Post-Polio Rehabilitation and Research Service
Kessler Institute for Rehabilitation
Saddle Brook, New Jersey
Department of Physical Medicine and Rehabilitation
New Jersey Medical School/UMDNJ
Newark, New Jersey
Please address correspondence to: Dr. Richard L. Bruno, Post-Polio Rehabilitation and Research Service, Kessler Institute for Rehabilitation, Saddle Brook, New Jersey 07663.
We find ourselves at an extremely interesting and extremely extreme point in our nation's history. The pendulum of what American's believe government should do has swung all the way from FDR's New Deal, gaining momentum as it flew past LBJ's Great Society to hit Bill Clinton squarely between the eyes. In listening to the political rhetoric since last year's Republican coup, I believe that not only have the times changed but also that time itself has changed. I have the feeling it is not June 24, 1995. It feels to me as if the clock has been turned back exactly forty years. So, put on your poodle skirts, slick back your D.A. and let's return to those thrilling days of yesteryear so we can view the childhood and adolescence of rehabilitation through the eyes of those who have grown up with it: the survivors of America's polio epidemics. Let's see what lessons have been learned, now that both the polio poster children and rehabilitation have reached mid-life, and ask this most important question: Given the current ideological timewarp, will polio survivors - will rehabilitation itself - have any future at all, let alone enjoy their golden years?
So it's Friday, June 24, 1955, and everyone likes Ike in these 48 United States. To date, only a California politician named Douglas and the victims of Joe McCarthy hate our Vice-President. Bob Dole is a practicing lawyer in Russell, Kansas ten years after his spinal cord was damaged during a mortar attack in Italy. Little Newtie Gingrich turned twelve just last Friday. I see him praying fervently in his sixth grade classroom that God make Congress understand that U.S. troops should not be keeping the peace in Korea.
In 1955, polio has been at the forefront of our nation's consciousness for more than twenty years. Rehabilitation professionals are intimate with the literature on polio, its symptoms, pathophysiology and treatment. Two years ago, they read in J.A.M.A. that at least 39 percent of those having had non-paralytic polio showed measurable weakness in at least one muscle group, and 43 percent reported "increased fatiguability," as much as six years after their acute polio [1,2]
These findings were not surprising. As early as 1940, David Bodian concluded that at least 60 percent of motor neurons had to be killed by the poliovirus for there to be any symptoms of weakness. But, even more important, Bodian found that poliomyelitis was an afterthought of the poliovirus. He concluded that an encephalitis exists whenever the poliovirus enters the CNS "whether symptoms (of paralysis) are present or not."  This polioencephalitis was found to consistently and often severely damage specific brain regions: the reticular formation, hypothalamus - even the basal ganglia.  This damage was invoked by Bodian and others to explain the "fatiguability and fleeting attention" that were seen to persist for months after the acute poliovirus infection. 
Unfortunately, these important facts about polio, along with many others, are about to be erased from the consciousness of rehabilitation professionals. Why?
And, the ubiquitous symbol of 'them,' the adorably pitiful poster children of the National Foundation for Infantile Paralysis, have done their job well. Clad in heavy metal braces, leaning tenuously on their crutches, they called down from their posters to America's mothers and fathers, saying: "Give money to find the polio vaccine. Don't let your child become crippled, like me!" But, it's 1955 and the vaccine has been found. The poster children are needed no more.
So it is not surprising that merely having had polio, let alone not recovering completely from paralysis, are cause for both shame and shunning. Polio survivors and their entire families are often shunned for having been tainted by the 'dreaded disease.' Braces and crutches are certainly cause for shunning, repulsive reminders of our own physical vulnerability and of the medical profession's shame at its failure to actually cure polio.
Thus polio survivors are taught that if they are to be accepted back into society, they must become 'normal' again. They must work hard and then harder in physical therapy to rid themselves of the wooden and steel stigmata of the terror that is polio. If they are to function in a totally inaccessible world, even paraplegic polio survivors must be able to walk.
So, polio survivors do work hard, harder than anyone ever has. They discard their braces and crutches. Then they go even further. They go to college, when other Americans only finish high school. They marry and have children. They work more hours of overtime and take fewer sick days than non-disabled workers.  They are hard-driving, overachieving perfectionists who become the leaders of their communities, their professions, the chief executives of the largest corporations. [7,8] Normal? Polio survivors transcend mere normalcy to become America's best and brightest as our country's clock runs forward.
During the next decades America - along with its 1.63 million polio survivors - happily forget about polio as we experience wonderful advances in rehabilitation and violent changes in our society:
But, in 1980 America's clock stopped moving forward and began to actually run backward. An old rhetorical cold warrior became President by asking us to remember how happy we were in 1955 watching - and he believed living - "The Adventures of Ozzie and Harriet."
But, for America's polio survivors, the clock had already been running backward. They were being reminded of a 1955 that was not happy. Forty years after polio, their bodies were beginning to break down as a direct result of the paradigms of the 50's. Society's Paradigm of Normalcy, applied so successfully by polio survivors, was now extracting its price in disabling fatigue, muscle weakness and pain.  Polio survivors were losing the very abilities that allowed them to appear normal, that prevented shame and shunning, that freed them from institutions and allowed them to pass for normal, to become one of 'us.'
