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KAT H LEE N 5 H A V ERA RNa 5 AND KAT Y DOW N 5 hat causes deafness? Why are people in both the deaf and hearing communities interested in the causes of deafness? We know today that in the United States the majority of individuals who are deaf at birth or shortly thereafter have a genetic cause of deafness. Genetics is the study of how physical traits or characteristics are passed from parents to children. An understanding of how genetic traits are inherited in families has existed only since the early 1900s. At that time, the work of an Austrian monk, Gregor Mendel, was rediscovered and led to significant progress in understanding the principles of inheritance in humans. Unfortunately, even today, a lack of knowledge concerning cultural and linguistic aspects of deafness is widespread in the genetics community, as are misunderstandings in the Deaf community concerning the purpose and goals of genetic counseling. The goal of this paper is to narrow the gap of misunderstanding between those who view deafness as a pathological state and those who view Deaf people as a separate cultural and linguistic group. The major topics in this paper-which will focus on events and data from the United States-include .:. A brief review of historical information, beginning in the late 1800s, that has had a profound influence on both the field of genetics and the Deaf community's perception of that field .:. A review of the facts related to genetic causes of deafness as they are known today, the goals of genetic counseling, and the importance of cultural and linguistic considerations in the provision of appropriate genetic counseling to Deaf individuals and their families .:. A discussion of what the future may bring: new technology that may have an impact on genetics and deafness. An Historical Perspective During the late 1800s, a number of individuals became interested in investigating the possible causes of deafness. This interest was perhaps related to the growing debate 296 THE DEAF WAY ~ Deaf History about the best ways to educate deaf children and the use of sign language. At the same time, the eugenics movement was also very strong in the United States. Eugenics was a movement concerned with the improvement of hereditary qualities of the human race. Eugenicists wanted to apply Darwin's theory of "survival of the fittest" to improving society as a whole. They advocated selective breeding to keep America free of "inferior" people. One of the proponents of this way of thinking was Alexander Graham Bell, who also had a lifelong interest in the education of deaf children and the integration of deaf children into the larger, hearing society. In order to benefit society as a whole, Bell naively proposed an end to the segregation of deaf children in special schools, an end to the employment of deaf teachers for deaf children, and the end to the use of sign language . All of these measures were designed to discourage deaf people from marrying one another. Bell firmly believed that if deaf people were discouraged from marrying one another, the number of deaf children born in this country could be greatly reduced. He wrote about this extensively in his Memoir upon the Formation of a Deaf Variety of the Human Race (Bell, 1883). Bell considered the rights of individuals to be less important than the well-being of society as a whole and certainly failed to understand that deaf people were satisfied with their lives, considered themselves normal, and many times preferred to have deaf children. Although Bell suspected that many instances of deafness were influenced by heredity, his assumptions about how deafness was inherited were incorrect. Another very important historical figure who had an influence on the field of deafness during the late 1800s was Edward Allen Fay. Dr. Fay served at Gallaudet College for more than fifty years, as a professor and later as vice president. One of his most important contributions was a study of marriage among deaf people in the United States, published in his book Marriages of the Deaf in America (Fay, 1898). In this study, Dr. Fay set out to investigate and, he hoped, refute Alexander Graham Bell's assertion that as more deaf people married one another, they produced more deaf children. Fay accomplished this by collecting information on marriages between American deaf people. He collected extensive family-history information on close to 4,500 marriages of deaf people that had occurred in the United States between 1801...

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