Stigma:
1) The recognition of difference based on some distinguishing characteristic or mark
2) A consequent devaluation of the person
Quiggles: A made-up term (by famous sociologist, Erving Goffman) to identify all of the variations and differences of the human body which occur either from birth, daily wear and tear, accident, or illness which can be, and will be stigmatized.
This past June America's largest minority (people with disabilities) lost one of its most committed advocates, Harriet McBryde Johnson. I got to know Harriet both from reading her articles and book (Too Late to Die Young), and from a series of telephone conversations I had with her when she helped the Foundation I run with suggestions for a conference on Defeating Stigma in Healthcare. She was right in the middle of a media deluge resulting from an article she wrote for Parade Magazine when I called her, and yet she found time to promptly return a stranger's message and immediately offer help - the caliber and the
In her book, Too Late to Die Young, Harriet describes her growing awareness of having a life-threatening disease: "By the time I am five, I think of myself as a dying child. I've been sick a lot. There is some discussion before they decide to send me to kindergarten. I am glad they do ... when I die, I think, I might as well die a kindergartner." As a teenager she studies hard, but admits she has "no fantasies of a future. I study because somewhere along the way I'd developed a competitive streak ... and besides, I think when I die I might as well die educated."
Having decided to "live quietly among normal people" rather than let them know about her disease, she begins to pass (in stigma terminology) being vague about her medical diagnosis and stating that she has a muscle disease. Finding herself still alive at twenty-five she enrolls in law school -- "By this time, the thought is almost subconscious: when I die, I might as well die a lawyer." Somewhere along her life journey, Harriet decides to embrace her death sentence as she herself called it: "No need to fear it; no need to hasten it. Mortality is something all people share, a unifying force. Every life, whether long or short, is a treasure of infinite value. These things are true, I figure, and it's my job to say so ... when I die, I might as well die honest."
And so began a twenty-three year career as one of America's most famous disability rights lawyers and activists who found her voice after deciding that: "Death is natural, but not just. It is a random force of nature; survival is equally accidental. Each loss is an occasion to remember that survival is a gift. I owe it to others to make good use of my time. When I die, I might as well die alive."
In tribute to her TIME Magazine wrote in their weekly column Milestones: "From childhood on, disability rights lawyer Harriet McBryde Johnson was adamant about defending what she thought was right - even if that meant leading the charge as a young teen to oust a teacher she considered abusive. Suffering from a congenital neuromuscular disease and bound to a wheelchair, Johnson resented assumptions about her quality of life. She railed against the ‘pity-based tactics' of the Jerry Lewis muscular dystrophy telethon, challenged a prominent Princeton professor on the ethics of euthanizing disabled infants, and spoke out in defense of the brain-damaged Terri Schiavo when her case polarized the nation on the right to life debate. An accomplished writer who punctuated her arguments with sardonic humor, Johnson penned numerous articles and a 2005 memoir, Too Late to Die Young. She died in her sleep at age 50."
