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.
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...
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?