Harriet McBryde Johnson

Harriet McBryde Johnson

Harriet McBryde Johnson

Recently 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.

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.”

Sadly, while attempting to paint a positive picture of Harriet’s vibrancy and achievements the writers at TIME have managed to shoot themselves in the foot. And they didn’t mess around doing it; in fact they accomplished the deed with just four words – “bound to a wheelchair” – proving once again that words can stigmatize. In so doing, they also underlined how much Harriet’s brand of tough advocacy will be missed.

What journalist in this day and age actually writes “bound to a wheelchair?” At least one too many! Whenever I read a variation on this theme I wonder – is it going to take all of us who ride a chair (or if you prefer terms such as “use a wheelchair for mobility” or “wheelchair user”) to participate in a national rally where we are literally bound to our chairs? Must we sit in front of the door of every journalism school, network television station, and print publication in this country? Can you just picture the nightly news carrying graphic images of people tied to their wheelchairs, visually exemplifying the words “bound to a wheelchair”? Is this the extreme it will take in order to finally draw the media’s attention to the negative impact and false impressions their careless use of language portrays? Although such a demonstration might be an interesting start, all of us who deal with stigma on a daily basis realize that changing people’s perceptions and behavior takes, as they say in the advertising world, multiple impressions.

Stigma is built word by word and stare by stare, creating a solid wall which separates and divides us all. Since it is unlikely stigma in healthcare will suddenly disappear from our society any time soon, I tried my best to do my part in tearing down a piece of the wall by sending the following letter in response to Harriet’s obituary:

“Dear TIME Magazine: When you described Harriet McBryde Johnson as “bound to a wheelchair” in your article about her recent death, you managed to prove just how far from finished the work of one of America’s greatest advocates for our largest minority (people with disabilities) is – she will be so missed. “Bound to a wheelchair” is an unacceptable description – one I believe she would have railed against. Could someone in your organization please take a moment, find something sharp, cut loose your “deskbound” journalists and then send them to check out the sidewalks of NYC where they can discover for themselves – I believe your profession calls it fact checking – that people who ride a chair, or if you prefer, “use a wheelchair for mobility” as Harriet did, are not “bound” — they soar — they get places, do things, and make a difference with their lives.”

So if you are roaming the streets of New York using a chair for mobility and happen to be approached by a reporter doing what journalists do best, being curious and checking out facts — please take a moment to talk with them.

When we die, we might just as well die educating.

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