One of the things I find difficult is that many of my colleagues do not know of my illness. I can only assume what they might think privately about my tiredness and various energy levels. I try to be “on” at work, but some days are better than others. . . . Even the people who do know that I have medical problems do not always get what that means. . . . It seems to be a losing battle. Trying to educate others rarely seems to make much of a difference, since I look fine.
—contributor to Chronicle of Higher Education forum on chronic illness and academia
The academic quoted above is not alone; he or she is experiencing dilemmas familiar to the thousands of faculty and staff members who manage challenging academic careers along with the challenges of a chronic illness. Recent research by the Robert Wood Johnson Foundation indicates that more than half of Americans experience at least one chronic illness—a longterm health condition that persists over time, has recurring (often “invisible”) symptoms, and requires long-term medical intervention. Aside from a 2008 National Science Foundation report in which 7.3 percent of science and engineering faculty members reported having disabilities, no large-scale studies have tracked chronic illness among faculty members. The National Science Foundation’s data likely underestimate the percentage of faculty with disabling illnesses, given the challenges of documenting disability and the fact that the data were collected prior to changes that broadened the Americans with Disabilities Act (ADA).
In a 2003 article in Academe, Elaine Beretz called upon academic institutions to recognize the issue of chronic illness in the academic career. Precious little attention has been devoted to chronic illness, however. Given that the ADA now requires accommodation for disabling chronic illnesses, our academic institutions need to consider this issue more seriously. Despite the challenges they face, people with chronic illnesses can be highly productive, high-functioning members of the academic community. The key to their success lies in institutional policies and practices that ensure equity and support their productivity.
Fortunately, a subcommittee of the AAUP’s Committee A on Academic Freedom and Tenure has recently developed a framework for policies on disability. The subcommittee’s report, Accommodating Faculty Members Who Have Disabilities, lays out clear guidelines for providing accommodation for disabilities. While it represents a major step forward in its attempt to address the lack of clear policies at many institutions, the report does not address the stigma surrounding chronic illnesses.
Both faculty and administrators need to recognize the predicament faculty members may face when seeking accommodation for a disability. For a person with an intermittent or progressive disability, challenges include whether and to whom to disclose the condition and how much about the condition to disclose, how to assemble resources, and how to navigate career expectations. Published accounts and contributions to online forums from faculty members who have disabling illnesses, particularly the ongoing forum in the Chronicle of Higher Education cited at the outset of this article, help illustrate the issues involved.
The Stigma of Chronic Illness
Unlike acute illnesses and injuries, such as the flu or a broken arm, chronic illnesses—lupus, Crohn’s disease, multiple sclerosis, arthritis, diabetes, mental illness, and cancer, for example—require long-term management. Many chronic illnesses have highly variable symptoms that are largely invisible to others. The symptoms can cause fatigue and pain, affect cognitive function, create sudden emotional shifts, and even impair speech. Such symptoms may not be detectable to an outside observer, yet 20 percent of individuals with chronic illnesses report that their symptoms are debilitating or limit life functions significantly. Conditions that limit “a significant life function”—including many chronic illnesses—are covered under the ADA and its 2008 amendments. Our obligation to support colleagues who have chronic illnesses goes beyond an ethical responsibility and includes a legal responsibility to ensure an equitable workplace. Academic institutions generally have good policies for accommodating students with disabilities, but few models exist for parallel accommodation to promote the success of faculty members with disabling illnesses.
As Beretz notes, academic careers have both unique flexibility and unique standards for performance, which can create a dilemma for faculty members with chronic illnesses. On the one hand, tenured and tenure-track faculty members may have job flexibility not afforded to those who “punch a time clock.” On the other hand, this flexibility is what can make academic careers so challenging: because academics can work anytime and anywhere, we often feel we must work all of the time and everywhere. Beretz dubs this aspect of academic culture the expectation of “heroic stamina.” As many faculty members lament, the work seems never to end. Thus, the apparent flexibility of a faculty career belies the reality of an extremely demanding work life.
Since the publication of Beretz’s article nine years ago, expectations for publication and grant funding have only increased, leading many institutions to raise the tenure bar to “superstar” levels. Accountability for both the quality and quantity of teaching has likewise increased. These increased expectations present complex challenges for faculty members with chronic illnesses, particularly when their symptoms require frequent treatment or rest. Time is, of course, a finite resource. Pressures to spend more time on work necessarily impinge on other aspects of life. Hence, faculty members with chronic illnesses may face a zero-sum conflict between health and professional outcomes.
