"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
make them.
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.
Copyright 2002 A&H Publishing Corporation