Tag: power chairs

December motto plus optional isolation

Dr. Jeniffer Simon, a caring and experienced urologist at Geisinger Medical Center in State College PA showed me on her computer this image of a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York, telling me, "Unless you have surgery quickly, you will be dead in 10 years." The date April 5, 2013, 4 P.M.

CanceroustumorsurroundingrightkidneyDr. Jeniffer Simon, a caring and experienced urologist, Geissinger Medical Center, State College PA showed me on her computer this image–a cancerous tumor surrounding my right kidney, referring me to Memorial Sloan Kettering Cancer Center in New York City. “Unless you have surgery quickly, you will be dead in 10 years.” The date: April 5, 2013, 4 P.M. We hugged; I cried.

The order of this posting (typically presented in a hodgepodge of disorder):

  1. Motto
  2. Paraplegia and the recollection of previous cancers
  3. The last part of cancer therapy
  4. Optional isolation
  5. Joanna’s wedding
  6. This I believe

Motto

Make haste slowly is the motto.

Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: "Make haste slowly."
Gold coin Emperor Augustus (63 BC to 14 AD) minted to display the symbol for his motto: “Make haste slowly.”

I first came across this seemingly contradictory expression when trying to learn Latin: Festina lente.

Unless one is in a situation such as mine, Make haste slowly appears to make no sense.

Speed and slow are opposites.

The last part of cancer therapy

My situation comes at the end of a difficult time.

The time began in April when I was diagnosed with kidney cancer and reached medical optimism after I left my home in State College, PA where the expertise to save my life did not exist.

This is my first "step" in getting to New York.
My first “step” in getting to New York.

I was referred to Memorial Sloan Kettering Cancer Center in New York City—a five hour car ride away. On August 8th, Dr. Paul Russo removed the cancerous tumor, saved my right kidney, and essentially prevented me from dying of kidney cancer. It was a gift of 10 years.

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In The Canary Murder Case by S.S. Van Dine, Philo Vance—almost certainly the most obnoxious snob in the history of detective literature—is helping his friend the district attorney solve a difficult murder. The district attorney says, “’Well, well! So the case is settled! Now if you’ll but indicate which is the guilty one, I’ll arrest him at once, and return to my other duties.’”

“’You’re always in such haste,’ Vance lamented. “Why leap and run? The wisdom of the world’s philosophers is against it. Festina lente, says Caesar; or, as Rufus has it, Festinatio tarde est. And the Koran says quite frankly that haste is of the Devil. Shakespeare was constantly lamenting speed. ‘He tires that spurs too fast betimes.’”

Still from the 1929 film version of The Canary Murder Case
Still from the 1929 film version, The Canary Murder Case

Vance, whose name in 1927 became synonymous with private detective, goes on to quote Moliere, Chaucer and the Bible on the subject.

My energy level is sufficiently low and my acuity high enough I understand Vance’s point without citing the additional paragraph.

Paraplegia 

For the past 20 years, I have been a paraplegic unable even slowly “to leap and run.” Paradoxically, in high school I received a letter sweater for running 2 ½ miles regularly during cross-country competitions. My best record was clocked running two miles in less than 12 minutes, hardly the Olympics, but good enough for Cheltenham High School  in Wyncotte, PA.

Yes, I would like to leap and run. There are a lot of things I would like to do that I cannot.

What I want to do is live life to the full and in the process make a contribution along the path I have committed myself.

I certainly have done a lot of living in the past 20 years as a paraplegic. In one of my three trips across the United States from sea to shining sea, I took my battery-powered scooter and drove it around the rim of the Grand Canyon.

In California, I watched my elder daughter Joanna train a horse to jump a fence. As I watched, the horse did something amazing. After going over the fence for the first time, the horse did a double-take, shaking its head as if to say, “I do not believe I did that.” Joanna’s smile of accomplishment…

In Santa Cruz, one glorious day, Amelia my younger daughter and I boarded a ship and watched whales frolicking.

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Isadora Duncan
Isadora Duncan

For a while, I chose the Isadora Duncan School of Dance rather than rehabilitation–both dance and physical rehabilitation have become an essential part of my doxology.

The brilliant physical therapist Alicia J. Spence at State College's Phoenix Rehab begins; it is time for me to return to her.
The brilliant physical therapist Alicia J. Spence at State College’s Phoenix Rehab begins; it is time for me to return to her.

In the Silicon Valley, I wrote a technical manual for KLA-Tancor on inspecting silicon wafers for defects. Often, I scrubbed down, putting on a white gown and hat; wheeling into the clean room where my readers would be using the documentation.

The recollection of previous cancers

After radiation treatment for cancer, I fathered my two children, published three books, and loved and was loved in return.

The experience of having cancer twice, first at age 28 then at 42—treatment which burned my spine and made me unable to walk certainly slowed me down. It did not stop me. Nor has the experience of having cancer for the third time at age 65 stopped me.

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“The Roman historian Suetonius… tells that Augustus… thought nothing less becoming in a well-trained leader than haste and rashness, and, accordingly, favorite sayings of his were: ‘More haste, less speed’; ‘Better a safe commander than a bold’; and ‘That is done quickly enough which is done well enough.'”

