The poignant and painful force of the words she chose brought me to tears. You see, Kalika has the rare and challenging neurological disorder Rett syndrome and is medically diagnosed as nonverbal. That she was able to utter those words (and do it so meaningfully) is both a medical and technological marvel: She speaks by using an Augmentative and Alternative Communication device developed by the company Tobii that allows her to trigger her speech software on a sophisticated computer by looking with her eyes.
She navigates hundreds of words on her speech software throughout the day, scanning words, deciding what she wants to say, and then saying it. Meanwhile, there are a variety of serious symptoms that she grapples with on a daily basis, and our lives often spin around her medical concerns. Before the development of key symptoms and her diagnosis in 2018, I had dreamily wondered if she would want to go to University of California Berkeley, my alma mater, for college.
Instead, life has brought us to a point where we have to work to protect her access to the general education classroom and its curriculum in … kindergarten.
Credit: Usree Bhattacharya
Credit: Usree Bhattacharya
The battle — there is no other way to call it than that — to get one’s child with significant disabilities access to literacy, with rich cognitive, social, and linguistic stimulation in Georgia and broadly in the United States is one that is heartbreakingly challenging for many parents like me. Apart from our own experiences in this area, I have spoken to and read about many parents in the exact same position, who desperately ache for a system that would lovingly embrace, educate, and include all our children. That would not demand such constant and exhausting vigilance and advocacy from parents.
But the reality for us is that most of our children will end up in special education silos, separated from their “non-disabled” peers for all or part of the time. Principles of segregation that defined American schools continue to endure; across the country, classrooms are often segregated, on the basis of and at the intersection of racial, socioeconomic, language proficiency, and disability status, among others.
The Individuals with Disabilities Education Act requires a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children. As noted in a National Council on Disability report in 2018, “The Segregation of Students with Disabilities,” “In enacting IDEA, Congress sought to end the long history of segregation and exclusion of children with disabilities from the American public school system.”
However, segregation continues. Our system is not yet fully inclusive in spirit, as many children with disabilities find themselves isolated, for part or all of the school day, in special education classrooms, having to earn exposure to general education peers.
If it were up to me there would be no special education classroom. What we need is our incredible team of highly trained special education teachers to be in general education classrooms, making education accessible to all. They are specifically trained to do so, and are some of the most creative, brilliant spirits in our schools, but their skills are often confined to adapted, special education classrooms.
The concept of segregation as applied for individuals with disabilities is something that I came to understand more deeply only in Sicily, where I spent a month and a half this summer as a visiting professor at the University of Messina collaborating with my mentor Rosa Angela Fabio, an economics professor, on communication and cognition in Rett syndrome.
When I found out that Italians grow up with children with disabilities mainstreamed in their classes, this inclusive embrace of Italians made a lot of sense. As Dr. Fabio told me, “In 1971, the Italian Law 118 granted all children with disabilities the right to be educated in mainstream classes. By 1977, Italy closed all special schools and its Law 517 instructed that all pupils with disabilities should be included in mainstream schools. Research has shown that when students with disabilities are placed in traditional classes, their academic success improves.”
Marilena Fatigante, a colleague who is an associate professor in social psychology at Sapienza University of Rome, Italy, explained that Italy has a version of the American Individualized Education Program or IEPs, the “Progetto Educativo Individualizzato,” which is supposed to be situated within “a dynamic, and not static, view of disability.”
She notes that regardless of the intent of the PEIs, the letter of the law is not always evenly implemented in spirit. It was within the context that she conducted research and training with individuals in the northern Italy town of Trento. School coordinators had invited her in to help
Fatigante focused on creating inclusive education by designing appropriate “participatory frameworks, which would be more suitable for children at all levels of competence to take advantage of educational opportunities.” I wonder if we could continue to more closely explore how we could achieve that here.
The Italian model allows us to imagine a world where our children are not kept in segregated spaces; children should be in an inclusive setting, learning and socializing with peers who look different, who speak differently, have different (linguistic/cultural/social/economic) resources at home, and enact diverse ways to think and move. In such a setting, all can benefit — students, teachers, and the entire system.
As I look back on my own life, I realize I never went to any school setting with children with significant disabilities.
I wish I had.
Kalika’s initial diagnosis and symptoms would have not entailed quite this level of trauma or learning for me. Instead, I would have come to these aspects believing in the possibilities in literacy of all. Our state should dream of that for all our children: Separate but equal did not work before, it does not work now.
Our children demand better.
As a parent, I would love for other parents, regardless of whether they have a child with disabilities, to ask: Where are the children with disabilities across their child’s school? They should similarly ask: Where are the children of color? How are children on the margins supported by their schools? With what resources?
The system relies on those on the margins being too vulnerable and tired to maintain the status quo, and for those on the more privileged end to accept with gratitude that they have what they do (and to maintain silence as a way to protect their privilege).
We as a society cannot progress in a meaningful way if we build centers that thrive by pushing out the margins. Everyone needs to invest in this battle for us as a society to move forward. Active, deliberative, and mindful moves towards inclusion and diversity are only so necessary here because we are still a segregating society from an educational perspective.
Let’s pause on that at the start of the school year, and every day forward.