Life as no. 17: Issues of life

Camilleri, J.M (1998): Bioethical issues: a personal experience. A presentation delivered at one-day seminar organised by the Bioethics Consultative Committee. Friday, 11th December, 1998, at the.

Introduction

The ethical concerns which confront us daily, and here I do not just mean persons with disability, have become so numerous and complex that it would be presumptuous and futile were I to attempt to catalogue them comprehensively. Instead, I propose to focus on a few central issues which are of particular concern to persons with a permanent disability as well as their closest relatives and friends and look at these from a personal perspective.

No matter which area we may be deliberating I strongly believe that the decisions that we make in time of crisis are very strongly influenced by these elements:
· the centrality of the individual, which should override medical and economic concerns;
· the quality of life of that person, not necessarily as defined by medical professionals;
· the provision of adequate services which foster individual choice and empowerment.


Life as Number 17

Throughout our lives, disabled people, struggle to come to terms not so much with the concrete consequences of physical and intellectual impairments and with medical interventions, but with the sociological, cultural, religious assumptions which underpin the way other people look at us and especially at the way these same people have shaped, or attempted to shape, our lives.

For I believe that many of the negative aspects which we have come to associate with biomedical issues stem from a distorted view of one human being by another. They stem from notions of value, of responsibility, of choice and of who is valued, responsible, 'qualified' to make choices. I contend that these notions are not absolutes, but vary from culture to culture and from individual to individual.

"The invalid is a parasite on society. In a certain state it is indecent to go on living. To vegetate on in cowardly dependence on physicians and medicaments after the meaning of life, the right to life, has been lost ought to entail the profound contempt of society." (Nietzsche, Friedrich: 1844-1900)

Being labelled 'handicapped', 'impaired', 'less fortunate' in our society has, at different parts of my life, led to feelings of shame, sinfulness, diminishment, dehumanisation; that I was a abhorrent 'freak' of nature, a burden on the people who love me.

Too often in my experience, the reality of 'I' as an individual has played a poor second to the more interesting reality of my impairments. I speak from experience when I say that for forty-three years, whenever I have had to deal with professionals of any description, I have found my Self being systematically sidelined, while engaging discourses over my real, or perceived, impairments take precedence.

Over the years my body, and less frequently my mind, have been probed, pummelled, penetrated, exhibited and discussed as if I were not there. I need hardly add that assessments generally find me insufficient, incomplete --- incompetent. I always feel that I reached the nadir when, at the age of 21 I was hospitalised here at St. Luke's for two and half months, and during that time I was officially identified as number 17!

The point I am labouring to make, and which must be obvious by now, is that the way we look at our fellow human beings influences all our expectations and decisions concerning them. Because we love and cherish all those who are dear to us, we hold them in high esteem and will move mountains to ensure that they enjoy the highest quality of life possible, for as long as possible. Whereas, the moment a person ceases to be an individual and becomes a number, our perception of that person is instantly devalued and our conduct towards them is adjusted, usually for the worse.

When the individual as a persons becomes subsumed beneath the individual statistic, other concerns tend to take precedence and decisions are also made on assumptions which do not place the person first. Thus, concerns of the availability of scarce resources come to the for and may distort our assessment of a situation leading us to make a decision which may favour immediate concerns, while sacrificing those of the individual concerned.

Quality of Life? What quality of life!

A major bone of contention of many disability rights groups is that our quality of life is often defined by people who are not themselves disabled. These people see us collectively as people whose lives are tragic, blighted, degraded, and undesirable.

Perhaps you will not be surprised if I tell you the story of a very dear friend of mine, who, in the early days of our friendship, declared that if he were in my position he would have stuck his head in the oven and turned on the gas long ago. I replied that of course I had tried that, but that sadly it turned out to be an electric oven!

Clearly, my friend was assessing my situation from his own vantage point. One which focused exclusively on aspects of acute, chronic pain, stiffness, physical deformity, social prejudice, and all the other negatives which we associate with permanent disability. On the other hand he failed to take into account the human individual's ability to adapt to different situations and to develop different coping mechanisms. After twenty-two years of disability I had learnt that the life is very much like a multi-faceted diamond and that our perceptions of it very much depend on which way the light is shining. What seems colourless from one angle, is a kaleidoscope of hues from another.

No matter how highly qualified the person is, s/he is never in a position to make definitive predictions about my quality of life. Such issues are arrived at only after long and serious deliberation by all the parties concerned and by careful, sensitive negotiation. Disabled persons first and foremost, their loved ones and sensitive professionals must enter into a meaningful dialogue, free of issues of control and status, and attempt to arrive at a consensus. It would be criminally simplistic to suggest that this is an easy course of action, but I contend that it is the only ethical course of action and the one which we must strive towards.

Service provision: towards a better quality of life

I have often said that the medical profession has saved my life on more than one occasion, but no professional has ever given me a reason for living. All too often, people who have just come out of medical crisis and who are only just beginning to experience the psychological turmoil of having to adapt to a different manner of life are left to their own devices, are, dare I say it, abandoned by the system. A system which is too often only geared to deal with the physical aspects of trauma.

This was my experience in 1973, when at the symbolic age of 21 I experienced a major, life-threatening trauma on both a physical and metaphysical plane. While the best physicians on the island massed ranks to save my life, the prospect of a lifetime of meaningless existence still stared me in the face. At that time it was my fear of death, more than my love of life which kept me going.

The irony is this, that twenty-five years ago I would seriously have considered euthanasia, but today, in spite of a deteriorating physical condition and an increase in pain, nothing could be further from my mind. Of course in the intervening twenty-five years my quality of life has improved tremendously. And it is my quality of life, not my the nature and degree of my impairment which tends to influence my personal bioethical decisions.

That is why disabled persons around the world insist that governments have a moral duty to provide the highest quality services, which must be based on the right of the individual to choose. Such services must include:
· counselling (especially peer counselling);
· good short and long-term management of chronic conditions, especially where chronic pain;
· independent living provisions (particularly that life choices must be made by the individual, not professionals).

Conclusion

We have just been through the experience of the Week of Persons with Disability a time when we took a critical, reflective look at what it means to experience the world as a disabled person. Significantly, this year's slogan emphasised the centrality of the PERSON in any issue concerning disability.

Any issue concerning manifestly vulnerable people is going to assume monumental proportions; bioethics is no different. The old truism is very apt in this context: 'there are no easy solutions". Every aspect of disability is fraught with peril and contention. However, I firmly believe that no matter what decisions are taken these should be based on an unshakeable respect for the human being in question, i.e., the PERSON.

The individual and professional have to enter into a partnership based on mutual respect and equality of power. I cannot accept a situation where professionals assume superiority by virtue of their paper qualifications. There is nothing worse than the anguish of extreme pain and being augmented by the insult of being patronised, talked down to, possibly ignored and finally devalued to the extent where decisions are taken completely out of one's hands.

I have not come here today to offer solutions --- there are none. There is only a constant striving after our own humanity and the humanity of others. There is only the difficult struggle to maintain life and quality of life in the most trying and ephemeral of circumstances. There is no meting out of blame but a recognition of our mutual fallibility. Ultimately, regardless of the outcome, it is the quality of the motivation behind the decision that confers honour on both the giver and receiver: that must remain our sole point of reference.

_________________________________________________