Wikipedia continues, “Gold coins were minted for Augustus which bore the image of a crab and a butterfly, which was considered to be emblematic of the adage. Other pairings used to illustrate the adage include a hare in a snail shell; a chameleon with a fish; a diamond ring entwined with foliage; and, especially, a dolphin entwined around an anchor. Cosimo I de’ Medici, Grand Duke of Tuscany had festina lente as his motto and illustrated it with a tortoise with a sail upon its back.”

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Frequently, I suspect I have not learned from experience.

The same mistakes seem to repeat themselves in predictable order. This is most often the case with loss of energy. So often have I felt my body filled with power and enthusiasm that when the power disappears and getting out of bed becomes a chore, a dark cloud seems to hang over me.

The cloud is not there now.

Recovery from surgery has surprised me by its slow pace.

When I returned from New York in August, the combination of weakness and pain made me grateful to be alone.

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One consequence of my receiving a cancer diagnosis in April of this year is that the telling provoked waves of  affection and attention not merely from those close to home.

A woman whom I had loved intensely in 1972 ( not seen or heard from since) read here on this site an optimistic account of my situation and responded with an e-mail followed by phone calls. We talked about the children we did not have together, the life we did not share, and the strangely odd and encouraging fact that affection untended continues despite the reality that it had its origins so long ago.

Friends appeared with whom I had lost contact for decades. My expectations of how good people could be to me were vastly exceeded by reality. I have emerged from surgery with the feeling of being cherished. Nothing I can say or do can ever repay my gratitude. You know who you are and yet you do not truly appreciate how much you have graced my heart.

Often I feel words used to describe me are wrong, just wrong. I do not think of myself as “brave” or “courageous” or a “fighter.” When I think of myself, which I do often, I try to stop—meditate and in my own fashion pray that the ego will dissolve and I will just continue, pursue the path.

Optional isolation

Late in August, back at my apartment, alone, feeling that strange happiness that comes when intense pain disappears, whoever I am is comfortable to me. By nature I am impatient. By nature, I am persistent. Then, the phrase make haste slowly serves as a comfort. I will do what I need to do when the time comes. I will be grateful for energy and understanding when I cannot do what needs to be done. If the sky falls and I do not have the strength to stop it, the sky falls. Such is life.

Joanna’s wedding

Before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.
Three months before I scooted Joanna down the aisle, she drove me to New York for the surgery. My friend Ben Carlsen drove from State College to New York to bring me back home.

Going to Joanna’s wedding in October appears now on the second day of December a miraculous event. Weeks before I boarded the plane, I did not believe the energy would return. I persisted. Giving away my elder daughter on a farm in Mebane, North Carolina produced euphoria that brought me through and carried me home on Delta Airlines.

Amelia was my caregiver at the American Cancer Society's Hope Lodge in NYC where we roomed together before, during, and after my surgery.
Amelia (right) was my caregiver at the American Cancer Society’s Hope Lodge in NYC where we roomed together before, during, and after my surgery.

At the wedding it was a delight seeing Amelia again in North Carolina a seeming aeon away from New York , saying goodbye before she returned to Spain for her third extended trip.

I loved:

  • Watching my sister Sarah Leah Schmerler dance without inhibition after the intensity of being together at the hospital in New York

sarahatwedding

  • Revisiting my 12 year-old only nephew Asher Simonson with his unexpected moments of humor
  • Seeing his father Robert Simonson who had lugged my mobility devices around the Island of Manhattan
  • My son-in-law Jade Phillips and his firefighting colleagues who, when the festivities were over and the bonfire burned out, literally picked up my exhausted body and flung me into the passenger side of a truck

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Then fatigue. Delight in being alone. Concern I would not finish the work I must finish. Optional isolation. Appearing outside my apartment only occasionally. Seeing as few people as possible. Avoiding crowds, large gatherings, and familiar places where I have been surrounded by affection.

Periodically, I receive calls, visits, e-mails and reports of those who ask with affection and concern “Where’s Joel?”

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Life continues.

A dear friend becomes sick. Miles and often even a few blocks I do not have the energy to travel keep me from being where I would otherwise like to be.

I sit in my apartment and wait. A rush of energy and I find myself writing, as I am writing now, without stop, expressing while leaving dishes unwashed, my bed unmade, not yet able to complete rigorous academic writing—not quite able to pull together a large project.

Instead, I follow whim. I have been making You Tube videos—going off to a computer in the patient company of an expert in iMovie editing software, collapsing, returning, making slow steady progress as bills pile up, consistently refusing to think about the money I do not have and the energy I do not have to obtain it.

I have been reading Robert Alter’s The Book of Psalms, his introduction tracing the psalms’ origins back to the Bronze Age over 3,000 years ago, reciting his clear translation, going to the Hebrew, recalling my mother never left the house without a small Hebrew copy of Psalms in her pocketbook, dipping into David Halberstam writing about Elvis Presley, reading a paragraph here and there about architecture, engineering, virtual reality—not doing much for long, but doing and then in fatigue watching by choice vapid Netflix videos for hours.

The last part of cancer therapy

I hope to encourage others like me who are recovering to recognize our temporary limitations and persevere.

Most do not recognize the difficulties involved in recovering from cancer after the disease is gone but the energy has not returned.

[To be inserted here observations about suicide attempts by survivors. This issue I discuss in my book Learning to Live Again, My Triumph over Cancer available on this site https://joelsolkoff.com/book-store/books/learning-to-live-again-my-triumph-over-cancer/].

