Independence, too much of a good thing...

I've been thinking of this topic for a while, but in some convoluted way, maybe it will be timely for me to write about it as Independence Day is approaching.

It is not a secret that the notion of independence for people with disabilities is a branch of the more traditional western ideologies of independence. When I would hear this line of reasoning I couldn't exactly appreciate the rationale behind it but the more mature (notice I didn't say older) that I become my remaining brain cells seem to be able to make the connection. Rugged individualism and Darwin's survival of the fittest unquestionably underlies the rehabilitation model of disability. The mantras which are osmotically filtered through rehabilitation centers and vocational rehabilitation offices include sacred words such as productivity, goal attainment, self sufficiency, etc. There are even scales to measure one's status in each of these areas as if productivity is a fixed concrete universal indicator. It is curious how serious these abstractions are taken. Not even one's vital signs are expected to as static and predictable.

In thinking about independence and the importance that is placed of this ephemeral state, it dawned on me that it is not only at the crux of rehabilitation philosophy but it is also embedded in a different way in consumer advocacy. Independent living is a philosophy that over the years has become a regimented mode of living not so much from an imposition of the advocacy community but more so from each individual who imposes standards of independent living on their own life experience.

One of the most difficult acts that a person with a severe disability must do is admit that they need help especially if it is outside of the realm of what they have been proven capable of doing themselves. We who have grown up in the independent living movement which started in the late 1960's feel that we are obligated to live up to and live in to what we so undauntedly advocated. Sometimes, lying in my bed in my own apartment I think to myself "this is what I so strongly fought for... the opportunity to live alone, to not always be able to perform natural bodily functions in a timely manner and above all the fact that my family could say yes, my sister lives alone and doesn't need help from us." If this is sounding a bit sarcastic, it is not meant to diminish the hard earned supports and services that allow people to live in a community. Neither is it meant to cast a dark shadow on the basic principles of one living as autonomously as they wish.

So what is my post intended to evoke or to inform? I guess the fact that many of us with disabilities strive so unrelentlessly to attain a goal that in many ways becomes a little murky. Independence should not mean always needing to be in control, to be the best at one's game, to never "bother others with our needs as if they don't exist because we have gone through the metamorphosis of becoming independent." The more I learn about other cultures, the more I reflect upon the beauty and cohesiveness that is a result of family and community, the reciprocity and healthy art of being cared for and caring for another. Well, doesn't that sound radically and wonderfully refreshing?