Tuesday, October 9, 2007

The sum of my parts

There has been a news story getting some coverage in Nova Scotia lately about a 21-year-old man with significant developmental and physical disabilities receiving treatment from the medical system. The debate is whether he should be treated as a child or an adult, given that he has, according to the news reports, "the body of a 12-year-old" and "the mind of a toddler". The stories stirred profound sadness and even anger in me. My husband wrote a letter to the radio station after hearing the report. I think it is worth sharing. My husband is quite a guy.

Here's what he wrote:

I was struck by your introduction today which referred to the 21-year old man as "having the mind of a toddler." A person is much more than the skills that they possess, but the concept of developmental age refers only to their skills in various areas, usually gross motor, fine motor, language, cognitive, and social. There are a number of ways in which this is an inaccurate method of summing up an individual's age. I know from personal experience that the same individual often has a wide range of "ages" in terms of different categories of activity: one person might have the cognitive skills of a five-year old but the social skills of a teenager. They might have the reading comprehension of a six-year old but the verbal skills of a ten-year old.

All the different facets of a person's development tend to be summed up by one average age, which really doesn't say much about them as a person. When we use these developmental ages outside their medical context, there is a tendency to understand them as referring to an individual's overall maturity, but that is not what they are designed to do. Even in terms of skill development, making one's way in the world is much more complicated than the specific skills one possesses. If a person had the skills of a six-year old, but they had those skills for thirty or forty years, they would learn to do a lot of things and think in a lot of ways that a six-year old child doesn't.

Furthermore, there is no way to measure a person's emotional or spiritual maturity, and that is probably what most of us think of when we refer to a person's age, or their equivalent age. People with developmental disabilities often have gifts of great spiritual or emotional maturity, though in some cases they may not know how to talk, dress, or feed themselves. Much of this is influenced by the way they are perceived and related to by those around them. The use of a phrase like "the mind of a toddler" contributes to the pervasive and inaccurate idea that people with intellectual disabilities are over-sized children. People with disabilities are not children -- they are capable of maturing, developing, and contributing to society as the adults they are.

I think this is the greatest tragedy of the story you covered today. It is clear that the people who are closest to this man -- his doctors, his nurses, and even his parents, see him as an eternal child. Imagine if all your life, all of the people who surround you saw you as a child, with the simplicity of a child, the desires of a child, and the incapacities of a child. Would this not limit your ability to reach your full potential as a mature human being?