Living with Quiggles: A Tribute

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.