Where I Stand
Early in my pediatric practice, I met with a group of professionals working in the field of early intervention for deaf and hard of hearing infants and preschool children. This particular group did home visits where they had ongoing meetings, play, and interaction with the child, parents, and other family members. These families are unique because they have members with a mix of sensory experience. Parents are at a loss because their instinct to protect and connect with their child cannot find healthy and meaningful expression without special guidance and new knowledge.
As a pediatrician I was ready to roll up my sleeves and join the team. Sadly, the discussion turned to their frustration with many of the medical professionals and their agents, such as audiologists, and speech therapists (SLP's). It seems families continually received destructive, false, misleading, and harmful information as a matter of course from these "professionals and experts". The EI's were now focusing their efforts on educating them. I looked at the beautiful and colorful brochure they were planning to send to pediatricians and family practitioners across our state. Immediately, I saw a cultural divide. Their work with families was about nurturing, connection, language, and support of the child's innate developmental path. They recognized the family as having a mismatch of the parents' natural inclinations and the child's sensory needs. They started with the family's love and brought support. They showed them what to accept and what to overcome and how. They brought wisdom to mitigate the mismatch. The wisdom would come in the form of an adult who had been a child just like theirs. A deaf or hard of hearing person who had navigated life and could lead the way.
I knew that in all my medical training we had never discussed the situation in which these families found themselves. Despite our rigorous education, pediatricians are often unprepared for the unique needs of many of our families and so we learn as we go. We try to be compassionate, and stretch ourselves. The best pediatricians stay humble and open and let our patients' families take us on their journeys and educate us. At the same time, our medical training and culture is geared towards diagnosis, treatment, and hopefully cure. We are taught to have the answers, and if we don't, to find them or refer to specialists, who do. Medical culture dictates we diagnose the problem as the child's hearing loss. Physicians seek out technology and interventions to improve hearing. The child needs to communicate and physicians can refer to speech therapists. In the 21st Century, science is advancing rapidly and we can search the literature for the state of the art treatment for this child's problem. From inside the medical culture, this is the hope we can offer to families.
I stand in a position where I can shift my gaze between these perspectives. I bring to this divide my own personal and professional experiences as a physician who has worked with a large number of families with deaf and hard of hearing children, and a visitor to the Deaf Community. I learned ASL at age 19, and immersed myself in study among Deaf peers at Gallaudet College (now University). I have the benefit of knowing hundreds of D/deaf adults over the last 30 years. Some are brilliant and successful, some are language deprived and brain damaged. Many feel whole, and many carry deep wounds that may never heal. In my experience, their level of hearing and their ability to speak has nothing to do with what they achieve or how they feel about themselves.
As a physician, my oath is to "First, do no harm." From where I stand, this means supporting the family in understanding their child's sensory and developmental needs. Language deprivation and consequently brain damage is the single greatest risk to deaf babies and children. I agree with this assertion by Sanjay Gulati, MD. (click here to see his lecture at Brown University on Language Deprivation Syndrome). I would say the vast majority of deaf babies and children, though born into loving families, are unable to receive their family's gifts of love, language, knowledge and connection in the way in which it is shared. Unfortunately, until the family is able to make the proper adjustments, much of their love and devotion dissipates into the ether, because it is sent out in an incomprehensible manner.
I stand with all who want to support hearing family members in understanding their deaf child's needs and meeting them. I stand with those who understand that children need to be accommodated in order to feel secure and connected for emotional health and well-being. They must be met on their terms. I believe that delayed access to visual language is toxic and that the epidemic of language deprivation and brain damage is culturally imposed. It is a trend that can be halted and reversed.
For more on my concept of language deprivation and neurotoxicity click here.