From the pages of Allies and Obstacles
Seventy years of organizing
Parent-led organizations, disabled-led movements, and the laws they fought for. Some communities organized in the 1950s, others not until the 2000s — Chapter 5 of Allies and Obstacles explains why.
Events, from the 1930s to today
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1930s–40s
Parent-led
Parent activism takes root
Parents begin joining together to create nursery schools, recreation, and education for children shut out of public schools.
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1940
Disabled-led
American Federation of the Physically Handicapped
Paul Strachan founds an early national, cross-disability organization fighting for disability rights.
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1949
Parent-led
United Cerebral Palsy
Founded by parents to provide services and advocate for people with cerebral palsy and other developmental disabilities.
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1950
Parent-led
The Arc
Parents of people with intellectual disabilities found what becomes the largest parent-led disability organization. The Muscular Dystrophy Association emerges around the same time.
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1950s
Disabled-led
Gini Laurie’s polio networks
Sibling activist Gini Laurie begins building what becomes Post-Polio Health International and the International Ventilator Users Network.
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1962
Law & policy
President Kennedy’s Panel on Mental Retardation
Parent leader Elizabeth Boggs serves on the panel, bringing family advocacy into federal policy.
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1962
Disabled-led
Ed Roberts enters UC Berkeley
With his mother Zona’s help, Roberts becomes the first student using an iron lung to attend Berkeley, and later a founder of the independent living movement.
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1967
Parent-led
American Society for Deaf Children
Parents advocate for language-rich environments for deaf children, including American Sign Language.
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1973
Law & policy
Section 504 of the Rehabilitation Act
The first federal civil-rights protection for disabled people — the subject of Richard Scotch’s From Good Will to Civil Rights.
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1975
Law & policy
Right to a public education
The Education for All Handicapped Children Act (now IDEA), won with heavy parent advocacy, guarantees a free appropriate public education.
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1979
Parent-led
NAMI and the National Down Syndrome Society
Family members found the National Alliance on Mental Illness. The National Down Syndrome Society is founded the same year.
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1983
Parent-led
VOR and the National Organization of Parents of Blind Children
VOR (formerly Voice of the Retarded) forms to oppose deinstitutionalization. The NOPBC forms as a division of the National Federation of the Blind.
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1988
Disabled-led
Deaf President Now
Students at Gallaudet University win their demand for the university’s first Deaf president.
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1989
Parent-led
National Federation of Families for Children’s Mental Health
Families organize around children and youth with mental health needs.
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1990
Law & policy
Americans with Disabilities Act
Sweeping civil-rights protections, won by a broad coalition of disabled activists, parents, and allies.
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1997
Parent-led
Hands & Voices
A parent-driven group supporting all families of deaf and hard-of-hearing children, whatever their communication choice.
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1999
Law & policy
Cedar Rapids v. Garret F.
Charlene Frey’s case wins her son Garret, who uses a ventilator, the nursing services he needs to attend school.
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2005
Parent-led
Autism Speaks
Founded with a focus on research and awareness. Its framing of autism as an epidemic draws sharp opposition from autistic self-advocates.
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2016
Disabled-led
Not Dead Yet and Jerika Bolen
Disabled activists contest a family’s support for a teenager’s decision to end life support, a flashpoint the book explores.
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2020
The books
Allies and Obstacles is published
Temple University Press publishes the book. It goes on to win two national awards.
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2025
The books
Family and Disability Activism is published
The follow-up volume centers BIPOC and LGBTQIA2S+ disabled activists and families.
Founding dates of parent-led organizations follow Table 5.1 of Allies and Obstacles.