Deaf History - Deaf, Not Retarded

When Misdiagnoses are Made, Everyone Pays

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.

The aforementioned book Dummy also became a 1979 television movie of the same title, starring Levar Burton. Plus, some early television programs had episodes with deaf people thought to be retarded. One such episode was the "The Foundling" episode on the Waltons in 1972.

Misdiagnosis in Modern Times

Unfortunately, this type of misdiagnosis still occurs in developing countries from time to time. It is not unusual even today, to discover deaf children in homes for mentally retarded in developing countries. In the former Soviet Union orphanage system, children were frequently misdiagnosed around the age of four and moved to homes for the mentally retarded. Even a medically advanced country like the United States is not immune from making misdiagnoses. The December 1998 newsletter of the Disability Advocates/Consultants of South Texas reported that around 1994, a child who had been labelled mentally retarded was found to have a moderate hearing loss instead.

From About Deafness visitors:
...I really related to your story about misdiagosed children (deaf, labeled retarded). I found out about my hearing problem in 2nd grade. In 4th grade, my teacher would hit me and call me retarded, because I didn't hear her. She didn't believe I was deaf, she thought I was ignoring her or stupid. All my childhood classmates from then on treated me like I was stupid. When I graduated from high school, with a Regents Scholarship, one of my classmates (who I had gone to school with since grammar school) stopped me in the hall to congratuate me, and she said to me that she was surprised I won that scholarship, as she really thought I was retarted.

That is when I realized that my whole life was affected because of that one teacher.

...I was born with a mild hearing loss and no one picked up on it. When I was in the first grade the teachers thought I was mentally retarded. They advised my parents to put me into a mental institution, my parents said she was not mentally retarded that you had to get her attention and then she would get it.

My father taught me in one night what the teachers should have taught me in six weeks. The next day I read for the teacher and she said that I memorized it. She sent me to the principal's office where I had to read front to back, back to front, and middle to the back of the book before they were convinced that I could read. They called my parents in to the office. I can just imagine what my father said when mother told him we had to go to the school. All of my life I have had to prove to people that I am not mentally retarded. I have had two supervisors who told me they thought I was mentally retarded and one was surprised that I wasn't.

Are you a deaf adult who was misdiagnosed as mentally retarded as a child or was someone in your family misdiagnosed? Share your experience or the experience of your relative, with About Deafness readers.

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