Tuesday, July 01, 2008

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?

8 comments:

Lon said...

Thank you for helping me correct the mistake on your submission. I cleaned up the error and have also put your blog link in the AT blog carnival submissions l=this month. I also posted a link to your Independence post on my no limits to life blog on wordpress. http://nolimits2life.com/blog Thanks,
Lon

Ruth said...

I don't think it sounds sarcastic at all. Living independently is extremely important, but it shouldn't turn into a challenging reality show, which it can depending on the level of support there is. And then there's the issue of when one goes out into the community and needs assistance with things because paid help cannot be by one's side all the time. (not affordable, not available, etc.) There's a disconnect that goes on in terms of reality in our society in truly accepting our disabilities and I daresay it's not always 'our' adjustment issue. Take care.

william Peace said...

Wow, this is food for thought. Ironically, the subject of independence has been on the forefront of my mind since I took up kayaking and skiing. I simply cannot as yet ski independently. This has forced me to accept "help" for the first time since I was paralyzed 30 years ago. My willingness to accept this help is by far the hardest part of skiing. Independent to a fault, asking for help somehow seems like a personal failure. Intellectually I know this is not the case but convincing my heart is another matter. This makes me shake my head in wonder how we absorb so much of the larger culture that surrounds us. In fact, I suspect one reason prefer kayaking over skiing is that I am independent when on the water.

Carol Marfisi said...

Hey William,

I really thank you for commenting on my piece about independence. I was a little worried that I would get burned at the stake or something not flattering like that. I think independence is a very sensitive subject in many ways for all of us and the philosophy of the independent living movement has become more sacred than the religious cannons. But I guess that's how philosophies and ideologies go, and that's why they are good fodder for critiquing.

I was interested in the kind of skiing you are involved in, because I know there are all kinds of adaptive skiing equipment.

I myself am a bit outrageous in that with my cerebral palsy and being a wheelchair user, I am determined that I will one day go bungee jumping or skydiving. I know that there are programs that actually work with the spinal cord injured people in training them to bungee jump. So, maybe I'll see you on the slopes as I am flung on a bungee rope, what do you say?

Carol

Carol Marfisi said...

Hey Ruth,

I really appreciate your comparison of a reality show - it's very fitting. Sometimes I wonder who it is that we're trying to impress by needing as little help as possible. Is it ourselves or others? And is it because the rehabilitation universe has turned help into a four-letter word? We truly consider it a scandalous phenomena when all the external gossip that accompanies a juicy scandal.

Maybe we have to come to a place of appreciating that needing or receiving care sometimes takes more ego strength and self-pride than hiding behind an image that is not only false but continues to reinforce the bad rap that has been given to needing help and care.

Would like to stay in touch,

Carol

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