By Terry Robertson, EdD
It was our birthday. When I got to my twin sister Sherry’s house, she was sitting on the sofa in a pretty birthday outfit, complete with red lipstick. I was grateful for the big smile and hug she gave me when I arrived, and together we headed out for birthday dinner.
Along the way I updated my twin sister on everything going on in our family. Being non-verbal, Sherry smiled quietly and gently rocked back and forth in her seat, using elongated vowel sounds every now and then to echo sounds I made. I ordered the Chicken Special for each of us – I thought it would be a nice birthday treat. Sherry inhaled down her dinner roll, and I could see her staring intensely at my roll from across the table. “I know, you want my roll, right?” I laughed, and handed it over. We both had coffee and dessert too, since it was free for our birthdays. All in all, it was a nice meal, and a nice time together. We topped it off with a walk around the lake, feeding the ducks as we went.
Back at Sherry’s home, I came inside to see her room, and saw how staff had thoughtfully laid out pajamas for Sherry. I hugged her goodbye and headed back home. But, as I reflected more and more upon the day, a feeling of guilt slowly washed over me. I realized that Sherry’s whole day had consisted of choices, and none of them had been made by her.
Imagine waking up and having no voice. Imagine someone making every decision about your life, rarely giving you a chance to voice your preferences about food, clothes, activities, people, and more. I imagine Sherry’s life feels this way most of the time. I thought back on our day together and wondered why I didn’t explain the menu choices so she could have chosen one of them. I thought about the dinner roll and wondered why I hadn’t ordered another one for her instead of giving her mine. I had controlled the whole encounter. I thought about the pajamas already laid out for her and wondered what if she had preferred to sit up and have a cup of tea before changing for bed? In our own ways, we had all shown our love for Sherry, but we had denied her many opportunities to have a say about her day.
Every individual at every cognitive level deserves the opportunity to make decisions when they can, and the support to communicate their wants and needs as effectively as possible. Sherry communicates the only way she has known, using bodily gestures and verbal sounds. She was never assessed for her capacity to learn basic communication skills or use a communication device. It is amazing how she can communicate in her own way, but as I get older alongside her I realize it is not sufficient. All individuals with severe disabilities deserve to be evaluated for communication support. If they can be taught how to use augmentative or alternative communication (AAC) devices, we should find ways to provide them, because having the right to a voice is the foundation of life, liberty, and the pursuit of happiness.
Thinking back on the horrors of institutional abuse and neglect for many with severe disabilities in the past, a lack of communication ability is what prevented these individuals from voicing their fears, pains, and loneliness. And with today’s adaptive technology and an increased awareness of the rights and responsibilities of individuals in the disability arena, I am hopeful that more choices in life can be made by those individuals who are impacted by those very choices. I am hopeful that families and care providers can become more aware of the need to provide communication support. And I am hopeful that I can find a way for Sherry to become involved in important choices in the years ahead as we celebrate many more birthdays together.
Professor with expertise in language and literacy
Board Member of The Arc of GHN