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Hidden Disability and an Academic Career

Institutions and attitudes impose cruel choices on faculty with hidden disabilities. One key to resolving these choices is greater institutional flexibility.

By Elaine M. Beretz


Is fighting a serious illness or recovering from a major injury mutually exclusive with being a professor? Trends in academic employment and societal attitudes toward disability answer that question with a resounding yes. This disturbing state of affairs will continue until we develop ways to accommodate the "hidden" disability of serious illness or injury to the realities of academic life. This article outlines the problem, relying mainly on anecdotal evidence. It is surprising that no formal study has yet addressed this issue. Illness and injury, after all, are inescapable realities of human life. Sooner or later, they touch everyone, and their impact on academic careers is devastating.

The professional difficulties caused by a hidden disability arise from a loss of time and depleted energies. Both make it difficult to balance the varied demands of academic employment. The accelerating publishing clock, intense competition for jobs, and attrition of tenured positions heighten these problems. Any delay or setback threatens a career.

Nontenured faculty are, of course, most vulnerable. Their jobs depend on the quality and quantity of what they produce within a limited time. But post-tenure reviews pose equivalent challenges. Tenured and untenured faculty alike are often pressured to resign. Most cannot do so, since that would cut off access to medical care. Those who leave their jobs find it extremely difficult to get another. Those who retain their jobs experience a delay, or decrease, in productivity that affects promotion, salary, or professional reputation.

Untenured faculty with pressing family responsibilities report many of the same problems. The AAUP's Statement of Principles on Family Responsibilities and Work, approved as Association policy in November 2001, provides a partial model for addressing the analogous, yet completely different, situation of hidden disability.

Hidden Disability
The word "disability" conjures up "visible" impairments involving hearing, vision, speech, or mobility. But disability is actually a much broader umbrella, encompassing various conditions, such as cancer, stroke, multiple sclerosis, HIV/AIDS, psychological disorders, heart disease, and the lasting physical effects of serious injury, to name only a few.

For sufferers of hidden disabilities, phases of acute illness alternate with periods of chronic impairment, during which the body repairs itself or adjusts to damage from the incident and its treatment. Within that general pattern, there is a range of etiologies. Some illnesses strike suddenly and require aggressive initial treatment. The acute stage of such illnesses precedes a longer period of chronic impairment until therapy or medication (completely or in part) controls the condition. Other illnesses are progressive and incurable. The early stages fit under the category of chronic illness to the extent that therapies delay the onset of the acute phase. All grave illnesses of whatever sort profoundly disrupt a life and career for a lengthy period. Recovery lasts for another long period, if not permanently.

Advances in medical treatment now allow a near-normal quality of life for even the most serious medical conditions. While most patients must adjust their lifestyles and alter their pace of work, they can still do their jobs. But the perceptions of employers, and society, have not kept up with medicine. As Fitzhugh Mullan, a physician who is also a cancer survivor, eloquently stated in the July 25, 1982, issue of the New England Journal of Medicine: "Despite this success on the treatment front, we have done very little . . . to investigate and address the problems of survivors. It is as if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and splutter on their own in the belief that we have done all that we can." One can adjust to an illness, even regain a semblance of health, only to plunge headlong into the sociological challenges of survivorship.

Most research on this topic is recent and centers on cancer and AIDS patients. The most extensive study, that of cancer patients published in the October 1996 issue of Working Woman magazine, revealed that such patients are many more times likely than other employees to be fired and are much less likely to be hired. This experience matches that of people with other sorts of disabilities. Three-quarters of those with a visible or a hidden disability who are able to work are unemployed. In fact, according to a November 2000 article in Business Week, during the booming economy and labor shortage of the 1990s, employment rates for the disabled fell steadily. I have no statistics on academics with disabilities. The tight job market during those years, however, suggests a much bleaker picture.

Patients must decide with their physicians whether to return to work. But a failure to find adequate accommodation for their condition too frequently takes that decision out of their hands. Academics with hidden disabilities must navigate a nightmarish maze of cultural barriers, negative attitudes, and structural impediments.

