My daughter sent me a link to a TED talk by Roger Ebert, movie critic who had cancer that led to his jaw removal and losing his ability to speak. He wrote the presentation but it was read by his wife and two friends. Roger’s mouth was held in a continual open-mouthed smile as he animated with his hands various comments as the his words were read. He shared his journey of cancer, surgery and finding a computer that could speak, eventually, with his own voice recreated from recordings of his TV show.
My mother claimed to have known Ebert. Heidi sent the link to me because Mom also lost her voice to cancer. She lived the last 10 years of her life in Minnesota near my family. She was not nationally known like Ebert, but she was well-known in the circles of Alcoholics Anonymous as a woman of great wisdom and was invited to speak around the country, often with my Dad who spoke as a member of Alanon. Fran was considered “tough” and her friends told me at her funeral that she “pulled no punches” when it came to being honest about living the program.
Ebert’s wife was reading when he shared his experience of people’s reaction to his disability. They would speak loudly to him as though he couldn’t hear and they would avoid making contact eye contact with him. I thought of Mom because this was her experience. When I would take her out and about, people would speak to me when their words were actually intended for her. It was crazy and only added to her feelings of isolation.
I remember one time when I took her to the University of Minnesota for a doctor’s appointment and in the waiting room there was a family with their little boy who had cerebral palsy. At one point the mother approached my mother and, looking at her directly, she said, “My son is curious about that thing you are holding up to your throat. He wants to know how it works.”
I had to help at that point because Mom was not adept at using the electro larynx so that strangers could understand her. Yet, as I spoke, she animated with her hands, just as Ebert had done during the TED talk. The mother never looked at me. She understood that even though the words were coming from my mouth, they were my mother’s.
“Can my son hold it?” she asked.
Mom handed the boy her electro larynx. He studied it, turning it around with his crippled hands. Mom showed him how to press the button that activated the sound and he was startled by the sound and vibration. He laughed. Mom laughed, too, though her laughter had no sound.
After the encounter, Mom sat quietly but I could sense a joy in her. For a short time someone, a stranger, had seen her, had seen her, and had actually listened to her, to her. The mother of this little boy who had his own disabilities and desire to connect with people had learned an important lesson from her son.
If I could change the world just one little bit, I would remove the fear people have of those with disabilities. I would suggest that people take a risk and pay attention to what they are doing. Look a person in a wheel chair (or who wears sunglasses and carries a white cane) and talk about the weather or about their family or ask questions about their work… actually see them and if they talk, actually listen to them. It would be a great gift to them…and to you.