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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


A number of years ago I lived in a place in the Netherlands called Het Dorp (Zola 1982). This was a village specifically created for people with severe physical disabilities and chronic diseases. When I lived there almost every villager agreed that the six aims of the founders: to guarantee every inhabitant the right to privacy; work; recreation; religion; culture; and self-governance were, if not solved, at least being worked on seriously. Yet these 'six building blocks of happiness' were just that, building-blocks, a foundation which awaited an edifice. Ironically, the satisfaction of these basic needs did not so much make us thankful for what we had been given but provided us the time and opportunity to be aware of what we had lost; emotional needs that seemed to have been taken away, or never granted. As a result, those of us with a disability necessarily spend much of our time in a continuing effort to reclaim what we have lost: the right to act sexy, get angry, be vulnerable, and have possibilities. These basic needs do not seem like the kind of things that one person can give to another, but they are needs whose satisfaction the rest of society has helped impede and deny. It is the fact as well as the implications of this I wish to illuminate in this talk.

On Being Sexy

I probably need to say the least about sexuality. Sexuality is one of the first things 'to go' when one becomes ill, and its return, often framed in standard jokes, supposedly indicates recovery. Much is made of sickness being a period of social withdrawal, when one feels less attractive and less interested in sex. And when one becomes permanently disabled, the attractiveness, the ability and the interest to engage in sex are often regarded as similarly impaired.


More and more I realise that this is true only as long as sex is associated exclusively with youth and physical attractiveness. Our society does not like to picture people who are weak, sick, and even dying, having needs for sexual intimacy. It is regarded as unseemly. Such people are thought to have better things to do with their time than holding or being held. Yet my personal experience and professional observation has taught me to distrust this notion. The desire I believe is always there but it is shunted aside, suppressed by fear. We do not express or even show our wishes because we have learned that in our condition of disablement or disfigurement no one could (or should) find us sexually attractive.


I need to take a brief aside here about what 'should' be. Several years ago I was consulting with a sexuality and disability counselling program, and the staff were discussing a project of sexual experimentation in Sweden. It involved able-bodied counsellors being sexually involved with people with severe disabilities. It was ultimately discontinued; not because of the experimentation, nor because of any lack of success but because it was found that many of the counsellors were enjoying themselves. They actually began to find these very physically disabled people attractive and that was regarded as shocking if not sick.


To return to my original point those with a physical disability withdraw or deny the need for intimate contact not through lack of desire but fear of rejection. A self-fulfilling prophecy has thus been created.


Still another dilemma in dealing with sexuality amongst the disabled is a certain male and culture-boundedness in thinking. Thus it seems that the existence of sexuality is either denied entirely or if recognised is located entirely in the genitals: and the male genitals at that. What society in general and the rehabilitation literature in particular seem to have focused on is sex as capacity and technique. Thus if the researchers are not counting the marriage and divorce rates, or the number of children, they are measuring the number, frequency and type of orgasm. And where those with a chronic disability are concerned the research and clinical efforts are on compensatory techniques, ways to stimulate or simulate ejaculations and erections, ways to reclaim some lost or weakened ability. And while I agree that sex involves many skills, it seems to be foolish and limited to focus on one organ, one ability, one sensation to the neglect and exclusion of all others. Sex and loving can surely involve the genitals and what is euphemistically called penetration. But we can also touch, show, and experience love in our fingers, hands, feet, tongues, lips, eyes and ears and words.


The loss of bodily sensation and function associated with many disorders, and its replacement with a physical as well as psychological numbness has made sexuality a natural place to begin the process of reclaiming some of one's self-hood. But as the self is located in no single place, neither is sexuality.

On Getting Angry

The dilemma of anger for those with a disability was summed up best by a friend of mine. For months, she had what she called 'weak spells' and then she learned that the condition would be permanent, that she had indeed a debilitating progressive disorder. While there were many things about this that bothered her, one in particular stuck in her throat: 'Now that I've got this problem I just can't afford to be angry with anyone. I need them too much'. And so began with her, and with many others, a lengthy process of learning to be nice in the face of one after another upsetting events.


