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Deaf History - Deaf, Not Retarded

When Misdiagnoses are Made, Everyone Pays

By

Updated September 29, 2010

Most deaf people in my generation - but not all - escaped a fate that would have ruined any chance they would have had of a normal life. That is, we were not misdiagnosed as retarded. For a long time, up until about the 1970s, deaf people were sometimes misdiagnosed as having mental retardation, with severe consequences. These unfortunate deaf people grew up in institutions - homes for the retarded or mentally ill - without access to language. By the time they were discovered to be only deaf, not retarded, it was often too late for them to salvage what was left of their lives. All the money won in lawsuits could not bring back lost childhoods nor give them the language skills needed to survive in society.

This happened because young deaf children were often given intelligence tests not suitable for testing deaf children and also because of simple ignorance about deafness. This was often referred to in books on deaf heritage, such as books by Harlan Lane (1984).

Cases Reported in the News Media

These examples of newspaper articles reporting on misdiagnosed deaf people were found:
  • Case of Mattie Hoge - Mattie Hoge was a deaf woman misdiagnosed in 1929 or 1930, and she was institutionalized in the Forest Haven home for the retarded for 57 years until she was discovered. Hoge had not been tested appropriately and that was the reason for the misdiagnosis. Reported in the Washington Post September 14, 1985, with follow-up story February 6, 1988, page b.04.
  • Case of a man in New York - In 1984, New York state lost a lawsuit on behalf of a deaf man who spent almost ten years in homes for the retarded. New York had to pay this man a couple of million dollars. The case was reported in the New York Times, January 14, 1982, page B2.
  • Another New York case - Joseph McNulty, born in the early 60s, was misdiagnosed as retarded in 1966. The misdiagnosis was not discovered until 1974.
  • In Boston, Massachusetts, in 1964, a blind deaf man, Joseph del Signore, was discovered in the mental hospital system. This case was reported in the Washington Post/Times Herald, December 18, 1964, page A1.
  • In Tulsa, Oklahoma, a deaf boy, age 17, was discovered after 12 years in a school for the retarded, in 1965. This case was reported in the Washington Post/Times Herald, December 20, 1965, page A1.
  • The Beacon Journal(Akron, Ohio) reported on May 30, 2002 about a 48-year old deaf man who spent his first 18 years of life in a home for the retarded after doctors advised his parents to institutionalize their child.
In addition, students studying the effects of delayed language exposure are often told about the case of a deaf woman named Chelsea, who was misdiagnosed and not identified until she was 31 (Curtiss, 1989).

Books About Effects of Misdiagnosis

At least one deaf survivor wrote a book about it. This now out of print book published by Gallaudet University Press is I Was #87: A Deaf Woman’s Ordeal of Misdiagnosis, Institutionalization, and Abuse (ASIN 1563680920), by Anne Bolander and Adair Renning. Bolander was misdiagnosed as a child in the 1960s and spent six years until age 12, in a special school where she was mistreated. Bolander survived the experience and even went on to college.

Another book, not autobiographical, is Kids with courage: True stories about young people making a difference (ISBN 0915793393) by Barbara A. Lewis. This book tells as one of a compilation of stories, the story of a deaf boy who was told he was retarded as a child.

A third book is Dummy (1974) (ASIN 0316845108 ), by Ernest Tidyman. This book describes the ordeal of a deaf man who never learned any language, and was accused of murder and placed in homes for the retarded.

A fourth book is God Knows His Name: The True Story of John Doe No. 24, by Dave Bakke (ISBN 0809323273). This book tells the story of an unidentifiable deaf man who was discovered in the state of Illinois mental health system. He was placed in a home for the retarded after a misdiagnosis in 1945 (it is not clear from the book description if he was an adult or a child when found).

Other Known Examples of Misdiagnosis

The deaf comedian Kathy Buckley frequently tells audiences how she was misdiagnosed as retarded as a child at six years of age. Fortunately, the mistake was discovered by the time she was seven years old. She has her own autobiography, If You Could Hear What I See: Lessons About Life, Luck and the Choices We Make(ASIN 052594611X). A deaf artist, Joan Popovich-Kutscher, was misdiagnosed and institutionalized from about three years old until she was nine years old. A deaf musician, James Moody, was misdiagnosed in Pennsylvania as a small child.

Examples in Entertainment Media of Misdiagnosis

The opening scene of the (not available on video) television movie And Your Name is Jonah showed young Jonah, a deaf child who had been misdiagnosed as retarded, being readied to leave the institution where he had grown up.
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