Sponsored by Dalton Johnson

About eight years ago this time of year, my last hair fell after several months of chemotherapy. For the first time, I had the strange experience of being excessively stared at in public. Young children were the most obvious, unaware of any problem with their puzzlement over why this person had no eyebrows.

Visible signs of illness such as oxygen equipment, wheelchairs, and baldness all have a way of drawing curiosity. But with learned politeness not to discuss these things, a social tension can arise resulting in real obstacles for ill people. Physicians and healthy acquaintances alike run the risk of pigeonholing visibly ill people into one or another assumed set of characteristics and disabilities.

Some healthy people may become uncomfortable when confronted by signs of sickness because it reminds them of their common fate. The everyday sense of vulnerability is disrupted and replaced by a painful cue that they too may be chronically ill someday. The ways some may unconsciously avoid this discomfort can create additional disadvantages for the person living with illness and disability.

In Illness: The Cry of The Flesh, Havi Carel shares a story of how her blind colleague was ignored: “When I was a graduate student I tutored an undergraduate student, a young woman who was blind… When I took her shopping, salespeople spoke to me, as if she were deaf… When I took her to student society meetings, no one spoke to her.”[1]

The actual definition of the word, “stigma” is some mark that identifies a person as an individual to be avoided or shunned in public. A difference between stereotypes and stigma lies in the venomous edge behind the acts of stigmatizing. With regard to illness, stigmatizing creates intensified challenges to people already confronted with the challenges of being ill. This calls for responsibility on behalf of patients, physicians, and friends to be aware of, avoid, and best respond to stigmatizing acts.

After her mastectomy, the morning finally arrived for poet and sociologist Audre Lorde to head to the clinic and continue her treatments. She was really feeling her style this particular morning, as she left home empowered with her bold attire, including her peacock earrings. All that gusto came to a halt when she was approached by a nurse at the clinic and asked why she wasn’t wearing a prosthesis.

When she responded that the scratchy, awkward thing they had given her to charade as the shape of a breast was terribly uncomfortable to wear, the “usually supportive and understanding” nurse reprimanded Lorde by telling her that people seeing a woman without breasts is “bad for the morale of the office.”[2]

Lorde was marked as breaking taboo, failing to conform to how women ought to look. Her wounds were multiplied as an embarrassed Lorde was left “too outraged to speak then, but this was to be only the first such assault on my right to define and to claim my own body.”[3]

She could have let the anger bury her. Or she could have shrugged oppression off with indifference. Instead, Lorde used her anger to propel her advocacy for women whose voices are ignored.

*I would like to acknowledge Janet Greenhut, M.D. for her thorough editing contributions to this post.

[1] Havi Carel, Illness: The Cry of the Flesh (Acumen, 2008), 51.

[2] Audre Lorde, The Cancer Journals, Special Edition (San Francisco: Aunt Lute Books, 1997), 60.

[3] Lorde, 60.