While researching, I came across a footnote in a medical journal article. A young man with the most dangerous stage of Hodgkin’s disease had killed himself after being cured. The autopsy revealed no cancer was present in his body.

Surviving while still recovering can be a hard time unless one is willing to believe in the future. Henry David Thoreau should be an encouragement to those us living in situations such as the one I am now in. Thoreau wrote, “There is one consolation in being sick; and that is the possibility that you may recover to a better state than you were ever in before.”

My life seems to have been lived on the principle that best way to get from here to there is NOT to go in a straight line.

I have been watching You Tubes of Edward R. Murrow, my hero. This one caught my fancy yesterday at 2 in the morning.

This I believe

I believe:

  1. I am alive for a purpose.
  2. The attempt to achieve the purpose, which I choose to call my path in homage to Laozi, serves not only its own end but to unite all that is sacred to me; namely, my children (of course) who are adults and have lives of their own; my sister Sarah and my family, my friends who are family; my love for women (a woman were the right woman in my bed); the need to care for myself, be independent in body and mind, be a good citizen who embraces not only my country but my mother Earth, and the need to be the human being I strive to be who believes in the spirit that gives us life.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way, gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.
Clearly a fictitious image of Laozi. No one knows what he looked like. The story is Laozi appeared at a border crossing. The guard asked him to write a book of wisdom. Laozi wrote The Way (The Path), gave it to the guard who allowed him to cross. Laozi disappeared. This story and The Way are the only evidence of his existence.

3. My chosen path is to help the elderly and disabled achieve their potential.

4. Along that path is the virtue of technology which makes it possible for me to go seamlessly from my bed to my kitchen out the door and into the world on scooters like the kind that my dear friend Al Thieme of Amigo Mobility invented which he refers to as Power Operated Vehicle scooters or POV scooters to distinguish them from toys. The technology mobility path includes power chairs and equipment being developed at an astonishingly rapid pace. The consequence of this technology is I do not think of myself as one whose disability prevents me from living life to the full. For individuals with hearing and visual disabilities technology has developed to the point where, for example, an individual blind from birth can drive an automobile specially equipped with laser scanning of the road;  the automobile provides the driver computer-voice simulated operated instructions.

Thank you Wired Magazine: http://www.wired.com/autopia/2009/07/blind-driver-challenge/
Thank you Wired Magazine

Totally blind drivers have passed tests on intentionally difficult driving courses. I believe in my lifetime the Commonwealth of Pennsylvania will issue drivers licenses to individuals who are totally blind but who have proven their ability to drive sophisticated vehicles such as the ones already produced by the Virginia Tech’s Robotics and Mechanisms Laboratory.

Amigo manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia's college graduation.
Amigo Mobility manufactures this narrow travel scooter shown here in a tight space in a tiny motel room as I traveled nearly 1,000 miles to my daughter Amelia’s college graduation.

5. My path is focused on what the architectural, engineering, and construction community refer to as the built environment. See, for example, my biographical information and published work for e-architect: http://www.e-architect.co.uk/editors/joel-solkoff

6. To rebuild the environment, the promise of virtual reality is real. Virtual reality is a promise my 30 year-old mentor Sonali Kumar introduced to me as I worked with her as a research assistant at Penn State’s Architectural Engineering Department to complete her doctoral dissertation entitled: Experience-based design review of healthcare facilities using interactive virtual prototypes. 

VirtualRollinshower

Sonali apologized when she used me as the model for this avatar. “I am sorry I put so much gray in your hair. You do have a lot of gray in your hair.”

Fashion aside, one of my contributions to Sonali’s animated three-dimensional model of an independent-living-aging-in-place home was the suggestion she replace the original bathtub with a roll in shower. As a paraplegic for whom being clean is vital, I have all too often been trapped in a bathtub–on one occasion it took me 45 minutes to figure out how to get out of the tub finally using my arms to push me out, pulling my legs after me as I landed onto a dirty bathroom floor.

7. Experienced-based design is essential. Experienced-based design is one of a number of academic terms meaning the best way to design an environment is to ask the person who will use it. The example that comes most readily to mind is an article I read about a new hospital in the Philadelphia area. The article complemented the hospital administration for asking patients at the previous facility what changes they would suggest making to the design of the new building to make the hospital more patient-friendly. The patients suggested making it easier to get from bed to bathroom by making the bathroom closer to the bed. The article praised the administration for the reduction in falls as a consequence. [I know. My instant reaction to that was Daaaaaaaaaaaahh.] Asking does matter. Ask experts like me, for example, or my neighbors at Addison Court (an independent living apartment building for the elderly and disabled) whom I arranged to view Sonali’s model wearing 3-D glasses at Dr. John Messner’s Immersive Construction Lab for Construction industry. The consequence is we have the experience to instruct the design of the environment around us so that it is more efficient. The result is not merely an exercise in odd-sounding academic words such as case studies, scenarios, and activities of daily living (ADL); it is also a good idea.

SloanBath

8. Self reliance should be encouraged. Shown here

[Note: Think of I believe in points 8, 9, and beyond as Coming Attractions.]

9. Knowing when to ask for help.

Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.
Color coded socks at Mount Nittany Medical Center, State College, PA. These socks indicate patient is at risk of falling.

To be continued.