Many chronic illnesses are stigmatizing. People who are ill can encounter a range of negative reactions, including social avoidance, awkward social interactions, and negative stereotypes about physical, mental, or emotional competence. Such reactions can undermine the quality of life.
Because illness and disease are generally perceived negatively and often associated with death, interacting with those who are ill can elicit strong negative emotions and even fear about one’s own mortality, as social psychologist Gilad Hirschberger documented in a 2006 article in the Journal of Personality and Social Psychology. These feelings can lead people to avoid social contact with faculty members who are ill, diminishing the quality of social life in the workplace as well as social and professional support. When people do interact with others known to be ill, they often are uncomfortable, avoiding eye contact and having difficulty communicating effectively. People can find it difficult not to focus on the topic of illness; however, constantly turning discussions toward illness can undermine a faculty member’s opportunities for collegial discourse about scholarly topics. These reactions may further diminish the quality of social and professional life for faculty members who are ill.
Objective criteria notwithstanding, evaluations for tenure and promotion and annual and other reviews in the academic workplace necessarily involve subjective assessments of quality that can be affected by the stereotypes and prejudices associated with stigmatizing illnesses. To the extent that an illness affects (or is even perceived to affect) cognitive or mental function, faculty members with illnesses may be especially vulnerable to stereotyping and prejudice. For example, faculty members with neurological conditions that affect speech patterns, such as multiple sclerosis or neuropathy, may be perceived as less mentally sharp. Because status in the academic workplace can be defined by the perceived quality of one’s work, faculty members with illnesses that are perceived to result in cognitive impairment may have to work doubly hard to earn the respect of colleagues and students, with implications for their professional lives.
Of course, the nature of the stigma associated with any given illness depends on the nature and severity of the illness. Illnesses and diseases perceived to be contagious, for example, elicit stronger negativity than diseases perceived to be noncontagious. Illnesses perceived to be the “fault” of the bearer elicit particularly negative reactions. Stereotypes about people with mental illnesses such as depression and addiction are both more negative and more socially acceptable than are prejudices toward those with certain physical health problems. Finally, the symptoms of some diseases are simply more socially awkward than others. James Lang, prominent author of memoirs about teaching, wrote in his 2004 book, Learning Sickness: A Year with Crohn’s Disease, of his experience with Crohn’s disease, which causes terrible diarrhea: “The final reason I did my best to conceal the disease from others [was] the fact that the primary symptom of this disease . . . is one that we don’t discuss in contemporary American society.”
Although others may also respond to those who are ill with sympathy or admiration, those positive responses often connote paternalism or pity, either of which can undermine the autonomy of people with chronic illnesses. Neuroscience research by social scientists Lasana Harris and Susan Fiske published in Psychological Science in 2006 suggests that we may quite literally dehumanize individuals who are disabled by not “seeing” them as human. James Lang wrote, “My primary fear was that any revelations I made about my condition would cause others to see me, first and foremost, as a diseased body. . . . But I was also afraid that even those people who might not find the diseased body repulsive might still brand me with that label. . . . I would be lodged in their minds as ‘the guy with Crohn’s disease.’” Pity and sympathy may be emotionally supportive to those who are ill, but such emotional support can undermine concrete professional support, such as mentoring and identifying solutions to professional challenges—that is, the types of support that all faculty members need to succeed.
Ironically, perhaps, the invisibility of chronic illness may elicit particularly problematic responses from others, especially when faculty work in a context where people are expected to be highly productive and have unlimited intellectual energy. Consider, for example, the faculty member who has fibromyalgia and experiences chronic pain and fatigue. In general, this condition is not well understood—even within the medical community. A lack of understanding of a disease may lead others to perceive those who have it to be hypochondriacs or malingerers. Looking fine on the outside but nevertheless experiencing real symptoms can put faculty members with illnesses in a challenging predicament when it comes to disclosing their conditions to colleagues, students, administrators, and others. The balance of costs and benefits shifts with each level of disclosure; department chairs, colleagues, and students require different decisions.
To Disclose or Not to Disclose?
Faculty members with chronic illnesses may agonize over whether their conditions will lead to marginalization and stigma. “Only a very few of my colleagues know, however, because despite the rules in place protecting people with illness and disability, there is still a lot of subtle—and not so subtle—discrimination,” wrote a participant in the Chronicle forum. The issue of disclosure is an important one. When an illness is not visible, deciding whether to disclose it may compound these stresses, particularly when symptoms come and go, as is true for many chronic illnesses. One participant in the forum wrote, “The big mountain for me right now is dealing with periods of being brain dead. . . . But sometimes, things pop up on a day when I can’t remember my own phone number, and I still don’t know how to completely deal with that.”
