When we apply “disabled” to
the boy with flapping hands,
the man crossing a street in a motorized chair,
the teenager with Down’s features,
the girl who struggles with differentiating b and d,
are we labeling a state of mind, a state of being,
or perhaps our own state of indifference, or fear, or even resentment?
What do we see, think, and feel when we are in the presence or absence of those labeled “disabled?”
Last night, I had the opportunity to see a brilliant high school performance of Phantom of the Opera. I spent early morning hours thinking about the convoluted themes of the original novel published in 1909 and its iterations as a series of movies and the musical. I wondered about our response as audience to the characters in Phantom; the beautiful and seemingly innocent Christine in love with the handsome, youthful Raoul, caught under the spell of the disfigured Erik. If we take away the music, the sets, the actors, how do we feel about this story?
Do we want Christine to be won by Erik, the Phantom? Do we see him as evil genius or tortured “angel of music?” Do we want the handsome, young hero, Raoul, to defeat the Phantom’s attempt to capture the love of Christine or lose out to the disfigured man beneath the mask? Do we cast a sympathy vote for the Phantom? Or, do we resent the Phantom for even thinking that the beautiful Christine might love the man, despite his, not just imperfect, but monstrously disfigured features? Do we see this as a story of what life is like for those among us who wear the label “disabled” or simply a story of good and evil? Do we expect the Phantom to give up the beautiful Christine because she deserves something “better” from life?
I see Phantom of the Opera as metaphor of the real story of people who daily get put outside of the community, excluded because of questions, perspectives, fears and resentments. They’re destined to find themselves never accepted and never able to fully participate in life with “us.” Do we want this to be our community’s story? After all, we each have the potential to be the Phantom or to have friends or family members who are. If we are teachers, we will teach children who represent the Phantom. No matter where we go or what we do, we either will become the Phantom in one situation or another or we will experience a Phantom in our lives.
Over years of working in schools, I’ve evolved my sense of the role of community when it comes to those we label as “disabled.” I’ve come to understand that despite my own successes in school, I have my own version of disability when it comes to learning. Processing technology is a comeuppance. Auditory learning sans print is another. I thought I was empathetic to kids in school who struggled with literacy until I felt challenged by a friend who has struggled with reading and writing for a lifetime.
Last summer, I decided to spend most of my “reading” time listening rather than print processing. In changing to a different learning input mode, I found myself feeling lost as learner, forced to re-listen to sections over and over to try and hold on to what I heard and then finding the words leaving my mind like it was a sieve. It was a disconcerting sensation every time I experienced listening to words on a page in isolation of reading them. I would stop and replay phrases over and over again, writing them down to capture quotes from an Einstein biography whose words became elusive and out of order when I attempted to capture the “hear” rather than the “see” of them.
I thought, what if I had to depend upon this as the only mechanism for me to access information? What if schooling for me had been based on auditory processing skills alone versus mainly visual processing skills?
I might have been labeled and sent to a “special room” where I would have been forced to practice listening over and over again, never quite meeting expectations. Perhaps, I would have gotten a bit better, but perhaps not. Maybe I would have given up and decided that further schooling was too much work for me. I might have become angry, frustrated, resentful; a bitter person. I certainly would have felt excluded from a community of learners, never listening to on-level books that peers would have accessed. I likely would have felt a failure to adults who were important to me. I would have been targeted with a host of demeaning words we’ve used across generations to describe those who don’t measure up physically, emotionally, or cognitively. I would have labeled myself disabled, become my own version of the Phantom.
Universal Design for Learning, finding access to the tools needed to accomplish whatever it is we need and desire as individuals to accomplish, is a concept whose time has come.
“Making learning experiences accessible to all learners requires universal design…”
Learning: Engage and Empower, Who Needs to Learn (National Ed Tech Plan)
UDL is purposely embedded throughout the USDOE’s National Educational Technology Plan. The NETP should be promoted by our Secretary of Education as a National Learning Plan. This is a concept that if applied within learning communities would create pathways to success for all learners. It’s about all the right stuff- workforce productivity, social responsibility, humanity, and lifelong learning.
I’ve come to believe over this past year that UDL applies to us all.
No one should have to live the life of a phantom.