Disabilities

Saving Medicare billions: Trying too hard can get in the way

2011-11-14T03:38:00.003-05:00

Memorial Note: Tonight Jack Seidner aged 93, my neighbor and friend at Addison Court, State College. PA, died while talking to his son who had called from Israel. He died at Centre Crest, an assitive care facility in Bellefonte, PA, 11 miles from Addison Court.

Jack was a veteran of World War II and was a monthly calendar boy on the Jewish War Veterans calendar last year He will be buried beside his wife in Harrisburg at a private funeral.

Jack was a wonderful man. He was basically an intellectual although he hid it as much as possible. When I wrote a story about home medical oxygen, oxygen which he received to stay alive, he refused to be photographed saying, "I have been studied enough."

His sense of humor was ever-present, sometimes to the point of reciting bawdy limericks to the residents of Addison Court. I will miss him. He died at Centre Crest. The article below, originally published in HME News on September 27, 2011, is dedicated to his memory. In these days of turmoil at Penn State University, the need to care for the real needs of this community should be apparent.

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Saving Medicare billions:
Trying too hard can get in the way

The money saved as a consequence of concentrating on what is right will astonish the body politic

"I have saved up enough pills to kill myself," a neighbor told me, "if I ever have to go to Centre Crest."

I live in an independent housing apartment building in downtown State College, Pa. The nearly 100 residents of Addison Court are disabled or elderly. Most of us are poor--the more affluent are on Social Security or Social Security Disability and Medicare.

At least once a week, the ambulance stops by my window and a resident goes off to the hospital. The lucky return. The not-so-lucky move on to Centre Crest, the default public nursing home about 11 miles away, where assisted living means expensive round-the-clock care, diaper changes, attachment to machines that keep the biological aspects of life going, medical personnel who make sure medications are taken correctly, and a world view that echoes Dante's inscription over Hell: "Abandon hope, ye who enter here."

Last year, Pennsylvania's Department of Aging estimated it costs Medicare $40,000 extra each year for a resident to move from an independent living to an assistive living facility. The loss of dignity to the individual is incalculable.

The French philosopher Jean Paul Sartre observed that when one tries especially hard to listen, often the trying gets in the way of hearing. Medicare is trying too hard to do the wrong thing. Medicare's purpose is not to save money, but to provide health care in a way that concentrates on improving the quality of life. Recent evidence on the brain's adaptive capacity provides hope that not only can individuals resume physical capacity from the devastation of a variety of afflictions that affect us at Addison Court, but also we can regain our talents to improve this society, not simply take from it.

"The Brain that Changes Itself, Stories of Personal Triumph from the Frontiers of Brain Science," by Columbia University's Norman Doidge, M.D., points to the brain's ability to recover from strokes and other disorders with rehabilitation and concern.

"Traditional rehabilitation," Doidge writes, "typically ended after a few weeks when a patient stopped improving, or 'plateaued.' And doctors lost the motivation to continue. But...these learning plateaus were temporary...Though there was no apparent progress in the consolidation stage, biological changes were happening internally, as new skills became more automatic and refined."

The Obama administration's penny-wise-and-pound-foolish cutbacks on availability to durable medical equipment, rehabilitation services, and home health care are forcing residents of independent living facilities into the Centre Crests of this country. For example, the narrow focus is apparent in Medicare's frequent citations of the Congressional Budget Office's competitive bidding estimates of relatively insignificant savings for Medicare Part B ignoring the astronomical costs that will result to Part A when disabled individuals like me can no longer pick up the phone and call my local medical equipment provider. Instead, I must wait for a competitive bidding winner (several have unsavory reputations and some are based out of state) to provide a battery. Delays could easily force me into Centre Crest as a result of falls, problems getting to the bathroom, etc. Delays would rob me of the ability to work as an adviser on virtual reality models for construction of future aging in place housing--construction which will result in significant Medicare savings.

Medicare is discouraging the necessary alliance between rehabilitation therapists and medical suppliers. This alliance will help restore the ability of my fellow residents to function and contribute to society.

"Individuals with disabilities remain one of our nation's greatest untapped resources," said Rep Jim Langevin, D-R.I., the only quadriplegic in Congress. To release the untapped resources of the elderly and disabled, Medicare must stop thinking about saving money and start thinking about improving health. The money saved as a consequence of concentrating on what is right will astonish the body politic. Providers of durable medical equipment require the support of consumers like me. Providers and rehabilitation therapists have been slow to recognize that in unity there is strength. Together they must spread the word that when an individual becomes old or disabled, science is rapidly increasing the ability to regain talent and good health.

Joel Solkoff is the author of "Learning to Live Again, My Triumph over Cancer" and is adjunct research assistant at Penn State's Department of Architectural Engineering.

http://www.hmenews.com/?p=article&id=hm201109OayJh3

What’s the fuss? [Grilled 101]

2011-04-06T07:02:00.003-04:00

What’s the fuss? [Grilled 101]

I originally created this blog as a convenient way for readers to have access to my monthly column in Voices of Central Pennsylvania, published from October 2009 to February 2011. While recovering from minor cardiac surgery where the medical standard of “do no harm” was once again violated, I decided to quit my column rather than continue to be a person unable to change Medicare and thus always angry all the time. I wanted to love.

I am a frequenter of hospitals for pneumonia, rehabilitation to a right shoulder that cannot be repaired, diabetes, etc.--invariably released by Medicare dictate before it is necessary; frequently saved by homecare agencies now foolishly required to reduce their services.

In writing my column for February (the one below that begins with bull riding), I opted to reject anger.
Similarly, the once favorable economic conditions in downtown State College, PA where I live had given me the hope that government favorable to the disabled and elderly might provide us with the infrastructure, training, and understanding required to develop and benefit from the talent of those of us who are broken in body but sound in mind.

It is foolish to be angry at my fellow-town mates (in a place that is rapidly turning into a Bruce Springsteen song) who are so beset with troubles of their own that…

So, I gave up the column to work with engineers, architects, and designers who are planning a future that follows the Americans with Disabilities Act (ADA) and where segregation of the sort I experience daily at Ye Olde College Diner and the like (whose lack of access is grandfathered ) does not exist.

What does exist is that I continue to live an independent life. I cannot get from my bed to the bathroom without a scooter or other mobility device. Yes, there is a point where reality requires that I cannot engage in submission, cheerful or otherwise.

I must have access to mobility devices. President Obama, for whom I worked and voted, should be ashamed of himself for not only tolerating, but personally advocating a competitive bidding program for durable medical equipment.

This plan, which the President inherited from President Bush (who used it as part of an effort to gut Medicare) is already, in Pittsburgh and other locations, so altering the process of providing medical supplies such as oxygen, wheelchairs, power chairs, scooters and other mobility devices that local suppliers, such as the three here in State College, would only be able to serve the rich.

The rest of us are or would be at the mercy of often out-of-state suppliers of dubious reputation who would take their sweet time providing batteries and maintenance, resulting in people like me falling and going into assisted living facilities. Thus savings in Part B of Medicare would result in large costs in Part A.