Cultural Barriers
Most illnesses do not change the intellect that fuels teaching and research, the essential tasks of our profession. But patients lose time. Their energies are depleted. Their priorities, by necessity, shift, upsetting the delicate balance academics must strike among the demands of our profession.

Living with a hidden disability means constantly guarding against overextending unreliable energies. Doing so militates against the frenetic pace that marks an academic's working life. For even the most energetic, there is simply not enough time to fulfill all the requirements of our job, not to mention family responsibilities. Work permeates every waking hour.

This pace benefits no one, although it places added burdens on people with hidden disabilities. Saying "no" to an overcrowded schedule, the strategy most physicians advocate, is not an option for academics, especially the untenured. Borrowing on health to fulfill work obligations is not possible for someone with a serious medical problem; in fact, it is dangerous. Low energy and loss of time often make it necessary to postpone scholarship (a long-term obligation) for the immediate demands of teaching and committees. People find themselves fulfilling the obligations of their job at the expense of the scholarship central to their career.

Navigating the academic culture of heroic stamina is filled with pitfalls. Dealing with colleagues who often overlook the problems and consequences of serious illness is a daily frustration. There are other complex calculations. Revealing the challenges of a medical condition risks seeming unable to do the job. Downplaying the challenges risks a poor performance review that focuses solely on decreased productivity. As "Work Life for Employees with Disabilities: Recommendations for Promotion," an article in the March 1997 issue of Rehabilitation Counseling Bulletin, points out, someone with a hidden disability can only measure unfavorably against colleagues who did not suffer comparable difficulties within the period under review. Although such a situation affects tenured and untenured faculty alike, it threatens the jobs of the untenured and, with it, their careers. Finding a new job requires a delicate balance of its own. How do applicants disclose their medical history to explain a gap in their career or a delay in publication?

Given a choice between recovering health and keeping a career, the rational choice is the former, of course. Time and again, however, negative attitudes of colleagues and failures of institutional policy—not issues of health—force academics to make that cruel choice.

Negative Attitudes
American culture has a profound discomfort with disease and disability. We equate health with ability and power, often employing sports metaphors to do so. As a corollary, we tend to blame people for their disabilities. We see illness as a lack of self-control; chronic illness as failure to "shape up." People fighting illness are considered weak in spirit and mind, as well as in body. Using "victim" as a synonym for "patient" drives that point home in every discussion of serious illness. As law professor Ruth A. O'Brien notes in her 2001 book, Crippled Justice: The History of Modern Disability Policy in the Workplace, these assumptions countenance widespread discrimination, in all walks of life, against the disabled. That discrimination assumes a particular form in the academy. Loss of time and reduced productivity are bad enough. But the subjective nature of academic evaluations opens faculty with hidden disabilities to judgments shaped by our cultural prejudices.

Consciously or unconsciously, we define a period of illness simply as idleness and see the need for accommodations as laziness. Claims of disability are considered inflated, or false altogether. Such an attitude equates physical illness with a moral failing. Too often, patients are expected to compensate for that "lapse" through a higher standard of work, greater productivity, a heavier workload, and so on. More subtly, colleagues assume that faculty with disabilities must be pressured to do their job.

Concern with "maintaining standards" dominates discussion of how to implement the 1990 Americans with Disabilities Act, as it does all forms of affirmative action. Such an approach implies that accommodations are charity given to the people who do not, and probably never will, measure up. As a result, performance evaluations of faculty with hidden disabilities frequently center on a loss of time or a delay in publication, not on productivity under difficult conditions. Commonly, these issues are couched as a problem with "career trajectory," which simultaneously casts a serious medical impairment as a poor career decision and projects future accomplishment based on a disruption in productivity. The code word "trajectory" negatively judges ability and promise, the twin virtues for promotion.

