K. Zola, J. McKnight, H. Shaiken, Disabling Professions, Marion Boyars, London, pp. 41-67.

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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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