This past spring I participated in a seminar called "Speaking in Two Voices: Academics Parenting Children with Disabilities," held at a regional meeting of the Modern Language Association. Nine of us presented papers and enjoyed a lively discussion with one another. Our audience consisted of only two people.
Toward the end of the session, it was one of those two who asked what the rest of us were thinking: Where is everyone?
To be sure, conference panels can be underattended for any number of reasons, including their placement in the schedule, and ours was slotted into the first session on the first afternoon of the conference. Still, our occupation of the margins of the conference felt familiar, not unlike the workplace situation of parents like us. Although a minority of faculty parents have children with disabilities, our numbers on college campuses may be higher than in other professions. That possibility alone suggests that our concerns merit general discussion.
Most academics who have babies do so "roughly between the ages of 30 and 40," according to a 2013 book on gender and family in academe, Do Babies Matter?" Many faculty members defer having a family until later, thanks to "the traditional wisdom in academe that women who are serious about their careers ought to forego having children or have a baby after tenure," write Kelly Ward and Lisa Wolf-Wendel in Academic Motherhood. The median age at which faculty members earn tenure is around 40. Unfortunately, after that age the risk of health complications for mother and child rises significantly. Academics who choose to adopt should also take heed: "39 percent of adopted children have special health-care needs, compared to 19 percent of the children in the general population," according to a chapter on adopting such children in the edited volume, Working With Adoptive Parents.
When it comes to students, colleges acknowledge and accommodate disability more than ever before. According to a 2012 story in The New York Times, by 2012 the number of undergraduates with disabilities had surpassed two million, about 11 percent of the student body nationwide. Today at my own university the figure is even higher, 18 percent.
So why the strange silence in academe on the subject of faculty parenting of these children?
Perhaps it’s a vestige of the "ideal worker" model that insists that work and family life occupy separate spheres. Or maybe people imagine that raising impaired or disabled kids is like raising any other child, and they figure that colleges already offer a range of family accommodations to faculty members. If we’ve logged enough hours over enough months at an institution, mothers and fathers can take (unpaid) family leave, work a reduced schedule, and hit the "snooze" button on the tenure clock.
Such accommodations are positive developments worth protecting, but none of them specifically support employees who, day in and day out, over years (and sometimes decades), care for "special needs" children. As difficult as it is to balance work and family in an academic setting, it is more difficult when disability is a factor.
In general, families dealing with disability experience "intense personal or economic stress," the effects of which can include "reducing emotional engagement, weakening commitments, even reducing an individual’s abilities to make rational decisions," writes Nancy Folbre in her book, Valuing Children.
My own experience in parenting a child with a physical impairment has been relatively mild, compared with other parents I know whose children have severe disabilities. Even so, it has been an effort that requires more than the usual amount of time, energy, money, ingenuity, and emotional fortitude. Throughout my eight years of employment at my university, I have ushered my daughter through long periods of hospitalization and occupational therapy and have overseen her treatment, at home and out of state, for a spinal condition she developed when she was a toddler.
During that time I have been the beneficiary of acts of kindness intended to provide me with assistance (as when a colleague with some pull arranged for me to sit on a low-intensity committee for a year) and I have been denied special treatment (as when I was compelled to teach a summer course two weeks after having brought my daughter home from a months-long hospitalization during which she suffered a near-fatal postsurgical complication).
When we as an academic community do not consider the effects upon a worker of parenting a child with an impairment or disability, we fail to create policies that acknowledge and accommodate those employees. Any decision about accommodations—which to offer, whether to offer—ends up being ad hoc and subject to the discretion of the decision maker. Sometimes you win, and sometimes you lose.
That approach, however, quickly becomes difficult to defend, for it insists upon a uniformity of experience that does not in fact exist. Believe it or not, some colleagues are positioned to struggle more than most to meet the joint requirements of work and family. Karen Jung, in a 2003 article on meeting disabled students’ needs, published in the Journal of Sociology & Social Welfare, writes that university accommodation policies are "typically designed to reconcile the interests and relevancies of the law with the interests and relevancies of the academy."
So: Are the experiences of the parents who sat with me on the conference panel this year of interest and relevance to the broader academy? Will university policy be determined not only by workers’ legal rights but also by what is right? Another panel on the issue is slated for the 2015 MLA convention. We’ll see how many people attend.