Last year’s measure to end competitive bidding received the bipartisan support of so many members of the House that if the Democratic leadership had called it up for a vote it would have passed. The Senate followed the lead of Senator Robert Casey, Jr. (D-PA) and no member of the Democratically-controlled senate endorsed the legislation.

While Sen. Casey publicly dithered about his position on the subject, his real position appeared to become clear. Sen. Casey is reportedly a friend of the President. The President, for reasons of his own, an informed source told me, personally believes in competitive bidding. Sen. Casey is not going to take a position that would make his friend angry.

Two columns below express the views of Rep. Jim Langevin, a liberal Democrat from Rhode Island, and Rep. Glenn Thompson, a conservative Republican who represent me here in the Fifth Congressional District of Pennsylvania, expressing their opposition to competitive bidding. Their specific advocacy was to the legislation introduced last year, but this year’s legislation is déjà vu all over again.

My friends who meet regularly at the Corner Room in this sliver of left wing political power here in the small borough of State College (surrounded on all sides by Republicans; Republicans to the north; Republicans to the south; Republicans to the east, and Republicans to the west) cherish the liberal’s dream that someday these evil Republicans will turn into progressive Democrats.

My fixation on competitive bidding has made me a source of jest and some mistrust. My support of Rep. Thompson, especially, has made some Democrats suspect my loyalty to the party.

I am a loyal Democrat who believes in the party of Eleanor Roosevelt and Adlai Stevenson. I have no trouble picturing Eleanor Roosevelt shaking her trademark index finger at President Obama and Senator Casey. If they want my vote, they had better start acting like Democrats. Democrats don’t treat people who cannot walk in a way that causes us to feel like cripples.

Shame on you President Obama. Shame on you Senator Casey.

I will pray that you find your way back to the ideals of the Democratic party.

Shame. Shame. Shame.

--Joel Solkoff, March 2011

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

2011-04-06T05:09:00.000-04:00

“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 jsolkoff@gmail.com or at voicesweb.org.

Exclusive Written Interview of Rep. Jim Langevin (D-RI)

2011-04-06T04:53:00.000-04:00

Exclusive Written Interview of Rep. Jim Langevin (D-RI) by Joel Solkoff, Voices of Central Pennsylvania
1. Why do you oppose the Obama Administration’s efforts to create competitive bidding for medical suppliers of durable medical equipment, such as medical oxygen, power chairs, scooters, wheelchairs, and other mobility devices?

The competitive bidding program was enacted as part of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003 (MMA) in an effort to improve quality of service and eliminate excess costs in Medicare. While I support these overall goals, flaws within the bidding process sparked early concerns within the program.

Competitive bidding was implemented in July 2008. However, Congress delayed the program two weeks after it began, recognizing the new system was not generating the savings and competition the law had intended. Further, the program was acknowledged to be a potential threat to access and quality of services, vulnerable to corruption, and resulting in fewer suppliers capable of meeting the unique needs of patients.

During the moratorium, the Centers for Medicare and Medicaid Services pursued other avenues that achieve higher quality care and succeeded in cutting costs, yielding savings of 16.5 percent. These alternatives underscore my belief that the original program is ineffective and unnecessary to keep as written law. For this reason, I cosponsored H.R. 3790, which would repeal the Competitive Bidding Program.

2. What are your objections to the attempt to repeal the first month purchase option for users of mobility devices?

Currently the Medicare program allows beneficiaries a choice as to whether they want to purchase the power wheelchair that is right for their size, disability, functional level and home situation, or if they want to rent it. Over 95 percent of beneficiaries choose the first month purchase option because their disability often involves a chronic, long-term condition and they require use of a power wheelchair to remain active and independent in their homes and communities.

The Affordable Care Act repeals the first month purchase option and requires a mandatory 13-month rental, regardless of the acuity of the condition or long-term need of the patient. Unfortunately, many power wheelchair providers do not have the capital or lines of credit in the current economy to bear the burden of paying the up-front costs to procure the appropriate wheelchairs from the manufacturers. Without a one-year delay, this policy could create significant access and quality-of-care issues as providers of this equipment struggle to make the significant changes to their business model to adapt to a new payment model, which has the costs front-loaded with reimbursements from Medicare spread over 13 months. They may also simply go out of business.

A one-year delay of this provision will allow providers of power wheelchairs more time to implement this significant policy change.

3. Why do you think President Obama waited so long to appoint an administrator of Medicare and Medicaid? (I would think a Medicare Administrator could have given the President valuable information and advice during the health care reform process.)

While I cannot speak for the President, I believe that vetting and selecting high-caliber individuals to lead departments and agencies can be a long and challenging process, particularly those that require Senate confirmation. As health reform was considered in Congress, counsel was sought from numerous stakeholders at all levels and throughout all steps of the process. Now that the law has been enacted, the Administrator of the Centers for Medicare and Medicaid Services (CMS) is one of many Administration officials tasked with its implementation, which is equally, if not more important to the success of health reform.

4. What affect will Donald Berwick’s recess appointment, with its limited duration, have on the future of Medicare and Medicaid, especially given the strong Republican and Tea-party desire to cut Medicare even more.

Donald Berwick is a highly respected leader in the field of health policy. His knowledge and experience make him uniquely qualified to head CMS, particularly as we begin to institute payment and delivery reforms to maximize quality and efficiency in Medicare and Medicaid. While a Senate confirmation would have been preferable, some senators intended to make Donald Berwick’s confirmation process a referendum on health reform, placing ideology over his qualifications as a potential administrator. Republicans have long stated their intentions to “repeal and replace” the health reform law. We cannot dismiss the probability that they will use every means at their disposal to accomplish this, including the use of controversial amendments, defunding the program through the appropriations process, and blocking future nominees for positions in the Administration.

5. What are your views on the half trillion dollar cuts in Medicare as a way of helping to pay for the health care reform bill?

Health care costs in the United States are rising at an alarming rate. Yet despite the fact that we spend more per capita on health care than any other industrialized country, we produce disappointing outcomes by a number of important health measures. Furthermore, the U.S. remains the only developed nation that does not guarantee health coverage as a right to its citizens.

Health reform will expand coverage to 32 million Americans, promote a strong health care workforce, reduce the deficit by $143 billion over 10 years and protect Medicare for our seniors by extending the trust fund by a decade. These reforms are funded in part through Medicare savings, not benefit cuts.

Reducing health care costs and expanding insurance coverage does not mean we have to raid Medicare. On the contrary, we can and must use the money already in the system more efficiently to ensure a sustainable health care model.

6. As a Democrat who worked for President Obama’s election (and as a paraplegic), I have been disappointed by the President’s insensitivity to issues relating to disability, especially as they relate to the on-going difficulties in obtaining needed assistive technology. What are your views on the subject?

On July 26, 2010, we celebrated the 20th anniversary of the Americans with Disabilities Act (ADA). This was an opportunity to both celebrate our accomplishments, and reflect on the continuing challenges.

