All posts by joel

Access is a way of life for me. http://www.voanews.com/english/news/usa/Americans-with-Disabilities-Act-Celebrates-20-Years-99691979.html Publications: I am the author of the following 3 books: · Learning to Live Again; My Triumph Over Cancer, published by Holt, Rinehart & Winston · The Politics of Food, published by Sierra Club Books and distributed by Random House· Handbook for Commissioners, Housing and Redevelopment Officials, published by the National Association of Housing and Redevelopment Officials I have published dozens of articles in my own name for such publications as The New York Times, The New Republic, The International Herald Tribune, and Information Week (http://www.informationweek.​com/534/34uwfw.htm) and have contributed to the Time-Life Books series on computers.

Kvetzing in Centre County, December 2009 Version

Preparing for the next column–a columnist kvetches 1.
Submitted by jsolkoff on Sat, 2009-12-26

Dear Reader

I write a column for Voices which appears in the Community and Lifestyles section. The column “From Where I Sit” is about the disabled and elderly. [Please note that according to the Publication Manual of the American Psychological Association (frequently referred to by academics reverently as “the APA style manual”) terms such as “the disabled and elderly” and “the blind” are incorrect; if you want to be published in an academic journal that uses the APA manual, your article will be rejected because, for example, “the blind” assumes that the individual defines himself as blind as opposed to using the politically required phrase “individual who is blind” or better yet “individual who happens to be blind” so that one does not identify individuals by their disability; this is a distinction that does violence to the English language, a language for which I have a lot of loyalty; but a discussion of the language of the disability community must await another time and requires some care).]

For the current issue of Voices (now available at Webster’s and the Corner Room and so on), I describe a telephone interview with John Wayne (conducted before he died) in which he describes his cancer experience. [Expressions such as “cancer experience” should be forbidden by law.]. He counseled people to follow his example. Two weeks after surgery, he was back on the set making a movie and telling people not be weak and feel sorry for themselves.

My original plan was to segue to the next [February] column on tools people who cannot see, walk, or hear require in order to work; dividing the column into three sequential columns and making the next one assistive technology for the blind.

A genius in Boston named Raymond Kurzweil http://en.wikipedia.org/wiki/Raymond_Kurzweil
introduced in June 2005 the “Kurzweil National Federation of the Blind Reader”, which Wikipedia describes as “a pocket-sized device consisting of a digital camera and computer unit. Like the Kurzweil Reading Machine of almost 30 years before, the K-NFB reader is designed to aid blind people by reading text aloud.”

The K-NFB reader gives a blind person at the grocery store the ability to pick up a box of cereal, click the scanner, the device reads the ingredients out loud [available in 13 languages, a concept I find outrageous; imagine hearing words “modified corn starch” in Portuguese; I would find it hard to leave the grocery store, justifying my behavior as saving money on Berlitz—and the Romanian word for avocado is…].

I am eager to describe in detail the voice simulation and generation technology that made it possible for my friend Suzanne Erb, chair of the Philadelphia Mayor’s task force on disabilities, to help me communicate helpful information to the Centre County Obama campaign headquarters, housed in the former Verizon offices across the street from Schlow Library, a headquarters where I convinced the staff to cause new concrete to be poured for the disability entrance so I could take my power chair from my apartment to headquarters.

Erb, who is blind, is also an expert on voting, especially voting machines, contributing regularly to a complicated, detail-filled blog on the subject. Suzanne explained to me the machines the Centre County Board of elections uses and the problems associated with the expensive disability machines (not designed by people with disabilities). [People with disabilities who must use equipment must use equipment without having input in its design.]

President Obama—the candidate for whom I voted in the primary and general election and worked to elect)–is in the process of taking away from those of us with disabilities access to the kind of assistive technology that we used to help get him elected.

Yesterday, I received an email from the President (the same email sent to all Obama supporters on his extensive e-mail list) expressing pleasure at the passage of the health care reform bill by the Senate. Now the House and Senate bills need to be reconciled. I mention this with a sense of urgency because my column must meet a deadline of January 15.