Choosing not to disclose one’s illness has several advantages when it comes to managing social relationships and the psychological risks of stigmatization. There is little risk that stigma will lead to stereotyping or prejudice when others do not know about one’s illness, thus affording the faculty member who is ill a modicum of control over how he or she is perceived. Choosing not to disclose illness also provides privacy and control over when and where one must confront discussions about one’s health, prognosis, and personal experience with disease. Having control over when to discuss one’s illness may be particularly important to those with illnesses that are inherently unpredictable or accompanied by difficult-to-control symptoms.
These advantages notwithstanding, there may be costs associated with choosing not to disclose illness. First, others may misperceive illness-related behaviors in ways that are socially costly. For example, faculty members with illnesses characterized by fatigue or pain may be mistakenly perceived as uncommitted or overly negative by others who do not know about their illnesses. Some chronic illnesses also affect speech and gait in ways that can lead others to believe they are under the influence of alcohol or drugs. Illnesses that are accompanied by symptoms of emotional lability—extreme shifts in mood, sudden onset of sadness or euphoria—may also prompt misperceptions that undermine professional and social relationships. In addition to the risk of others’ negative misperceptions, those who choose not to disclose their illnesses may carry the added burden of “closeting” important information about themselves. Research on stigma and disclosure generally suggests that concealing a condition can be stressful, leading people to worry about being outed in public situations. Persistently thinking about one’s condition and worrying about whether others know about it can take a toll on one’s productivity as well; thinking about one’s illness necessarily diminishes the mental resources available for scholarly endeavors.
Choosing to disclose an illness can, of course, resolve this stress and afford explanation for illness-related behaviors. In addition, disclosing one’s illness can elicit support from one’s colleagues and institution. Knowing about a colleague’s illness may prompt faculty members and others to try to help in useful ways. Moreover, some disclosure is required to seek needed (and deserved) accommodations. Making the invisible visible creates opportunities to promote understanding and acceptance, with long-term benefits for the workplace climate and culture when it comes to supporting faculty members who have chronic illnesses.
Those who choose to disclose can be role models for others. “My own ‘outing’ of myself was a bit of a risk, but has turned out well,” Elyn Saks, professor of law at the University of Southern California, wrote about her mental illness in a moving 2009 article in the Chronicle of Higher Education. “I am glad and relieved I no longer have to hide. And my story seems to be meaningful to people—it has helped people understand mental illness more and perhaps has led to a decrease in the stigma.”
Policy, Practice, and Reality
People who experience the effects of chronic illnesses are protected under the Family and Medical Leave Act and, because of its recent expansion, the ADA. The AAUP’s new report on faculty members who have disabilities provides excellent guidelines for policy development that include recognizing a faculty member’s responsibility for requesting accommodation, determining the essential functions of a faculty member’s position, and identifying an interactive process for effective, reasonable accommodation. An Agenda for Excellence: Creating Flexibility in Tenure-Track Faculty Careers, a report of the American Council on Education supported by the Alfred P. Sloan Foundation, also includes recommendations that are appropriate for accommodating both caregivers and those with illnesses.
Nevertheless, faculty members with intermittent chronic illnesses might not immediately see themselves in the examples in the AAUP’s report. The better-known disabilities highlighted in the report, such as ALS and autism, may not involve the intermittent fatigue and cognitive impairment that characterize many disabling chronic illnesses. Perhaps more fundamentally, people with disabling chronic illnesses may not recognize that legal accommodations are both available and relevant to them. Moreover, individuals with disabling illnesses may not know that their institutions will support accommodations if the pressure to perform looms large in conversations about tenure and promotion. A participant in the Chronicle forum said, “The major point is, there’s a huge pressure to perform as well as well people, especially for those of us whose illness is not short-term. I can see the need from the employer’s point of view. I just wish it weren’t so hard.”
Applying the model for caregiving to chronic rather than acute illnesses, as suggested by the American Council on Education’s report, has similar limitations. Pausing the tenure clock for parental leave, for example, is routine at some institutions and possible at most. Slowing the tenure clock will help a person with chronic fatigue who is in the tenure process, for example, by extending the window of evaluation. Yet, while child care interferes less with academic work as families grow older, symptoms of illness may persist or increase for years. Hence, stop-the-clock policies do little to support faculty members across the career trajectory.
Moreover, the law and policies often do not match the realities of practice. Just as symptoms of chronic illness are invisible, existing policies at an institution may not be generally known. While the fine print in many of these policies may include individual disability and illness, faculty members may not know whether existing policies apply to their personal illnesses. Department chairs rotating into their roles may have no idea about the law, institutional policies, and local resources. A faculty member going through the complex and stressful process of diagnosis and treatment planning is unlikely to devote precious energy to researching legal issues.