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. This will only continue as we see increasing numbers of veterans returning with Traumatic Brain Injury, Post Traumatic Stress Disorders and other disabling conditions.

It is more important than ever that we educate businesses and connect them with proper resources to create more employment opportunities in our communities. We must collaborate with local and state governments to ensure that transportation is available and accessible to everyone so they can get to their job, or the doctor, or the grocery store. We need to provide more resources for our teachers so that every child can receive a proper education, which is the stepping stone to a better future.

We must also continue the development of assistive technologies and make sure that computers, PDAs and phones are fully accessible for the vision and hearing impaired. To that end, on the 20th anniversary of the ADA, the House of Representatives passed the Twenty-first Century Communications and Video Accessibility Act, which would require that certain technologies be compatible with devices used by individuals with disabilities, and attempts to increase access to technology through various funding and regulatory requirements. This was signed into law by President Obama on October 8th.

7. Here in State College, PA, I am a constituent of Rep. Glenn Thompson, a Republican with whom you have been working on issues affecting local suppliers of medical equipment. Would you describe what your working relationship with Rep. Thompson is like?

Disabilities don’t discriminate on the basis of party affiliation. I have a long record of working in a bipartisan fashion to enact policies that increase the quality of life for all individuals with disabilities. My relationship with Representative Thompson is no exception.

8. What are your views on the future of productive working relationships with Republicans on health care-, Medicare-, and disability-related issues over the next two years?

While the climate in Washington has been particularly partisan during the elections, it is my greatest hope that we will not let the issues that divide us keep us from the work we were elected to do. Nothing would be more detrimental to our economic, fiscal and social progress than the continuation of partisan rhetoric and the lack of courage to make the tough choices that will ultimately lead us into a more prosperous future.

9. Do you think a Republican-dominated Congress will be effective in preventing full implementation of the health care reform bill?

Passage of the health reform bill wasn’t the end; it was the beginning of a new chapter for health care in America. This law will be judged by the court of public opinion, just as it will be challenged in the courts and in Congress. Some changes will have to be made, and the policy will evolve as our society does. At the end of the day, I believe the reforms will prove popular and successful.

10. Donald Stockman, budget director for the late President Reagan, says the country is out of money, must cut back on everything, and said on ABC’s This Week with Christiane Amanpour that scooter manufacturers should cut back on production. Is the country out of money? Can we afford to provide our disabled population with the assistive technology we need to be productive? Can our economy afford not to develop the talent of people with disabilities?

Americans are innovative and resilient. Although we will have to make tough budgetary decisions to put our country on a fiscally sustainable path, we still have the resources to invest in key areas that will plant the seeds of economic and social growth. We can make transportation and technology even more accessible and available. We can provide more resources to teachers and students to achieve a better education. We can focus on income and asset development so families have the means to become productive members of their communities. If we act with courage and commitment, then we will provide the means for every individual to realize their true potential.

Thank you.

Joel Solkoff, November 19, 2010, Voices of Central Pennsylvania

[Please note: As a columnist, I have the liberty of injecting personal notes in my writing, such as the fact that I am a Democrat.]

Llike_an_old_rock_star....

2011-02-14T11:17:00.009-05:00

Like an old rock star who does not know when to quit:

This disabilities journalist continues to blog through the night to describe how 3-and 4-D technology will help elderly and disabled individuals lead better and more productive lives as a result of novel engineering techniques that make your head feel as if it will explode. Of course, the fourth dimension is Time.

You Can't Always Get What You Want

Bill

I am waving from over here trying to reply to your reply of my reply on the Voices of Central Pennsylvania site. Other readers: http://voicesweb.org/won%E2%80%99t-ride-%E2%80%98em-cowboy-my-final-column#comment-2634 Start at the beginning to keep up to date on my ongoing correspondence with Bill Eichman, President of Voices and its brilliant webmaster, regarding why I have stopped writing a column on disability and elderly related issues.

Joel

Regarding: "You Can't Always Get What You Want," I can.

Right now, I am publishing a blog on 3- and 4-D technology instrumental in improving the design of elderly and disability housing, a subject on which I have some experience since I live in housing intended for elderly and disabled people such as myself.

The blog will discuss such tools as:

Google’s Sketchup (available for free)http://sketchup.google.com/download/#utm_campaign=en&utm_source=en-ha-na-us-google&utm_medium=ha&utm_term=SketchUp
Second Life describes itself as "a free 3D virtual world where users can socialize, connect and create using free voice and text chat."

The free download does not occupy much computer room: http://www.amazon.com/You-Cant-Always-What-Want/dp/B0016CRWW0/ref=dm_att_trk3

.

Sketchup is a favorite. I just made my first 3-D drawing. It is not exactly a drawing. It is OY VAY! in what appears to be 40 foot 3-D letters. I can see Oy Vey! from:

Top
Bottom
Forward
Back

It iis a strange experience to draw huge letters and look at the drawing from underneath the letters, creating a paranoid fantasy of being crushed by letters (or more conventional objects like wheelchairs).

I make the letters take shape. Type fonts such as Arial black begin to take over my world.

Join me in my new world at Disability Beat Covers Virtual Reality. http://disabilitybeatcoversvirtualreality.blogspot.com/

Won’t ride ‘em cowboy: This is my final column

2011-02-05T09:13:00.001-05:00

Note: The following is the text of my February, 2011 column at Voices where I announce the end of my From Where I Sit column. The hard copy text, complete with a phograph of me, is available at newstands in Centre County. I am reproducing it here for two reasons. First a reader insisted that I was required to explain my rationale more fully or, in her words, "face a grilling." I therefore intend to call my next blog Grilling in which I not only explain but provide the reader with reassurance that the issues of the elderly and disabled will continue to be covered at Voices--only not from me. Not within the context of this From Where I Sit monthly column. Writers interested in covering such subjects are requested to get in touch with me at the email address below.]

The handler applies the fully-charged cattle prod to the rear of a bull bred for ferocity. The cowboy—Slim really is his name—holds onto his hat with his left hand. In his right hand are the reigns, two strips of leather held on tightly at first, but capable of falling apart to help the rider jump away from the bucking bull to safety after the regulation eight second ride is complete.

The maximum score is 100 points; 50 for the rider and 50 for the bull. A mean angry bull is the most desirable because he gives the rider the opportunity to make the most money. This bull is mean. When the bull jumps higher after the cattle prod, Slim smiles with optimism. The gate leading to the ring fails to open. Historically, when the gate sticks, a confined maddened bull has been known to break both legs of a rider. Slim, who attended rodeo schools, is aware of the danger.As a reporter at the World Series of Rodeo at Oklahoma City (before it moved to LosVegas), I am sitting next to the handlers on the inside wooden planks of the chute. It took considerable effort to get permission to be this close to Slim—close enough to watch his pupils dilate into huge ovals displaying a fear he cannot disguise. The lead handler asks Slim if he would like to wait 20 minutes before beginning the ride. Slim nods him off. The gate opens.

