Each summer we host at Syracuse University a Summer Leadership Institute (SLI) for K-12 school leaders to come and get immersed in thinking, feeling and learning about how to create more inclusive schools focused on students with disabilities.
This summer over 150 leaders came from 5 states and 3 countries. While the institute has limitations, like any intense professional development, participants talk about it like it is a “revival” where you come away moved to work to create more inclusive schools. The feedback we collect indicates that participants appreciate the practical ideas and strategies, but attendee after attendee share that they had a strong emotional experience at the SLI. This blog is not to sell the institute but to reflect upon the experiences in creating an emotional reaction to want to do the hard work of making schools more inclusive.
Each day of the institute there is a keynote address by a person with a disability to lend a first person voice from adults who can reflect on their experiences through a lens of school inclusion. This year we were fortunate to have the nationally, Norman Kunc ; a young man with a intellectual disability who has fought against schools that have closed doors to him from elementary school through college, Micah Fialka-Feldman,
and Carrie Bergeron who is woman who is living a full, independent life in central New York with down syndrome.
Participants in the SLI narrate the emotional power and motivation they feel from first hand experience in hearing people with disabilities talk about their lives (joys and struggles) and the ways inclusive schools and opportunities played a role in their development and often the pain from being excluded. I believe in part the emotional reaction comes from opening up to a lived experience that many of us ignore, intellectualize, or keep at a distance. It comes from being in a space that intentionally positions people with disabilities as expert; this is the reverse of what happens time and time again in K-12 schools and in U.S. society in general in that “experts” are professionals with training and degrees that “know best.” It seems that part of the power of the emotional reaction we see each year at the SLI is the space of seeing and hearing people with disabilities as experts about their experience.
This year we had a moment that caused an important sense of reflection. Carrie, like many of our presenters, sent us her presentation power point and outline so we would know what she was doing during her keynote. As we do with many of our presenters, we offer feedback about highlighting a particular topic or suggesting that they add something more about a certain topic or asking them to spend less time on a particular topic. When we offered suggestions to Carrie her support staff indicated that this was too stressful and Carrie could not change her presentation. Carrie has people who support her, as she needs assistance through out her life. Some ways she is supported are in the preparation of presentations, email communication (as she does not decode text), advancing her power point during presentations, and other daily living support. Since this communication took place a week before the institute, we replied that is fine and we would be happy with the original presentation plan. We said we understood if changes could not be made at this time.
During the presentation, it was clear that Carrie, who had heard our email communication through a text to voice screen reader, was making the changes on the fly as she presented. Carrie, a woman with Down syndrome who has had a label of a significant cognitive disability and an “IQ” below 70, was seamlessly skipping particular slides, emphasizing particular information, and omitting whole parts of the original plan. Her adjustment were completely in line with the feedback we had given, but also completely spontaneous. Her support staff had to keep catching up with the power point slides as Carrie made changes as she talked. The result was an excellent and skillfully delivered presentation that moved the audience – and no one but a few of us who organize the SLI knew how much had been changed on the fly.
I tell this story for two reasons. First, I believe it is an affirmation of the emotional impact of creating space for hearing the lived experiences of people who have been historically marginalized. In this case the space is for people with disabilities to be experts on their experiences, but in thinking beyond the SLI creating spaces for marginalized voices is a central tenet of much civil and human rights activism and scholarly traditions like feminist and critical race theory. Second, this story serves as a keen reminder that when people are presumed and constructed to be competent they will deliver on that.
What we saw with Carrie this summer is what many skilled and seasoned presenters do, they adjust in the moment to meet the needs of their audience.