Sunday, March 08, 2009

Spread the Word to End the Word: Clinically Speaking

When my daughter who has Down syndrome was born I had a visceral reaction to the use of the word "R*tard" as a playground insult (I wrote about that here.)

You can ask my kids, I have always had an extremely low tolerance for namecalling of any kind, but THAT WORD (as my friends who are self-advocates call it) with its ability to degrade its intended victim and a whole class of people with disabilities--usually without the user even knowing it--infuriates me.

And nowadays I think the phrase needs to be re-thought and replaced in every context.

I did not always feel this way. While I knew I could not tolerate the use of THAT WORD as an insult, I was not uncomfortable with its use as clinical terminology, or in 'official' verbage. Until, through my Partners in Policymaking course, I made friends with several self-advocates.

One day over coffee one of my friends told me this story:

Seems she rode her town's city bus to work each morning and when she got on the bus the driver would make a loud remark about her going to "The R*tard Room." After months of this one of the men who also got off at her stop told the driver to stop saying it. The driver replied that it wasn't an insult, it was on the sign over the door. My friend--who doesn't read--had had no idea that that's what the sign said. From then on she cried when she had to walk under that sign and eventually she quit that job.

She couldn't believe her job gave her community permission to insult her.

Clinical Terminology:

It is time for clinicians to change their terminology. I realize teenagers need to feel they are flexing their muscles and need to say shocking things to feel heard, but clinicians need to move on!

Parents and self-advocates across the country are petitioning their governments to update terminology and join campaigns to end the r-word.

Clinicians (with some notable exceptions), on the other hand, are dragging their heels and harrumphing and wondering aloud whether such changes are necessary or wise...

Change already.


Because the people we exist to SERVE have asked us to. They assure us that those words hurt them.

That is enough of a reason.

We medical professionals are in danger at all times of abusing the status and power that our expertise gives us--here is an opportunity to remember that it was NEVER about us!

Scary Next Steps??

So, in the interest of being responsive on language issues I recently asked a few of my self-advocate friends which terms they preferred. I suggested Intellectual Disability, Cognitive Disability or Developmental Disability.

One of my friends thought 'Intellectual Disability' was code for 'stupid.' But everyone pretty much thought all of the terms were neutral. And then one of my friends dropped a bombshell on me...

"Why do you need any label at all?" she asked.

That question has been ringing in my head ever since... As a nurse NO LABELS makes me very nervous. How would I categorize? How would I treat? How would I evaluate? Where would I begin? How would I.... the questions go on and on....

Yeah, I would have to base decisions on the individual. I would have to evaluate based on the actual--to wait and see how the person actually presents. I would have to base everything on relationship...

And dang if all those don't sound like GOOD things...


So, if we make this change will further growth someday be necessary?


That's what happens in living organisms, isn't it?


rickismom said...

For once I disagree. There ARE times when labels are handy. Sometimes you WANT others to know the nature of a disability, so that expectations, assistance, and accomidations can be made accordingly. Obviously, the person should never be seen as TOTALLY being the label, but without labels of any kind, yuou would find yourself in a world that would be running to adapt/ change expectations at the last second (or later).

The problem is not the word, but the underlying fear and prejudice that have made it evolve into what it is.

There was no reason other than prejudice to label a room "the Retard Room.". The room is not an evaluation sheet, an application for aid. There is no reason the room needed to be labeled as to the IQ of the users, just as no other room is.And the bus driver is really infuriating. but I still beleive you need a word in order to convey, when needed, information.

thecatsmeow said...

This kind of discussion always reminds me of a debate one lady had over what exactly to "call" my particular constellation of neurological glitches and idiosyncracies in the papers necessary to secure appropriate services. I said "call it 'mud' for all I care, it's not really the terminology that's important per se. Use whatever term will be appropriate and most helpful in getting access to the kinds of services I need in order to hold down an appropriate job despite those issues."

