Travel barriers for individuals with disabilities

The following was published in June of 2010 shortly before my mother died. It appeared in my monthly column From Where I Sit,  produced on a monthly basis for Voices of Central Pennsylvania, my spiritual home here in State College, PA.

The column appeared regularly for over a year, written sometimes between hospitalizations but submitted on time and limited, believe it or not, to 750 words.

Sometimes, I used the Voices Web Site to expand on material contained in the monthly printed column. My appreciation to the brilliant Suzan Erem, then Managing Editor of Voices, and to Bill Eichman, the gifted Webmaster and current President of Voices, is considerable.

The issue of travel barriers for people like me who cannot walk and require battery-powered scooters and power chairs is considerable. It is worthy of note that the State College airport refuses to allow disabled individuals to board who are confined to power chairs.

Travel barriers limit lives of those with disabilities

 “Are you really my son?” my 84-year-old mother, who suffers from dementia, asks. Six weeks ago my mother, Dr. Miriam Pell Schmerler, stopped answering the telephone by herself. Our weekly calls were models of  the bizarre, with my combining Hebrew and English into the conversation, knowing that hearing my name in Hebrew sparked recognition not otherwise available.
The once a week calls followed a pattern. I would tell her that I was her son. “Really?” she said, “how nice.” Then we would talk about some aspect of her life: her career including a doctorate in Hebrew letters (received in her late 50s) from the Jewish Theological Seminary.
In our calls I repeatedly identified everyone, Mother’s daughter, grandchildren, and husbands. “You know you were married three times.” “Three times,” she said “that’s a lot, isn’t it?” I then described each of her husbands, including my father who was 27 years older than she. “Isn’t that a big difference in age?” she asked.

The ongoing saga of her life amused her. It filled me with a tenderness for my mother I do not recall ever having felt.

I remember Gerald Sakamoto, my Buddhist minister from the San Jose CA Buddhist Betsuin, saying he had “issues” with his mother.

The word “issues” seems so refined and polite I adopted the word instantly. During our conversations, the issues disappeared. My cousin Michael once commented about how witty and charming my mother is. I said I had never observed it. Michael said, “Of course not. She is your mother. She cannot allow herself to be witty and charming in front of you.”

Now that she did not recognize me, other than as a friendly caller telling stories about her life, my mother became a real person for me. My children, Joanna and Amelia, found distress in Mother’s inability to recognize her grandchildren. While I tried to explain my perspective, I could not alleviate their distress.

Nor could I alleviate my own distress in mid-March when I called Mother and she did not answer the phone. I began a new routine, calling the staff at the excellent Blumenthal Jewish Home for the Aged in Greensboro, NC and asking Jackie, Brooke, Marina, Mary Anne or Kim to go to mother’s room and hand the ringing phone to Miriam. My mother’s voice conveyed a sense of confusion and distress. The conversation was largely gibberish. It became clear that I had to see her. But how?

The answer is circuitous. My 1993 Buick was broken. I entrusted it to Gary D. Green’s College Heights Exxon, a wonderfully reliable institution. My mechanic Jeff told me he needed more time to figure out what was wrong. Nevertheless, I needed to go to Altoona, headquarters of the Blair/Clearfield Association for the Blind and Visually Impaired, for which I work.

I researched bus service to Altoona which would take me downtown (and my power chair has enough battery power to take me to and from the office), but I could not get to a safe accessible motel where I planned to stay the week. There is no train.

I had heard about a disability van service called Wheelchair Getaways. After talking to Shannon Markley, I decided to pay for the incredibly expensive rental, knowing my creditors would and would not understand. When Shannon mentioned a slight discount for a week or more, I decided to spend the weekend seeing my mother—something I could not do otherwise. For a lengthy drive, neither my Buick nor my stamina could be relied upon to hold up while going from the wheelchair lift at the rear of the car to the driver’s door, brushing my body against the car in the process.

The van has a button on the ignition key, which when pressed twice, opens the passenger-side panel door and a wheel chair ramp unfolds. I drive my power chair (the airlines at the State College airport refuse to accept power chairs on their flights) up the ramp. After closing the door with two key presses, I use the controls for the driver’s seat to move the seat back, sideways and up, so I can transition from power chair to driver’s seat without difficulty.

Without the van, I would not have been able to go to work, see my mother and have lunch with my two children. This month’s column raises an ongoing theme: the critical nature of travel for those of us with disabilities. Employment opportunities require going to where the work is located. Families separated by miles need to be together even if only on occasion. The worst thing for the economic survival and the individual feeling of self-worth is being confined to one’s room without the opportunity to earn an income and see loved ones. Travel must be made easier for those of us with disabilities.