Meanwhile, here is Edward R. Murrow  interviewing then former President of the United States Harry S Truman on what Truman believes. http://thisibelieve.org/essay/17058/

President Truman is followed by a bad video of an Alan Jackson song. I like the theme. I like the song.

–Joel Solkoff

Copyright 2013 by Joel Solkoff. All rights reserved.

 

Pictorial essay on how Penn State’s “football culture” adversely affects disabled students

[Readers: Sadly, in July 2012 nothing has changed to guarantee the safety of disabled students regarding the hazards described in this photo essay written in 2006. See note at the end of the essay for more information on how this essay came to be written and why nothing has yet been done to secure the safety of disabled students.]

Unmarked dangers to disabled students

October 8, 2006

TO: Dr. Richard Devon
FROM: Joel Solkoff
SUBJECT: Unmarked dangers to wheelchair, scooter, power chair riders and the blind immediately to the left of the Leonard Building.

The Leonard Building is a useful landmark for people going from the White Course graduate dormitories in the direction of the Atherton Bridge and the crossings on Atherton Road that do not involve going across the bridge’s steep incline.

 Photo 1: Front of the Leonard Building.

Looking at the map, if you go left and then across the Applied Sciences building, there appears to be a convenient right at the bridge at the Information and Technology building. Or, working one’s way through the White Course Parking lot, there eventually is a street cut, making it possible to cross Atherton on a level area.

My concern in September, 2006 was that after frequent crossings on the bridge, I would wind up on the sidewalk at Burrowes Road, going in the direction of College Avenue, only to find, on one of several occasions as many of three wet/drying pieces of sidewalk concrete and no place for a scooter to comfortably get around the often heavy traffic. So, I was driving my scooter around Leonard in the hope of finding a more convenient path to College Avenue.

Photo 2: It looks safe enough. No warning signs. Well-maintained concrete. Well-tended grass.

Photo 3: You can see my shadow as the scooter continues.

Photo 4: I am trying to give you a sense of how innocent this passage appears.

Photo 5. It suddenly is not innocent any more.

Photo 6. I don’t see these steps until my scooter nearly falls down them.

Power chairs and wheelchairs are similarly low to the ground. Indeed, the blind have no way of knowing about this likely danger.

Photo 7. A graduate student running up these stairs to go to classes passes me and watches me taking photographs.

“Can I help you?” she says. “Yes, take my picture.” She does, rushing back up the stairs, wishing me luck.

[Note: The reference to “football culture” in the title of this post refers to the Freeh Report on the scandal at Penn State released in July 2012. It is my contention, as a former graduate student at Penn State with a disability and as one who is part of the elderly community, that 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.

[During the Fall Semester of 2006, I successfully completed a graduate-level independent study course at the Department of Engineering with Dr. Richard Devon. The focus of my study was access for individuals with disabilities on Penn State‘s University Park campus. The photographic essay above is one of several documents provided to Dr. Devon, whose sponsorship provided me with the ability to interview Penn State officials responsible for disability services and the construction and maintenance of the physical design of the campus to meet the special needs of individuals with disabilities.

[I showed this essay to officials responsible for correcting hazards to individuals with disabilities. I received detailed confidential explanations that correcting them to assure safety was impossible since it would involve putting up signs and drawing attention to the presence of disabled individuals which President Graham Spanier had personally prohibited because of his concern that parents of prospective football players would be dissuaded from attending Penn State if they thought the school appeared to have too many individuals with disabilities.

[The dangers described in this essay continue despite the awareness of responsible officials. The requirement to change the “culture of football” which continues these abuses to disabled students continues to pose a challenge to the Trustees and Administrators at Penn State who are under the illusion that the findings of the Freeh report are limited to the sexual predatory practices of an individual who is now in jail and to former officials who failed to protect children.

[I plan to continue documenting details on the wide-ranging abuses by Penn State toward individuals who are disabled (including veterans), the elderly, and the community which is economically dependent upon Penn State until these abuses are recognized as part of what is popularly known as the Sandusky sex scandal and until these abuses are corrected. As Judge Freeh observed, wide-range reform is required for Penn State to recover from the worst scandal in its history and once again demonstrate that it is an institution devoted to education and the welfare of its students, faculty, employees, and community. “Mene, mene, tekel, upharsin.”] 

 

Marilyn Tavenner Confirmation Watch June 19th Update: Who cares if anyone runs Medicare?

Senator Max Baucus, Chairman of the Senate Finance Committee, who helped write the original Medicare legislation that President Johnson signed into law.

June 19, 2012 update on Marilyn Tavenner’s confirmation (don’t hold your breath) hearings:

“So what did Sen. Max Baucus (D-Mont.) say when HHS Secretary Kathleen Sebelius asked him to hold a confirmation hearing for Marilyn Tavenner, acting administrator of CMS?

“’It’s going to be difficult to proceed with the Republican opposition,’ said Baucus, chairman of the powerful Finance Committee, when I asked him about the conversation.'”

http://www.modernhealthcare.com/article/20120618/BLOGS04/306189981/max-baucus-fire-non-starter:

You call the enthusiastic endorsement of Tavenner by Rep.Eric Cantor, House Republican Majority Leader,  “Republican opposition.” Give me a break Senator Baucus.

Senator Max Baucus, Chairman of the Senate Finance Committee, who helped write the original Medicare legislation that President Johnson signed into law.

