Audrey King, M.A., is an internationally known writer, speaker, and advocate on disability issues. A trained rehabilitation psychologist she is the author of two books, Count Me In (1985) and There's Lint in Your Belly Button (1987), both of which focus on integration of persons with disabilities in society. Ms King has been using ventilator, electric wheelchair and personal assistance since 1952.
Ask the man in the street what he knows or thinks about people who use ventilators. Chances are he'll tell you they're brain-damaged, vegetative, "ill" or dying, just bodies being kept alive at great expense to society. How wrong he is! What the man in the street doesn't know is that although the phrase "on a ventilator" does conjure up the hopeless images just described, we're really talking about a wide range of scenarios.
We do indeed have ill or dying patients, those who are comatose, the seriously injured, all of whom require intensive hospitalization and skilled medical care. But, we also have ventilator users who are medically stable, mentally alert, ambitious and desperately eager to live life's goals with as much independence and control over their own lives as possible. Typically, they have lived with their disability for some time and are knowledgeable and competent with respect to their own needs and equipment.
The problem that prevents such individuals from achieving independence and control, from living their own "self-directed" lives within their own communities, lies not within the ventilator dependent person but overwhelmingly within the attitudinal and physical environments in which they live.
Consider the astronaut, for example. When you think about it you realize he is in fact, severely disabled. He cannot walk properly unless he wears special boots to keep his feet on the ground in that weightless outer space environment. He can't feed himself unless he learns to coordinate his hand to mouth movements. He requires specially prepared food. Nobody talks about his bowel and bladder needs but it's difficult to imagine how he could possibly cope without some special kind of clever collecting device! The astronaut can't even sustain his body's need for oxygen. He requires "life support" systems for his very survival.
Yet, who would label an astronaut "disabled", "deficient", or in need of intensive medical attention? Society doesn't see his or her significant physical incapacities as "problems" that need to be fixed. Assumptions of helplessness, inability, incompetence, or needing to be "cared for" never exist. In fact, it's the opposite! Rigorous training and expectations to carry onerous responsibility in carrying out complex and demanding outer space tasks are the norm. Astronauts are "heroes".
It's the environment, the "moon" that is deemed to be the problem, never the astronauts' deficiencies. His or her environment is perceived as hostile, alien, incompatible with life and definitely not accommodating to the astronaut's physiological requirements. So, at enormous expense and billions of tax dollars, assistive devices are created to enable that astronaut's physical and physiological needs to be "accommodated" so he can function, stay alive and breathe in that unfriendly world.
And so, it would seem that meeting the needs of "disabled" earth bound humans, whose unique physical requirements make it difficult to live and function in an everyday world, depends largely on society's values and perception. A person's physical abilities often cannot be changed, but the attitudinal and physical environment in which they live certainly can.
by: Audrey King, 14 March 2006
Audrey King, Toronto