Sometimes it is prudent to know when to give up. I have been writing this column since October, 2009. One reader observed that my columns made her suspicious because of their apparent clarity, establishing a formula where I said clearly what I was going to write about and wrote it. She asked if I were hiding something amid this seeming clarity. I have been hiding my overall intention; namely, the necessity for the physically disabled, regardless of age, to achieve independence—independence for those of us whose bodies may not work, but whose minds do. The requirements for getting a good job include the tools to do the job, the income necessary to get off public assistance, and the opportunity to develop our talents so we can improve the nation’s economy. This is a complex set of tasks and does not fit neatly onto a piece of paper affixed with a magnet to the refrigerator.

For those of us unable to walk, hear, or see the first task of necessity must be to rid ourselves of anger or at least pretend it isn’t there. Whatever the virtues of expressing how I feel, I have learned that when I am angry in public, I am on the express lane to defeat.

The Roman poet Catullus wrote, “I love and I hate. Do not ask me why I do so, but I am in torment.” Often when I write this column I am overwhelmed by the fluctuations (depending on my mood over the day) of love and hate projected on to a specific person or situation. Often I write multiple drafts of the same column, each thousands of words long until the emotion subsides and I can describe calmly a discrete 800 word section of my overall objective.Today’s current political situation leads me to despair that independence for individuals with physical difficulties will not come in my lifetime. It will not come because Democratic and Republican leaders do not regard it as a priority given our country’s other pressing problems.

Fortunately, I have the opportunity to leave my anger with the present and work on a training program at the virtual reality lab where Dr. John Messner has been creating 3-D programs showing how to construct accessible buildings before workers even begin to dig the foundation. Specifically, I am working with Sonali Kumar on what she calls “the bleeding edge” of technology to design models for independent elderly housing.

I am providing advice based on my experience as a disabled person who lives in independent elderly housing. Instead of maintaining the self-destructive illusion that I know more than everyone else, I am returning to a land of technology where what I don’t know fills the air like the thick steam on the top bench of a Turkish bath. There is so much to learn and all of it will help my people—individuals with disabilities. It is time for this cowboy to stop riding. I do not have the energy to both write this colum and plunge into the future.

When I am sufficiently trained, I will report to Voices on what the future will be like.

—Joel Solkoff, author of The Politics of Food. Contact him at jsolkoff@gmail.com

Protect disabled, elderly from fires and disasters

2010-11-06T03:34:00.000-04:00

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 where 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 where I had worked in Research Triangle Park for two years (focusing on linking a computer to a telephone switch) when suddenly jobs in documentation that in one job interview I had been told was fated for life (gold watch and all) had disappeared. At the same time, my ability to walk 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.

Segregation threatens your soul

2010-10-01T04:12:00.006-04:00

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

“Trouble, trouble, I have had trouble all my days. / It seems like trouble going to follow me to my grave,” sang the great blues artist Bessie Smith. An African American, Smith’s skin color put her in her grave, according to the authoritative American National Biography: “On 26 September 1937, with Richard Morgan at the wheel, her car collided with a truck, parked without lights on the roadside at Coahoma, Mississippi, just south of Memphis. Because of her skin color, she was refused admission in nearby hospitals and therefore had to be taken to an African-American hospital in Clarksdale, Mississippi—over200 miles from the accident site. Never regaining consciousness, she died eight and a half hours after the time of the accident due to internal injuries and loss of blood.”

I am in the Corner Room having breakbreakfast and staring at two photographs. The first is Elliott Erwitt’s1950 photograph of a black man drinking from a segregated water fountain. Above his head is the sign “Colored.” To the left is another water fountain with the sign “White.” The white water fountain is refrigerated. The colored one is not.

When the photograph was taken, it was illegal for the black man to drink from the white fountain. If he had tried and been caught, the police would have arrested him and taken him to jail; he would have been tried, sentenced and imprisoned. In the segregated South, black men “who did not know their place” were lynched for less.

The second photograph is of the entrance to Ye Olde College Diner just up the street. Clearly, no human being in a wheel chair can enter even though we are celebrating this year the twentieth anniversary of the signing of the Americans with Disability Act (ADA) when the president said, “Let the shameful wall of exclusion finally come tumbling down.” At the College Diner, across the street from Penn State, the shameful wall of exclusion remains.

Why this form of State College segregation remains is the subject of this column. I compare the State College Diner to my experiences during the Civil Rights Movement in the South where, in 1962, at
the age of 14, I participated with two black ministers in a restaurant sit in at a bus terminal in Athens, Georgia. At the time I lived in Atlanta, where blacks and whites could not eat together in the same restaurant, sleep in the same hotel, go to the same bathrooms, attend the same schools, swim in the same pools, or marry each other. Integrated protestors were arrested for praying in white churches.

That year I attended the Ebenezer Baptist Church and watched Dr. Martin Luther King, Jr. preach a sermon on the spiritual effects of injustice which apply to the owners and patrons of State College’s Diner. The following year I heard Dr. King at the March on Washington say, “We can never be satisfied as long as our children are stripped of their self-hood and robbed of their dignity by signs stating: ‘For Whites Only.’”

Laws are not the solutions to all our problems. The loophole in the ADA that permits the Diner to be inaccessible to the disabled relates to buildings constructed before the ADA went into effect. The law could be changed. But does it need to be changed? If the patrons of the restaurant realized the assault on the dignity of human beings who happen to be unable to walk, the loss of business would force the owners to construct what could be a relatively inexpensive ramp.

If the cost to the business endangers its survival, the community can contribute to the ramp. There could be bake sales at religious institutions. Grant proposals could be written. What is intolerable is the on-going assault to the dignity of those of us who are unable to walk, see, or hear—the assault perpetuated and tolerated by those of you able bodied people who do not realize segregation exists here and now.

Do we really need more laws to protectthe disabled and elderly against the numerous daily forms of segregation you impose upon us? Didn’t God give you immortal souls and the injunction to do unto others as you would have others do unto you?

—Joel Solkoff, author of The Politics of Food. Contact him at jsolkoff@gmail.com
or at voicesweb.org.

Post Script: This election season has been disappointing. It is useful to remember that if we treat each other as human beings we can avoid expensive and unnecessary legislation.

Nevertheless, we must prepare for the next election. A new organization, Disabled and Elderly Informed Voters for Equal Rights (DELIVER), will endorse candidates and support legislation. Voices of Central Pennsylvania and its columnists are not permitted to endorse candidates or legislation due to its nonprofit status.

Meanwhile, this column at Voices of Centrral Pennsylvania provides detailed information on disability and elderly issues not available elsewhere. Medical suppliers, rehabilitation counselors, and others must advertise in Voices. As Benjamin Franklin said, “We must all hang together or we will all hang separately.”

Ask candidates their position on disabled, elderly voters

2010-09-02T20:16:00.000-04:00

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

“Who will protect us against the protectors?” Plato (428-348 BC) asks. Over the years, in a variety of situations, it has become useful to question what happens when people put in charge of helping others help themselves.

