Monday, March 10, 2014

Independent Living: The Myth and Its Mysteries

To do something independently means to do something by yourself or on your own.  Children need to learn how to perform some activities such as feeding and dressing themselves, but parents do not teach their children to live independently.  On the contrary, they teach their children how to make friends, be a part of the community, be on a team, and be cooperative.  Children are taught to be interdependent.  Having been brought up this way, I am confused by the agencies and organizations for the blind, vision impaired, and people with other disabilities and chronic illnesses who promote independent living and independent living skills.

The environment gets even more confusing when these same agencies and organizations form support groups.  In order to have support groups for independent people, the meetings are conducted like seminars.  Information is fed to the participants as if they are children.  Rarely do these group members have the opportunity to learn much about each other, exchange phone numbers and email addresses, or share ideas.  Meetings are over structured.  The facilitators get nervous when participants begin to bond.  When support groups become as shallow and condescending as children’s birthday parties or cocktail parties, I exit quickly.

I am reminded of the doctor dolittle books for children.  The Main character meets a Pushmi-Pullyu, and animal with four legs and two heads that face in opposite directions.  That is how it feels sometimes as you try to go in two different directions at the same time.  How do you achieve this thing called independence and the norms of a group you did not want to join?  How do you concentrate on learning adaptive skills while thinking about possible medical procedures currently being researched that, if successful, will eliminate the need for all the skills you are trying to learn?  Loving what is left and living one day at a time is the best way to keep from tearing yourself apart and falling into pieces.

I am finding that as I struggle to work with the newest generation of technology independently, something I had been able to do well in the distant past, I am being forced to learn new and very difficult skills—asking for help and seeking technical support.  When I finally break through that formidable barrier, there is always someone pointing out to me that they know a super blind “rocket scientist” who needs no help at all.

I’ve read enough biographies and autobiographies by or about blind and vision impaired, successful individuals to know that they were everything but independent.  Parents, siblings, friends, teachers, and many others played important roles in that success.  This blog was created not just by me but me along with “all the king’s horses and all the king’s men.”  One helps with the spell checking.  Another helps with the final editing.  Still another helps with the formatting of the template.  Even the setting is not my own.  The final draft is generally published at the Library for the Blind.

When I was given my first computer with screen-reading software, a rehabilitation counselor reprimanded members of my family for helping me take the computer out of the box.  That was so hurtful to them that they now stay at a safe distance.  That old computer has since been replaced by me and needs a new generation of peripherals that don’t even come with words in the instructions.  Instead you get illustrations and arrows pointing at certain items or curved in certain directions.  I encourage anyone who is considering purchasing new technology to ask to see the instructions first.

The new situation comedy, Growing Up Fisher, about a blind man and his dysfunctional, broken family is cute, very funny, and based on a true story.  It is not, however, an example of independent nor interdependent living.  The humorous situations ridicule the family members’ dependence and codependence.  The only stability in the show comes from the guide dog and the coffee table that the main character keeps bumping into.  In fact, the most damaging events (literally) are caused by the main character when he is faking independence.

Independent Living is, indeed, a modern myth that I no longer believe.  I’ve seen its negative influence move from services for persons with disabilities and chronic conditions to the elderly.  I find the, “I want to be her child and not her caregiver” ads offensive.  To those people writing those ads I can only say, “Grow up.  It’s Mommy and Daddy’s turn.”  To Mommy and Daddy I say, “Grow older as the disabled do who are loving what is left—interdependently.  You were not created to be alone.”  It is the child that cries out, “I wanna do it myself!”  Mature adults have always known what the poet John Donne said best:
No Man is an Island

No man is an island entire of itself; every man
is a piece of the continent, a part of the main;
if a clod be washed away by the sea, Europe
is the less, as well as if a promontory were, as
well as any manner of thy friends or of thine
own were; any man's death diminishes me,
because I am involved in mankind.
And therefore never send to know for whom
the bell tolls; it tolls for thee.

Devotions upon Emergent Occasions
John Donne

If you are hearing the toll of a bell, it is probably an alarm clock saying, Wake Up!”  Not only is it important to love what is left, it is also important to love those who are left before they decide to leave because they are also buying the independent living myth.