Here is what I told Katrina vanden Heuvel , the editor and publisher of the Nation Magazine [who appeared this Sunday as a refreshingly articulate advocate for abandoning the current foolish policy of austerity above all else on This Week with George Stephanopoulos ] when she asked me to give my younger daughter a gift subscription as a college graduation present:

“Katrina:

“I am shocked by The Nation’s failure to report on the deterioration of the current Medicare system which as a recipient and a left-of-center Democrat, I can report on what is actually going on (despite the Nation’s unexamined rhetoric). Indeed, I have suggested that I write about it for you to no avail. Hence, no subscription for my daughter Amelia: https://joelsolkoff.com/blueroof-reality/countdown-to-amelias-graduation/”

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In response to the report from the Wall Street Journal below:
11:52 pm May 21, 2012
Joel Solkoff wrote :

The failure of Max Baucus and the 12 Democratic members of the Senate Finance Committee, many of whom are liberals whose rhetoric on saving Medicare is voluminous, to hold hearings on Marilyn Tavenner to be head of Medicare and Medicaid is a disgrace. As a paraplegic who has experienced the deterioration of Medicare as it currently exists under President Obama, the fact that his Administration has not had a confirmed Administrator reveals the sharp disparity between a President who lauds Medicare while cutting its budget by half a trillion dollars as part of the cynical price paid to ensure passage of Obamacare. Eric Cantor’s support of Tavenner would have forced Senate Republicans to think twice about voting against her. As one who enthusiastically supported the President four years ago, my unenthusiastic vote for his re-election is indicative of the lukewarm support that could cost him the election. The Nation, The Progressive, and other presumed defenders of Medicare have failed to be critical of the President’s penny-wise, pound foolish administration of a program which he is currently destroying while speaking eloquently about preserving its future. A genuine confirmation hearing for an Administrator whose budget is larger than the Pentagon’s is long overdue. Failure to hold hearings undermines the Democratic pretense that Medicare is worth saving and makes me ashamed to admit that I am a Democrat. What happened to the party of Adlai Stevenson and Eleanor Roosevelt? The best way for Obama to prove his credibility is to push for the support of his nominee and to indicate his commitment to what used to be Democratic values.

http://blogs.wsj.com/washwire/2012/05/21/no-confirmation-hearing-planned-for-marilyn-tavenner/

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Every day I:

1. Log onto the Senate Finance Committee website. http://finance.senate.gov/

2. Click http://finance.senate.gov/nominations/

3. Then, scroll down to here:

12/01/11

Marilyn B. Tavenner, of Virginia, to be Administrator of the Centers for Medicare and Medicaid Services, vice Donald M. Berwick, resigned

4.   Click

  Check Status

5.  Watch paint dry as I go to this site http://www.thomas.gov/cgi-bin/thomas which reads:

Presidential Nominations
112th Congress (2011 – 2012)
PN1165-112

 

Nomination: PN1165-112
Date Received: December 01, 2011 (112th Congress)
Nominee: Marilyn B. Tavenner, of Virginia, to be Administrator of the Centers for Medicare and Medicaid Services, vice Donald M. Berwick, resigned.
Referred to: Senate Finance

Legislative Actions
Floor Action: December 01, 2011 – Received in the Senate and referred to the Committee on Finance.

Organization: Department of Health and Human Services

Control Number: 112PN0116500

__________________________________________________________

Now for some background information. In December, I published the following article in HME News, the publication for the home medical equipment industry which may help you understand the circumstances behind the nomination of Marilyn Tavenner to head the half trillion-dollar agency which significantly affects the life and health of all Medicare and Medicaid recipients.

Who is in charge of Medicare?

