Monday, October 06, 2014

Shock Radio: What Was Said What Was Meant

(warning: this post contains the use of the 'r-word' in a quote and in a reference to the quote.)

On our drive across the top of the States, headed, towards the Maritimes Joe and I have been surfing up and down the radio dial. Oftentimes we can find a station we want to listen to, but equally often it only last for a few miles before a turn in the road or a change in elevation replaces music with static. It's been a bit frustrating.

Yesterday I was using the search button, fruitlessly, to find something to listen to. So we heard a few seconds of a lot of stations. On one of the stations we heard the voice of an older man reading a script about 'Skippy.' Skippy was a young boy with cerebral palsy. Once having told us that, he reads on to describe what cerebral palsy is and he gets, fairly predictably to the part when it seems mandatory to say, something like, "those with cerebral palsy have minds that are perfectly fine, however they are often treated and spoken to as if they are retarded." He went on to say how wrong this was, that they should "never be treated as if they are retarded."

Before I continue let me say that I really didn't want to type that word, the 'R word.' I decided, in the end that I needed to because it's what he said and because the sheer shock of the word is part and parcel of what I want to say. As the quoting is finished, rest assured I will refer to the 'word' but not use it again until the end of this piece, where, again, I think it is needed as a reference back to the radio broadcast.

On hearing this short bit of broadcast, you can bet my thumb pushed the search button right after he'd mentioned how horrible it was to be treated that way. I turned to Joe and expressed extreme frustration using another word, that begins with another letter lower down in the alphabet. We both lit into the station for airing this, the editor for not catching that this word should not be used as it's considered offensive by pretty much anyone who loves both language and people. It's unnecessary. It hurts. That's enough.

I want to look, though, a little bit past how he said what he said to what he actually said. He is making comment that people with other disabilities are resentful of being treated like they have an intellectual disability. This, of course, plays into the hierarchy of disability and people don't want to be treated like they are a 'notch' down from where they are on that hierarchy. But it also is a commentary that being treated 'that way' is unpleasant and uncomfortable and damages self hood.

And what way is that?

You don't have to think hard?

Let's make a brief list, feel free to add your own. Being treated 'that way' means:

1) being spoken to in the voice used for puppies who piss on the floor.
2) being on the outside circle of conversations about you
3) being invisible to clerks and waiters and receptionists and doctors ...
4) being highly visible to abusers, rapists and bullies
5) being required to receive paid support from people you don't hire
6) being assumed to have no future
7) being assumed to have no ability to learn
8) being assumed, constantly, to be less than you are
9) being constantly expected to fail
10) being the 'dear' in the phrase, 'oh the poor little dear'

I made this list in less than three minutes, exactly as long as it took me to type the words. Trouble is, this is no where near an exhaustive list. Where did I get this list? I avoided my own personal experience with seeing how people with disabilities are treated, I dove into memory looking for all the things that people with intellectual disabilities have said in workshops, either abuse prevention or rights training or bullying prevention,

So let me say clearly what I've heard over and over again.

People with intellectual disabilities don't want to be treated like the are 'retarded' either.They'd, like all of us, prefer even just a little bit of respect.


Glee said...

Exactly Dave!

Maggie said...


And: recently I've been listening more closely to the things people say, and discovering that we humans (at least, the Anglophones in the Northeast of White America - I don't have enough data for anyone else) have a whole bunch of hierarchic assumptions that can be used to elevate one and put down another.

"My boss treats me like a child." ... at the end of a discussion about inappropriate touch, micromanaging, getting yelled at in public for mistakes. Right away I'm thinking, "Really? Is that how we should be treating children?"

Also for "like an animal" ... and lots of other odious comparisons.

Thanks for bringing this forward about the hierarchy of mental ability.

CapriUni said...

You're right. If such treatment is unjust for some, it's unjust for all. Period.

And now, it's confession time: As someone with CP, I used to be in that "Don't put me in a category with those people!" camp.

