Tuesday, June 26, 2007

Listen To Me


Being able to communicate is, in my opinion, a basic human function. Everyone needs to be able to let others know if they need help, if they are in pain, if something frightens them, if they want or don’t want something, if they want company or if they just want to be left alone. But communication should go further than just basic needs and desires. Sharing a conversation, sharing joy and sorrow, having a sounding board for a problem, or just having the ability to complain are important avenues for interaction with others.

Even though Ashley’s doctors told me when I adopted her that she would never be able to talk or communicate, they were so wrong. Even though her teachers and other school staff told me she would never be able to understand and use sign language, they too were so wrong. With very intensive supports and therapies, and with loving and committed caregivers, Ashley has turned into quite a communicator. But I saw some folks yesterday who had not been given the supports that Ashley has, and as a result I never witnessed any interaction in the three hour time period I was around these folks.

Ashley, Corey, Chip, Amy and I went to a baseball game yesterday. Ashley was in her wheel chair because the steps are a bit too steep for her, and because we wanted the ‘good’ seats that are reserved for people with disabilities. Parked beside Ashley were five adults in their wheelchairs, adults with very significant physical disabilities. Their chairs were pushed into position by an adult man and woman – people I believe were staff at the institution in which the folks lived. That was all the interaction there was until three hours later, and the same adult man and woman, unlocked the wheelchairs and began returning the five folks to their waiting van.

Why couldn’t the staff members speak to the adults? Why didn’t the staff ever offer a drink or food – they (the staff) made sure that they had something to drink and eat themselves. Why couldn’t there be conversation about the game or the goings-on in the stadium? Why were the folks never asked if they were too warm and wanted to be moved into the shade? Why didn’t the staff ask if they were enjoying the game?

Each of the five adults had to potential for communication, even though none of them were probably capable of speech. Four of the five had fine motor ability in at least one of their hands, and could have operated a communication board. The other person had a very definite eye gaze (easily witnessed as he watched each attractive woman walk up and down the stairs). And eye gaze can also be used with a communication board. How did these five people get to be in their 30’s, 40’s and 50’s without someone recognizing this need for communication?

These five people were, of course, communicating, but no one took the time to notice or build on the communication. They were communicating boredom, despair and dejection. When the chair of one of the older women was pulled back to leave the game, the woman squealed very loudly. She was communicating. The older man who fell asleep during the 5th inning of the game was communicating. And the 30ish year old man who ate an entire box of cookies during the game was also communicating.

When discussing the rights of people with disabilities, the right to communicate should not be overlooked. Curb cuts for wheelchairs are a great thing – sharing a smile and a sentence is even greater.

1 comment:

Attila The Mom said...

"Even though Ashley’s doctors told me when I adopted her that she would never be able to talk or communicate, they were so wrong."

I am SO THERE!!

The "experts" said that Little Guy would never be able to communicate meaningfully. BS. Now we can't get him to stop!

You've already gotten the fact that you will always be the best expert on your child.

You GO girl!