Last week my son Henry met his literacy tutor for the first time. This probably doesn't sound earth shattering: there's nothing particularly special about teaching literacy skills to a preschooler. While people may disagree about the appropriate age to start learning to read, the development of literacy -- broadly defined as the ability to think critically, interpret signs and symbols, and all forms of communication -- begins at birth. What's different about our situation is that my son has Down syndrome, and for much of human history it was widely believed that people like him were incapable of learning anything beyond (best case scenario) the most basic self-care. Certainly nobody was thinking about literacy.
Henry is participating in a pilot program launched by GiGi's Playhouse New York, a branch of a national Down syndrome awareness center with seven regional locations and new chapters on the way, including one in Mexico City. Playhouses aim to increase positive awareness of Down syndrome and provide tutoring, therapeutic exercise, and social activities, all free of charge. I'm delighted to have one in New York where Henry can benefit from its programs (Full disclosure: I'm not only a parent, but also a member of the Board, so hardly an objective observer).
The Playhouse aesthetic leans toward the sentimental, with lots of pictures of adorable children with Down syndrome doing cute things. Amidst this abundance of cuteness, it's easy to lose sight of the fact that even today, teaching literacy to young children with Down syndrome is still a pretty radical thing to do. For generations, parents were advised to institutionalize babies born with Down syndrome and forget that they ever existed. Doctors said they would probably never walk or talk, let alone develop even the most elementary forms of literacy. One particularly notorious example is the playwright Arthur Miller, who commited his week-old son Daniel to a dismal, overcrowded facility where he lived until age 17. By all accounts Daniel is a remarkably pleasant, well-balanced person, but he was deprived by the then-prevailing wisdom that a person with Down syndrome simply had no potential to learn.
When Emily Perl Kingsley, one of the original writers for Sesame Street, gave birth to her son Jason in 1974, doctors told her, "he'll never read or write or have a single meaningful thought or idea." Unlike Miller, Kingsley defied the authorities by teaching Jason to read and write. As a teenager, he co-authored the book Count Us In with his best friend Mitchell Levitz (who also has Down syndrome). Even more remarkable is the story of Nigel Hunt, a British boy with Down syndrome born 30 years before. His parents also refused to accept that their son could not be educated. Not only did Nigel learn to read, but he went on to write an autobiography, The World of Nigel Hunt.
Although times have changed, some still believe that people with Down syndrome are capable of only minimal levels of education. While many of the most dehumanizing institutions have closed, parents still may be counseled to give new babies up for adoption. At GiGi's Playhouse I met a mother who had received exactly this advice at the Bronx hospital where her son was born in 2009. Today more attention goes to preventing the birth of children with Down syndrome. Geneticists continue their quest to eradicate Down syndrome by developing tests for earlier and less invasive prenatal testing. Why? Because raising a child with Down syndrome is considered to be an avoidable hardship on family and society. It is this context that makes me describe teaching literacy to a preschool age child with Down syndrome as a radical act.
Literacy is essential to the ability to communicate, make informed decisions, live independently, and contribute to one's community. Ample research shows a correlation between literacy and better health, job opportunities, and increased social and political awareness. International organizations such as the United Nations and UNESCO recognize it as a fundamental human right, while also noting that people with disabilities are often overlooked in literacy campaigns targeted as the general population. Inadequately trained teachers, low expectations, and lack of role models all negatively impact the prospects for literacy among people with intellectual disabilities around the world.
When it comes to literacy, the United States has an unsavory history. Before the Civil War, many states made it a crime to educate slaves. Former slaves wrote autobiographies as an assertion of their humanity and a means of galvanizing the abolitionist cause. A century later, public schools were a battleground in the fight against segregation. Brown v. Board of Education recognized that racial segregation of schools led to inferior services and resources for black students.
Children with disabilities have long endured their own version of segregation. When the landmark Education for All Handicapped Children Act was passed in 1975, only 1 in 5 disabled children went to school. Some states had laws barring intellectually disabled students from public education. The EAHCA, and its successor, the Individuals with Disabilities Education Act (IDEA), have done a great deal to facilitate the inclusion of students with disabilities. Some children with Down syndrome are now educated alongside their typical peers. But all too often students with disabilities are still segregated in under-resourced "special" classes or deprived by the low expectations of teachers and administrators. Just last week I read a blog post by the tutor of a 21-year-old woman with Down syndrome who had received a public school education but never been taught to read.
To be sure, not every child with an intellectual disability is capable of reading. But literacy is about more than recognizing words on a page. All children have the right to an education that enables them to develop, to the best of their ability, skills to interpret and interact critically with their environment. And no child's education should be foreclosed by low expectations about his capacity to learn.
Yesterday Henry and his tutor worked on his first book, which begins with the words, "I am Henry." Not quite, "Call me Ishmael," but everybody has to start somewhere. Like Melville's famous opening line, it is a statement of self-possession that, I'd like to believe, announces my son's first steps toward becoming an active, critical, and engaged participant in the world.
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