Being a Caregiver in Academia: Stigma, Loneliness, & Silence

The Caregiver Action Network estimates that 29% of the U.S. population fulfil caregiver roles, spending about 20 hours/week taking care of a chronically ill, disabled, or aging person. That care can include bathing and grooming, dressing, toileting, preparing meals, feeding, housekeeping, managing medications, transporting, accompanying to appointments, functioning as a de facto physical/occupational/speech therapist, advocating, and more. The person may be a child, parent, spouse, or friend. The work can be exhausting and never ending, and/but it is absolutely crucial for the wellbeing of the person being cared for.

Given that 29% of the U.S. population is involved in caregiving, I very likely have many colleagues in academia who are caregivers. I know of only two. We don’t talk about this. We talk about our kids’ accomplishments, our travels, what we’ve read lately . . . but we don’t talk about caregiving. When I look for academics writing about caregiving, I find scholarly research about caregiving and caregivers, but when I try to find blogs and other personal, informal writing about being both an academic and a caregiver, I come up empty. The closest thing I have found is this story about Harvard professor Dr. Arthur Kleinman’s experience being his wife’s caregiver.

As with many things, when we don’t talk about being a caregiver, we have a hard time talking about being a caregiver. In other words, the very fact that caregiving isn’t spoken of much in academia beyond it being the subject of scholarly research is itself a barrier to talking about caregiving. Because, as Jay Dolmage has so eloquently explained, “disability has always been constructed as the inverse or opposite of higher education,” talking about being a caregiver means identifying oneself as being engaged in activities that are stigmatized in academia. Dolmage charges that “the ethic of higher education still encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual (or physical) weakness.”  

I shared a story last week about a colleague who took pride in the fact that she hadn’t taken any leave when her mother was in hospice. That colleague was her mother’s caregiver, but didn’t talk about being her mother’s caregiver except to brag that she hadn’t missed work while caregiving. When we brag that we didn’t take leave days to be a caregiver, we perpetuate the idea that caregiving is not a legitimate reason to take leave, which makes it harder (for ourselves and others) to take leave days to be a caregiver.  When we do take leave days for caregiving, we may be reluctant to talk about it, perpetuating the silence around caregiving in academia and further isolating academics who are caregivers.

There are aspects of academia that would seem to lend themselves well to being a caregiver. For example, I have always noted the flexibility of my schedule as an aspect of being an academic that I appreciate. Theoretically, I should be able to easily fit in the hours spent taking care of my husband around the few responsibilities I have as a professor that are time-sensitive. More and more, however, I’ve been noticing how that flexibility is a double-edged sword. On the one hand, I often have some say over when I teach and can schedule research, service, and “life,” including caregiving, around classes and office hours as I see fit; on the other hand, I can be seen as on-call during all the times I don’t teach. As a particularly egregious example of this “being on call” mentality, earlier this semester, my entire department was told by the dean and provost that we needed to be available for 60 hours of Friday meetings during the semester and that because none of us taught on Fridays, they knew we were “available.” This assumes that all time not spent teaching is “available” to the University.

Like many caregivers, I find my husband’s needs highly unpredictable. Many of his needs can be scheduled, such as dressing and bathing him. But there are many random things that come up—his left arm, which is paralyzed, may get caught in between the rungs of a chair; he may need something that is out of reach even with his grabber tool; one of our dogs may snag his lunch from his left side, which he is unaware of because of his left neglect, and he suddenly discovers that his food is gone—that I cannot predict. On the other hand, there are times he can go four or five hours without needing me. The unpredictability of his needs can mean that my calendar appears to be open for meetings and other work, but I will not, in actuality, be able to attend a meeting from beginning to end.

The stigmatizing of caregiving and the on-call mentality are both markers of ableism in academia. Ableism assumes that everyone is able-bodied, that disability is a sign of inferiority, and that illness is a result of poor choices. When my calendar appears open but I am in and out of a remote meeting, the assumptions of ableism encourage my colleagues to see my sporadic attendance as a sign of poor planning or unprofessionalism. When I talk about being a caregiver, the lack of familiarity with how to navigate a conversation about caregiving can lead to colleagues being hesitant to even ask me how I’m doing. I recently learned that several colleagues had asked another colleague how I was doing; when she suggested they ask me directly, they indicated that that was too awkward. Ironically, given that nearly 1/3 of the U.S. population is involved in caregiving, it’s likely that one of those colleagues is themselves a caregiver.

I wish I knew who they were, but we don’t talk about these things.

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