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The Disabled, the Disallowed, the Disaffected and the Disavowed

1996; Lippincott Williams & Wilkins; Volume: 38; Issue: 3 Linguagem: Inglês

10.1097/00043764-199603000-00008

1536-5948

Nortin M. Hadler,

Organizational Downsizing and Restructuring

Listen to the debate on national priorities. One of the most contentious of issues, inexorably, is making its way to the forefront. How much help and caring do we, the advantaged, owe those who are not providing for themselves? And how do we distinguish those who are deserving from those who are lazy, unworthy, or otherwise taking advantage? This second dilemma strikes such a chord of anger in the western breast that it overwhelms consideration of the first. It did so a century ago when the solution we live with today was crafted; we purport to readily indemnify only the disabled for they, surely, are worthy. But that has not turned out to be a solution, at least not one that readily serves those who perceive that they are disabled or that rests easily on the national conscience. We will do no better unless we surmount our preoccupation with the unworthy. To do so, "disability" must be demystified. The Prussian Legacy Many a human price was paid for the sake of the industrial revolution. For one, all laborers came to live in dread of loss of income. Without money, how could an urban worker survive? The English Friendly Societies, German Krankenkassen and French Mutualité1 developed, usually trade based, so that artisans and more advantaged workers could purchase insurance that would provide some "sick pay," but not medical treatment, should illness force them out of work. Beyond fear of the loss of income consequent to illness, catastrophes such as dismemberment, blindness, and death plagued the workplace. Most workers purchased insurance that provided for burial; survivor benefits were beyond reach. Was there no recourse for the maimed other than to join the widows and children on the street?2 The answer was a resounding no; common law placed the worker at an insurmountable disadvantage in gaining redress.3 In all of this lay the seeds of reform. But there was no clamor to return to an earlier paternalism. Rather, there was a demand for the provision of social protection as a right rather than as a charity. Bismarck fashioned a "welfare monarchy" to quiet labor unrest, maintain production, and avoid social democracy.4 Lloyd George relied on the Prussian precedent, carrying the day in the far more participatory British politic by arguing that a stabilized workforce was the secret to industrial as well as military might.5 By 1911 both Britain and Germany had crafted comprehensive social welfare schemes with disability insurance as their centerpiece. The German version swept across western Europe; it reached the United States piecemeal over the next 60 years6 and Japan abruptly after World War II.7 In spite of some experimenting,6,8,9 the Prussian paradigm will escape the century relatively unscathed and etched into international common sense. The frame of reference for the development of the Prussian paradigm was the Victorian taxonomy for the "street people," who then made up some 15% of the population of London.2 These unfortunates were widely held to consist of three categories of humanity: those who can work, those who can't work, and those who won't work. The existence of the first group was rationalized by arguing that fear of unemployment nurtures a willing and compliant workforce. Therefore, some number of capable workers, who "can work" and want to work, must suffer among the street people while they seek employment. (Today, unemployment insurance softens that blow.) "Those who can't work" were the disabled; only the fate of the disabled working man was seen as unconscionable, particularly if the disability was a consequence of the work he had burdened. "Those who won't work," the unworthy poor, were equally difficult to define, but the Victorian conscience could countenance ignoring some worthy poor if that was the price of affording no comfort to the unworthy. The Mindset that is Workers' Compensation Insurance Aside from the fact that the United States still has no universal health insurance, America's approach to providing for those who "can't work" is the Prussian paradigm (Table 1). There are all sorts of econometric issues that pale next to the nemesis the paradigm presents to clinical medicine (Table 2).TABLE 1: The American Form of the Prussian Paradigm for Disability InsuranceTABLE 2: The Three Clinical Paradoxes Lurking in the Prussian Paradigm for Disability InsuranceWorkers' Compensation insurance arrived on these shores in 1910. There followed such controversy and legislative wrangling that the American program had to be fashioned state-by-state over decades. This is the most munificent component of the Prussian paradigm as it indemnifies wages. The injured worker is to be provided all of the medical care that money could buy, is to suffer no loss in wages while healing, and is to be compensated for earnings lost in the future if prior healthfulness