The wide-ranging debate over Medicare, a major factor in the presidential election next year, primarily focuses on whether future generations will benefit in the same way that the current 46 million recipients like me benefit. Politicians, critics and would-be-recipients express the illusion that the health care I receive from Medicare represents the ideal. I believe that the only way to save Medicare is to dramatically improve the way it is run today so that it remains a program worth saving.
The primary audience for this commentary is the men and women who provide DME other equipment necessary to sustain and maintain the quality of life. Recently, 87-year-old Lilian Hutchinson, who gets around on an unstable walker, fell and broke her elbow in an independent living facility for 90 elderly and disabled residents where I live in State College, Pa. I believe that if Lillian had access to a scooter or a power chair in her apartment, she would not have fallen. The tales of needless suffering you could tell resulting from a Medicare bureaucracy that increasingly limits access to mobility equipment and medical oxygen seem beside the point.
Durable medical equipment represents only a small fraction of the Medicare budget. The whole system for providing medical care for the elderly, disabled and poor is not working efficiently in large part because of the absence of leadership at CMS, an agency of the U.S. Department of Health and Human Services. My intention here is to answer the question: Who runs Medicare? In theory, Dr. Donald Berwick, a distinguished Harvard physician with an outstanding reputation as an advocate for efficient health care, runs CMS.
Last year, President Obama named Dr. Berwick to be administrator of CMS, a position one senator described as the nation’s health czar since the job also includes putting in place much of the legislation passed last year, which, by one estimate, will extend health care to 32 million Americans who do not have coverage.
Sadly, the president had failed to appoint an administrator early on in his administration, when Senate confirmation would not have been a problem and when an adviser with the expertise and gravitas Dr. Berwick has in the medical community would have proven useful. The major flaw in the president’s landmark legislation was how he intended to pay for it. He decided against raising taxes, which might have doomed passage.
Instead, half the estimated trillion dollars required to extend healthcare coverage was targeted to come from savings to the Medicare budget as a result of achieving cost savings, reducing fraud and abuse, and increasing efficiency. Anyone who has ever made a New Year’s resolution to save money can tell you it is imprudent to spend it before the money is actually saved.
By the time Dr. Berwick arrived at Medicare, he was in the impossible situation of being required to save $500 billion, a requirement for which he had not been consulted and in a situation where the president had given him neither the time nor the authority to implement.
The political comedian Mark Russell observed, in a similar context, that exercising leadership without the necessary authority is equivalent to sending a eunuch to an orgy. Fearful of Republican reaction to Dr. Berwick’s appointment and unsure of the allegiance of Democrats on the Senate Finance Committee, the president refused to fight for Berwick’s confirmation or to find a replacement who would achieve bipartisan support.
Using the recess appointment mechanism, which allows a president to appoint an official on a temporary basis while Congress is not in session, Berwick currently serves as acting administrator and will be replaced next year by his deputy Marilyn Tavenner. Tavenner, while respected for her organizational skill, her background as a nurse and a hospital and state health care administer, does not have the stature required to lead what is in effect a cabinet level position.
Although CMS has a larger annual budget than the Pentagon, as I write this, there has not been a confirmed head of Medicare since 2006. For the purposes of comparison, if the Defense Department did not have a confirmed secretary for five years, there would be a national outcry.
–Joel Solkoff was a political appointee in the Carter Administration, serving as special assistant to the Under Secretary of Labor. He believes a bipartisan solution to the problems of Medicare is achievable.

On February 3, I sent the following letter to Senator Max Baucus (D Montana), chairman of the Senate Finance Committee which has oversight over Medicare and has the power to conduct confirmation hearings on President Obama’s nominee to run Meadicare:

The Honorable Max Baucus

Chairman

Committee on Finance

United States Senate

219 Dirksen Senate Office Building

Washington, D.C. 20510

Dear Senator Baucus

I am writing to request an invitation to testify at the confirmation hearing of Marilyn Tavenner to be Administrator of the Centers for Medicare and Medicaid Services.

I am a paraplegic who is a Medicare recipient. While I am generally supportive of Acting Administrator Tavenner’s appointment, especially since it has been so long that CMS has had a confirmed Administrator; I have considerable concerns about durable medical equipment. As a user of mobility devices and as one who has researched other equipment in the durable category, especially medical oxygen, I think it important that my concerns be discussed.

Specifically, I am concerned about the cumbersome procedures involved in obtaining medical equipment. The current competitive bidding program, the absence of assurances that award winners will provide batteries, other necessary equipment, and maintenance are among the issues on which I would like assurance—both from Acting Administrator Tavenner and from the Senate Finance Committee with its oversight responsibilities.

I realize that no hearings have been scheduled as of this writing. However, given the importance of Medicare and Medicaid I would appreciate my voice being heard, especially on the subject of indigent disabled individuals who have suffered most from current and proposed CMS practices.

I write frequently on disability issues for Voices of Central Pennsylvania, HME News, the monthly publication of the home medical care industry, and for a variety of other publications. I am the author of three books including Learning to Live Again My Triumph over Cancer. My disability writing can be accessed easily by keyboarding my name into Google.

Thank you.

Sincerely,

Joel Solkoff

_________________________

Of course I cannot testify unless there are hearings.

For a number of reasons, it seems likely that Marilyn Tavenner is not a controversial nominee and the committee and the Senate would vote to confirm her.

It is hard to run something when you do not have the necessary authority.

Politicians are using this election season to talk about the important of Medicare and Medicaid. If they really believe what they say they would hold confirmation hearings.

There has not been a confirmed had of Medicare since the Bush Administration. 

 

 

Suggested stories:

 

My mother Dr. Miriam P. Schmerler

My mother when she was 20.
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.]

 

 

“Individuals with Disabilities Remain One of Our Nation’s Greatest Untapped Resources”

“Individuals with Disabilities Remain One of Our Nation’s Greatest Untapped Resources”

A shot from the revolver of the Rhode Island policeman went off by mistake. The bullet hit Jim Langevin, a 16-year-old boy, who was a police cadet in a Boy Scout Explorer Program. It hit Langevin’s spine and kept going. The damage made him a quadriplegic (paralysis of both arms and both legs).

Rep. Langevin is the first quadriplegic to serve in the U.S. House of Representatives. To enter the House chamber 10 years ago, when he was first elected, the maintenance crew made the chamber wheelchair accessible and removed two fixed seats in the front row so Langevin could maneuver his power chair and effectively address his fellow colleagues. Langevin has made his reputation in Congress as an expert in terrorism, computer security, and biological warfare.

This column comes to you at an awkward time. This column will appear in early December, before the seasonal gloom causes you to cheer up others with presents. This December/January issue of Voices stays on the stands until Jan. 31, by which time you will have already broken the New Year’s resolutions you have not made yet.

More to the point, for those of us who care more about politics than football, December marks the end of the lame duck Congress, controlled in the House by the Democrats and is succeeded in January by a new 112th Congress with a large majority of Republicans (63) new members) and not enough Democrats in the Senate to break a filibuster, but enough to sustain a presidential veto.