Joel Solkoff, author of The Politics of Food.

My mother Dr. Miriam P. Schmerler

My mother when she was 20.
My mother when she was 20.

 

Eulogy for my mother Dr. Miriam P. Schmerler

Monday, September 6, 2010, State College, PA

“People do not wish to learn about how to deal with death until they are confronted by death, and when they are confronted with death they are not inclined to study how religion approaches it,” writes Maurice Lamm in The Jewish Way in Death and Mourning.

My mother, Miriam Pell Schmerler, died this morning September 6, 2010 at about 3 AM. She died after a lengthy stay at the Blumenthal Jewish Nursing Home and Rehab Center where the chart says she suffered from Alzheimer’s disease and dementia.

For all Mother’s professional life, which began at the age of 16, she was a Hebrew school teacher, principal, and administrator in the Jewish bureaucracy—known jocosely as “the Jewish civil service.”

In 1992, at the age of 67, Mother received her doctorate in Hebrew letters from the Jewish Theological Seminary. Her thesis Graced Moments in Time: Undoing of Anti-Semitism as a Theologoumenon Within Post Vatican II Catholicism

Her thesis focused on Pope John XXIII’s efforts to rid the Roman Catholic Church of its poisonous teaching that the Jews killed Jesus, and the thesis describes how the Pope enlisted the help of Rabbi Abraham Heschel, a theologian who at the time had taught at the Jewish Theological Seminary, the center of the Conservative Jewish movement, with the title Professor of Theology and Mysticism. (He also smoked cigars.) Heschel is best known for his friendship with the Rev. Martin Luther King, Jr. and for his opposition to the War in Vietnam.

Mother’s academic writing on ecumenicism began with her master’s degree from Barry University in Florida where her thesis concerned the daily life of Jesus and the ways in which he followed Jewish teachings.

At Greensboro North Carolina, Mother served as an ambassador to Temple Beth David’s Rabbi Eliezer Havivi speaking at churches on protestant ecumenical statements revising doctrine on who killed Jesus, showing church leaders and congregants how Jesus celebrated Jewish holidays, and becoming a lifelong member of Greensboro’s interfaith council. Mother’s love for the Hebrew language and her knowledge of it was employed on a regular basis as she attended Beth David’s services and corrected the Hebrew of celebrants, leading, indeed, to the current culture of her synagogue where the quality of Hebrew is excellent. Mother spent a summer at State College PA working on the Jewish Publication Society’s landmark translation of the Bible into English.

Mother is also survived by my sister Sarah Schmerler, who is an artist in her own right, a widely published art critic, and an instructor to artists on how to use language to describe their work, especially in grant proposals, Sarah is the mother of one of Miriam Schmerler’s three grandchildren, Asher Simonson, age 8 who is crazy about Legos products with a Star Wars theme.

The other two are my children Joanna Marie Solkoff, 25, an EMT who is about to begin nursing school at Chapel Hill after receiving an honor’s BA in English, where she wrote about obscure novels by the guy who wrote Robinson Crusoe. Amelia Altalena Solkoff, 20, is currently spending her junior year abroad in Spain and we recited the Jewish mourner’s prayer over a Skype connection earlier today. Both Mother’s granddaughters smoke cigars.

I plan to sit shiva, a Jewish custom of mourning during which I will say prayers in Hebrew and Aramaic and receive visits from my friends. The Jewish community at Congregation Brit Shalom, under the direction of Rabbi David Ostrich, a wonderful rabbi, will take good care of me. I will continue to cry as I think about my mother and mourn her death.

–Joel Solkoff

 

My mother in 1925
My mother in 1925

 The following was published in June of 2010 shortly before my mother died. It appeared in my monthly column From Where I Sit,  produced on a monthly basis for Voices of Central Pennsylvania, my spiritual home here in State College, PA.

The column appeared regularly for over a year, written sometimes between hospitalizations but submitted on time and limited, believe it or not, to 750 words.

Sometimes, I used the Voices Web Site to expand on material contained in the monthly printed column. My appreciation to the brilliant Suzan Erem, then Managing Editor of Voices, and to Bill Eichman, the gifted Webmaster and current President of Voices, is considerable.

The issue of travel barriers for people like me who cannot walk and require battery-powered scooters and power chairs is considerable. It is worthy of note that the State College airport refuses to allow disabled individuals to board who are confined to power chairs.