is not regained. Straight forward? Hardly. Workers' Compensation insurance has seethed with contentiousness and has since the earliest days; we have Kafka (who was a functionary in the Workers Accident Insurance Institute of the Kingdom of Bohemia in Prague from 1908 to 1913) as eyewitness.10 The definition of "injury" proved particularly pressing in America. Violent traumatic events were readily covered. But what if the incapacity commences at work in the absence of a violent event, or even a discrete unusual precipitant? Realize that Social Security Disability Insurance was not enacted until the 1950s. So for half the century, the only legislated medical insurance, let alone disability insurance, available to the American worker was the Workers' Compensation program if he lived where it had been enacted. No wonder the term "rupture" took hold in our vernacular both for inguinal herniation and, in the 1930s, for backache.11 This expansive conceptualization of injury is pervasive, tenacious, and inventive today. Otherwise such a new age sophism as a "cumulative trauma disorder" or, its handmaiden, epidemic "carpal tunnel syndrome," would seem counterintuitive.12 Instead, such neologisms are the door to compensability. Passing through the door is another matter. An enormous industry has developed that has rendered access to indemnity awards tumultuous.13 But there is no reason to impugn the motivation of the claimants in the evolution or perpetuation of this industry.14 They find the challenge of overcoming their regional musculoskeletal symptoms to perform in their workplace insurmountable. What option is available to them other than redress for injury under Workers' Compensation? Social Security Disability Insurance? Hardly. To qualify, one must be perceived to be so ill that any employment is prohibitive. Few with backache or arm pain consider that more than a specter early on in their illness. Likewise, few claimants realize that the process of seeking redress for an illness like backache under Workers' Compensation can prolong the illness15 and, if healing is not spontaneous, can confound it as well. That is the Procrustean nature of the "maximum medical improvement" tenet. Workers' Compensation is the prototype for turning diagnostics and therapeusis into a contest: The worker's perception of "injury" is challenged whenever there is no violent precipitant. If the illness persists beyond some preconceived notion of prognosis, the claimant's motivation is questioned. If a claimant refuses an intervention, the veracity of symptoms rather than the advisability of the intervention is called into question. No wonder discectomy in all its variations stalks the back of the American claimant more than the American patient and strikes in the United States more often than anywhere else in the world.16 Similarly, clusters of American workers are now at risk for multiple mutilating surgical attacks on their putative "cumulative trauma disorders."17 I decry the expansion of the "injury" rubric; the expansion has proven counterproductive for the ill workers and profitable for the establishment charged with returning them to work. In fact, I have difficulty discerning much at all that is redeeming about the workers' compensation indemnity scheme. However, the thesis I am developing here only assaults the applicability of the Workers' Compensation mindset to illnesses that lack violent precipitants. The Vortex of Disability Determination With the first two clinical hurdles behind (Table 2), the injured worker emerges into the same Kafkaesque world that engulfed the Social Security claimant from the outset, the world of disability determination. For some, sadly, there is no issue. These are those who are so devastated-by illness, by injury or by iatrogenicity-that their work incapacity is undeniable. Fortunately, they are the exceptions. Most claimants have to convince some bureaucracy, paid to disbelieve, that they are too ill to perform in the workplace at all (for the Social Security scheme) or at their prior level (for Workers' Compensation insurance). The rules for this contest are part of the Prussian legacy: so as not to be duped by "those who won't work," the determination is to be based on "impairment." The "impairment rating" scheme stands in testimony to the tenacity with which scientific reductionism controls our reason. The idea is that important symptoms can be validated by the presence of important pathoanatomy. Conversely, symptoms are predictable from physical signs or radiographic, chemical, serological, or physiological abnormalities. If the abnormalities are of sufficient magnitude, even the illness of work incapacity can be predicted. Thus, the complicated challenge of disability determination can be vastly simplified by impairment rating: to know the trees is to know the forest. Impairment rating is a sophism; almost no measure of musculoskeletal, or for that matter cardiopulmonary, pathophysiology has sufficient predictive value to be useful for disability determination.18 By the time Franklin Roosevelt assumed the presidency in 1933, disability insurance was