"Rewriting the Myths, Redefining the Realities"
No concept is more frequently evoked than independence to define the hopes and dreams of persons with disabilities. But what is independence?
We know the definitions, “To control your own life,” “To manage your own personal assistance,” “To leave an institution and live in the community,” but what does independence really mean?
Independence always involves interdependence because no one lives in a vacuum. We understand that independence requires positive action. We grasp that independence cannot occur without adequate income, accessible housing and transportation, appropriate support services, and some meaningful activity. But what is independence?
After the basic needs are met and the physical body has been fed and clothed, sheltered and cared for; after the problems of existence have been solved, and let us not understate the difficulty in getting to this point, when does a person with a disability become independent?
Recently a friend asked me if I believed that I had learned anything in my life that I thought could qualify as a truth. I told him that I felt that I had discovered one principle that I could place in that category. My grandmother was a blind, uneducated farm woman, but she was the first person to teach me this truth. The way she stated it was, “Every tub must sit on its own bottom.” I have found that my understanding of independence begins with this homely aphorism.
Each of us must own our life. We can make excuses, blame others, decry the mental and physical conditions that have been given to us, but none of these circumstances can justify our failure to assume the responsibility for our own existence. Independence means taking control of our lives regardless of the consequences. We often fail to make choices, and act as if we have no choice.
Independence means accepting and acknowledging our failures then doing something to change our lives. It can be more comfortable to confess our failures than to do the hard work to correct the situation. Claiming our independence often takes courage. It may be easier not to take control, but the consequences of taking the easy way out are never satisfying.
Independence requires a stubborn pride, a determined self- affirming attitude, and an uncompromising unwillingness to give in to dependency. We must say “No” to those people and surroundings that would pull us down, and we must get away from those who would for good or ill destroy our independence. We must say “Yes” to responsibility and life affirming relationships. Good judgment must be exercised when making decisions about our freedom.
Once I knew a man who was severely disabled. He was smart and learned to manage his life. He could take care of all of the details of daily living, go to school and help others, but he took his own life because he said that he couldn’t manage the whole. Independence means being able to handle the whole thing and having the will to endure.
Independence means being tough enough to be gentle.
It means having enough strength to be secure in our freedom, and
having enough faith in our ability to risk trusting our choices. No
one can be free without taking some risks. No one can take risks
without some hope and trust that the risks taken will turn out to be
good choices. If we are to be independent we must take risks. We
hope that our choices will be wise ones, but wise or not, we must
This past summer a young man left a nursing home after a seven-year stay. He has some health problems and a severe disability, yet he wants to develop an independent life style. For seven years he believed that he had no choice but to live in the nursing home. For the last several months he has been a student in a skills training program that is preparing him to live independently. In addition to learning independent living skills, he is developing the confidence, hope, and trust that he needs to live successfully on his own. He is learning to combine the available external services with his internal knowledge, motivation, and self-affirmation. When he can use his internal strengths to manage the services available to him, he will be ready to step out on his own.
In the years ahead, this man will face many difficult challenges. Neither knowledge nor services alone will prevent his returning to an institutional life. He will have to call on his strength of character and will. If he gives up or loses hope, he will also lose his freedom. After seven years in a nursing home, he understands the value of independence and cherishes it. Now he must find the courage to be. This courage is patient. It must sustain him for a lifetime. The quality of his life will be measured by his success in nurturing his courage.
Each of us, using our personal circumstances, must search for this same courage. We, too, are defined by our success in locating our own personal supply of courage.
As we look toward creating opportunities for persons with disabilities to live independently, we must acknowledge that success depends on mental toughness and the acceptance of the responsibility for our own life. High quality services are very important, but they alone are not enough to create an independent life. The means and fruits of independence become clear only as men and women find the personal courage to face themselves and their world and build a life of freedom and independence. They will manage the services that they need, assume the responsibilities of adult life, and embrace the joy of self-directed, self- affirming independence.
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Copyright 2002 A&H Publishing Corporation