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I did NOT say 'physically challenged'

Yesterday a reporter from The Guardian, the British media outlet, called to get a quote from Ragged Edge about the case of Ashley, the 9 year old Seattle girl whose situation has stirred outrage on the disability listservs since last fall when news surfaced of her parents' plan to get doctors to intervene to keep her from getting bigger -- from growing up -- so that they could "care for" her. The story ran this a.m. on the front page of The Guardian.

It's a troubling case from many directions. I suppose I gave the reporter more to think about than I should have, maybe. I talked about implications of the case, which is often not a good idea when there's a deadline looming. Nonetheless, I thought I did my best.

I have little patience with folks who are always yelling that the reporter misquoted them; people who refuse to talk to reporters with the excuse that they fear being misquoted. People who, because they want to maintain so much control over the story, end up ensuring that no story at all -- or the wrong one -- gets reported. I've railed about this before.

So I'm not one to yell about "misquoting" lightly.

But in this case it was pretty serious.

There, in The Guardian, the story told folks that I'd said, regarding "implications," that

What will now be said in the case of a child with spina bifida, who you could argue has the same physical challenges but whose brain is fully functioning?

No; I did NOT say "physical challenges."

I don't know exactly what I DID say -- probably "physical functioning," which is the way I'd normally make a point like this -- but I know I did not say "challenges." I would never refer to anyone with disabilities having "challenges." Never.

Breaking my usual rule not to challenge (ha ha! used correctly here) a reporter over an inadvertent change of wording (after all, it's not usually CRUCIAL that every word a source says be exactly as spoken), I have just emailed him about the problem.

Because my saying "physical challenges" is... well, it's like me telling a reporter that someone is "a retard". I just wouldn't do it. It would never come out of my mouth.

Already I've received some emails asking me, "Did you REALLY say that?" Because people who know me know how much I abhor the term "challenges" to refer to disabilities.

Rather than repeating myself further, I'll just paste in a Ragtime editorial I wrote back in July, 1985:

Ragtime: The problem with challenge

There. I heard it again.

"It's not our problem, it's his challenge," a young mother was saying about her disabled child.

"My child is the same as any child. His challenges are just greater. I guess you'd say he's physically challenged."

"Physically challenged." The new phrase.

We try to find ways to make our disability sound positive. The latest thing we've come up with is to refer to ourselves as "physically challenged."

I don't like it, though. It ignores a crucial fact: The reason we can't do lots of things is not because we're lazy, or because we won't accept a challenge (isn't it implied when you won't accept a challenge that you're a chicken?) but because many things are simply beyond our control. Like barriers. Like discrimination. That's not admitting failure to accept a challenge. That's admitting a political truth. And admitting a truth is the first step toward changing it.

Until you've tried to make it your responsibility to get a job--only to find you can't get in the company's front door because of their steps and your quadriplegia, (and the company isn't required to put in a ramp, so it doesn't)--you may not understand why "challenge" is no good as a description of what we face.

Until you've made it your responsibility to get downtown, and discover there are no buses you can get on, you may not realize that it isn't a challenge you face, but discrimination. But when you call your local paratransit service and they say, "Sorry, if it's not for a doctor's visit, we'll have to put you on the waiting list--maybe we can schedule you in 10 days or so" you should begin to realize it. A challenge is something you can solve by yourself. You can't solve the paratransit problem by yourself.

"Those of the handicapped constituency who choose to have others bear their burdens and eliminate their challenges are seeking to avoid the central issues of their lives."

That's from Eileen Marie Gardner's writings (see page 17).

Do we believe this? Evidently we do.

I'm afraid that many people would tell us that we are "challenged" by our disability to do the same things as people who aren't disabled. "And if we can't?" we might ask. The person who believes in "challenge" would say it's our failing: we haven't met our "challenge."

Isn't this just the same old crap we've been told all along, under a new title?

When are we ever going to believe, in our hearts--truly believe--that our problems are not things we are given by a God, to solve ourselves, but are things that we have a right to require our society to change--because the problem isn't our disabilities but the inaccessible environment which society built in the first place?

We say that, all the time. But we don't really believe it, do we? If we believed it, wouldn't we see that calling ourselves "physically challenged" is bad for disability rights?

This, by the way, is from the July 1985 issue of The Disability Rag.

(The Advocado Press has the complete digital archive of The Disability Rag, 1980-1996, all in searchable text format, on a CD-Rom, for $299. It's a great addition to any library or crip organization. Order it here.)


Sigh. Still bummed after all these years. You'd think reporters would begin to understand, but the stereotypes are so deeply ingrained that we may never root them out altogether. But, as you note, it is important to continue to speak our truth to media, even if they fail to get it totally right. Silence is not an option.

From The Guardian, 1/4/07

##Outrage has also been expressed by organisations representing disabled people across the US, with many asking why a course of treatment that would not be countenanced for an able-bodied person should be allowed in this case. "People have been horrified by the discrepancy," said Mary Johnson, editor of Ragged Edge, an online magazine for disability activists.##

This doesn't ring true,
did you realy express outrage?
Surely most medical interventions are inappropriate for the "able-bodied".

Thanks for writing about this, and raising the "challenges" issue. I have read the Guardian story, and the blog. I did watch the photo slide show. I will need to consider the many angles this case raises, so I can write sensabally about this.

However, two thoughts come immediately to mind, and I wanted to share them right away. First, of course, when the parents describe their daughter's "challenges" I was shocked! Clearly, how they care for their daughter is "their" "challenge." If, in fact as they claim, their daughter is not a "burden", that should mean her care is not a "challenge?"

Secondlly, and also obvious, I noticed that there were black squares on the photos of the faces of their other children, but not on Ashley's face. I assume that is because they want to "protect" the identity, or dignity, of their other children? Yet they seem to think that they are protecting Ashley's dignity just fine? Maybe it is just me, or did this bother anyone else?

Go to CNN website this morning and you will see that their "QuickVote" question is:

"Who should have the final say on allowing disabled people to have controversial surgeries?" They give voters two choices: Caregivers or Ethicists, but they don't list Disabled People. I know in that in this case Ashley can't make her own decision b/c of the extent of her intellectual impairment, but CNN's question, in it's wording, blankets all disabled people. It also ignores the idea that disability groups should also have a say in these issues.

Boy, kathypodgers, a picture is worth a thousand words, isn't it? Thanks for alerting us to this -- I missed it, but is says everything, doesn't it?

Catherine, thanks for the heads up. This is just more proof of what I wrote on the WIMN's Voices blog this morning: Once again, when a disability issue surfaces in the media, it becomes the doctors-and-ethicists show -- and disabled people are left out of the equation entirely.

I don't know which is worse: that they ignore the voices of disabled people, or if they haven't a clue that those voices need to be part of the debate?