Tag Archives: 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.

Exclusive Interview with Rep. GT Thompson on his Rehabilitation Background

The following link to Voices of Central Pennsylvania contains the entire interview between Rep. Glenn (“GT”) Thompson of the Fifth U.S. Congressional District. The Congressman was interviewed by Joel Solkoff, disability- and elderly-issues columnist for Voices. The interview took place on February 6, 2010. The Congressman called the columnist who is in State College from Tuscon where he was snowed in by two feet of snow in the Washington DC area and could not get to the Capitol. Voting schedules were adjusted due to the snow.. In this unedited hour and 10 minute interview, the Congressman describes his lengthy carerr in rehabilitation and health care. Please be patient, it takes time for the window to open and for the Congressman’s voice to say….

http://voicesweb.org/node/3810

Background Whimsy for February 2010 Voices Column above

MY NEW POWER CHAIR

Picture 1. It is nearly dawn here at my apartment in Addison Court.

Lately, I have been getting up early, drinking 5 cups of Ethiopian coffee and so ending my caffeine for the day. Buzzzzzzzzzzzzzzzzzzzzzzzz. Pictured here is the view from my kitchen/dining room/living room window. I look out East onto the parking lot and the “urban” scene of Beaver Avenue in downtown State College.

Picture 2. This is my new power chair; it arrived yesterday.

What you are seeing is the Jazzy Select 6 Ultra chair made by Pride Mobility Products Corporation. It cost over $5,000 and was paid for by the Office of Vocational Rehabilitation (OVR) here in the Commonwealth of Pennsylvania.

Picture 3. This is the joy stick, mounted at my request on the left side.

Since I am right handed mounting the joy stick on the left leaves me with the motor skills equivalent to signing my name with my left hand. (Lots of luck.) My idea, in keeping with the principles of occupational therapy, was to spare my right hand (and more importantly my right arm) unnecessary strain. The result is that I bump into walls, door sills, and furniture. Yesterday, before putting the thing away for the night, I turned the large living room table completely around.

To the far right of the joy stick, just barely visible, is a half moon showing that the power chair is full of electricity. The on-off button is to the left of that, then the horn, then the speed, the button on the top decreases the speed. Notice that the one light means I cannot go any slower. With practice, I can make the thing crawl. With proficiency it will go over 10 miles an hour, a seat belt protecting me against the world.

The two buttons to the far left control the elevator function. I can go up. I can come down.

The following is what up looks like:

Picture 4. High eggs.
Picture 5. Low eggs.

So far, I have had a great deal of fun using the joy stick to go up over the bathroom sink so I can brush my teeth, going up over the sink so I can wash my dishes, going up into cupboards I could not reach before.

Picture 6. Toggle wheels—the next frontier.

You will note that there are three wheels on each side. If I go forward all six wheels go in the same direction. If I go back, the toggle wheels (at the front and rear of the machine) turn around to go back. When they turn, there is a moment when I am not going straight back. Instead, I swerve and the way I am supposed to correct the swerve is by continuing to move back and correct the swerve.

Only walls and doorways get in the way. Instead of correcting by going back, I go forward, causing the wheels to turn around forward. After one of two maneuvers, I am in the corner of the room, unable to move in any direction.

Fortunately, about 62 percent of the time, I can make a sharp u-turn. Turning around in circles is easy and a lot of fun.

As I learned from yesterday, I am not yet ready to go outside. Practice is how to get to Carnegie Hall. Practice.

Joel Solkoff, trapped behind the desk in the second bedroom, May 15, 2008.

Interview with The Duke Taught Me a Lesson from Voices of Central Pennsylvania, December 2009-January 2010


From Where I Sit

John Wayne once granted me a telephone
interview on his experiences with cancer.
For those readers too young to remember [a
concept that defies imagination], John
Wayne (nicknamed The Duke) was an
Academy-Award winning actor who
appeared in 142 movies. His cowboy and
other macho roles served as an icon for my
generation on how a real man is supposed to
behave.