Research on faculty experiences with caregiving responsibilities gives good reason to believe that many faculty members with disabling chronic illness may not take advantage of existing policies. Writing in Academe and Change in 2005, Pennsylvania State University researchers Robert Drago and Carol Colbeck asserted that family-friendly policies are seldom used because of biases against caregiving. Disclosing a disability to institutional officials is necessary in order to request accommodation, but as with parenting, a faculty member may choose to cope in secret rather than risk potential negative repercussions. Faculty participants in the Chronicle forum on chronic illness described the potential costs of disclosure and their efforts to avoid bias. “People have been pretty accommodating, but I am afraid to really let anyone know how difficult things have been/sometimes are, especially the neurological component of the disease. Somehow it seems a very bad idea to tell the people I want to tenure me eventually that some days I can’t remember my own address or concentrate enough to read a page.”
Caregiving and chronic illness have another similarity: both disproportionately disadvantage women. University of California, Berkeley, researchers Mary Ann Mason and Marc Goulden documented the impact of family responsibilities on women’s careers in their Academe series “Do Babies Matter?” Many of the chronic illnesses now included in the ADA, such as lupus, Crohn’s disease, and multiple sclerosis, are more common in women, and Robert Wood Johnson Foundation data suggest women are more likely than men to have multiple disabling conditions. To add to the challenge, recent medical advances mean that diagnosis often occurs earlier, around the time of the tenure process. Although diagnoses may help clarify the ambiguity of symptoms, the need to address a diagnosis may come at a bad time in one’s career, creating problems akin to those women face when the tenure and reproductive clocks collide. The disconnect between policy and practice may also contribute to gender differences in career trajectories and success in the academy, further underscoring the inequity of existing policies.
Institutions have a responsibility to promote awareness and understanding of accommodation policies to ensure that faculty members with chronic and disabling illnesses can and do take advantage of those policies. Institutional efforts to enhance career flexibility should focus on transparency and cultural change as well as on designing and implementing appropriate policies. It should be clear that no harm will come to a faculty member who requests assistance and that department chairs will be supported as they accommodate their faculty. It should be clear also that an institution cannot include details about a faculty member’s disability in the personnel file, as emphasized in the AAUP report.
It is time to implement bias-reduction strategies to improve the institutional climate for those with chronic illnesses. Like people of color, faculty and staff members with disabling chronic illnesses are protected by law; like gay men and lesbians, they must make difficult choices about disclosure. Open recognition that faculty members are not all white, and active inclusion of the words “sexual orientation” or “partner,” have made a huge difference not only for those directly affected by prejudice but also for everyone else. Yet despite increased acknowledgment of faculty disability, discussions of diversity on our campuses seldom include disability and chronic illness.
Faculty and staff members experiencing disabling chronic illness will find multiple resources in their communities and on the web, but their workplace strategies may differ from those in nonacademic situations. A participant in the Chronicle forum said, “When I build my course syllabi I imagine and write up for myself a shadow plan for every single class period: an ‘in case I am sick’ plan that covers the material in some other way in case I can’t make it or am on half power that day. I make technology my friend.”
Rethinking Heroic Stamina
A faculty member with a disabling chronic illness is in a predicament. Chronic illness is undoubtedly challenging. The social and psychological implications of disclosure are complicated. The policies that would guide an arrangement about accommodations are likely to be bewildering. In addition, faculty life is increasingly demanding for everyone.
Institutions have an obligation to examine their expectations for success and consider whether current assumptions about both physical health and scholarly productivity are reasonable. We need frequent conversations about how these expectations are shaping the culture and, therefore, the diversity of our campuses. Encouraging dialogue about these issues while promoting visible policies for accommodation would enhance the success of people with disabling chronic illnesses. Just as academia continues to drive away talented women, we may be driving out talented people with chronic illnesses or other disabling conditions. As a consequence, we may be losing valuable scholars and teachers who would broaden our discourse across the academy.
Stephanie A. Goodwin has more than twenty years of research experience related to the social psychology of intergroup bias. She currently conducts federally funded research on prejudice confrontation while serving as program director for the LEADER Consortium, a National Science Foundation program, at Wright State University. Her email address is email@example.com.
Susanne Morgan has more than four decades of experience in sociology and was awarded professional emerita status at Ithaca College in 2012. She consults on the tenure process and other academic concerns and coaches academic writers. Her e-mail address is firstname.lastname@example.org.