The question came quickly to mind Aug. 5 when I arrived in my power chair at the Spats Restaurant on College Avenue only to realize that I could not enter because there was a series of stairs. The previous week marked the 20th anniversary of the signing of the Americans with Disabilities Act (ADA) providing, among other things, wheelchair access to public accommodations. President George H. W. Bush said: “Let the shameful wall of exclusion finally come tumbling down.”

Here in State College, Pa., the shameful wall of exclusion continues in three prominent restaurants: Ye Olde College Diner, Baby’s, and Spats. They are exempted because they were constructed before the ADA went into effect. Today, access would be relatively easy because technology has developed attractive, low-cost ramps.

What makes my exclusion from Spats especially annoying is that the three people I was planning to see were disability professionals in town for a large autism conference—two of whom were reimbursed for the expense of their meals from their school’s budget on special education (that is, education for the disabled) and one of whom, an independent contractor with an autism patient who also has a physical disability, will be deducting the cost from her income tax.

There is arrogance here, especially profound because three individuals who are paid to help people in the disability community are unaware that it is immoral to patronize an establishment where disabled people cannot go. Imagine: when I was in the Civil Rights Movement and picketed a segregated whites only rrestaurant if I left the picket line and had lunch in the same restaurant I was picketing.

Only my insensitive disability workers did worse than that. They ate for free on subsidies paid for by federal and state funds—subsidies intended for the disabled. The federal tax code should be changed to prohibit deductions for otherwise legitimate expenses if the expenses are incurred in a restaurant that denies access to the disabled. The legislation might include a provision providing tax breaks when ramps are added to an establishment.

This is the first of my three-part series on candidates committed to bettering the lives of elderly and disabled voters here in Centre County or risk losing my personal endorsement. I am requesting that: Republican Rep. Glenn (“GT”) Thompson, the only candidate for federal office who as a physical therapist actually touched and helped heal disabled patients, promptly introduce legislation prohibiting tax deductions for disability professionals who purchase goods and services in non-accessible businesses.

Mike Pipe,T h o m p s o n ’s D e m o c r a t i c opponent, a former high level official in the Obama campaign and someone eager to prove that eventually the president will live up to his campaign promise(recorded on You Tube) to improve the lives of people with disabilities, request that the Obama Administration have the president sign an executive order prohibiting that federal funding for schools be used to reimburse special education teachers and others who incur expenses in non-accessible facilities. After all, Pipe agreed that Obama hasn’t lived up to his disability promises.

Rep. Joe Sestak, the Democratic candidate for U.S. Senate, who has been extremely helpful to constituents whose ability to breathe was being threatened by Obama Administration cutbacks in Medicare, use the powers of your current office in Congress to introduce legislation to ensure that our nation’s schools do not continue to subsidize discrimination.

Pat Toomey, the Lehigh-Valley-based Republican candidate for Senate, communicate. What are your views on Medicare, the controversial recess appointment of the new administrator of Medicare (an appointment whereby the president avoided Senate confirmation), and on the effects of competitive bidding on State College suppliers of oxygen, wheel chairs, and power chairs? In August, Toomey was 6 points ahead in polls that are unreliable because Nov. 2 is so far away. Centre County voted for Obama in the last presidential election and for Bush four years earlier. Toomey will answer.

Despite the fact that I am an Eleanor Roosevelt Democrat, the Obama Administration has done short-term damage to the disabled and elderly (especially those of us who are poor) that will have long-lasting negative effects, forcing people into expensive assistive living homes and needlessly robbing us of our independence.

I am focusing on candidates for federal office because the winner will vote on appropriations for Medicare and for medical equipment, may have direct oversight over Medicare and federal Medicaid policies, and will be dealing daily with Medicare and Social Security issues through constituent services offices. May the best man win regardless of political party.

—Joel Solkoff, author of The Politics of Food. Contact him at jsolkoff@gmail.com. See http://voicesweb.org/joel-solkoff-0. This columnist would dearly appreciate the pro bono services of an attorney specializing in ADA and Medicare issues. Voices of Central Pennsylvania is a 501(c)3 organization and as such does not endorse legislation. The views expressed here are solely those of the columnist.

Only revolution will liberate the disabled and elderly

2010-07-03T14:57:00.000-04:00

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

I have been trying to shield my readers (until the appropriate time, like now) from the clear purpose of this monthly column: To foment a peaceful revolution that will hereafter change forever the daily lives of individuals with disabilities and those who are aged. Miriam-Webster’s Collegiate Dictionary defines revolution as “a fundamental change in political organization; esp.: the overthrow or renunciation of one government or ruler and the substitution of another by the governed.”

Non-violent revolution is the way we behave as a nation when fundamental change is required. Anyone who has observed or participated in two of the great revolutions in my lifetime—the Civil Rights Movement and the Women’s Liberation Movement—knows that the ballot box is the ultimate arbiter of who governs whom. For this year’s election it is necessary to get our elected officials to understand that those of us who cannot walk, see, or hear or who have elderly bodies demand a new kind of government – a government that (given our demographics) will enfranchise us as a movement capable of determining current and future elections.

The problem with a column like this is that it risks a stridency too great to take seriously. People with disabilities such as mine are lucky to live here. State College and Penn State are more wheelchair accessible than any place else I have lived in the 15 years I have been disabled. Central Pennsylvania, especially the Office of Vocational Rehabilitation (OVR), has provided me with a better array of social services than anyplace else I have lived, including North Carolina, California, Virginia (by reputation, when I was applying to George Mason University) and suburban Philadelphia (which was awful).

I had wanted to write this column as a tribute to my OVR counselor Carla Roser who retired last month. Carla was too modest to consent to an interview, one that would have focused on what made her especially effective and why Central Pennsylvania’s OVR offices, based in Altoona, are so much more efficient than the rest of the Commonwealth and most of the country.

Praise aside, good is not good enough. Happy Valley and its environs may be better than most, but what this area and the nation lacks is a clear understanding of what disabled and elderly individuals need, why we must organize and vote as a bloc, how we should be the people who govern our lives—the principle of self-government is self-government—and why colonial rule (over disability and elderly groups and institutions) must end. The colonials are often kind-hearted-souls who are not disabled or elderly. Some, however, have behaved with a sense of noblesse oblige reminiscent of 19th century European colonialism.

My columns, including what it is like to have a disability, assistive technology for people who are blind and what it is like to travel with a disability, will continue to serve as groundwork. Do not be lulled into
thinking that a seemingly gentle column is not part of a clearly stated intention that you understand what kind of power we need and how we must work to get it.

Meanwhile, readers interested in how my thoughts are developing regarding the disability and elderly rights movement are urged to read Robert A. Caro’s Pulitzer Prize winning biography Lyndon Johnson,
Master of the Senate, for background on how our 36th president obtained the power to create the Civil Rights Act and Medicare.

I also refer you to Taylor Branch’s astonishingly well-written and detailed trilogy of Martin Luther King, Jr. and the Civil Rights Movement, a trilogy that describes how Dr.King used clear strategy to overcome.

Meanwhile, this columnist must exercise some restraint. My original intent for this summer was to list 10 things that need doing in Centre County so we know who our friends are, whom we need to vote out of office, where we need to picket and what we need to boycott.