Travel barriers limit lives of those with disabilities

 “Are you really my son?” my 84-year-old mother, who suffers from dementia, asks. Six weeks ago my mother, Dr. Miriam Pell Schmerler, stopped answering the telephone by herself. Our weekly calls were models of  the bizarre, with my combining Hebrew and English into the conversation, knowing that hearing my name in Hebrew sparked recognition not otherwise available.
The once a week calls followed a pattern. I would tell her that I was her son. “Really?” she said, “how nice.” Then we would talk about some aspect of her life: her career including a doctorate in Hebrew letters (received in her late 50s) from the Jewish Theological Seminary.
In our calls I repeatedly identified everyone, Mother’s daughter, grandchildren, and husbands. “You know you were married three times.” “Three times,” she said “that’s a lot, isn’t it?” I then described each of her husbands, including my father who was 27 years older than she. “Isn’t that a big difference in age?” she asked.

The ongoing saga of her life amused her. It filled me with a tenderness for my mother I do not recall ever having felt.

I remember Gerald Sakamoto, my Buddhist minister from the San Jose CA Buddhist Betsuin, saying he had “issues” with his mother.

The word “issues” seems so refined and polite I adopted the word instantly. During our conversations, the issues disappeared. My cousin Michael once commented about how witty and charming my mother is. I said I had never observed it. Michael said, “Of course not. She is your mother. She cannot allow herself to be witty and charming in front of you.”

Now that she did not recognize me, other than as a friendly caller telling stories about her life, my mother became a real person for me. My children, Joanna and Amelia, found distress in Mother’s inability to recognize her grandchildren. While I tried to explain my perspective, I could not alleviate their distress.

Nor could I alleviate my own distress in mid-March when I called Mother and she did not answer the phone. I began a new routine, calling the staff at the excellent Blumenthal Jewish Home for the Aged in Greensboro, NC and asking Jackie, Brooke, Marina, Mary Anne or Kim to go to mother’s room and hand the ringing phone to Miriam. My mother’s voice conveyed a sense of confusion and distress. The conversation was largely gibberish. It became clear that I had to see her. But how?

The answer is circuitous. My 1993 Buick was broken. I entrusted it to Gary D. Green’s College Heights Exxon, a wonderfully reliable institution. My mechanic Jeff told me he needed more time to figure out what was wrong. Nevertheless, I needed to go to Altoona, headquarters of the Blair/Clearfield Association for the Blind and Visually Impaired, for which I work.

I researched bus service to Altoona which would take me downtown (and my power chair has enough battery power to take me to and from the office), but I could not get to a safe accessible motel where I planned to stay the week. There is no train.

I had heard about a disability van service called Wheelchair Getaways. After talking to Shannon Markley, I decided to pay for the incredibly expensive rental, knowing my creditors would and would not understand. When Shannon mentioned a slight discount for a week or more, I decided to spend the weekend seeing my mother—something I could not do otherwise. For a lengthy drive, neither my Buick nor my stamina could be relied upon to hold up while going from the wheelchair lift at the rear of the car to the driver’s door, brushing my body against the car in the process.

The van has a button on the ignition key, which when pressed twice, opens the passenger-side panel door and a wheel chair ramp unfolds. I drive my power chair (the airlines at the State College airport refuse to accept power chairs on their flights) up the ramp. After closing the door with two key presses, I use the controls for the driver’s seat to move the seat back, sideways and up, so I can transition from power chair to driver’s seat without difficulty.

Without the van, I would not have been able to go to work, see my mother and have lunch with my two children. This month’s column raises an ongoing theme: the critical nature of travel for those of us with disabilities. Employment opportunities require going to where the work is located. Families separated by miles need to be together even if only on occasion. The worst thing for the economic survival and the individual feeling of self-worth is being confined to one’s room without the opportunity to earn an income and see loved ones. Travel must be made easier for those of us with disabilities.

Joel Solkoff, author of The Politics of Food.

Mother and me, 1959

 

 

My father and mother on their wedding day 1945
Standing, left to right: My mother, daughter Joanna, sister Sarah, me holding daughter Amelia, grandmother Celia, 1990

 

 

Waiting for the energy to crawl along the car into the driver’s seat


 

[Note: I was planning to show the last photograph I took of my mother, but it pains me so and she would not want you to see it.]