This is a column about fear. Miriam-
Webster’s Collegiate Dictionary defines
fear as, “an unpleasant often strong emotion
caused by anticipation or awareness of danger.”
Fear “implies…loss of courage.” I am
familiar with the fear that comes from:

Having an oncologist look up from my
pathology file and say, “There is no doubt
about it. You have cancer.”

Sitting for hours in radiation waiting
rooms as my fellow patients look at each
other and wonde who will live and who will
die.

Experiencing the side effects of radiation
slowly burning my spine and resulting in
the odd experience of standing at a jogging
track ready to run (forcing myself to run)
and being unable to do so.

Being unable to walk across a room without
falling—I once fell in front of a
prospective employer three times during a
job interview.

I cannot go from my bed to the bathroom
without transferring to a power chair. I
know about courage and my lack of it,
about appropriate and inappropriate anger
and the need to put my past behind me and
be human—not a cripple; human. Here in
my apartment in State College, I recognize
my New Year’s resolution must be to
behave (to excuse the sexist expression)
like a Man.

Twenty-one years ago I was an arrogant
journalist writing an article for The New
York Times on the emotional effects of surviving
cancer. At the time, society was still
pondering such questions as whether it was
a good idea to tell patients that they had
cancer. Doctors thought it prudent not to
disclose likely side-effects. The newspapers,
examining the statistics on cancer
mortality, featured headlines on the failure
of the War on Cancer. By doing so, the
media had masked the remarkable progress
being made especially among children and
young adults. At a time when my mother
refused superstitiously to say the word cancer
out loud, spelling it letter by letter, parents
of cancer survivors had trouble conveying
the reality that when a child has cancer
it need not be a sentence of death.

I was not sufficiently savvy to realize that
the vagaries of life were mirrored in the
familiar vagaries of journalism. As I later
learned, the chief editor of the Times’
Magazine made it a practice to reject the
first draft of every free-lancer. Wendy
Moonan, my immediate editor, wanted my
revision to include an interview with John
Wayne. Wayne had lung cancer and since
1964, despite the objections of his business
managers, he served as a spokesman for the
American Cancer Society. His commercials, which
featured a pitch for early detection,
were model John Wayne sounding
essentially like someone who
would shoot you without pause if you did
not immediately send a check, which many
viewers did. Wendy warned, “You cannot
tell him where you got this telephone number.”

I dialed. John Wayne [JOHN WAYNE!]
answers the phone and says, “Unless you
tell me where you got my phone number, I
am going to hang up on you.” I turned in my
editor without a moment’s thought.

Two weeks after the doctors removed
Wayne’s lung, he was back at work making
a movie. “I jumped into a river with handcuffs
on in January…and that was tough. It
kept me from developing a protection
which I thought I needed but which I didn’t
need.” I replied that my experiences with
cancer left me with unresolved feelings that
were getting in the way of living my life. He
dismissed the idea that I should, as he put it,
feel sorry for myself. John Wayne said,
“The thing to do is just try your damndest
without telling anyone else about it.”

For its own reasons, The Times published
my first draft which did not include the
Wayne interview (making this a Voices
exclusive). Less than a week later, I was on
Good Morning America feeling sorry for
myself for a brief moment of public
acclaim. Less than a year later, Wayne died
of stomach cancer. Today, I still remember
his advice with reverence, despite the fact
that I detested Wayne’s politics. In
February, I plan to discuss:

1. The wisdom of John Wayne

2. How to implement that wisdom here in
Centre Country to help reduce fear among
our disabled and aged population.

(Our community’s considerable private
and academic emotional counselors are
invited.)

Joel Solkoff, author of The Politics of
Food
.

New column speaks to disabled, elderly issues–from Voices of Central Pennsylvania

July 2017. State College/University Park, PA. Years later, this reflection on the Sandusky scandal still rings true:
++++

“As a former graduate student at Penn State with a disability and as one who is part of the elderly community, the focus by powerful officials on football-above-all has also been used to cover up exploitation of disabled and elderly students and students who are veterans (especially disabled-veterans) and to discourage recruitment of such individuals to become students. Also, this exploitation has extended to the community economically dependent on Penn State.”