Instead, I am simply requesting all candidates on the ballot here in State College, regardless of office or party, provide me with a written pledge that they will:

1) Only appear at political events or campaign locations that are wheelchair accessible

2) Use rudimentary Braille (inexpensive) located in a clearly identified location

3) Provide clear (but not necessarily expensive) signage and sign language and other interpreters when practical

Candidates, please send a copy of your pledges to the email address below. September and October issues of this column will list candidates providing pledges and provide comments on those who fail to reply.

Joel Solkoff wrote The Politics of Food. Contact him at jsolkoff@gmail.com.

Travel barriers limit lives of those with disabilities

2010-06-02T19:21:00.000-04:00

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. Contact meat jsolkoff@gmail.com. Or visit my blog: voicesweb.org/joelsolkoff

Technology allows blind people to drive cars

2010-05-03T19:36:00.000-04:00

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

Imagine racing a Ferrari F430 (worth $406,000) at nearly 182 miles per hour and being blind since the age of three. This event took place last month at an airport in Turkey where Metin Fenturk, a folksinger, broke the Guinness “world record for fastest unaccompanied blind driver” previously held by a British manufacturer. On winning, Fenturk said, “I don‘t knowi there are any words to describe this feeling. I am completely happy. It was really hard, like a dance with death:” [See http://voicesweb.org/driving-blind]

On a less-than-pedestrian note, Virginia Polytechnic Institute and State University(Virginia Tech) has made a major contribution to the National Federation of the Blind (NFB) challenge: Design an automobile for an individual who is totally blind to drive safely to and from work by oneself. “Can you imagine a blind person behind the wheel of a car?” the narrator of a video produced by Virginia Tech asks. “Well today it may not be long before you won’t need to imagine.” Virginia Tech’s vehicle was driven by a person who is totally blind and successfully passed a parking lot driving course of considerable complexity.

Virginia Tech’s Steven Mackay, at the engineering college, told me this month two Ford Hybrids are arriving to be retrofitted for people who cannot see. I have been trying frantically to understand the intricacies involved with this technology. My mind is overflowing with technical details I do not yet understand. Meanwhile, Mackay’s clear explanation will have to suffice:

“This laser sensor, mounted on the front of the…vehicle, operates similar to sonar. It sends out a laser beam that will bounce back to the device as it hits an obstacle. The sensor then figures out the distance to the obstacle by measuring the time of flight of the laser beam. As the laser sweeps the environment, the computer constructs a map of all obstacles around the vehicle.”

Here in State College, a discussion with Cary Supalo provides context to encouraging developments for career training for blind students and how Virginia Tech technology energized an NFB science camp when camp members lined up eagerly for their turn to drive. Supalo is president of the local chapter of the NFB, but he is best known for his Penn State career in chemistry. Supalo has a master’s degree on the subject at Penn State and is expected soon to obtain a doctorate and a job as a professional chemist.

Supalo‘s work to encourage blind children to take math, science and engineering courses has been exceptional. As someone who has recently begun a job [technically “a job training program” with the opportunity of a permanent position], I look with hope to Supalo’s lead.

My job for the Altoona-based Blair/Clearfield Association for the Blind is to find jobs for people who want to work but cannot see. Most people who are blind in Altoona and want work do not have the educational background to do anything but themost menial work. Altoona has a surplus of “able-bodied” u n e m p l o y e d workers who can’t find work. On the order of the ladder, in these still difficult economic times, people with disabilities are at the bottom. The immediate solution is to work to improve the economic situation as a whole throughout central Pennsylvania. As the expression goes, “All boats rise with a high tide.”

Meanwhile, the orchestration of Virginia Tech’s successful test has Supalo’s handwork written all over it. Supalo is an energetic leader. When I visited Supalo’s office, he was developing professionally required tests a blind chemist can perform independently. Supalo, who is charming and astoundingly energetic, comes closer to anyone I have met to having the charisma to lead the emerging disability rights movement—a movement that badly needs leaders.

The Jernigan Research Institute wrote the following about Supalo: “His loves are helping blind students expand their comforzones, assisting them to stretch their minto go beyond societal limitations placed on
them since birth and encouraging them to strive to follow their dreams.”

The best job a disabled person can have is one that is part of a career— well-paid, stable, leading to advancement and providing profession rewards. Our disability community through central Pennsylvania must work vigorously to change our area’s education system so students graduate from high school after mastering basic requirements so becoming a scientist is an achievable goal. As a society, we are wasting the talent of the physically disabled whatever their individual career goals. This waste is not only a crime; it is bad for the economy.

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

2010-04-01T10:43:00.000-04:00

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 jsolkoff@gmail.com. See more at Joel’s blog: .

Exclusive Interview with Rep. GT Thompson on his Rehabilitation Background

2010-03-06T11:58:00.000-05:00

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

MY CHOICE TO HEAD MEDICARE a.k.a. Administrator for the Centers for Medicare and Medicaid Services

2010-03-01T23:16:00.000-05:00

[The following is my March, 2010 column for Voices of Central Pennsylvania see http://voicesweb.org/archive/10mar/10mar-community-lifestyles.pdf (end of pdf.) or visit a newstand in Centre County.]

Strangers, snow and rehabilitation

From where I sit

Thanks to a failure to act in January, the Obama administration has made a serious
mistake in allowing competitive bidding for durable medical equipment such as oxygen
canisters, wheelchairs, power chairs and other devices.

I believe that if President Obama had a Medicare adviser of stature to explain the
consequences, Obama would not have made this mistake that will continue to hurt
people with disabilities—including me.

As a result of this competitive bidding process, T&B Medical and Dick’s Homecare—the only two companies providing power chairs, scooters and other equipment in State College—are in danger of losing to outside competitors, including
competitors outside the state. What they are at greatest risk of losing are contracts to provide Medicare recipients such as myself with equipment and maintenance reimbursements.

Maintenance is the issue I worry about most. Some legislators have put together a plan, supported by a sizeable non-partisan group in the House, that would end the bidding process.

One of the authors of the legislation is Rep. Glenn (“GT”) Thompson, who represents Pennsylvania’s Fifth Congressional district, of which Centre County (his home)
is one of 18 counties in a huge, 11,000 square mile district.

I asked Tina Kreisher, Thompson’s press secretary, for a 20-minute exclusive telephone interview because I thought we could cover the details on Thompson’s health care background so readers can see the link between what our congressman knows and
the unsolved problems he is equipped to solve.

Thompson and I spoke by telephone for over an hour on Tuesday, Feb. 9 at 6 p.m. I did not realize the degree of detail we would get involved in, especially since Thompson is himself the father of a disabled Iraqi war veteran. Thompson does not make a practice of talking in public about 22-year-old Logan, who was wounded when shrapnel and explosives caught him by surprise.

Thompson called me from Tucson, Ariz. where he was attending Logan’s graduation from Army intelligence training, an experience that filled him with the special gratitude we in the disability community feel when someone we love makes progress toward
independence. The two feet of snow in Washington had left him stranded in Tucson and he observed, “There are worse places to be stranded.”