In short, the next two years promises to be a period when NOTHING will get done. Since Congress controls spending, it is possible that legislation that was dear to the president’s heart will find itself without the money to implement. For those of you so inclined, Gloom is a gift that will not go out of style, especially between now, February first, and beyond.

This column focuses on the problems and opportunities of the elderly and disabled here in Centre County. I chose to interview and profile Langevin because of a letter he signed at the end of the summer, just as the vacuous senate race in Pennsylvania was beginning to heat up. The other signer was Glenn Thompson who represents us here in State College. Langevin is a liberal Democratic; Thompson a conservative Republican. Langevin voted for Obama’s health care reform bill; Thompson voted against it. Why are these two unlikely representatives working for the same cause?

The cause is the fight to keep local medical suppliers in business. This is a cause that affects me personally because without a battery-operated wheelchair I would not be able to go from my bed to the bathroom, or to the kitchen to make dinner, or outside to work and make a life for myself. Previous attempts to reduce costs by giving large corporations, some outside the Commonwealth, contracts to provide wheel chairs, scooters, power chairs and oxygen, have resulted in companies with unsavory reputations receiving the lowest bid and raising the likelihood that poor and middle class individuals who are unable to walk face long waits for equipment delivery, maintenance and repairs. The consequence of these waits are likely to be accidents of the kind that would force independent people with disabilities to move to assistive living resulting in cost increases many times greater than Obama’s penny pitching savings on medical equipment.

Langevin and Thompson agree to end competitive bidding and (the subject of the end-of-summer letter) to halt Medicare’s requirement that customers be given the option of renting their chairs for a 13 months, rather than buying them—through Medicare–in the first month. Power chairs are custom designed to the needs of individual patients, and forcing medical suppliers to pay for them in advance will badly damage a business that is already strapped for cash.

Langevin’s exclusive written interview of over 1,700 words is available on my blog at voicesweb.org. Thompson and Sen. Robert Casey, Jr. have expressed the desire to give you their points of view. Stay tuned.

The big issue, of course, is money. Does our country have enough money to invest in the talent of those of us who are disabled and elderly? Langevin maintains, “Individuals with disabilities remain one of our nation’s greatest untapped resources, and they continue to face challenges in accessing employment, transportation, housing and even health care.”

–Joel Solkoff, author of The Politics of Food. Contact him at [email protected] or at voicesweb.org.

Protect disabled, elderly from fires and disasters

From Where I Sit: My column in Voices of Central Pennsylvania, November 2010

My only experience with an earthquake was in the Silicon Valley of California.  I was staring at my broken computer when the earth moved beneath me. The following day The San Jose Mercury News put the earthquake on page one because of its intensity and also contained an editorial on the importance of being prepared.

My home (wife, two daughters, two cats) was back in North Carolina.  There I had worked in Research Triangle Park for two years (focusing on linking a computer to a telephone switch) had disappeared. Without warning jobs in documentation had become the moral equivalent of famine where two years previously had been feast. [At  a Northern Telecom job interview I had been told being a technical writer had secured me a guaranteed income for life (gold watch and all)] .

At the same time as my gold watch turned into costume jewelry, my ability to walk disappeared. I had gone from being able to jog on the beautifully wooded track on the corporate campus, to being unable to stand without holding onto something, to tripping on my toes and dislocating my right shoulder.

 

 An extensive search of databases showed San Jose, California, could not hire technical writers quickly enough. A longtime friend had extra room nearby and invited me to go west. I was hired immediately. I fell three times during a critical interview. My cane could not hold my weight. I had not yet acquired my first mobility device, a frontwheel drive scooter.

 

 After my third fall, directly in front of my prospective boss’ feet, Vicki, who was in charge of the corporate quality assurance team, said, “Don’t worry. We have to hire you.” The reason I had to be hired was that the company, a global leader in computer wafer inspection devices, needed a writer for its new product which could predict when a wafer in the production process would be faulty and remove it from its production line on a timely basis. What the company had not prepared for was any safety orientation for disabled workers.

***

 

 These details are relevant to the evolution of fire safety policies at Addison Court in downtown State College. They are relevant because first, until recently the idea of protecting the disabled and elderly from fire and other emergencies was low on our society’s consciousness. Second, limiting safety and access to one location and one building has long-term negative consequences to our country’s economy—an economy which to its detriment fails to make use of the talent of its disabled and elderly population.

 

 R e g a r d i n g safety at Addison Court, a residence for 90 elderly and disabled individuals, where as a result of faulty fire alarms about two years ago, we learned from Steve Bair, fire director of Centre County’s Council of Governments (COG) and head of Alpha Fire Company, the proper way of evacuating a building made of brick with adequate sprinklers:

Do not evacuate. Wait for the fire company to come. Evacuation of disabled and elderly residents (in a multi-story building), especially when they have power chairs, wheel chairs, and the like, can induce panic.

 

 More on this do not evacuate concept which the fire authorities refer to as “defend in place” later. It makes good economic sense to protect disabled and elderly individuals from dying or being hurt in a fire or in some other disaster. A larger question is whether this society has the will to pay for safety, the understanding of where safety belongs in our order of priorities, and the willingness to teach and implement concepts like “defend in place.”