 

 

Goodbye car, you served me well

Here I am sitting at the wheel chair lift at the rear of my 1993 Buick which died this month at State College PA and is, as I write, now a paperweight-like compressed object already sold by the wrecking car company that bought the car. The odometer reading at the car’s death was 160,084 miles.
I bought the used Buick Skylark on Valentine’s Day 1998 when I was working as a technical writer at the pharmaceutical company then known as Glaxo Wellcome. I was living with my now former wife and two daughters in Durham, NC. At the time, I had not graduated from a front-wheel drive power operated vehicle (POV) scooter—easy to take apart and put together, but incapable of going up hills.
Shown above is a descendant of my first rear-wheel drive scooter which I purchased sometime later when I was a contractor at an electric meter factory writing a manual on how to communicate with an electric meter, using communications protocol to take readings, to have the meter phone 911 when the building is on fire, and to do other intricate things not yet devised but requiring hours of meetings while two geniuses from Moscow and their Russian interpreter to figure out how to get all digital meters to communicate. The meetings were in the conference room in the factory down the hill from our offices, and the engineers and I would go down together and then they would push me back up the hill.
One of the engineers was married to a woman who had multiple sclerosis (MS) and as her disease progressed she required more sophisticated mobility devices. The engineer brought in his wife’s Electric Mobility rear wheel drive scooter, a scooter I purchased on the spot with a modest down payment and monthly payments. The Electric Mobility scooter served me well, eventually letting me ride around the Grand Canyon close to the rim. Wow. Alas, not only is the scooter history, but so is the company that made it; Electric Mobility went out of business this month. But, I digress.
The immediate car need was based on the fact that my wife Diana had a job in the opposite direction of my job and with two young children to take to soccer, softball, to this and too that and for everyone’s sanity, I needed a car.
At the time, exhaustion was a major part of my daily life and my weekends were spent recovering from the work week. Diana decided the time had come for me to buy a car. I agreed but did not care what it looked like as long as it was able to accommodate a Class 5 hitch, required for assembling a wheel chair lift like the one in the photograph. I did not yet have the money for a wheel chair lift, but I figured I would begin the process of preparing for a lift.
I was too tired to go car shopping. Diana called from the used car dealer and said she had found this Buick Skylark. “Buy it,” I said. She insisted I look at the car before I bought it and I did.
For months after purchase, I spent considerable time first getting the hitch, then the air shocks, and finally the lift. The lift was installed by a man who did not know what he was doing. I drove the car with new lift into the garage, where my daughters Joanna and Amelia greeted me with enthusiasm for my latest assistive technology acquisition. Amelia, the family’s eagle eye observer, said, “Dad, the car is on fire.” I looked. It was and as I followed the flames to the engine, Joanna and Amelia helped me put out the fire. The repair work required was extensive and the restored Buick still did not have a lift that worked.
By this time, I was at the electric meter company full of a lot of electricians. I bullied and paid one electrician to hook up the lift. At the time, the number of capable people working with disability devices was limited. Much of the early period in my now 18-year-old disability consisted of persuading people, like electricians, that they could work on a disability problem because, as I said to the electrician, the principles of electricity do not change simply because the lift is a disability device.
On Thanksgiving Eve, 1999, a deer jumped over my car doing extensive damage to the engine. Joanna and Amelia expressed concern for the deer, who ran into the forest and I amused the two policemen who arrived on the scene when I requested that they search the forest to see whether they could see an injured deer in need of medical attention. They searched and told my daughters, who had by then arrived on the scene, that the deer was all right.
I should not confess this, because you might doubt my sanity, but when the deer jumped and I saw it, for an instant we established eye contact and I felt as if we had shared each other’s souls. Readers who have hit deer may recollect the disorientation that comes when Boom/Crash happens and may be understanding.
The following year, I drove the once fire-deer-ravaged car to San Jose, CA without incident and until this month my Buick was astonishingly well-behaved. Returning to the East Coast, viz. San Jose to Philadelphia, the car acquired an air conditioner in Boise, ID which leaked continually.
Leaks in the body and loss of rubber seals around the doors meant that Buick was continually being flooded and I spent a great deal of time putting towels on the floor, washing and drying them, and replacing them. Mold was a frequent automotive odor and Amelia once said, “Every time I smell mold, I think of you.”
For seemingly ever, I drove the Buick from Philadelphia to North Carolina and back, seeing my children, relocating my mother to the Blumenthal Jewish Home for the Aged in Greensboro and visiting her, and attending Joanna and Amelia’s graduations. The Buick relocated me to State College, PA and took me to Altoona last year where I did some work for the Blair/Clearfield County for the Blind.
Recently, a friend seeing this photo asked how I was able to get from the rear of the car to the driver’s seat:
I drive my scooter to the ramp
·        insert the key into the controls
·        depress the toggle switch so the wheel chair ramp descends
·        ride onto the ramp
·        swivel the seat 180 degrees
·        stand up
·        push the toggle switch up so the ramp ascends
·        hug the side of my dirty car with my clean clothes and body (not to mention my virtuous mind)
Then, I hang on with my fingertips to the strip above the doors:
·        moving with a less than perfect gate
·        throwing myself into the driver’s seat (the door having been opened in preparation)
·        taking gasping gulps of air until my breathing slows down
·        inserting the ignition key so the car starts, and closing the door,
I then drive following a procedure on file with the U.S. Office of Patents office under “Solkoff’s Dreadful Driving Technique.”
Because I have not been dutiful about rehabilitation and movement, my body cannot handle many (sometimes any) stops between here and there. I need a disability van.
This one would be perfect.
Sadly, the Buick that served me so well is dead. Long live a disability van.  Hint. Hint.
–Joel Solkoff