Thompson’s advancement in health care followed two tracks. Academically, he received a bachelor’ degree from Penn State in Therapeutic Rehabilitation, a master’s degree from Temple for Health Science Recreation and a certification from M a r y w o o d
University in Nursing Home Administration.

M e a n w h i l e , Th o m p s o n ’s career involved working in central Pennsylvania a a residential services aid, a recreation therapist and a rehabilitation services manger at Susquehanna Halth Services in Williamsport.

Thompson was at one time an orderly at Centre Crest Nursing Home, and for three years cleaned out bed pans, changed patients out of soiled clothes and changed bedding. He worked with his wife Penny, who did similar work as a nursing assistant.
At the same time, Thompson’s mother was a patient at Centre Crest’s Alzheimer’s facility.

Glenn Thompson [everyone calls him ("GT")] developed a reputation for good work and excellent managerial abilities, including people skills. When GT visited State
College on Labor Day weekend, his charm was evident. He talked about health care in the social hall and bingo parlor (across the hallway from where I am keyboarding this
column) of Addison Court, which is an apartment house for senior citizens and those with disabilities. The Congressman arrived for the 8 a.m event just as the Webster’s coffee and goodies arrived. (It helps turnout for these events when food is present and Elaine Madder-Wilgus has been most obliging in providing the coffee
Thompson was so grateful to drink.) The 10 additional members of the audience were mostly men and women in their 70s, 80s and 90s.

GT charmed everybody—83-year-old Lilian Huffman, put her hand on my shoulder and said, “I like that fellow” and Lilian is very influential at Addison Court. Win Lilian Huffman and you have won votes at Addison Court. Lilian is a registered
Republican who voted for Obama.

In my interview with Thompson, I asked about each portion of his 31-year career, which ended when he was supervising 25 rehabilitation specialists and coming up
with strategies for improving ongoing rehabilitation.

For me, sitting in a power chair right now, Thompson is the guy to know. I am at a point where I can now go back to rehabilitation to Dr. Colin McCaul, a brilliant rehabilitation physician at Healthcare South, because I recently passed a cardiac stress test. Since I cannot walk, cannot stand without holding on to something and can dislocate my shoulder if I throw my right arm straight in the air, I need a specialist to adapt special exercising tools so I can get the cardiovascular exercise I need. In my considerable experience with physical rehabilitation in three states, the people who do
the hands-on work, the people who touch my body to show me how to do special exercises, when touching is appropriate (a pat on the back is always useful)—these people are uniformly kind and helpful.

I am impressed by the kind of work Glenn Thompson did and taught other rehabilitationspecialists how to do. Based on his experience, his testimonials, his conversation and his education, I feel sufficiently trusting to put my exercise program in his hands if he has time.

Obama, the president I helped elect, is doing some truly bad things to Medicare that will have severely negative effects on the disabled. They have potentially disastrous affects on me. I use my power chair frequently; I require battery replacements every six months. What if the competitive bidding process the Obama administration
is implementing results in requiring me to get batteries from an out-of-area supplier and I have to wait too long?

Right now, Travis would be right over with the batteries. With competitive bidding, I have to depend on some anonymous supplier. During that wait, if my batteries won’t take a charge and I soil my bed repeatedly, I might have to move to Centre Crest, which would severely limit my opportunities.

The failure of the Obama administration to reach across the aisle, as it promised to do, is shocking when Glenn Thompson’s special knowledge is going to waste. At the time of my interview with Rep. Thompson on Feb. 6, the President had yet to announce
an Administrator for Medicare and Medicaid. Medicare is the largest health insurance company in the United States. Medicare needs an administrator who can be confirmed by the Senate. Thompson would be confirmed by the Senate.

Or, President Obama, please find him a better job. Or wake up the Republican House Leadership and have him put on the Ways and Means Committee where he will have oversight over Medicare. Given the overwhelming Republican composition of the Fifth Congressional District, Thompson will eventually gain the seniority he needs.

I don’t want to wait. I want Thompson‘s special skills available to me now because I believe he can assure me a more secure future.

—Joel Solkoff, author of The Politics of Food ,can be reached at his Voices of Central Pennsylvania blog http://voicesweb.org/blog/1242

Strangers and Snow

2010-03-01T18:30:00.000-05:00

From where I sit stuck in the February snow on the Allen Street hill facing home after breakfast at Webster’s Café and Bookstore, the words come to mind like a mantra that has governed the last 15 years of my life as a man who cannot walk, “…I have always depended on the kindness of strangers."

The words were originally made famous by Blanche Dubois in Tennessee Williams’ emotionally charged “Streetcar Named Desire.” The words evoked a spirit of hopeless dependence.

For me they convey very much the opposite. For me (a paraplegic with a bad right arm) the kindness of strangers is a remarkable blessing. In the past 15 years since I became unable to walk, I am no longer surprised by incidents, such as today’s:

A woman driving north on Allen Street:

• She quickly parks.

• Gets out of her car.

• Pushes my power chair out of the snow.

Unasked people open doors for me and will offer to perform helpful tasks which they do, such as going to the grocery store for one needed item (only to be presented with a week’s groceries paid for by my benefactor).

This Kindness is especially intense in Central Pennsylvania because of the strength of family-ties, clearly observable in local nursing home reception areas. This kindness has been extended to me throughout the United States. My 1993 Buick with its wheelchair lift has taken me to California and back twice. Strangers who helped me along the way. I realize that some individuals have experienced bad behavior as a consequence of being disabled. For me strangers are my guardian angels.

As I see it, one of the unwritten rules of the kindness I have experienced is to try not being in the position of having to ask for help again. For example, if the batteries in my power chair are low [which they are, hey, Travis] I can call Travis at T&B Medical and before the batteries are totally exhausted they have been replaced by new ones. Without replacement, there is considerable danger involved in leaving me without power.

USED TO BE ONLY THE GOP TRIED TO DESTROY MEDICARE

2010-02-04T01:23:00.000-05:00

[MY FEBRUARY 2010 COLUMN FROM VOICES OF CENTRAL PENNSYLVANIA]

From Where I Sit

“…Dr. [Margaret] Pfanstiehl…said her goal was to engage the sight-deprived to‘live a 20/20 existence without 20/20 vision.’”

--from The Washington Post.

Dr. Pfanstiehl, mourned last month in a Maryland ceremony, was blind and promoted audio description technology to the point where a blind patron can hear audio description of dance.

From where I sit on my $5,000 power chair, two issues come to mind immediately. First, President Obama, the man I supported to be president, plans to reduce the Medicare budget by nearly half a trillion dollars. These cuts, intended to help pay for health care reform, have come on top of procedures that hurt me and others who are elderly or disabled. The argument is that current and future cuts will reduce “fraud
and abuse.” Attorney General Eric H. Holder, Jr.’s fraud and abuse prosecutions are notable for their relative insignificance.

The second issue that comes to mind is when elderly and disabled voters are organized,
they constitute an effective voting bloc. As I write this column in Addison Court in State College, I note that Addison Court has about 90 residents who are 55 or older or who have disabilities or impairments.

