Hidden Disability and an Academic
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
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
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.
"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
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
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
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
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.
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.
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
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
Apples and Oranges
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.
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
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
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
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
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
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
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
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):
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."
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
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):
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