Tuesday, August 29, 2017

10:00 O'clock Pear

I had my 10 o'clock pear at 8 this morning. I live a lot of my life like that. The cool thing is, I get to make that call. I get to feel the regret for eating the pear now, when 10:00 hits. But right now the pleasure of the just ripe, just right, pear is still tickling at my taste buds. So, I'll cope at 10. I will. I've learned to, because I make tiny little decisions that have tiny little consequences all the time.

The other day I heard a mother say to a teen aged child with a disability, "No, you know you don't have snack until 2." It was 1:45, I shit you not. The girl, looked defiant for a couple of seconds and then sat back into compliance.

Really?

That mattered?

Really?

I know, I know, I know, that I don't know the people or the situation and there very well might have been a reason for the 15 minute delay. So don't. But can we all realize that people with disabilities are over programed, over scheduled, over controlled and worst of all, over ruled, all the time. All. The. Time.

Simple requests get called behaviours.

Realistic disagreement gets called non compliance.

There's a lot more names that we call people with disabilities, isn't there?

But when you live in a world where you:

Have to ask for a snack when others your age simply get what they want from the fridge.

Have to eat on a schedule you didn't set and probably weren't consulted on.

Have no flexibility on that schedule or any other schedule.

Isn't there a need for even the tiniest of rebellions?

"Speak up!" "Disagree!" "State Your Point!" I yelled all these things in my mind.

But she doesn't need my voice.

She needs her own.

I pray one day she'll have one.

5 comments:

Andrea Shettle, MSW said...

Dave,
I'd like to share with you a personal reaction I had while reading your blog post today. While reading, I remembered this time back when I was in high school. I was at a public school with a mainstreaming program for deaf students from not only that town but also commuted in from other towns nearby. This meant there was a whole team of sign language interpreters covering different classes with different students, with some of the interpreters specializing in interpreting for specific subjects. At some point during my high school years my interpreters started saying that I wasn't "using them" appropriately because I was, according to them, asking questions that more appropriately should have been asked of the teachers. So they and my guidance counselor devised a behavior plan where they recorded incidents when I was not "appropriate" in how I used them.

I don't remember all the details of every question I ever asked to interpreters -- maybe there were some questions mixed in there that really should have been asked to the teacher, I don't remember now. But the thing is, sometimes my questions were very specifically about an interpreter's particular use of a particular sign. Sometimes I was asking, "please finger spell that sign", often because I was trying to see if they were translating from the term I thought they were translating from or if the teacher was using a completely different term. Or sometimes I was asking them to finger spell the sign because it was a sign I had never seen before. But the interpreters at school never accepted that there could be any question that was appropriately asked to them and not the teacher. To them, when I was asking them to finger spell the word or clarify their translation choices or choice of sign, all of this was vocabulary questions that therefore related to the content and should be asked to the teachers. I tried to explain that often I probably DID already know the English terminology in question, it was only their choice of sign that was not clear. So if they would just finger spell the word, there was a very good chance I would immediately recognize the word and would remember in the future that when the interpreter uses this sign again, they mean that particular word. But they kept insisting and kept marking it down as an inappropriate question.

So after a while of this, I basically stopped asking interpreters anything else for the rest of high school. Even if it meant being completely lost about the topic being discussed in class because I wasn't clear about the interpreters' translation choices.

And it took me years into my adulthood before I became comfortable with asking interpreters questions that were in fact legitimately directed at them (i.e., questions in relation to their translation choices) and not the person speaking. I eventually learned that, in the real world, most professional, qualified sign interpreters DO recognize that there ARE certain questions that are only appropriately asked of them and not the speaker and will be fine with being asked these questions.

I've been angry with those interpreters I had in high school for many years. But somehow it did not occur to me, until now, upon reading this particular post, to call what happened to me, "compliance training". Even after reading your many other blog posts over the past few years about compliance, for some reason it wasn't until now that I finally made the connection to myself and that particular incident.

I think the line that made it hit home to me is where you said, "Realistic disagreement gets called non compliance." I had legitimate reasons for disagreeing with some of what the interpreters back then called "inappropriate" questions, but was not allowed to assert my views.

Thank you, Dave, for provoking this thinking--and giving me terminology to understand my personal past experiences.

Andrea S.

Sherry-Lynn K said...

I hope she finds her own voice one day too. :( Who knows? There may be a medical reason for the specific time to have a snack, but all too often it is simply a matter of a schedule being created and that schedule being written in stone for no reason at all other than convenience for the caregiver.

Adelaide Dupont said...

She already does have her voice and her knowledge.

And so many do.

When all this voice and this knowledge is manifested.

However, I do wish life could be like "Come Said the Boy" by Mondo Rock.

Dave Hingsburger said...

Andrea, I think the best part of all of us sharing stories, like you just did with me, is that we grow in understanding of each other and ourselves. I winced when I read of them taking data and judging the appropriateness of your questions, I winced both as a disabled person and as someone who has collected data. I learn from this. I learn from your experience and your stories. Thank you.

L said...

The other day I heard a mother say to a teen aged child with a disability, "No, you know you don't have snack until 2." It was 1:45, I shit you not. The girl, looked defiant for a couple of seconds and then sat back into compliance.

Yes, unless there were very special circumstances

(like type 1 diabetes which often comes with a need for finger-prick blood glucose tests before/after food; or medication needing to be taken with food at 2pm sharp)

I think that was incredibly rude, patronizing, condescending, controlling and unnecessary of the mother.