Most of us are registered and vote even in low-turnout elections. Addison Court now has a tradition of iinviting candidates to inform our residents about the issues. To date, residents (eating
Elaine Mede-Wilgusr donated food from Webster’s Café) have heard R e p r e s e n t a t i v e
Glenn (GW) Thompson, his challenger Mark C. McCracken (currently a Clearfield County commissioner),
Assemblyman Scott Conklin, State College Mayor Elizabeth Goreham, and four State
College Borough Council candidates representing both major parties.

When George Bush was president, he attacked Medicare, creating barriers that
made it more difficult for eligible citizens to obtain medical oxygen for homecare,
wheelchairs, power chairs and scooters.

To take me as an example, in March 2008 a power chair was prescribed for me after (in-patient
hospitalization at Health South). I received a thorough evaluation from physical and
occupational therapy. My physician, Dr Colin McCaul, a specialist in rehabilitation,
prescribed the chair because he said it would be useful for me to have more support
for my right arm, helping to avoid surgery.

It would also be useful teaching my left arm how to perform functions previously
done by my right. The chair’s controls are on my left causing much trouble
before I finally learned how to drive lefthanded.

Medicare required that I go through an hour-and-a-half test with a rehabilitation
specialist. After passing the test, I saw Dr. McCaul in the hallway. The rehabilitation specialist
emphasized the importance of the doctor scheduling a one-on-one appointment devoted strictly to why I need a power chair and to be followed by a paper prescription with the magic words on top “after a one-on-one appointment.”
Since I had seen Dr. McCaul immediately before the test, he said it wasn’t necessary
to meet again. He would take care of it. Medicare, which has been consistently negligent in explaining the rules to physicians rejected the prescription and would not pay. The prescription was not written in keeping with Medicare regulations. [How I obtained payment from an agency other than Medicare
is a story for another time.]

When Obama became president I thought he would reverse those policies. He has
made things worse. Especially distressing is that while Obama has been busy with health
care reform in which Medicare was a significant factor, he had not named a director of
Medicare, the largest health insurance company in the United States. Assistive technology
(which gets me from bed to the bathroom reliably) generally helps the disabled
avoid assistive living (which costs Medicare more than $40,000 extra per person
per year than independent living. Also, independent living
allows a greater sense of independence and helping to improve morale.

I said in my last column that I would discuss John Wayne’s comment that after
cancer surgery he did not feel sorry forhimself, despite the temptation. Wayne
proved it by getting back to work, filming a movie only two weeks after surgery.
For those of us who are disabled, not feeling sorry means having the equipment to
get a job, equipment suc as that listed above.

Assistive technology for the blind especially have resulted in
very exciting developments Disgracefully, technology that is very
useful to help individuals who are blind gain indepence
is not paid by Medicare. We also need technology for those who cannot
hear—only some of which is paid for, including controversial cochlear implants.

The most effective message to the Democratic Party is the creation of a bloc
within the party that will vote strictly on disability and aged concerns—a bloc which
will flirt with the Republicans if it does any good. [It should go without saying that this
bloc would include disabled veterans, but all too often veterans are neglected even
when intentions are best.]

—Joel Solkoff, author of “The Politics of
Food.” Contact him at jsolkoff@gmail.com

Background Whimsy for February 2010 Voices Column above

2010-02-03T23:33:00.000-05:00

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.

Firefighter Love: From Addison Court Report February, 2009

2010-01-29T22:16:00.001-05:00

[Note: Addison Court is an independent living facility in Downtown State College for citizens aged 55 and older and individuals with disabilities. Many of its residents are aged 70, 80, and 90. Last year we had problems with faulty fire alarms which demonstrted residents did not know what to do when the alarm went off at 1:30 in the morning. The residents formed a fire safety committee with wardens to provide assistance on each of the building's 8 floors. We were trained by Steve Bair, Council of Governments Director of the Office of Fire Administration. A major part of the training consisted of what to do when the excellent Alpha Company, four blocks away, comes to help us in the event of fire. Alpha's Chief is Keith Yocum]

Hug a Firefighter Two Days After Valentine’s
at Noon or 6:30; Get a Bowl of Chili

This invitation has 6 parts (some of which the author did not complete because he is too wordy):

Details of the Tuesday February 16th event at the Addison Court social hall. There will be two sittings; Noon and 6:30 PM. Feel free to go to one or the other and fill out the signup sheet. Be there or be square.
Why hug a firefighter (male or female) from the Alpha Fire Company’s Main Office on Beaver and Atherton. [No question mark required.]
What to do in the case of a fire.
Come spring you can bring your grandchildren to the fire house and see the pretty trucks. When 83 year-old Lillian Hutchison swings down the fire pole I want to take a photograph.
Participation as a fire warden—the Arnold Addison Court Fire Safety Committee, Carol Ames co-chair, needs you to volunteer as a part time FIRE WARDEN so we can have back up wardens in case your floor’s regular fire warden decides to spend two days gambling in Harrisburg. Please give Sherry your name and I will get back to you.
As my maternal grandmother once told me (and she was a wild one) when it comes to hugging, be moderate.

Details:

One hundred bowls of Webster’s Bookstore and Café’s famous vegetarian chili will be served at the noon and 6:30 sittings.
That chili will be served to our frontline firefighters, you, Steve Bair, Council of Governments Director of the Office of Fire Administration, Alpha Chief Keith Yocum, Alpha’s Jackie Richardson, and government officials.
Residents are asked to provide additional food and cash donations.

In the event of a fire:

Call 911 and report (even if you are not sure if someone else has reported). Addison Court is a safe building. It has an excellent sprinkler system. The biggest danger to residents is if we panic and do not rely on our fire wardens and most importantly the men and women of Alpha Fire Company to come and tell us what to do. Even on the 8th floor, Alpha firefighters will know how to get you and your power chair safely out of the building.
Relax. Stay in your apartment and wait for your floor’s fire warden. It takes fewer than 10 minutes for Alpha firefighters to get in their trucks and come here.

During that time:

Do NOT take the elevator. Do NOT go downstairs. Do NOT evacuate the building. Listen to your fire warden who may decide to have you move to the stair well to wait for Alpha. If you move, be
sure to close your door. One reason it might be a good idea to move is because there might be smoke
and staying on your floor but moving to a stair well where there is no smoke will make your
breathing easier.

**Note well; Your February 16th hug will not save your life. It will make you feel better to know
you expressed appreciation before you needed help.

--Joel Solkoff, co-chair, Arnold Addison Court Fire Safety Committee.

Kvetzing in Centre County, December 2009 Version

2010-01-27T16:58:00.000-05:00

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

2010-01-25T19:17:00.001-05:00

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

2010-01-25T15:22:00.000-05:00

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

2010-01-24T22:34:00.000-05:00

From Where I Sit (published in October, 2009) :

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—
Sally’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.

--Joel Solkoff is the author of The Politics of
Food. Contact him at jsolkoff@gmail.com.