But today, in 1995, the plight of polio survivors is of no interest to America. Why? Because it's 1955 again. Polio has been conquered and the poster children are gone. "Forget about polio," says our society. The National Foundation for Infantile Paralysis, now the March of Dimes Birth Defects Foundation, was asked to fund research on Post-Polio Sequelae ( PPS). "No," said the March of Dimes, "Polio is gone. We're curing birth defects now. If we help polio survivors, our donors will become confused. Why don't you ask Congress for help with this orphan disease?"
So, every year since 1985 Congress has been asked to set aside funds for research on PPS, just one dollar for each polio survivor. And every year Congress says, "No. There will be no set aside. The few remaining polio survivors will be dead soon anyway. Why don't you study an important disease or ask a private foundation for research funding?"
Of course, the 'few remaining polio survivors' conservatively number more than one and a half million. Polio is still the second most frequent cause of paralysis, after stroke.  And, polio survivors are hardly moribund; our typical patient is a working mother of 48. Polio survivors are still America's best and brightest, both the foundation and the leaders of our society. But these facts are of no importance. The clock has been turned back and the paradigms of the 50's have returned:
The senior Senator from Kansas is running for President, again. Why? Because of his vision to lead our country forward into the new millennium? No. And not even because he wants to lead America back to the glorious 50's. According to Senator Dole's niece, Nancy Poche, "He still has this one thing he needs to do. He's still proving that he's not handicapped."  Bob Dole is clearly following the Paradigm of Normalcy: Crippled is unacceptable, normal is necessary and only achievements above and beyond normal can make 'the handicapped' acceptable to society. As we have seen once before in this century, only being elected President of the United States can convince a disabled man that he is normal again. 
But, you know, it would be much less expensive to forgo rehabilitation completely and simply institutionalize all of those too disabled to work. This will be an about-face from current policy, where the only people who shouldn't be institutionalized are the homeless and the recently reinstitutionalized mentally ill. But, such a policy reversal could be a deficit busting bonanza if we heed the advice of New York's Governor and require that residents of homeless shelters pay rent. Imagine the tremendous cost savings to society if the government stops paying for rehabilitation and actually makes money by collecting rent from those it institutionalizes.
Representative Armey and his troops have also stated that everyone who is not 'us' - that is white, working, born-again, non-disabled males - is not a 'true' American and should be regulated - that is shamed, cured or institutionalized - into normalcy. However, all regulation of 'us' - that is white, business-owning, non-disabled males - should be removed. Clean air and water statutes, safe food regulations, and especially OSHA (including its new repetitive motion disorder guidelines) should be eliminated because they constrain the operation of the free market. Can repeal of workers' compensation, child labor laws and the spendthrift A.D.A. be far behind?
But think about it. The elimination of regulation should be a boon to the medical industry in general and rehabilitation in particular. Just think of how much carpal tunnel syndrome we will be treating. However, the people most affected by eliminating regulation will be 'them:' workers with no clout, no voice, no cash to pay for a $500-a-plate campaign fund raiser for Congressman Armey. Their medical insurance will have been lost along with their jobs and government funding will no longer be available to pay for rehabilitation. There will be nothing left for 'them' to do but beg for spare change to pay rent at the shelter.
It is vital that each one of us remembers it is not 1955. No matter how loudly the strident and self-assured voices across the Potomac proclaim that they are restoring the old world order, the clock has not been turned back that far . . . at least not yet. It is still 1995, where we find ourselves at an extremely dangerous point in the life of our nation. The pendulum of what Americans believe government should do and our nation should be is swinging back to a simpler and more simplistic time. Will polio survivors and rehabilitation have any future, let alone their golden years? It is up to us, as individuals, rehabilitation practitioners, and members of this Congress, to insure the future by not allowing the pendulum to swing back and by preventing America from reverting to the paradigms of the 50's.
Further, promoting Paradigms of Quality will have effects far beyond our clinics. Our philosophy of quality of life places us in the eye of the vitriolic hurricane of debate about life itself. Should an elevated a - fetoprotein be an automatic criterion for abortion because no child with spina bifida could possibly have quality of life? Should a C2 quad, like Christopher Reeve, or woman in Wisconsin with CP or the paraplegic director of a post-polio service - be allowed or even assisted to die because having any disability is, as one insurance company describes it, "a living death?" 
Our unique experience and philosophy can help this society make reasoned decisions about whether life should end when its quality is gone. In the process, we will begin to eliminate society's notion of disability as "a living death." [14,15]
In 1995, at this extreme point in the life of our nation, we have three choices: We can react, revert and return to "The Adventures of Ozzie and Harriet;" we can remain in the present, recline and retire with "Rosanne" and "ER;" or, we can can reject 'us versus them,' normalcy, shame, inhuman institutions and simplistic cures. We can remember our past, remake our present and restore the possibility of a future - and even golden years - for polio survivors and for rehabilitation in America.
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Document Reference: <URL:http://www.zynet.co.uk/ott/polio/lincolnshire/library/harvest/coulter.html>
Created: 16th January 1997
Last modification: 29th January 2010.