What Would Ruth Say?
Three Evidence-Based Strategies to Support Children with Challenging Disabilities.
Some of us work with or live with children who have profound challenges affecting their lives. Their disabilities may be physical, intellectual, emotional, or a combination of several conditions. Educators and parents often struggle to help children communicate preferences, engage with others, or find meaning in their lives. The way we support these children can make a world of difference to them today and in the future.
Ruth Sienkiewicz-Mercer faced enormous challenges yet found a way to change her life and the lives of others through perseverance and advocacy. Whenever I hear about a child with severe challenges who is struggling, I ask myself, “What would Ruth say?” What would she suggest to support the child in question? Here’s the true story of my hero—Ruth Sienkiewicz-Mercer:
Imagine lying in a bed for years, being force-fed, bathed, and clothed, but having no opportunity to communicate at all. In her own words, Ruth described the situation she faced throughout her entire youth as miserable and painful.
Born in 1950, Ruth was a healthy baby who experienced a severe bout of encephalitis at the age of five weeks that led to a diagnosis of cerebral palsy. Her control over her entire body, except for her face and digestive system, was severely impaired; she could not care for herself or communicate with others. Due to her inability to communicate, she was diagnosed as severely intellectually disabled at the age of five.
As a preteen, Ruth was sent to the Belchertown State School, an institution for mentally and physically disabled individuals. She spent most of the next eight years lying in bed in a ward with schizophrenic patients, where she was often force-fed and it was assumed that she had no awareness of the world around her.
A staff turnover in 1967 began to change things, as Ruth learned to communicate with staff and formed friendships with them. When the school finally established a physical therapy and education program, a basic word board was created, providing her with a robust method of communication for the first time.
After this breakthrough, things began to improve. Ruth was moved to a wheelchair and began to communicate using word boards with her caregivers. This involved caregivers using boards with pictures, words or letters and watching for Ruth’s signals for the words she wanted to use. For the first time she was able to express herself.
Ruth began to flourish and at the age of 27 she finally left Belchertown, moving into an assisted living unit with others from the school. She described that day as “one of the happiest days of my life, as we drove away from a life of misery and pain to a life of freedoms: the freedoms of independent living.” Ruth fell in love and in 1980 married a fellow ex-patient from Belchertown. They moved into their own apartment together, assisted by personal caregivers.
After her departure from Belchertown, Ruth became a best-selling author and disability rights activist, giving speeches (with the aid of an assistant and later a speech synthesizer) in cities across America. Her efforts may have contributed to the closure of Belchertown State School in 1992.
Why is Ruth’s story shared in such detail here? Because we know many children who could be Ruth. These children are evaluated by various medical and education professionals who may decide that they are uneducable. Therapists, teachers, and families may review the evaluations and make assumptions about a child’s abilities and future possibilities (Sienkiewicz-Mercer & Kaplan, 1989). What would Ruth say about this?
Here are a few quotes by Ruth Sienkiewicz-Mercer that can help us understand how best to support individuals with significant challenges:
“As long as people considered my brain useless and my facial expressions and sounds meaningless, I was doomed to remain “voiceless.””
“Communication is the starting point for self-determination. Without it, there can be no understanding between people. Every person needs to communicate in order to establish his or her own ideas, to let others know how he or she feels, to choose what he or she wants and when he or she wants it, to assert his or her opinion, to establish relationships, and to achieve everything that has to do with being an individual.”
Three Evidence-Informed Strategies to Promote Self-Determination in Children with Complex Challenges
Let’s look at three evidence-informed approaches to promote independence, engagement, and satisfaction in the lives of children who experience significant daily challenges. These simple strategies can be used with children every day.
1. Listen to the child.
Even if a child has limited verbal skills, we can listen to their words, their sounds, their body language, and their facial expressions. The same listening strategies that we teach children should apply to ourselves in our role as their supporter/caregiver. The listener needs to look at the child, ask questions, refrain from interrupting, and take notes to help remember what the child has shared (Wehmeyer et al., 2017).
2. Use Choice Boards.
For children who have difficulty making choices, a choice board can be helpful. Even if a child is non-verbal, a choice board is an easy way for them to express themselves. A good choice board provides visuals of the available options and information about each alternative. Encourage the child to point or use bingo marker to indicate their preferences (Cannella et al., 2005; Vanderbilt University, 2013).
3. Simplify activity to enable participation.
Instead of doing everything for the child, find ways to simplify activities to enable the child to participate. Even if they are unable to complete a task, they may be able to do a small part of the activity or decide where the activity will take place. You can ask them, “Would you like to use the red crayon or the green one?” Or “Where should we do this activity -- by the window or on the floor mat?”
The next time you’re with a child who is struggling with issues related to communication and independence, ask yourself, “What would Ruth do?” I believe that Ruth would want every child to have the maximum opportunity to make choices and decisions about their daily life. Even if the decision seems insignificant to me, it can mean everything to a child to be able to select their clothing, pick their choice of food, decide where / when they want to do an activity, or to stand up for what they think is important.
Takeaway: During every encounter with a child, I suggest that we ask ourselves “What would Ruth do?” and give the child opportunities to make choices. We may be the only people giving them the chance to express their preferences, and this can change their world!
References
Cannella, H. I., O'Reilly, M. F., & Lancioni, G. E. (2005). Choice and preference assessment research with people with severe to profound developmental disabilities: a review of the literature. Research in developmental disabilities, 26(1), 1–15. https://doi.org/10.1016/j.ridd.2004.01.006
Sienkiewicz-Mercer, R., & Kaplan, S. B. (1989). I raise my eyes to say yes. Houghton Mifflin.
Vanderbilt University (2013). Promoting self-determination among students with disabilities. Retrieved from https://vkc.mc.vanderbilt.edu/assets/files/resources/psiSelfdetermination.pdf
Wehmeyer, M. L., Shogren, K. A., Little, T. D., & Lopez, S. J. (2017). Development of self-determination through the life-course. Springer. https://doi.org/10.1007/978-94-024-1042-6_6
Wehmeyer, M. L., & Zhao, Y. (2020). Teaching students to become self-determined learners. Association for Supervision & Curriculum Development.