Travel barriers limit lives of those with disabilities

The following is my June, 2010 column From Where I Sit for Voices of Central Pennsylvania:

“Are you really my son?” my 84-year-old mother, who suffers from dementia, asks. Six weeks ago my mother, Dr. Miriam Pell Schmerler, stopped answering the telephone by herself. Our weekly calls were models of  the bizarre, with my combining Hebrew and English into the conversation, knowing that hearing my name in Hebrew sparked recognition not otherwise available. The once a week calls followed a pattern. I would tell her that I was her son. “Really?” she said, “how nice.” Then we would talk about some aspect of her life: her career including a doctorate in Hebrew letters (received in her late 50s) from the Jewish Theological Seminary.

In our calls I repeatedly identified everyone, Mother’s daughter, grandchildren, and husbands. “You know you were married three times.” “Three times,” she said “that’s a lot, isn’t it?” I then described each of her husbands, including my father who was 27 years older than she. “Isn’t that a big difference in age?” she asked. The ongoing saga of her life amused her. It filled me with a tenderness for my mother I do not recall ever having felt. I remember a Buddhist minister saying that he had “issues” with his mother. The word “issues” seems so refined and polite that I adopted the word instantly. During our conversations, the issues disappeared. My cousin Michael once commented about how witty and charming my mother is. I said I had never observed it. Michael said, “Of course not. She is your mother. She cannot allow herself to be witty and charming in front of you.”

Now that she did not recognize me, other than as a friendly caller telling stories about her life, my mother became a real person for me. My children, Joanna and Amelia, found distress in mother’s inability to recognize her grandchildren. While I tried to explain my perspective, I could not alleviate their distress.

Nor could I alleviate my own distress in mid-March when I called Mother and she did not answer the phone. I began a new routine, calling the staff at the excellent nursing home and asking Jackie, Brooke, Marina, Mary Anne or Kim to go to mother’s room and hand the ringing phone to Miriam. My mother’s voice conveyed a sense of confusion and distress. The conversation was largely gibberish. It became clear that I had to see her. But how?

The answer is circuitous. My 1993 Buick was broken. I entrusted it to Gary D. Green’s College Heights Exxon, a wonderfully reliable institution. My mechanic Jeff told me he needed more time to figure out what was wrong. Nevertheless, I needed to go to Altoona, headquarters of the Blair/Clearfield Association for the Blind and Visually Impaired, for which I work.

I researched bus service to Altoona which would take me downtown (and my power chair has enough battery power to take me to and from the office), but I could not get to a safe accessible motel where I planned to stay the week. There is no train.

I had heard about a disability van service called Wheelchair Getaways. After talking to Shannon Markley, I decided to pay for the incredibly expensive rental, knowing my creditors would and would not understand. When Shannon mentioned a slight discount for a week or more, I decided to spend the weekend seeing my mother—something I could not do otherwise. For a lengthy drive, neither my Buick nor my stamina could not be relied upon to hold up while going from the wheelchair lift at the rear of the car to the driver’s door, brushing my body against the car in the process.

The van has a button on the ignition key, which when pressed twice, opens the passenger-side panel door and a wheel chair ramp unfolds. I drive my power chair (the airlines at the State College airport refuse to accept power chairs on their flights) up the ramp. After closing the door with two key presses, I use the controls for the driver’s seat to move the seat back, sideways and up, so I can transition from power chair to driver’s seat without difficulty.

Without the van, I would not have been able to go to work, see my mother and have lunch with my two children. This month’s column raises an ongoing theme: the critical nature of travel for those of us with disabilities. Employment opportunities require going to where the work is located. Families separated by miles need to be together even if only on occasion. The worst thing for the economic survival and the individual feeling of self-worth is being confined to one’s room without the opportunity to earn an income and see loved ones. Travel must be made easier for those of us with disabilities.

Joel Solkoff, author of The Politics of Food.