Now while this may have roots in certain Judaeo-Christian values, it has certainly been made an essential personality ingredient of many people with chronic disabilities. For most of contemporary history, to be a complainer in the hospital (or doctor's office) was a road that led nowhere. In a sense we were taught that we had no right to complain; everything that could be done was being done. Everyone was busy and overworked and besides: 'Weren't we grateful?'. This gratitude has been our curse. In the first place, being sick made us by definition so dependent that any expression of dissatisfaction became a threat to the continued care which we could not easily get elsewhere. And in the second place, our anger was regarded as inappropriate because it indicated we were not sufficiently 'grateful' for all that was being done for us.


The idea of suppressing one's anger has still another social function as seen in the cliched consolation: 'Be grateful for what you've got. Look at all those who are worse off than you.' The words are as frequent as the lack of solace they provide. My observation is that such 'consolations' most typically occurred when someone was feeling 'down' about their condition and expressed this rather depressingly to someone who did not have any obvious physical 'difficulty'. The inevitable reply was intended to have a reassuring effect, but it was, in fact, far more effective as a 'silencer'. Passed off as an attempt to prevent us from 'wallowing in self pity', its real function may have been to protect the listener. Making us look at those 'worse-off' than us rather than those 'better-off' preventing us from being envious and even resentful of our able-bodied friends. For they were the ones we wanted to shout at for having what we didn't have and being so smug about it, for not knowing what it's like and not letting us explain.


Whatever else this process produces, it cannot help but be detrimental. On the one hand, it deprives us of an almost universal need -- the need if not the right -- to be angry. Some of the more common expressions of sublimated anger are not open to us. Often we do not have the physical strength to hit a pillow or kick a chair. And when we use what we have at our disposal, we are either condemned or run unusual risks. When a friend became so frustrated at his wife's behaviour that he rammed his wheelchair into a wall, the hospital staff labelled him self-destructive. Someone with the complications of diabetic retinopathy cannot swing their arms for fear of haemorrhaging. To these can be added the countless other people who because of their disorder have been warned by their physician not to exert themselves, not to worry too much, or not to get too excited. In short, they are instructed not to feel anything too intensely; especially anger.


Thus, with virtually no acceptable avenues for expression, those with a chronic disability are forced either to turn their anger in on themselves or to blunt it. To the degree that we succeed in the latter we become increasingly unfeeling, and often so distanced from ourselves that virtually nothing can touch us. In this way we provide the basis for the stereotype in the professional literature which describes us as 'difficult to reach'. If, on the other hand, we turn the anger inward, it is likely to take the form of depression. Is it thus any wonder that study after study document the high degree of depression among those with a chronic disability? This depressed state is not merely a primary reaction to our losses, our dependency, our sickness, and thus something for us 'to realistically come to grips with,' it is every bit as much a socially induced defense, the result of our enforced inability to express anger. Society's gain by this process is straight-forward. Since depression is considered the result of one's inadequate adaptation and resources, it can be more easily ignored as the individual's problem. Anger, on the other hand, whatever its cause, has an outward expression and direction. As such it at very least demands involvement if not response.


For those with a disability, the issue of anger goes, however, beyond the ability to express it. While it may be more blessed to give than to, receive, where anger is concerned the two go hand in hand. If we are to be encouraged to be angry at things that bother us, then we must also be prepared to receive anger if we bother someone else. Though such a statement seems perfectly obvious, its daily application is not. And through the years I have grown aware that people are very wary about being openly angry or critical of someone with a disability. And yet one of the greatest putdowns one person can inflict on another (as the feminist movement has pointed out) is contained in the phrase: 'I'm afraid that you won't be able to take it'. Since all of us have done things to upset others, to be denied their resentment is to be taken unseriously and to be deemed unworthy of response, to make the provoking action almost unreal.


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.


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.


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

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.


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.


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.


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.


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