Roland Johnson

Roland Johnson (1945 – 1994) was an advocate for the rights of people with disabilities and one of the founders of Self Advocates Becoming Empowered (SABE). He spent 13 years institutionalized at Pennhurst State School and Hospital, until he was released in 1971 following the civil rights case, Halderman v. Pennhurst State School and Hospital.

Roland Johnson
Jounson in 1993
Born(1945-09-14)14 September 1945
Philadelphia, Pennsylvania
Died28 August 1994(1994-08-28) (aged 48)
Philadelphia, Pennsylvania
OccupationDisability rights activist
Known forleader in the early Self-advocacy movement; former Pennhurst resident
Notable workLost in a Desert World: An Autobiography (1999)
Disability
Theory and models
Education
Therapy
Societal implications
Personal assistance
Socioeconomic assistance
  • Groups
  • Organizations
Parasports
Culture
    •  Disability
    • Lists
Johnson presenting President George Bush with an award in recognition of his enacting the Americans with Disabilities Act of 1990, January 12, 1993

Childhood

Johnson was born 14 September 1945.[1] He was the youngest of nine children – six girls and three boys. He and one sister, Madeleine, were born twins, but in both cases the twin sibling died in their infancy.[2] The Johnson family lived in a three-bedroom house, first on Ellsworth Street across from the Christian Union Church in South Philadelphia, then later at 2435 North Cleveland Street in North Philadelphia.[3] Johnson's mother worked as a housekeeper and his father as an auto mechanic.[4] Vera, the oldest child, was often in charge of the house, watching the younger siblings, preparing meals and making sure the chores got done.[5]

As a child, Johnson stayed at home because public schools were unable or unwilling to accommodate him. He often stole food from stores due to his insatiable appetite. To punish him, his mother would heat a knife on the stove and burn his hand with it. It became clear that the family was unable to care for a disabled child, so they decided to send him to Pennhurst.[1]

Pennhurst

In 1958, when Johnson was 13 years old, his mother consulted with other family members and decided that she was no longer capable of handling Johnson's growing discipline problems. They decided to commit him to Pennhurst State School and Hospital,[6] where he would live for 13 years, until he was released in 1971 at the age of 26.

Advocacy

After his release from Pennhurst, he went through a difficult transition back to the outside world. After a series of illnesses, he joined a psychiatric day program that helped improve his life. In the early 1980s, Johnson became involved with a self-advocacy organization called Speaking for Ourselves, eventually becoming the president of the Philadelphia chapter.[1]

In 1990 Johnson became one of two representatives from the Northeast to the National Steering Committee on Self Advocacy, which in August 1991 became the board of directors of Self Advocates Becoming Empowered (SABE).[7]

Death

Johnson died August 29, 1994, at the age of 48, in a house fire.[1]

Lost in a Desert World

Johnson told his autobiography as an oral history in a series of audio recordings made by Karl Williams. It was published posthumously in 2002 as Lost in a Desert World.[8]

References
  1. Rifkin, Glenn (2020-07-31). "Overlooked No More: Roland Johnson, Who Fought to Shut Down Institutions for the Disabled". The New York Times. ISSN 0362-4331. Retrieved 2020-08-02.
  2. Johnson 1994, p. 6.
  3. Johnson 1994, pp. 3–4.
  4. Johnson 1994, p. 5.
  5. Johnson 1994, pp. 5–6.
  6. Johnson 1994, pp. 18–19.
  7. Obermayer, Perske & Probst 2000, p. 540.
  8. "Lost In a Desert World". www.goodreads.com. Retrieved 2020-09-01.

Bibliography
  • Downey, Dennis B.; Conroy, James W., eds. (2020). Pennhurst and the Struggle for Disability Rights. Pennsylvania: Keystone Books. ISBN 978-0271086033.
  • Friedman, Mark; Beckwith, Ruthie-Marie (2014). "Self-Advocacy: The Emancipation Movement Led by People with Intellectual and Developmental Disabilities". In Ben-Moshe, Liat; Chapman, Chris; Carey, Allison C. (eds.). Disability Incarcerated. Palgrave Macmillan. pp. 237–254. doi:10.1057/9781137388476_13. ISBN 978-1-137-40405-3.
  • Johnson, Roland (1994). Lost in a Desert World: The Autobiography of Roland Johnson. as told to Karl Williams. Philadelphia, Penn.: Speaking for Ourselves. ISBN 0-9672256-0-4.
  • Obermayer, Liz; Perske, Robert; Probst, Melissa (December 2000). "Book Reviews: Lost in a Desert World: An Autobiography". Mental Retardation. American Association on Intellectual and Developmental Disabilities. 38 (6): 539–546. doi:10.1352/0047-6765(2000)038<0539:BR>2.0.CO;2.
  • Rifkin, Glenn (31 July 2020). "Overlooked No More: Roland Johnson, Who Fought to Shut Down Institutions for the Disabled". The New York Times.
  • Wallace, Andy (31 August 1994). "Obituary: Roland Johnson, 48; Advocate Fought For Rights Of The Disabled". Philadelphia Inquirer. Philadelphia, Penn. Retrieved 28 June 2016.
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