On Being Loaded

As a society we maintain a fiction that electric wheelchairs enable people with disabilities to be independent.  The fact is that people with disabilities no longer have anyone upon whom they can depend to push their wheelchairs; that’s why we have power chairs.  Too often, families don’t want to be bothered with their disabled members.

East Syracuse, New York, is a lot of blue-collar workers living in a village that grew up around the railroad depot.  Whole families live there.  One day I stopped to talk to a woman working in her yard.  She waved her hand back and said her brother lived there and, waving her hand to the left, her parents lived over there . . .   And as you travel through East Syracuse you see that an unusually high percentage of houses have wheelchair ramps.  These are families who do not abandon their members when they become disabled; instead, they remodel the house.

However, in East Syracuse there is a horrendous apartment building called St. David’s Court.  It is HUD subsidized and run by Christopher Community, a branch of the Catholic Church.  What is so horrible about it is that it is segregated:  only disabled people live there.  One of the circles of hell is a place populated solely by people with disabilities.  Can you imagine being confined to a residence where there is not a single able-bodied person?  Not one person who can pick up a bag of groceries, turn a mattress or carry out the trash?  HUD no longer subsidizes such properties but they have done nothing to upgrade this particular one, nor has Christopher Community asked them to.  And Christopher Community cares so little about how disabled people are different from able people that they went through six managers in five years before I moved out.

Ah, but I digress.  Life for people who are disabled is hard and Call-a-Bus Manager Linda McKeown was making it harder.  At the meeting, she said that she would be having another meeting at Centro for social workers and similar professionals to explain to them the rules and regulations regarding using Call-a-Bus (CAB) but bus riders could not attend.

Why the hell not?  Why was McKeown talking to able-bodied people about disabled people?  Why was she sharing with others what she would not share with us?  I could not think of any reason why bus riders should be shut out of a meeting about riding the bus, so I called CAB and scheduled a ride to Centro at the time of the meeting.

And when I called back to confirm the times, my ride had been canceled.  CAB did not know why I was scheduling a ride to Centro—maybe I wanted to get an ID photo taken, or apply for a job, or file a complaint.  They—and I assume that “they” was Linda McKeown—did not know or ask; “they” just canceled my ride.

It is the job of a bus company to drive the bus, not to decide which bus passengers are allowed to go where—except in Onondaga County, where Linda McKeown thinks she is the boss of everybody and bullies people who are disabled.

After McKeown had left the original meeting, those gathered were pretty damned angry so we decided to form a committee to deal with the problem of Linda McKeown and Call-a-Bus.  The group was named PTAC—Public Transportation Advisory Committee—despite the fact that several of us wanted to call it the Public Transportation Action Committee.  I had no intention of sitting around giving advice; I intended to fix things.

The group met once a month at ARISE independent living center with Advocacy Director Beata Karpinska hosting.  Linda McKeown came to the meetings.  She came completely unprepared (on one occasion she had to borrow a pen and paper to make a note) and totally unwilling to give us any information.  She would not explain how the ride scheduling was done, how many short buses were on the road, or what the eligibility criteria were.

We all would come each month with our complaints and try to get them resolved; McKeown wouldn’t listen.  One day I made a pretty little speech about how she knew the problems we faced and we’d like to know the problems she faced.  If we understood each other then we could work together to develop a system that met all our needs.  McKeown wasn’t having any of it.  She was there to show us her power, not to learn how to serve us better.  This is always the dilemma:  power versus service.

Public transportation is a human service, as are Welfare, the dental clinic and Medicaid transportation.  The higher up you go on the administrative hierarchy the more apt you are to find an administrator who gets it; the lower down you go, the more apt you are to get a selfish moron whose greatest pleasure is having power over you, e.g., the Medicaid transportation dispatcher call-taker who I got fired.  What is wrong with people these days?  Why is there so much abuse of power and so little kindness?

Medicaid dispatch and Call-a-Bus were supposed to be transporting poor, sick people, yet they acted as if they were transporting barrels of trash.  Medicaid Director Kathy Hart saw me boarding the bus in my wheelchair and referred to me as “being loaded onto the bus.”

I am a person, albeit disabled!  Me and my kind are deserving of the same respect and consideration that is given to able-bodied people!  In my doctor’s office there is a sign that says “This space reserved for wheelchairs.”  It does not say “This space reserved for people using wheelchairs.”

I don’t look at you as an object because you drive a car.  Why don’t you see me instead of my wheelchair?

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, disability, disability rights, Government Services, Housing, Medicaid, Onondaga County, Poverty, Power, power wheelchairs, Powerlessness, Values and tagged , , , , , , , , , , , , , , , , , , , . Bookmark the permalink.

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