 ++++
Note: I am in the process of critiquing the report issued by former FBI Director Louis Freeh issued in July of 2012. The report, which was commissioned by the Board of Trustees at Penn State, concerned what is popularly referred to as the Sandusky sex scandal. Freeh, in issuing the report, pointed out the danger of the "football culture" at Penn State which gave license to officials in power to ignore predatory sexual practices on children. 
As a former graduate student at Penn State with a disability and as one who is part of the elderly community,the focus by powerful officials on football-above-all has also been used to cover up exploitation of disabled and elderly students and students who are veterans (especially disabled-veterans) and to discourage recruitment of such individuals to become students. Also, this exploitation has extended to the community economically dependent on Penn State. As partial background regarding this contention, I am here republishing the monthly column I wrote for Voices of  Central Pennsylvania, then edited by the gifted Suzan Erem. The column appeared from October of 2009 until February of 2011. What follows is the first column.

From Where I Sit

In high school I was a junior befriended by a sensual senior who shared her physical love with others, but talked philosophy to me. I would have preferred it the other way around, but I had no choice. If I wanted to benefit from the privilege of being in her presence (and I did), then I had to sublimate my lust by talking about existentialism—
Sallie’s philosophical passion.

Existentialism is not as chic today as it was when I was 15 or 16. Jean Paul Sartre had not yet refused the Nobel Prize in Literature, nor had he turned his back on literature—deciding finally to complete Being and Nothingness and other non-fiction. The central philosophical question that haunted us adolescents—Why am I here?—remains through our old age.

For me the question takes on an added dimension. At 28 I was diagnosed as having a relatively rare form of cancer that a generation earlier killed virtually everyone who had it. For much of my early adulthood, an astonishingly large number of physicians believed the disease was universally fatal. Oxford University Press published an impassioned plea to physicians to reconsider their notions of doom. Today, the disease is nearly universally curable. For a while, the people who began the cure with radiation machines underestimated its power and a large number of radiologists died while curing others. My radiologist at George Washington University Hospital in Washington D.C. died before I reached the five-year disease free mark. Seymour Kaplan, the Stanford University radiologist who published the Oxford medical text, suffered a similar fate.

I lost the ability to run, walk, or stand without assistance, but the disease and its consequences did not prevent me from fathering two beautiful daughters. Why am I here? has become a consistent theme in my life. Consistent themes make it possible for people to become columnists for newspapers and for publications such as
Voices of Central Pennsylvania. So, what you are reading is the first in a series of monthly columns on the subject of having physical disabilities and being elderly here in Centre County.

I will not pretend that physical disabilities and old age are inherently fascinating subjects. However, one of the advantages of being a columnist is that I do not have to come to the point too quickly—as long as I get there. So for my readers, beginning
October, 2009 I plan to use my wiles to make me part of your life. I plan to start here at Addison Court, the 89-apartment complex in downtown State College, where at 3 a.m. nearly every day drunken students out of control (half a block from the police station) walk east in groups of 20 shrieking men and women who pause to urinate and vomit in our parking lot.

I plan to find out why the police do not interfere with drunken activity and how it makes Addison Court residents feel.

I can’t wait for you to meet my neighbors. A few weeks ago, Lillian (83), Audrey (80), Hilda (90), and I had a lively Corner Room breakfast talking about what it is like when most of one’s friends are dead or too-far-gone to remember the same old stories.

Addison Court residents, with the exception of those with physical and emotional disabilities, are 55 or older, live in rent-subsidized apartments, have little money, not enough to do, and most vote out of a sense of patriotic obligation.

From Addison Court, half a block north on Allen, is Webster’s Bookstore Café. Webster’s proprietor Elaine Meder-Wilgus surrounds herself with serious reformers who are not afraid to have fun. This column will discuss reform and fun from my distinct perspective. I am 62. I am a paraplegic. I have rotten teeth—17 cavities.

I have strong ideas about the importance of uniting with others such as myself because as Al Smith once said, “The only cure for the ills of democracy is more democracy.”

In the November column, I will tell you why I came to State College, how much money I earn, and how I plan to survive financial disaster.  [October 2009]

Joel Solkoff is the author of The Politics of Food.