My column is limited to 800 words [fewer words than in this blog posting] which limits me to the expression of only one idea and its exposition. So the question nags: Which new to you idea do I want to write about for the FEBRUARY issue? As a columnist I am obliged to see in the future. Yes, I know that the New Year’s resolutions you have not yet made you WILL break before February.

A predictor of Congressional events told me that reconciliation will take about 3 weeks. But if it takes 6 weeks, then maybe it is time for me to address the effect on Medicare cuts—which the Administration has inserted as an essential element to health care reform—on the ability of low income people with disabilities to obtain power chairs so, for example, I can go from my bed to the kitchen and make my own breakfast or to Webster’s to have Seth make me breakfast. Or, as the cuts continue, I fear being forced by my disability to go to an assisted living place instead, where the cost to Medicare would be $60,000 a year when the cost of my rent is less than $20,000 a year. If I am forced to go to assistive living it will rob me of my ability to take care of myself and it would bum me out considerably.

I will keep you up to date I my quest for the right 800 words for the right time.

Joel

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
.

Why I came to State College: For the money from Voices of Central Pennsylvania, November, 2009

From Where I Sit:

I came to State College for the money.

In March 2002, I was sitting in the Office of Professor Elias Mpofu, program head for Penn State’s Rehabilitation Counseling Program, a program I was just invited to join.

Professor Mpofu asked, “Why did you decide to come to Penn State?”

“For the money,” I said. “No one would give me more money than Penn State.”

Professor Mpofu gave me a look of deep understanding. We spent the rest of the visit discussing Professor Mpofu’s specialty; primitive African beliefs on illness and disability. Professor Mpofu published a well-received paper about a Tanganyika ritual where the magic powers help a disabled person use secret forces to be liberated from the disability. (Yes, I did ask Professor Mpofu to perform the ritual on me and he is taking a long time getting back to me.)
By accepting Professor Mpofus’ academic offer I was agreeing to a career path ending in my becoming an Occupational Vocational Rehabilitation (OVR) Counselor for the Commonwealth of Pennsylvania. My job as an OVR counselor would be to help people with disabilities get jobs. Walking was part of the job description for the job Penn State was training me. I do not walk.

Therefore, no matter how well trained I am there’s no way I can become an OVR counselor without being able to walk to people’s homes where the home is not
From Where I Sit accessible. Being able to walk is job critical. With a single stroke of the pen, I had signed up for a grant from the government to make me the moral equivalent of able-bodied when the government had determined just two years earlier (at great governmental expense) that I am permanently disabled.

The attraction for me of being an OVR counselor is best described in the recollections of Abraham Nemeth, a scientist who is blind and who has become a mentor to the still-trendy summer camps specializing in teaching science to low-vision students. Nemeth’s biographer Carol Castellano writes, “Dr. Nemeth says that he was discouraged from making mathematics his undergraduate major by vocational counselors because of his blindness and the lack of Braille materials. He acquiesced and switched to psychology instead. But take a look at the courses he chose for his electives at college—analytical geometry and differential and integral calculus….”

I wanted to be a successful vocational rehabilitation counselor. I believe I have a special calling based on my disability experiences to transform my experiences with assistive technology to make it easier for people with disabilities to use new technical equipment to get higher paying jobs leading to a career.

Now, I am on medical leave from the Rehabilitation Counseling Program. My health has not been good, but not as bad as it sounds. Last year, I was in the hospital three times, once for diabetes that nearly killed me; second for treating difficult pneumonia, and the third time to evaluate a badly damaged right shoulder that requires a shoulder replacement operation where the technology has not kept up with shoulders. The medical field has made great progress with knees and hips, but not with replacing an entire shoulder. The result, no shoulder surgery for at least 25 years and periods of pain.

In my last column, I promised to provide you with my personal financial information. Last year (2008), I earned a total income of $21,256.80. All my income came through my monthly Social Security check. Out of a monthly check of $1,688.00, Medicare, my only health insurance (helpful during the period when I was in the hospital last month) deducts $210 off the top. Rent and electricity costs $830 and $145 for phone and high speed computer (I have daughters in two different states).

I have hopes of economic redemption through…

I want out of poverty. And I want a job that will earn me a way out of poverty. [Insert Sylvester Stallone Rocky Theme Song here.]

—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.