Most invidious of all is the assumption that accommodations for one person penalize everyone else. Such arguments use the misleading language of equity. They focus not on what disabled persons need to accomplish the essential tasks of their profession, but on what is considered "fair" for everyone. Such an approach is, in reality, anything but fair. It generates a frustrating cycle of negotiation, with the disabled constantly at a disadvantage.

Hidden disability presents formidable physical challenges. The heroic myth of academic stamina and the negative attitudes of one's colleagues compound these challenges, often to an intolerable degree. Little shields an academic with a hidden disability from evaluations that perpetuate cultural prejudices. Structural impediments make the faculty member even more vulnerable.

Structural Impediments
Few institutions have clear, or even stated, policies for accommodating serious illness or injury. Most disability policies, or guidelines for medical leave, define illness strictly as total impairment, the worst-case scenario of not being able to work at all, leave the house, or feed or dress oneself. That extreme situation is as easy to define as it is difficult to experience. The problems come when one is disabled, but not profoundly so; when one is well enough to work, but not at full capacity.

Other problems arise from misguided fiscal concerns. Academic administrations have borrowed these concerns from corporate policies. Richard Roessler, director of disability research at the University of Illinois at Urbana-Champaign, and Gary Sumner, manager of employment projects for the National Multiple Sclerosis Society, undertook the first analysis of the origins and consequences of such policies. Their findings were published in the fall 1997 issue of the Journal of Applied Rehabilitation Counseling. Academic administrations, like their corporate counterparts, tend to fear the cost of providing medical insurance to the disabled person, and often devise ways to limit access to it. Insurance carriers are notorious for pressuring institutions to do so. Such tactics violate the definition of group coverage, which purports to spread the cost of caring for the sick throughout a large group of both disabled and able-bodied people. What is more, academic administrations, like other corporations, often see benefits as a "zero-sum game" and allocate them according to a narrow standard of productivity. This linkage of benefits to productivity gives rise to another frustrating cycle. The employee needs accommodations to sustain productivity, and yet productivity is the standard for granting accommodations, which are seen as benefits.

Other policies assume that accommodations made once for serious illness will then have to be granted routinely for less compelling reasons. Accommodations, when granted at all, are classed as a contract and kept confidential. Even if they worked well, they are not necessarily disclosed when someone else needs them. Conversely, the secrecy demanded in legal settlements masks poor policies and hides the full extent of their damage. Accommodations for disability potentially affect everyone. We all should know what helps and what does damage.

Apples and Oranges
Having an understanding employer seems the only way to find accommodations for hidden disability. And yet even the most enlightened employer can fall into thinking that "one accommodation fits all," equating accommodations for hidden disabilities with those devised for other situations. This arrangement traps faculty with serious medical conditions into "accommodations" that do not address their particular needs.

Most equal-opportunity codes include disability among a long list of attributes, such as sex, sexual orientation, national or ethnic origin, race, color, religion, creed, and age. Such codes ensure that decisions about appointment, reappointment, and tenure will be made without discrimination on any of those grounds. This blanket of protection derives from the loftiest of motives, with which I have no quibble. But I wonder whether the linkage of all of these attributes in one long sentence does not weaken the protections available. We tend to define "without discrimination" simply as ignoring every one of those characteristics to an absolutely identical degree. In reality, each affects a career differently.

The impact of gender on an academic career provides an instructive contrast to that of hidden disability. True, gender and disability can both negatively shape performance evaluations. On its own, however, gender does not affect performance. Disability, by contrast, involves a loss of productive time. Discrimination on the basis of gender measures equivalent performance unequally. The comparison, in and of itself, discriminates against those with hidden disabilities. Failure to accommodate disability deprives a faculty member of the opportunity to produce in the first place. With gender discrimination, the loss begins at the time an appointment is terminated. With disability discrimination, job loss compounds the loss of productivity, making it doubly difficult to find a new job. Protections against gender discrimination, therefore, fail to address the situation of hidden disability.

