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I believe a similar phenomenon is occurring with device use. I have noticed that many disabled persons have invented an addition to their appliance or altered its use to suit their purposes. For years I thought this was merely our way of correcting the faults of our prostheses. But now I think something more is at stake. For decades, my own leg brace has not fitted properly. No matter what they do, there seems to be one place where within twenty-four hours a pressure sore will be produced. It is, however, a problem which I have solved by creating a special patch which I place over the spot every day. It is clear I have a certain pride in solving something the professionals could not. But I have also done something else. I have made the brace more a part of me because I have given it my own unique stamp. Now again, I am not arguing that the rehabilitation world should stop inventing devices that we need, particularly when we ask for them. But, rather, that whatever the device, it need not do everything. It may even be worthwhile to encourage us to create things that not only service us better but make it more our own.

There are other even more subtle ways in which the use of technology has and is going too far; where our very integrity is at stake. There is very little understanding of what happens when bodily parts and functions are replaced by equipment. It is not an unmixed blessing. It has been found in regard to transplants and skin grafts, that the physiological body rejects parts which it feels are alien. So, too, the psychosocial person rejects parts which he or she feels are alien. The problems escalate the closer the appliance gets to the human body. Thus it is not at all clear what it means to have as part of one's daily routine the putting on of braces and the strapping on of prosthetic limbs. The adjustment may become more serious, if not psychosis- producing, when we become internally attached and thus dependent on machines; from the insertion of pacemakers to the attachment of the kidney dialysis machine.

I am not, of course, arguing for the elimination of all such mechanical aides but merely that those who use them may neither be as proud nor as grateful as the inventors think they should be. For these appliances alter a sense of self so profoundly as to make the now liveable life not worth living.

There may be a similar problem in the over technicalisation of 'care' such as in the invention of robots or the training of chimpanzees to service, dress and feed people with quadriplegia. While it might well be cute when one's favourite pet brings in the newspaper or, in rare instances, one's slippers, it is less cute when these involve more intimate tasks. I realise that part of the appeal of machines and animals is because of the intimacy which it may be perceived easier to share. But there may be a long term loss of this short term gain. I did not accidentally use the term 'care' when I introduced this thought.

According to Webster's dictionary 'care' involves:

"painstaking or watchful attention
regard coming from desire or esteem
a person that is an object of attention, anxiety or solicitude"

My point is a simple one -- that care, as in the terms 'medical care' or 'personal care' is not merely a technical task. On the contrary, it involves quite personal aspects. To thus objectify this care into a technical service, to replace the human element with a mechanical or animal one, can only lead to the further objectication -sic- of the individual receiving that service.

It is in the nature of this historical moment that the encounter between health care providers and persons with disabilities inevitably have elements of a confrontation. In previous times when we have disagreed, felt abandoned or misunderstood, we have always had a recourse, but it was essentially a passive one: non compliance. Now that is changing. Words that were once used only for rhetorical effect -- like 'negotiation'-- have become real, if not legal, parts of practioner-patient -sic- relationships. The world of people with disabilities has begun to find voice. Occasionally that voice is harsh and strident. If so, it is because it has been a long time in coming; and in order to be heard, there is often a feeling we have to shout. Jay Katz, a professor of psychoanalysis as well as law, has noted that the reluctance of doctors to share information and converse meaningfully with patients has a 2000 year history (Katz 1984). While this means that the changes that do come will come slowly, it does not mean that we can wait for it to happen. For if we do, we will find ourselves living out a 1960s cliche: if we are not part of the solution, we are part of the problem.

Boston Women's Health Book Collective, (1985), The New Our Bodies Ourselves, Simon & Schuster, New York.

Crewe, N. and Zola, I. K. (eds) (1983), Independent Living for Physically Disabled People, Jossey-Bass Inc., San Francisco, CA.