already a pressing concern.19 But no solution was forthcoming for another two decades. The debate over disability determination-over how to ferret out those "who won't work"-became the stumbling block for legislation.20 Borrowing from the Prussian legacy, Congress envisioned using medical factors as the validating test. Numerous physicians testified before congressional committees that medical determination was not up to the task. Then Congress found it in its power to override these testimonies and once having done so, silenced the debate. In fact, the American Medical Association began producing its "Guides to the Evaluation of Permanent Impairment" in 1958, close to the production date of the first "Listing of Medical Impairments" by the Social Security Administration. The result of adhering to impairment rating as a basis for disability determination has been disheartening.18 Hundreds of thousands of claimants seeking disability awards from the Social Security Administration are subjected to "contracted examinations" by physicians in their communities who are remunerated for quantifying impairment for the agency while ignoring symptoms in the process.21 Likewise, the experience of parading before an inscrutable "independent medical examiner",22 a physician remunerated by the insurer to apply some ethereal algorithm to the clinically indeterminate (Table 2), colors the life of many a workers' compensation claimant who does not return to work as quickly as expected. If all of the medical and surgical interventions that money can buy and the passage of time do not result in "return to work," another fate may await. Workers' Compensation programs allocate moneys so that some claimants, most with scars on their "failed" backs or arms, can populate America's "pain clinics," "work hardening programs," and the like. These are programs in which therapy is designed to encourage claimants to find their symptoms much less limiting than they or their medical "providers" had initially appreciated. No one pays for Social Security claimants to participate in any such exercise. The unsuspecting Social Security claimant spends many months in the application process when he or she must not work, usually has no health insurance, and is almost 80% likely to be denied. All of this transpires with the claimant having to prove that he or she is really ill beyond that which some functionary predicts based on impairment. Every physician knows that if you have to prove you're ill, you cannot get well. Applicants for Social Security Disability Insurance who are denied seldom return to the workforce.23 Who "Won't" Work? The Prussian legacy is a convoluted, costly, labor-intensive gauntlet designed to exclude the unworthy from benefits deemed just only for the disabled. It operates with a vehemence that takes a toll on any and all who feel compelled to seek redress. There must be a better way. If we grant, just for a moment, that there are too few "unworthy" to justify our preoccupation (and/or we want to care for and about them anyway because that is our ethic), an entirely different conceptualization emerges. The disabled have no exclusive claim on the illness of work incapacity. Many more find themselves bereft of the personal resources to achieve self-respect through gainful employment and cast about for alternative stations in life. Who are they who suffer such precarious access to employment that is not demeaning? The Disabled Clearly there are those so unfortunate that abandonment is patently immoral. They have overwhelming congenital or acquired disease and all who care about them know that they are incapable of substantial gainful employment. For some, this is predictable and so imminent that all their energies should be unfettered to deal with the process. No such person should be forced to validate his or her perception of disability. No such person should fear for their comfort in an enlightened society. However, most people with physical incapacities are not as "disabled" as that. Rather they suffer a perturbation in options. Our society finally is making progress in removing some of the physical and administrative impediments that contribute to the perturbation. But we are still unwilling to take the next step. We must recognize that individuals with lesser degrees of physical incapacity, or none at all, can suffer perturbations in options to the same degree as those whose abilities are overwhelmed by disease. They can still be worthy of our help-just as worthy-even though the help they need is far more abstract than the removal of physical barriers to performance. These are not folks "who won't work"; they are folks "who can't work" because they are disallowed, or disaffected, or disavowed. If only we would recognize their very existence, then, perhaps, we can fashion some scheme for assistance more productive, less iatrogenic, and far less stigmatizing than the Prussian gauntlet. The Disallowed Many suffer the illness of work incapacity because they only have access to employment that, at best, they consider demeaning. "Lack of skills" is the facile condemnation these people live