Accommodating hidden disabilities, moreover, is not the same as accommodating so-called visible ones. Modified curricular requirements and auxiliary aids—basic adjustments for visible disabilities—apply only marginally to hidden disabilities. Should the condition remain stable, visible disability allows advanced insight into how impairment might affect productivity. Accommodations can be established up front. By contrast, hidden disabilities present no clear pattern of illness or recovery. Even persons with the same disease experience different levels of incapacity and rates of recovery. Accommodations for disabilities of all types must provide a mechanism for further adjustments, as the long-term effects become known or the condition changes. But adequate accommodations for hidden disability are necessarily different from those for visible disabilities.

Family Responsibilities
Faculty with hidden disabilities need realistic adjustments for time lost and concrete compensations for their physical and professional challenges. Anything less creates barriers to resuming a career. Many of the same barriers face faculty, mostly untenured women, who care for children or disabled relatives. The AAUP took a major step toward remedying the latter situation by adopting its Statement of Principles on Family Responsibilities and Academic Work in 2001. Accommodations proposed there provide a starting point for remedying the problems of hidden disability.

In fact, the Federal Pregnancy Discrimination Act of 1978 and the Family and Medical Leave Act of 1993 mandate accommodations for pregnancy by classifying it as a disability. Pregnancy and recovery from childbirth do exhibit some parallels with the acute phases of illness. Parenting or caretaking responsibilities correlate with the chronic phases of illness. Both involve a measure of physical incapacity, loss of time, adjustments in lifestyle, shifting priorities, and difficulties in balancing the demands of work with personal or physical needs.

It follows that some of the same accommodations apply for hidden disability, especially longer leaves of absence and temporary reduction in workload. For both caretaking and disability, it is essential to separate the professional responsibilities themselves from how long it takes to meet them. In no case should an institution exact a price for these accommodations by demanding higher levels of productivity in exchange. As the AAUP statement rightly points out, to do so would heighten the inequity of any measure that compares one faculty member with another.

But the demands of acute illness are distinct from those of pregnancy in crucial ways. Pregnancy falls into a predictable pattern and is self-limiting. By contrast, no disease or injury is quite like any other. Chronic illness, moreover, provides no respite. No day or elder care, and no support staff, can provide even a short reprieve from its demands. So, although it is helpful to compare pregnancy and family responsibilities with disability, the converse—acute illness as equivalent to a pregnancy—does not work at all. Serious illness and maternity are simply not analogous situations in an academic career. Two of the accommodations for family responsibilities suggested in the AAUP's statement—limited stopping of the tenure clock and a standard profession-wide policy for accommodations—do not redress the problems of hidden disability. In fact, they make matters worse.

Guidelines, Not Policy
To accommodate pregnancy during the probationary period, the AAUP statement stipulates that the tenure clock be stopped one year for each child and that this interruption be allowed only twice. This practice ensures as short a probationary period as possible and is perfectly reasonable. Pregnancy, after all, is a voluntary condition and recovery follows a predictable pattern.

But such an approach fails to address certain maternity and family situations. What about a problem pregnancy or complicated delivery? What if a birth coincides with the need to care for a disabled relative? If a child has special needs, will dealing with them be a short- or long-term undertaking? If caring for a disabled relative lasts for more than a year or so, what then? All of those situations, like hidden disability, require flexibility.

Stopping the tenure clock is a good minimum accommodation for a normal pregnancy. Accommodating a problem pregnancy, or complex family needs, would build on that minimum. But hidden disability needs even more time. A two-year upper limit penalizes people with hidden disabilities in direct proportion to the severity of their condition. It makes all injuries and illnesses equal, and equates them all with a normal pregnancy.

Ideally, we might envision a spectrum anchored on one end with the traditional standard of "up or out in seven years." Accommodations for normal pregnancies and child care would hold the center of the spectrum, with the option of stopping the tenure clock twice. The other end of the spectrum—for the most catastrophic illness or injury—would separate professional accomplishment entirely from the tenure clock. Criteria for tenure or promotion in such cases could be a series of accomplishments that, rather than time, mark the stages of a career.

