Edited volume · 2025
Family and Disability Activism
Beyond Allies and Obstacles
BIPOC and LGBTQIA2S+ disabled activists and families, in their own words.
Free audiobook188 pages
Monograph · June 2020
Allies and Obstacles
Disability Activism and Parents of Children with Disabilities
- Publisher
- Temple University Press
- Published
- June 2020
- Length
- 348 pages
- Awards
- 2 national
About the book
Parents of children with disabilities have been among the most powerful forces in American disability policy — winning the right to a public education, pushing people out of institutions and into communities, and taking their fight to courts and legislatures. Yet many disabled activists have experienced parent advocacy as something that speaks over them rather than with them.
Allies and Obstacles traces that relationship across the twentieth and twenty-first centuries. Using a social-movement lens and four case studies — intellectual disability, psychiatric disability, autism, and physical disabilities such as cerebral palsy and muscular dystrophy — the authors show when parents and disabled activists have worked together, when they have clashed, and what each movement has gained and lost along the way.
Inside the book
An introduction, nine chapters in two parts, and a conclusion. Open any chapter for a summary, the story it opens with, its sections, and questions for classes and reading groups.
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Introduction , begins on page 1
Sets out the book’s central puzzle. Parents have won some of the most important victories in disability policy, yet disabled activists often experience parent advocacy as speaking over them. The introduction traces how medicalization, “mother-blame,” and a neoliberal retreat from public support shape the pressures on families, and argues that parents are best understood not as simply allies or obstacles, but as “sometimes” allies.
How it opens
Opens with Sophia Grant, who in the 1930s was told by doctors to give her son Peter, born with Down syndrome, “a glass of milk and a cookie” and leave him alone — and who refused.
In this chapter
- Situating parent activism in scholarship
- Families in need: insufficient progress and new hurdles
- Parent activism and parent movements
- Building a relational model for support
- Imagined futures
- A note on language
Questions for discussion
- The authors describe parents as “sometimes allies.” What pushes a parent organization toward alliance with disabled activists, and what pulls it away?
- How does the story of Elizabeth Boggs complicate the idea of a parent “hero” of the disability movement?
Part I
Disability Activist Communities
Four historical case studies, each tracing how parents and disabled people organized, where they found common cause, and where they collided.
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Chapter 1 Intellectual Disability and Parent Activism , begins on page 29
Parents of people with intellectual disabilities were the first to organize on a national scale, founding the Arc in 1950. Over time they moved toward a social model of disability and a civil-rights frame, and many came to support self-advocacy. Yet the Arc’s role as a service provider, its claims to parental authority, and a sense among self-advocates that parents tried to control or co-opt their movement have kept the alliance uneasy.
How it opens
Opens with Emina, who built a parents’ group and then a national disability services department in Eastern Europe for her son Marsel before moving her family to the United States.
In this chapter
- Considering intellectual disability
- The emergence of parent activism
- Early barriers to activism
- Factors promoting the rise of parent activism
- Grassroots activism and meeting families’ needs
- Unifying the agenda and the civil rights frame
- The rise of self-advocacy
- Points of agreement
- The legacies of parent activism
Questions for discussion
- Why might an organization that runs services find it harder to follow the lead of self-advocates than one that only lobbies?
- What did parents gain by adopting the language of civil rights — and what did it commit them to?
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Chapter 2 Psychiatric Diagnosis, Disability, and Parent Activism , begins on page 60
People with psychiatric diagnoses faced institutionalization and exclusion much like people with intellectual disabilities, but family organizing came later, with the National Alliance on Mental Illness founded in 1979. The chapter sets family groups focused on treatment, recovery, and sometimes involuntary care against a psychiatric survivor movement that criticizes the psychiatric profession itself.
How it opens
Opens with journalist Pete Earley’s struggle to get treatment for his adult son Mike, whose bipolar disorder brought the family into collision with hospitals, police, and the courts.
In this chapter
- Considering psychiatric diagnosis
- Psychiatric patient movements
- Parent and family advocacy
- Parent and family organizations
- Tensions between organizations led by parents and organizations led by activists with disabilities
Questions for discussion
- When an adult child refuses treatment, whose rights are at stake? How do family groups and psychiatric survivors answer differently?
- Why might mental-health family advocacy have emerged decades after the Arc?
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Chapter 3 Autistic Identity and Parent Activism , begins on page 84
Autism was long folded into intellectual disability, and distinct parent advocacy only emerged once distinct treatments did. The chapter moves from the “refrigerator mother” era through the widening of autism into a spectrum, to the twenty-first-century “autism crisis” and the industry around it. Groups such as Autism Speaks pursued a highly medicalized politics of cure, in sharp contrast to autistic self-advocates who claim neurodiversity as identity — the so-called Autism Wars.
How it opens
Opens with Lisa and her son Jeremy, diagnosed before age two, and the years of therapies, school changes, and family sacrifices that led to Jeremy communicating with an AAC device.
In this chapter
- Considering autism
- Paradigms of autism
- Refrigerator mothers and psychoanalysis
- The invention of developmental disability
- From syndrome to spectrum
- Twenty-first century: the autism crisis and the autism industry
- Autistic activists respond
Questions for discussion
- How did blaming mothers in the mid-twentieth century shape the kind of advocacy parents later embraced?
- What would it take for an autism organization to be trusted by both parents seeking services and autistic self-advocates?
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Chapter 4 Physical Disabilities and Parent Activism , begins on page 108
Organizations such as United Cerebral Palsy, the Muscular Dystrophy Association, and the Easter Seal Society grew up around the same time as the Arc. This chapter follows their turn toward professional staff and large-scale fundraising, and the fierce protests disabled activists mounted against telethons that raised money by selling pity.
