By Naome Soleil, Ph.D.
As a retired educator with a different brain, I welcome this opportunity to share both personal and professional experiences with the neurodiverse community and parent advocates, teacher advocates, and self-advocates. Advocacy invites connection, shared knowledge, understanding, and empathy. We are more likely to work effectively as a team by establishing positive relationships. Advocates not only raise awareness of the various challenges and needs of individuals with different brains, but also act in an informed way to create a supportive network. The culture of education continues to advance through inclusion of students with different brains and advocacy that cracks open the light on possibilities and potential.
The word “holistic” relates to wholeness, such as teaching the whole person. We are far more than a brain, learning from the neck up. What I mean, then, by holistic advocacy is recognition of the whole person in which mind, body, emotions, and spirit are interconnected. Holistic advocacy can be a change maker when we slow down to listen, observe, connect, and respond to individuals with different brains. Each of us is born with gifts and preferences that begin to unfold from an early age. Note these roots of possibility. If nourished, they will grow strong over time. In her poem, A Lazy Thought, Eve Merriam reflects on why grownups in a rush don’t seem to grow up anymore, concluding that “It takes a lot/Of slow/To grow.” The process of developing talents and learning new skills is life-long and requires a holistic approach.
When I taught Special Education in a high school where English for two-thirds of the students was not their first language, I recalled the advice of a supervisor. “Never assume.” One of my students learned to write with a stick engraving language on the soft ground. Think how she felt sitting in a desk with pen and paper. Never assume the “experts” have the full story of a student’s life history. Brené Brown refers to the inner dialogue in our head that makes up stories or “confabulations” in an attempt to explain another person’s behavior or situation. Such a great word! Confabulations! The people I have met who are involved in holistic advocacy really care about the backstory in people’s lives in order to formulate a true story—a story that does not erase struggle but focuses on potential and realistic goals. I’ll give you a few examples from my Lived Experience Library that are home and school grown, and true.
A student assessed with ADHD came every school day to my Special Ed Resource Room for a Personal Life Management course and French tutoring. We connected. As a young boy, he endured significant emotional and physical trauma. Grade 10 was a turbulent year, so we saw a lot of each other. The Resource Room became a refuge to calm his storm of emotions. At times, he simply crossed the threshold of the classroom, took several deep breaths, turned away, and walked to his next class. What stands out for me now is his mother’s resilience as a parent advocate who attended IEP meetings with questions and suggestions. Michael McKnight wrote, “Resilience is rooted in love.” I agree. If the phone rang before 9 o’clock, this loving woman wanted me to know her son had a bad start that day and needed “firm but fair” support. We had a relationship of trust and respect. Over the months that we worked together, this angry, frustrated boy learned strategies to move forward, to reflect on his strengths, feel worthy, set goals, and find hope for the future.
Based on an in-class assessment, a Grade 1 teacher placed one of her students in the slow-learner group. The child, age 6, came from a low-income, single parent family. She left tests unfinished. Other than a call at work about her girl arriving late for school, the mother was not asked to meet the teacher. When the family moved in time to start Grade 2, the stigma of poverty was less obvious in this new location. The new teacher asked permission to have her new student assessed for learning disabilities. The school psychologist’s report showed the student was reading fluently at Grade 8 level. She had excellent comprehension but problems with auditory processing and distinguishing sound symbols for spelling. Her creative spelling continued until Grade 12 when her English teacher insisted she learn correct spelling to be eligible for a university scholarship. These two teacher advocates made a world of difference in recognizing the girl’s creative talent and nourishing her strengths. They chose respect and care to guide them.
At my first practicum as a student teacher, I asked for volunteers to pick a character from the play, The Glass Menagerie. A boy raised his hand and chose the most difficult script reading. After class, the supervising teacher advised me to have Plan B ready because the boy who chose the challenging part could not read. An assessment done in Grade 4 showing a very low score in reading had followed him through to Grade 11. Before the end of Grade 10, the student had asked permission from the principal to try Advanced English. Now, this was November. The student had never been asked to read aloud. With good intentions, his teacher did not want to embarrass him in front of his peers. The next day, the student came prepared and read fluently, in character. He seemed to be a natural for theatre. Then, he skipped class for three days. Success can feel overwhelming. In Happiness One Day at a Time, Marc Alain writes, “Success requires another form of courage—the courage to live a greater and more demanding life and to go beyond the personal limitations we have known so far.” When the student returned to class, we had a chance to talk about his struggles in elementary school. He had taught himself to read but kept quiet until Grade 10, when his desire to go to college after high school graduation, outgrew his safety net of silence. Self-advocacy needs to be encouraged from an early age.
Learning with a Different Brain
Before starting university at 36 years of age, I had to unlearn confabulations of others that I lacked intelligence. Though I worked hard to make the honor roll every semester and dreamed of being a high school music teacher, a school counsellor advised me to switch from academic to vocational training. My Math marks were too low for university. I felt a deep sense of shame and unworthiness and dropped out of school in Grade 11 to begin a secretarial course at a business college. At work, age 18, I learned strategies to record telephone numbers correctly. Filing numerically was hard. I knew where to locate the file, but no one else in the office did. 3743 could be in 7343 or 7433 or 3473. Any guesses on why my Math marks sank in high school? I have dyscalculia. Nothing to be ashamed of, yet, Brené Brown interviewed men and women for her shame research and 85% of the participants “could recall a school incident from their childhood that was so shaming that it changed how they thought of themselves as learners.” (written in Daring Greatly and quoted in Rising Strong, p. 83)
Becoming a teacher required the willingness to work three times as hard as student teachers without a learning disability. As a teacher, I triple checked student marks to ensure accuracy on homework, quizzes, assignments, tests, and report cards. In Special Education, my Learning Assistant assisted students with their Math homework. At the college and university levels technology had advanced, so computers calculated the students’ marks, but I still checked every mark to make sure a mark of 87 wasn’t logged onto the spreadsheet as 78.
In 1995, while studying for a Doctorate in Language and Literacy Education, I was diagnosed with a benign brain tumor. The probability of deafness and facial paralysis meant the end of a teaching career. However, my specialist felt surgery for me was a high risk option and recommended Gamma Knife Stereotactic Radiation that was not available in Canada. After radiation treatment in 1996 in Seattle, Washington, I took medical leave from graduate work to recalibrate my equilibrium and adjust to profound deafness in my left ear. With the passage of time, I now have significant hearing loss in my “good” right ear. That did not stop me from teaching beyond retirement age and tutoring students with disabilities until March 31, 2018.
Struggle builds empathy and resilience. Paulo Freire’s Pedagogy of the Oppressed has been influential in my teaching methods and research interests. Freire encouraged teachers to develop a partnership in learning between teacher and student and engage in dialogues based on equality and respect. His belief that personal and social change occurs through a process of reflection + action = transformation requires a holistic approach in relationship with others, respect for self and others, and resilience which is “rooted in love”.
Naome Soleil, Ph.D. – firstname.lastname@example.org