I am starting Andrew Solomon's Far from the Tree: Parents, Children, and the Search for Identity and finding it illuminating. As an OT who interfaces with disability regularly, I realize there are worlds of experience I barely touch. The book centers around what Solomon terms "horizontal" identities. Rather than vertical identities we share with our parents (race, religion), horizontal identities require peer groups for integration/support/empathy/understanding.
The chapter I just finished is about the Deaf community. Solomon illuminates complexities and contradictions inherent in disability. He takes the view of disability as illness and identity. He explores the difficulty of moral decision making about something such as cochlear implants - a medicalized "solution" imposed by parents and chosen by parents for their children; versus embracing deafness in a child as an identity that can be lived out fully using ASL. He highlights the vibrancy of the Deaf community, which often is a community found and delighted upon in a Deaf person's life.
Eye-opening was the negative effect the well-intended 1990 Individuals with Disabilities Education Act (IDEA) had on the Deaf community. With a directive to provide the least restrictive, most integrated learning environments for children with disabilities, Deaf schools floundered as Deaf children were herded into "hearing" classrooms -- their education suffered. Mainstreaming may appear good, but in reality specialized education is required.
Children who are taught Sign (manualism) often can excel at higher academic rates earlier; learning to hear for a deaf person imposes a significant learning curve during crucial years of early neuroplasticity. Yet the decision to "teach" a person to hear is a way parents can integrate the child into their family, when their own capacity to learn new language (at age 30) is diminished. To what extent should each be required to accommodate the other, to nurture familial bonds?
Psychologist Neil Glickman identifies 4 stages of Deaf identity: 1) pretending to be hearing 2) marginality (feeling excluded from deaf and hearing life), 3) falling in love with in Deaf culture; 4) an integrated perspective of the strengths of hearing and Deaf culture. Some Deaf individuals, whose cochlear implants were chosen for them by their parents, decide to switch them off when they discover a complete and full world within Deaf culture.
Disability has deleterious effects on physical and mental health in families; abuse is perpetrated at higher rates against those with disabilities. At the same time, difference offers enormous opportunities for meaning and purpose for some parents as they meet the challenges of serving and loving their child. Deafness, like other disabilities, is viewed as a deficit - yet the vibrancy, meaning and fullness Deaf individuals feel within a like community challenges that.
Among the poignant lines:
"Though many of us take pride in how different we are from our parents, we are endlessly sad at how different our children are from us."
Helen Keller: "Blindness cuts us off from things, but deafness cuts us off from people."
Regarding the effectualness of Sign: "To this day if I sign, 'milk,' I feel more milky than if I say the word. Signing is like speech set to dance."