with. How often does the condemnation "no skills" serve merely to obstruct access to employment? Even this century is scarred with examples of affinity groups that restricted access to more gainful employment to their membership; prejudices related to race, religion, ethnicity, and gender belied "lack of ability." Affinity groups survive because of the comforting familiarity they afford. However, affinity groups can breed generations of resentment with explosive potential. The modern world stands in bewildered witness. Will we learn the lessons? The "service society" is bringing with it new affinity groups based on a mandate to conform rather than ability to perform. Adherents to the creed of the enterprise demean all whose creed is individual accountability. The latter face disallowance, closing ranks with the workers whose skills diminish with time or become out of date. What option does the laborer have at middle age when he or she cannot keep up with a younger worker? What option does the technocrat have at mid-career when he or she is declared redundant? Are they assisted back into the work force in tasks that otherwise might go untended, for which they are suited, and upon which they can rebuild their self-image? Or does our society leave them to their own devices? No wonder these workers find their next regional musculoskeletal illness the "straw that broke the camel's back." And when that happens, seeking some income substitution from Social Security Disability Insurance may by the most ready option, in spite of convolutions that require the claim of disability to be based on modest impairments in many organ systems including the musculoskeletal.24 The Disaffected This is the group whose illness of work incapacity seems counterintuitive and therefore is most likely to be ostracized as unworthy. It is a large group and the one most vulnerable to being swept into the vortex of disability determination.25,26 These are the people who cannot find a comfortable niche in the workplace. They are not liked. Some are not likable. Some suffer a misanthrope as a superior. All face major challenges to their self-image for the majority of their waking hours. Anyone who can will seek alternative employment. Anyone who has no such option is in trouble. Only the most enlightened of employers are aware of this dynamic, let alone proactive. Most would rather find a "good" worker. This fact of life in the work force needs strident airing. A single disaffected worker is a challenge to management. A cluster of disaffected workers is a reproach. The Disavowed What is meant by "underculture"? Who are "they"? The depraved? The insane on the streets? No physician should countenance such a conceptualization of fellow man. Yes, there are people amongst us whose life is so base that they must live for the moment, even grasp for solace in the surreal, and sometimes lash out at anyone who invades their space. But they are not "they"; they are we, our world, our compatriots. Meet them-not through the impersonal eyes of the scientist, or the blinded eye of the labor econometrician who simply expunges any not seeking work from the "work force." Meet them in literature,27 in the halls of our hospitals where they are all too likely to be and all too likely to die, or even on the streets. These are the disallowed and the disaffected who were born without resources or stripped of them. These are not the "unworthy poor." No one chooses to stay debased. They have no options; they can find none of the paths to self-respect that you and I enjoy for the moment. No label, no prison, no enforcer, not even another Bismarck, can hide their plight from our sight, or spare us a growing share of their suffering. As Václav Havel said recently,28 "Our conscience must catch up to our reason, otherwise we are lost." Quo Vadis Yes, this is a polemic-written by one physician, and passionate. I have predecessors, even as relates to my posture in this very debate near the turn of the last century: Rudolf Virchow for one29 and Richard Cabot of Boston for another. However, today's medicine can inform the debate as never before. We can disabuse society of the notion that disability is in any way a clinical diagnosis. The paradoxes in Table 2 remain paradoxes, but any answer to each is incontrovertibly outside medical purview, probably fatuous, and likely to be as counterproductive to the plight of the individual with the illness of work incapacity as precedent answers. If medicine can deliver this message, then the political issue becomes not how to modify the Prussian legacy but how to supplant it with programs and philosophies that embrace the disallowed, disaffected, and disavowed along with the disabled. Acknowledgment I wish to thank my colleagues, Richard Kohn, Professor of History, and Ken Broun, Professor of Law, for their probing, thoughtful, and constructive critiques of this essay as it evolved. The time to compose this essay could be identified thanks to a grant-in-aid from the Ford Fund. Nortin M. Hadler, MD Department of Medicine; School of Medicine; University of North Carolina at Chapel Hill; Chapel Hill, NC