Genetics, Disability, and Deafness

Negotiating (Genetic) Deafness in a Bedouin Community

NEGOTIATING (GENETIC) DEAFNESS IN A BEDOUIN COMMUNITY Shifra Kisch In the winter of 1995, I became acquainted with the inhabitants of a Bedouin settlement in the Negev Desert of Israel. These people, whom I refer to as Abu-Shara or As-Sharat, after their common ancestor, Abu-Shara, are all of common descent.1 This group, now in its seventh generation, numbers about 3,000 people, nearly 100 of whom are deaf. The use of an indigenous sign language is widespread among the Abu-Shara, and it provides the foundation of what I call an integrated signing community, shared by hearing and deaf people alike. Since my initial visit, I have spent three intensive anthropological fieldwork stints, a few months each, living with one of the families and engaging in participant observation. The first and longest stint was five months during the spring and summer of 1997. Though deafness is common among the Abu-Shara, pursuit of cure or prevention of deafness is rare. The first time I heard of any such prescription was from Hakima, a woman in her fifties. Most of her children have already married, and yet caring for some of her young grandchildren is part of her daily domestic routine. Hakima’s father-inlaw was deaf, as are two of her grandchildren. Previous to her marriage more than thirty years ago, however, Hakima could already communicate 148 quite fluently in the local sign language, as her mother’s younger cowife was a deaf woman. Hakima, lately complaining of headaches, asked me to accompany her to one of the elderly local healers. While on our way, Hakima told me that one of her daughters-in-law had been instructed by a healer in the further north Palestinian town of Dahariya not to breastfeed her newborn child. He suggested that otherwise the child might be deaf like some of his nephews. Hakima then complained that today’s young women are so eager to waste money on milk substitutes that they find the strangest excuses. Before we left the local healer’s house, I asked the healer if she was ever asked for intervention regarding deafness. She looked at me with amazement. I turned to Hakima and answered the healer with a supposed example: Has she ever been visited by pregnant women who sought a solution for deafness? She answered in a derisive tone, as though she was being bothered with trivialities, I treat problems [as she spoke, she stiffened her face to demonstrate suffering] . . . deafness [her face brightened up] is from God.* Another man from the Abu-Shara, who also makes amulets, said, in response to a similar question: “God creates a deaf person, gives him a good job, grants him with good looks, a good brain, there are hearing people who don’t have any of this.” In both cases, a contemptuous tone accompanied their words, and later on, both went on to proudly demonstrate that they only treat cases of real suffering.2 Hakima, like many other deaf and hearing members of this community , regularly encounters different attitudes, discourses, and practices in which the endeavors to heal, fix, and avoid the birthing of deaf individuals is assumed to be fundamental and crucial. The medicalization of deafness is being introduced into this community through two main factors: a genetic intervention program that is attempting to reduce the occurrence of deafness and special education programs for 149 NEGOTIATING DEAFNESS IN A BEDOUIN COMMUNITY *Square brackets ([ ]) indicate either descriptive elaborations of the interaction or my own comments and questions. deaf children that promote audiometry and hearing aids. Medical discourse is translated and partially reproduced in local discourses but not fully embraced. The exposure to medical discourse occurs in various settings, and genetics in particular has acquired a powerful grip on popular imagination (Nelkin and Lindee 1995). Medical and scientific discourse is commonly employed in the promotion of health and cosmetic commodities . Medical discourse is also introduced through high school education, as in lay encounters with various members of the dominant Jewish society. In such lay or semiprofessional encounters, the modernization theory and the utilization of modern state services such as health services are often introduced. When it comes to deafness, however , for most members of the community, medical discourse is most prominently conveyed through the actual genetic research conducted and the subsequent attempts to introduce an intervention program. Several years ago, a genetic research team from the...