Hidden disability and an academic career

Academe, Jul/Aug 2003 by Beretz, Elaine M

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

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.