Monday, January 12, 2009
Communication: It Seems So Simple
I spend a great deal of time thinking about communication, mainly in terms of how we express ourselves and how that expression is interpreted. How many times have you been in a conversation with one person or many and walked away with entirely different ideas of what was just discussed? Communication can create clarity or confusion, and has the power to generate every emotion we know. Few elements in our life have a greater impact.
I recently reunited with a college friend, Tali Wendrow, whose 15-year-old daughter, Aislinn, is autistic. Over the years, Tali and her husband, Julian, tried a myriad of different therapies and methods for communicating with Aislinn, but none got her much beyond the basics. Their quest for finding a way for Aislinn to express real ideas, desires and dislikes lead them to try ‘facilitated communication,' known as ‘FC' when Aislinn was 11-years-old. FC is a process by which a facilitator supports the hand or arm of a communicatively impaired individual who uses a keyboard or typing device to express herself. FC proved to be a breakthrough experience for the Wendrows. Occasionally, Aislinn typed statements that didn't make sense or weren't true, but Tali and Julian know her well and weed out fiction from reality. Eventually, their daughter was able to provide genuine input when asked her opinion so her parents no longer had to make unilateral decisions for her. She was able to connect with others around her and even more importantly – they connected with her in new, substantive ways. Aislinn was able to participate in a broader range of activities, including age-level academics. Instead of being left out, she was included. Her level of joy increased dramatically, as did her parents'. It was an extraordinary new level of communication for them all, empowering and dignifying.
One day in November, 2007, while Aislinn was working with a facilitator at school, she wrote something highly inflammatory via FC. In a nutshell, the alleged statements led to her parents' arrest and she and her brother were put into foster care for over three months. However, FC is a controversial communication tool and ultimately, the charges were dropped because of its unreliability, as well as the fact that the alleged statements by Aislinn were false. Click here for the story: http://freep.com/apps/pbcs.dll/article?AID=/20080317/COL04/803170336#pluckcomments
The irony that the very thing that opened up communication in the Wendrows' world is the same thing that brought them down, and then ultimately saved them, is profound. Yet, it's easy to understand why they were such proponents of FC. The desire to communicate is primal, for each and every one of us. Imagine not being able to genuinely communicate with your child or parent or sibling or friend or lover. To not be able to say the simplest things like ‘that tastes good' or ‘I miss you' or ‘I don't understand why you like spinning classes.' I had lunch today with a friend and we exchanged a deluge of information, face-to-face, rapid fire and connected in a million ways. It was so easy and so enjoyable for us both. This isn't the reality for a person with autism or those in her life. Yet, the concept is hard to grasp in a world where we are consumed with communication – phones are omnipresent, email, texts, IM, tv, radio, films, Facebook, YouTube. We have total freedom to express ourselves. And we take it for granted.