Substituting a spectrum for a "track" preserves the traditional course of an academic career, while allowing for the inevitable contingencies of human life. Most careers will likely fall between the traditional end of the spectrum and its middle. The other end would apply only rarely, but maintaining it would allow institutions to set uniform criteria for promotion and permit seriously ill faculty members to retain their jobs.

We must distinguish policy for dealing with family responsibilities from guidelines for addressing serious illness. The distinction is fine, perhaps, but equitable accommodation for hidden disabilities depends on it. A policy, defined as standardized accommodations for routine situations, makes sense for the fairly predictable process of pregnancy and recovery. Everyone can plan in advance.

By contrast, hidden disability presents no clear pattern. It is impossible to determine at any one time (or in advance) what would be equitable and reasonable. Standardized policies, therefore, do not establish a true remedy. Accommodations must be calibrated to individual needs and determined by such factors as the timing of the illness in the career, the length of the acute phase, the level of impairment during the chronic phases, the effectiveness of drugs or other therapies, the prognosis, and so on. Since chronic illness is not self-limiting, all accommodations must be open-ended and expanded or modified as the condition changes.

The AAUP statement is a major step toward making our profession more humane and diverse. It provides a blueprint for accommodating academics with hidden disabilities, provided we keep in mind that disability and family responsibilities have a radically different impact on a career. The AAUP statement also reflects an inspiring mixture of compassion and practicality. It gives me hope that we might address the problems of hidden disability with the same spirit and intelligence.

We need to collect more stories, analyze them, and undertake a survey of institutional policies. And we need to do so in the kind of detail that will yield a set of profession-wide guidelines. They must be flexible enough to properly reflect the diverse challenges of hidden disabilities, but not so flexible as to leave a faculty member vulnerable to the prejudices of the people administering the guidelines. Implementing them will work only with education and an open flow of information. Individual institutions will need support structures, and a national board should oversee their application. Undertaking these tasks will be worth the effort. Academics suffering a hidden disability will benefit immediately, and everyone else—everyone, after all, is only temporarily able-bodied—will get a safety mechanism.

Suggestions for Further Reading

Bordieri, James E., David E. Drehmer, and Darrel W. Taylor. "Work Life for Employees with Disabilities: Recommendations for Promotion." Rehabilitation Counseling Bulletin 40 (March 1997): 181-91.

Bricourt, John C., and Kia J. Bentley. "Disability Status and Perceptions of Employability by Employers." Social Work Research 24 (June 2000): 87-95.

Chambliss, Lauren. "Cancer Reality Gap." Working Woman, October 1996, 46-49.

Kelley, Peter, John La Bella, and Peter Myette. "HIV and Discrimination: A Resource Manual." <www.infoweb.org/library/legal/discmanl.html>.

Koretz, Gene. "How to Enable the Disabled: Scant Progress in Jobs and Income." Business Week, 6 November 2000, 36.

Lubkin, Ilene M., and Pamela D. Larsen, eds. Chronic Illness: Impact and Interventions. 5th ed. Sudbury, Mass.: Jones and Bartlett, 2002.

Mullan, Fitzhugh. "Seasons of Survival: Reflections of a Physician with Cancer." New England Journal of Medicine 313 (25 July 1985): 270-73.

O'Brien, Ruth A. Crippled Justice: The History of Modern Disability Policy in the Workplace. Chicago: University of Chicago Press, 2001.

Roessler, Richard T., and Gary Sumner. "Employer Opinions about Accommodating Employees with Chronic Illness." Journal of Applied Rehabilitation Counseling 28 (fall 1997): 29-34.

Sontag, Susan. AIDS and Its Metaphors. New York: Farrar, Straus and Giroux, 1989.

Elaine M. Beretz a research associate at Bryn Mawr's Center for Visual Culture <www.brynmawr.edu/visualculture>, is a historian of the religious and material culture of medieval Europe.