I’d like to go back to something that I was talking about earlier in the month, before the world was rocked by the school shooting in Newton, Connecticut: barriers, which was the the theme of this year’s International Persons with Disabilities day on Dec. 1. Communication barriers, to be exacy.
My niece, Gillian, is now almost a year-and-a-half. Her vocabulary is becoming quite extensive as her speaking abilities develop, apparently. On the phone with my sister the other day, she said that Gillian is at the stage where she’s starting to really starting to repeat what other people say. She was doing a bit of this when I last saw her, but more experimenting with the limited vocabulary that she had at the time: “Mommy” (her name for both her mother and her father), the names of both her pets, the names of the foods that she liked and disliked, one-word identifiers for her favourite books and toys, “up”, “down”, and (of course) “no”.
Over the summer, our cousin, a speech pathologist, visited my sister for a weekend. After listening to Gillian trying to talk, she said, “Gillian knows exactly what she wants to say. She just can’t say it in our words yet.”
The other way to look at that, of course, is that we just couldn’t understand “Gillian-speak”.
Everyday Communication and Everyday Communication Barriers
I’ve worked with some people with some profoundly physically and intellectually disabled people, people who needed assistance with all activities with daily living with whom only only the most basic communication was possible at the time: they smiled and laughed when they were happy, cried when sad or in pain, refused to eat when they no longer wanted food, etc. Major communication barriers. Sometimes context gave clues as to what was making them happy or sad. Other times I have had no idea. I’d wonder, “What would you tell me if there was some sort of language that we both shared right now? I would probably tell the entire world to fuck off.”
I can’t imagine anything more frustrating than to find myself in a situation where I had to accept total care from people and to not be able to say:
- “I don’t like that”
- “More of that, please”
- “I’m in pain. Please help me.”
- “I’m not hungry/thirsty”
- “I’m starving/so thirsty”
- “I’m so happy/sad/scared/lonely/bored/angry/frustrated.”
- “I’d like to _____.”
- “Back off before I smack you.”
- “Can I see/call my family?”
Those kind of communication barriers between a perspm and the rest of the world must be hell to live with.
I’m funny when I have to deal with communication barriers. When I encounter them with the people I support, and people that I can see are having a genuinely difficult time communicating (people with a speech impairment, for example), I’m about as patient as it gets. I’m not so patient when I have it in my head that people can communicate with me effectively and are just refusing to. But I need to stop making assumptions about who can communicate effectively and who can’t. Because while there are times when it seems like I’m a very effective communicator, there are others where I can’t remember words, where I reverse words, and where I really struggle to organize my speech. I need to remember that It seems to me that this has gotten worse since the stroke, but that doesn’t make sense to me, as I believe that all the structures involved with speech are in a different part of my head from where I bled.
It’s really gratifying to see technology like the iPad break down communication barriers and open the world of verbal communication particularly to people with autism. And for those that for whom no formal communication systems have been developed because the perception that they’re “too disabled”, we really do need to assume that there’s a person in there and keep trying finding ways to reach them.
When they can’t find ways to speak our language, we need to find ways to speak theirs – everyone has a way of communicating. It becomes incumbent on us to remove communication barriers.
How do you remove communication barriers with people in your life?
“60 Minutes” Piece on Autism, Communication, and iPads: http://www.cbsnews.com/8301-18560_162-57460553/apps-for-autism-communicating-on-the-ipad/