I knew where the debate was originating, though, because the documentation that had accumulated over the years carried various labels within it; I knew I was in trouble that day though when she started asking a boatload of questions regarding my tangles with hydrocephalus...

The labels are not the problem; it's the tendency of people to assume you ARE the label (and thus somehow less than human). Don't know how we (as people with disabilities and those who care for them) can bust that apart, but I've been working on it for a long time. People hear certain diagnoses attached to a person and seem to automatically make assumptions about that person's abilities (or lack thereof); therein lies the real problem.

Terri said...

rickismom--I am sure the place was not called the r*tard room--I think it was run by the Office of Mental Retardation and Developmental Disability.

It is extremely challenging to consider life without labelling--indeed, it may not be possible. But it is well worth challenging ourselves to think about it... We should ask ourselves is the label necessary here? or here? When it is, use it... When it isn't, go another way.

catsmeow--the labels never bothered me either, but they have never boxed me in... they do a job on some folks though. You're right, many people do not separate what people are called from what they ARE--especially in regard to cognitive disabilities. If that separation were understood, there would be no issue.

cripchick said...

yes. yes. yes.

thanks for being a rockin' ally.

Tera said...

Yes. This.

My question is: how can we continue our advocacy after the r-word is removed from clinical discourse? (I'm *totally* not trying to be obnoxious and difficult, or trying to put anybody on the spot).

Like rickismom said, a big problem is the ableism that says people with cognitive disabilities are lesser than other people. (Even within the disability community, there's still a lot of crap like: "At least we're not r****!").

I know what part of the answer is: call people on their bigotry, even when it's easier to let it slide. So maybe I really *am* just being difficult after all :)

And speaking of me being difficult, I *totally* see the benefit(s) of not needing a medical label, period. Doctors have been evaluating me since I was very small. A lot of the evaluations came to: "We don't know what the etiology of Tera's disorder is, but she has difficulty with (a), (b) and (c) is good at (d), (e) and (f), and you can help her by doing (g), (h) and (i)."

These evaluations were several pages long, and had no diagnostic box you could skim for. My teachers didn't read them.

When I was 13, somebody finally gave me a label. And while the evaluation was very good, the fact that it gave me a label led to this problem:

"Tera has many signs of what Byron Rourke calls a nonverbal learning disability. Rourke says people with NLD need (a), (b), and (c). Therefore, Tera needs (a), (b) and (c)."

A label is a convenient shorthand. Unfortunately, shorthand doesn't always tell you what you need to know about a person. This is part of my problem with functioning levels: labels like "high-functioning" or "low-functioning" don't tell me anything about the person they're applied to. They assume that all "high-functioning" people have all the same traits, and that all "low-functioning" people have all the same traits.

amchau said...

I think no-labels is probably the way to go, because any replacement word for a group will become an insult. From my personal observation, what has happened here in the UK is that 'retard' seems to have been dropped some years ago, and been replaced, at least in schools, with 'special needs'. The only effect that has had is that 'you're special' is now a playground insult.

Terri said...

Thank you for the link Miss Cripchick!

Tera, yes, the convenience of a label is usually an illusion and it's always superceded by individuality--whether we acknowledge it or not. Trying to paint any individual with the broad brush of any label, as you point out, is ludicrous. I have been known to tease my son that he wasn't doing NLD right and suggest he should read the manual (he thought that was funny!)

amchau, I agree that the language will "evolve" (is devolve a word?) but as Tera said, I see confronting language as a way of confronting bigotry which everyone understands and which follows the path of other civil rights movements. It's a handle we can get a hold of.

Anonymous said...

Speaking as someone with a few disabilities (tourettes, aspergers, depression victim) I can tell you that it is hard to come to terms with the usage of the word. I've talked about how my kind are viewed as "retards," and that's why people obsess over needing to help it. It's not a curse, and it's certainly not killing me.

If you need a category, I suggest using "Socially and Developmentally Impaired (SDI)."