I've grown up, now, and am in the process of growing out of my earlier prejudice (I think, like alcoholism, overcoming your own bigotries is a "one day at a time" struggle). But I still think the misdiagnosis of intellectual disabilities is a pernicious and destructive practice. It reminds me of a blog post you wrote (a couple years ago ??) of seeing a woman with Down Syndrome strapped into a wheelchair by her "caregivers"* because it made her easier to handle, and not because she needed it as a mobility aid (and even if she had needed it as mobility aid, strapping her down and ignoring her wishes was a crime).

We, all of us, need to combine our anger, and focus it on changing the attitude that it's acceptable to "write off" anyone's capabilities, because of a diagnosis. The R-word is still in the medical literature as an official term, however, and that's a problem. I looked up its history, this summer, and it turns out it was coined by doctors in an attempt to convey to parents that their children's capabilities were not set in stone. But although they tried to say it, I think they failed to believe it. And intent speaks louder than vocabulary.

*"Caregiver* takes on a whole new connotation when you realize that "Care" originally meant "Trouble" or "Worry."

Ettina said...

Actually, although there certainly are people with CP and normal (or above normal) IQ, a substantial proportion of people with CP do in fact have cognitive disabilities.

CapriUni said...

Ettina: I've no doubt that there are people who have C.P. also have an intellectual disability (because in developed countries, premature birth is a primary factor, and that lead to many different complications in the brain).

However, having grown up alongside others with C.P., and seen how those diagnosed as intellectual disabilities were treated, I have a strong suspicion that confirmation bias leads to overdiagnosis of intellectual disability.

aaron said...

what a great article; thanks!

Andrea S. said...

Agreed with CapriUni. There is a LONG history of "experts" (as well as members of the general public) who just assume that people who do not communicate in a way THEY ("experts" and members of the general public) can understand or recognize as communication necessarily have intellectual disabilities. Although not all people with CP speak differently from people without, many do. And confirmation bias can become very insidious and ugly when "experts" are "diagnosing" intellectual disability. I seriously doubt that the proportion of people with CP who also have intellectual disabilities is anywhere nearly as "substantial" as some "experts" claim it is. Many of the people with CP being diagnosed with intellectual disability have a severe form of CP--and if it is sufficiently severe then that may make it much harder for the person with CP to express themselves in a way that others accustomed to relying on language for communication can understand. It is simply not possible to accurate assess a person's IQ if you haven't even established a reliable system of communication with them. Yet some unethical practitioners will still proceed to do this, which inevitably results in a (usually false) diagnosis of intellectual disability. This has also historically sometimes happened with deaf children. I know one deaf woman who was "diagnosed" with an IQ of 50 and placed in a classroom of hearing children with intellectual disabilities for years until, finally, at age 8, her teacher personally brought her to an audiologist who confirmed what the teacher (and no one else) had suspected for years--that she was only deaf, not with an intellectual disability. In high school, her IQ was re-tested and found to be 150.

But, even if all this were not the case. Even if such a substantive portion of people with CP did actually have intellectual disabilities ... so what? With intellectual disabilities or not, all people deserve to be treated with a certain modicum of decency and respect. Which is usually the issue when people complain of being treated "as if they were r****d"

Anonymous said...

So well said. Thank you Dave.

Tam said...

Well said. To be treated in any if those ways is to be demeaned, and nobody, regardless if their intellectual capacity wants or deserves to be demeaned.

Anonymous said...

You forgot one . . . being interrupted in a lively conversation by someone who is being paid to support you and who demands that you leave the conversation and go and use the washroom. (this person is not for whom incontinence is a problem - even if it were, the interruption is inexcusable!)

CapriUni said...

Andrea S.: I've been turning this problem over in my mind for a while: We really need to work out a way of talking about misdiagnosis of intellectual disability in a way that dismantles the hierarchy instead of perpetuating it.

I'm not there, yet, though.