Do, Can’t Do, Won’t Do: People with Disabilities (Part II)

            Disabled and failing.  The third group consists of disabled people who are neither stable nor getting better.  A lot of these people have autoimmune diseases, such as rheumatoid arthritis, muscular dystrophy or multiple sclerosis.  They are looking at years—often decades—of slow disintegration.

More often than autoimmune diseases, a lot of the people who are failing have mixed disabilities.  People are rarely disabled by a single thing.  The physical, intellectual and emotional being is integrated and holistic.  When one part of a person is disturbed, it has a ripple effect that causes disturbance in other areas.  People in wheelchairs are rarely suffering from one thing.  Muscle or skeleton problems lead to weight gain that leads to respiratory problems that roll over into cardiac problems.  Having no feet can lead to bed sores that lead to systemic infections that result in death.

            Many people who are multiply disabled are abandoned by their families.  It is easy to turn the disabled ones over to government agencies and be done with them.  It is hard to be faithful and steadfast in the care and support of someone whose physical wreckage slowly turns into mental and emotional ruin.  In the last hundred years, American personal practice has moved steadily forward in the abandonment of people who are disabled.  As the government does more, the family does less; guilt is assuaged by the belief that the government will provide adequate care.  (News flash:  it doesn’t.)

            Public policies are fully supportive of people getting worse, and public monies are spent with righteous abandon.  There is an easy transfer process from independent living to assisted living to skilled nursing to hospitalization to hospice care.  There is no comparable reverse process for getting out of skilled nursing and into assisted living, or out of assisted living and into independent living.

For disabled people, there are day care centers and truckloads of supportive equipment to be gotten.  Medicare and Medicaid will pay for you to go to a different doctor every day of the week.  (Private insurance with a co-pay makes this unaffordable for the able person.)  Denied access to restaurants, churches and movie theaters, going to the doctor’s can become the social life of a disabled person.

Choice.  Disabled people from all three groups can choose to be dependent and victims.  They can choose to sit in their wheelchairs and say, “I can’t.”  I can’t work; I can’t help others; I can’t be nice.

Alternatively, they can choose a life of responsibility, discipline and maturity.  Disabled people can work with physical and psychological therapists, nutritionists, equipment suppliers and healers.  If you choose to recover from devastating illness, you will have to fight the entire medical industry, which is backed by society and public policy. 

America is less a proponent of health and recovery and more an advocate of sickness and death.  To use a spiritual metaphor, the crucifixion has more reality than the resurrection.  A third of all Medicare money is spent in the last thirty days of a person’s life.  It is spent to prevent death, not to create health.

Most disabled people have the capacity to be productive; many do not choose to be.  There is adaptive equipment that enables the blind to have access to the written word, the deaf to get spoken messages, and the mobility impaired to travel with people who walk.  The American’s with Disabilities Act requires transportation and access to employment for people with disabilities.

Almost every disabled person can be part of the community and do something to contribute to the good of others.  People who are not even capable of supported employment are still capable of doing volunteer work.  Even a person who can’t get out of bed can still volunteer on a support line or knit blankets.

It is a matter of mind.  Do you choose to be aware of others and their needs?  Do you choose to care for others?  Do you choose to accept responsibility for yourself?  Do you choose to be a part of the community?

More properly said, the three groups that people with disabilities fall into are (a) those who do, (b) those who can’t do, and (c) those who won’t do.  Public policy and personal practice should be guided by the choices of people with disabilities, not by their disabilities.

About annecwoodlen

I am a tenth generation American, descended from a family that has been working a farm that was deeded to us by William Penn. The country has changed around us but we have held true. I stand in my grandmother’s kitchen, look down the valley to her brother’s farm and see my great-great-great-great-great-grandmother Hannah standing on the porch. She is holding the baby, surrounded by four other children, and saying goodbye to her husband and oldest son who are going off to fight in the Revolutionary War. The war is twenty miles away and her husband will die fighting. We are not the Daughters of the American Revolution; we were its mothers. My father, Milton C. Woodlen, got his doctorate from Temple University in the 1940’s when—in his words—“a doctorate still meant something.” He became an education professor at West Chester State Teachers College, where my mother, Elizabeth Hope Copeland, had graduated. My mother raised four girls and one boy, of which I am the middle child. My parents are deceased and my siblings are estranged. My fiancé, Robert H. Dobrow, was a fighter pilot in the Marine Corps. In 1974, his plane crashed, his parachute did not open, and we buried him in a cemetery on Long Island. I could say a great deal about him, or nothing; there is no middle ground. I have loved other men; Bob was my soul mate. The single greatest determinate of who I am and what my life has been is that I inherited my father’s gene for bipolar disorder, type II. Associated with all bipolar disorders is executive dysfunction, a learning disability that interferes with the ability to sort and organize. Despite an I.Q. of 139, I failed twelve subjects and got expelled from high school and prep school. I attended Syracuse University and Onondaga Community College and got an associate’s degree after twenty-five years. I am nothing if not tenacious. Gifted with intelligence, constrained by disability, and compromised by depression, my employment was limited to entry level jobs. Being female in the 1960’s meant that I did office work—billing at the university library, calling out telegrams at Western Union, and filing papers at a law firm. During one decade, I worked at about a hundred different places as a temporary secretary. I worked for hospitals, banks, manufacturers and others, including the county government. I quit the District Attorney’s Office to manage a gas station; it was more honest work. After Bob’s death, I started taking antidepressants. Following doctor’s orders, I took them every day for twenty-six years. During that time, I attempted%2
This entry was posted in activism, advocacy, American medical industry, disability, Government Services, Health Care, Poverty and tagged , , , , , , , , , , , , . Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s