When I wrote the tagline for my website, I knew I wanted it to contain the word “autonomy” before I could even formulate the rest of the words. Autonomy is a word that has always been important to me professionally and has become increasingly popular in the world of education. So, what does this word mean, and why did it migrate from exclusively describing countries and regions to people as individuals?
Autonomy is defined as “…a self-governing country or region; freedom from external control or influence; independence” (Google Definitions). Autonomy might not be in our every day vernacular, especially if we don’t sit around discussing both historic and present foreign politics (if you do, more power to you!). This is one of my favorite words because it is not as simple as describing someone as “independent”. It contains more weight and layered context. Saying that someone lives with autonomy implies that they completely govern themselves; that they know all of their strengths and weaknesses, and they know how to navigate their world, interacting positively with others and relying on their own resources and history. I have found that the best way to grant someone their autonomy is to fully educate them about themselves. Regardless of a person’s disability, and, I believe, especially because of disability, it is important to teach people openly what they are up against.
When I was teaching in Hartford, I piloted a Life Skills program. In the first unit, the students were learning about their own disability, researching trends, common aptitudes and areas of potential weakness. The project culminated with them reviewing, for the first time, their own Individual Education plans and learning what their Goals and Objectives were and how those were decided upon. I think some were afraid that this would dishearten the students, or bring about some negative, dependent habits. Instead, I found that they were more empowered. They were able to raise their chins and confidently ask teachers for their accommodations, stay after and review their scores on assessments and understand why they struggled on certain sections, or more efficiently select texts to read that were more appropriate/accessible. At that time, I had real data to back up what I believed to be true: the more information we can give our children, the more empowered they will become, as long as this is done in a calculated, measured approach, and in a safe place.
In my next placement, I met a student who was 17 years old and struggled socially. She could not relate to her peers, could not appropriately read social situations, didn’t know how to effectively engage with others, and, worst of all, she didn’t know why. She had Autism. Her social symptoms were textbook and she had no idea. She didn’t understand why no one “liked” her, or why she couldn’t maintain friendships. She was frustrated and struggled in her sessions with the staff because she didn’t believe that what she was learning (things like social cues, societal norms, conversational rules) was important, and ironically, she felt very superior to people who struggled academically and/or behaviorally. We begged her parents to let us talk to her about her disability, but they were resistant. They were afraid that knowing her diagnosis would stigmatize her, or somehow limit her. As her 18th birthday neared, she was applying to colleges and jobs and slowly becoming a citizen of the world and not just her parents’ home. The school and her pediatrician pleaded again, and, finally, they relented and let her doctor talk to her about her disability. It was as if a lightbulb went off for her. Her struggles weren’t over, she still had to overcome social and emotional hurdles and evaluate the prejudice she had against people with disabilities, now that she found herself on that list, but at least she knew. At least now when she found herself on sensory overload, or socially overstimulated, we could tell her why and she could read it in a book and know that she wasn’t “crazy” or “weird”. Autism and social/emotional disorders are normal for a LOT of people and it was unfair that she had felt like an outcast in her own mind for so long.
I respect a family’s right to structure themselves how they see fit, and I understand the fear that governed their decision to keep her diagnosis from her but giving her the information she so desperately needed granted her the autonomy necessary for her to have a lifetime of success. Not every family is qualified or feels comfortable doing this training or having these conversations, and that is okay! That is why disability training for individuals and families is a service I offer. I want to help people have these conversations so that it doesn’t feel like a weight or a scary, foreboding obstacle.