The most recent available Census Department statistics for Centre County (based on a 2006-2008 estimate) shows a total population of a little more than 144,000; 45,000 residents are 45 years old and older. Nearly 16,000 residents range in age from 65 years to over 85. What is the cost to Centre County and society at large to keeping these 16,000 residents safe and productive if many of them require special safety procedures? Who should pick up the tab? IWe need to invest in quieter, gentler fire alarms so that residents stay in place until the fire trucks come.

Several subjects require elaboration on the voiceswepage.org webpage: direct your browser to future blogs on the following subects:

  • Administrative efforts to reduce panic.
  • The continuation of my meandering earthquake story and where it fits into a larger picture.
  • Plans to make Lady Gaga Fire Prevention Celebrity for Centre County.

—Joel Solkoff, author of The Politics of Food. For a continuation of themes raised in this column, see Joel;s blog at voicesweb.org.Tell me how you liked the photograph of Lady Gaga and an illustrated critique of her disability-related video Paparazzi.

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.

Helen Keller, Blair/Clearfield County Association for the Blind, and Disability Rights Attorney Peter Pinnola Answers Questions

From Where I Sit
Disabilities Info Expanded at Voicesweb.org

[The following is my April, 2010 column for Voices of Central Pennsylvania.]

I learned something 15 years ago when I became unable to walk. Yes, there was the grief over losing a power I had once cherished I loved to walk. At Columbia, I walked routinely from the 116th Street campus to the Village. In San Francisco, I routinely walked from the top of Telegraph to the Potrero Hill At Cheltenham High School in Wyncote PA, I won a varsity letter in cross country—where the standard event was a two-and-one-half mile run.

When I look back excessively, I am at risk of truly living in the past. Especially noteworthy,I learned that thanks to battery-powered mobility devices, known as scooters and power chairs, that I can and have been living a productive and enjoyable life.

How I learned this lesson and how I had the good sense to apply it is a subject for a different Voices medium; namely, our Web page. This column is limited to 800 words and I have much more to say. Bill Eichman, Voice’s crafty webmaster, has come up with a solution—From Where I Sit now has online editions. Turn your browsers to http://voicesweb.org/joelsolkoff to view the following Voice’s websites for such new On-Line From Where I Sit blogs:

In 1904 Helen Keller Became the First Person Who is Blind and Deaf to Graduate from a U.S. College

Blog 1: Appreciation of Helen Keller. Helen Keller is the hero of the self-help for individuals with physical disabilities movement to which I belong. In 1903 Keller wrote about her experiences taking college examinations, “Just then the proctor informs you that the time is up. With a feeling of intense disgust you kick the mass of rubbish into a corner and go home, your head full of revolutionary schemes to abolish the divine right of professors to ask questions without the consent of the questioned.”
Keller was both blind and unable to hear. She wrote these words in her autobiography The Story of My Life on a typewriter. She could not see what she wrote. She had the option of using a Braille device, a process Keller thought too slow and only used the device for making notes. The story of Keller’s writing her story has been extensively published. Keller’s words themselves are so astoundingly beautiful.
Consider: “Even in the days before my Teacher came, I used to feel along the square stiff hedges, and guided by the sense of smell would find the first violets and lilies.” The described intensity of Keller’s need and drive to express herself must be experienced directly.
Readers are encouraged to download The Story of My Life at the American Foundation for the Blind, :http://www.afb.org/mylife/book.asp?ch=HK-title and especially to comment on my view that Helen Keller is the George Washington of the Disability Rights Movement.

Blog 2. Association for the Blind in Blair and Clearfield counties (also including Centre County). I have just been hired as Employment Specialist for the Altoona-based Association for the Blind. Assistive technology for the blind is too astounding to discuss succinctly. In the blog, I plan, among other issues, to describe in detail the technology as well as demographics for the blind in each of the counties we serve.

My director Joseph Fagnani will have me focus most of my attention on two tasks.
1. Helping to find jobs for low-vision clients;
2. Writing funding proposals to get supplies;
thus making it easier to obtain contracts and  eventually expanding the scope of our services.
I am commuting from State College to Altoona one day and telecommuting the rest of the week. In this blog, I will describe the contrast (as I see it) between State College and Altoona. What a contrast.
Blog 3. Legal Advice on Social Security Disability. My attorney and friend Peter Pinnola, whose office is in suburban Philadelphia, answers questions online about Social Security Disability Insurance (SSDI). Peter is a member of the National Organization of Social Security Claims Representatives. My experience with lawyers not a member of this association is bad. They gave me incorrect information.
A major theme of my column is the notion of having a permanent disability and still being able to work. Peter’s advice will also provide details on issues and dangers in getting off SSDI and getting off it properly without risking the option of returning to SSDI if necessary.
Finally, I recognize that my columns put me in danger of coming across as someone who does not see the value of emotional counseling—psychiatrists, psychologists, MSWs, and therapists of various incarnations. To the contrary, I love all of them (Freudian,Jungian, Adlerian, existential, and feminist therapies). Therapy is often critical in helping people with disabilities find the tools (including emotional tools) to lead meaningful lives. Therapy, however, can never be a substitute for the right physical tools. My mantra is “durable medical equipment, durable medical equipment.”
—Joel Solkoff, author of The Politics of Food. Contact him at [email protected] See more at Joel’s blog: .