How it opens
Opens with Zona Roberts, whose son Ed contracted polio at fourteen. Her persistence helped him graduate, reach UC Berkeley, and become a founder of the independent living movement.
In this chapter
- The historical context for parent activism
- Parents and experts
- Muscular Dystrophy Association
- The Easter Seal Society
- Tensions with disabled activists: the telethons
- Parent organizations in the twenty-first century
Questions for discussion
- Zona Roberts never led an organization. Is supporting a child’s own activism a form of parent activism?
- What is lost when fundraising becomes the main way the public meets a disability?
Part II
Cross-Disability Analysis
Stepping back from single communities to ask what explains the timing, frames, strategies, and language of parent activism across all of them.
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Chapter 5 Timing: Factors Affecting the Emergence of Parent-Led Organizations , begins on page 131
Why did national parent organizations appear around 1950 for intellectual disability and cerebral palsy, but not until 1979 for mental illness or 2005 for autism? Oppression and diagnosis are necessary but not sufficient. What mattered was a diagnosis understood as a childhood condition, a sense of relative deprivation, new resources, and political opportunity — and, later, the successes of earlier parent groups, which newer groups built on or organized against.
In this chapter
- The founding of national parent organizations
- Required, but insufficient, factors: oppression and diagnosis
- Resource mobilization
- Relative deprivation
- Political opportunity structure and collective identity
- Age and historical timing of diagnosis
- Later parent activism: expanding the field
- Oppositional growth
Questions for discussion
- Why did blindness and deafness never produce a large, independent, parent-led national movement?
- Pick a disability community today. Which of the chapter’s factors would predict new parent organizing?
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Chapter 6 Frames and Positions within the Field of Disability Activism , begins on page 151
Maps parent-led organizations by how closely their “frames” match those of disabled activists: a social versus medical model of disability, integration versus disability-specific settings, and who holds power and voice. The closer the match, the more likely the alliance. An earlier version appeared as “Sometimes Allies” in Disability Studies Quarterly (2019).
In this chapter
- Examining frame alignment and alliance
- Models of disability: social model and medical model
- Medicalization toward cure and prevention
- Integration versus disability-specific sites and services
- Least restrictive environment and negotiated access
- Power and voice
- Positionality and alliance
Questions for discussion
- Where would you place an organization you know on the chapter’s three dimensions? What would it take to move it?
- Can an organization support the social model while still funding cure research?
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Chapter 7 Social Movement Strategies and Public Policy , begins on page 183
Parent organizations raise awareness, build and run services, lobby, and mobilize members. What divides them from disabled activists is usually the goal, not the tactic — with one exception. Parents rarely turn to protest and civil disobedience, which leaves disabled activists carrying most of the risk of direct action.
In this chapter
- From individual efforts to collective political action
- Public awareness and media campaigns
- Creating and delivering services
- Lobbying and policy advocacy
- Direct action protest
- Mobilizing membership
Questions for discussion
- Why do parents have “more to lose” through protest? Is that a reason, or an excuse?
- Two organizations run awareness campaigns with opposite messages. Which one is the ally?
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Chapter 8 Narratives of Rights , begins on page 199
Shifts from organizations to parents’ own words. Parents describe rights as tools for access and equity, as respect, and as a path to services — and they claim rights for their families, rights of parents, and rights to family life. But they also describe rights failing: as a demand for productivity, as cover for cutting services, as a threat to safety, and as a competition for scarce resources. Need, more than rights, is what unites parents.
In this chapter
- The power of rights
- Rights as a broad vision of respect and value
- Rights as a path to implementation
- Rights for family, of family, and to family
- The perceived failures of rights
- Rights as a mask for neoliberalism
- Safety and rights
- Competition for resources
Questions for discussion
- Whose “rights” are in tension when a parent seeks guardianship of an adult child?
- How can the language of rights be used to justify cutting services?
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Chapter 9 Parents, Children, and Advocacy across Life Transitions , begins on page 227
Needs and advocacy change across a lifetime: from the first diagnosis, through battles over treatment and school, to sexuality and adult roles, and finally to aging parents and interdependence. Lives are fluid, but service systems assume they stand still — nowhere more sharply than at the “disability cliff,” when school-based services end at twenty-one.
In this chapter
- Initial reactions
- Treatment advocacy
- Education and communication access
- Sexuality and adult roles
- Aging, independence, and interdependency
Questions for discussion
- At which life stage do parents and disabled activists seem most likely to agree? Least?
- What would a service system designed for change, rather than stability, look like?
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Conclusion , begins on page 245
Must parents be either allies or obstacles? The authors argue against the binary. Parents tend to share three habits: they speak from their relationship to their child, they insist society take responsibility, and they claim authority over their child’s best interests. Alliance grows when parents share disabled activists’ commitment to the social model, integration, and empowerment — and when they are willing to cede power. The book ends by weighing rights against disability justice and calling for coalitions that lift up those most marginalized.
How it closes
Closes with two examples of what alliance can look like: Pamela’s mother, Barbara Kilcup, and her sister Hope, and the independent living pioneer Gini Laurie.
In this chapter
- Allies, obstacles, or something in between?
- Organizational frames
- The timing of parent activism
- Strategies for social change
- The state
- The narrative of rights and ideas of disability justice
- Temporal and spatial shifts
- Disabled parents
- Building alliances
Questions for discussion
- The authors ask who counts as “us” in “Nothing about us without us.” How would you answer?
- What would it look like for a parent organization to truly cede power?
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Appendix A Note on Methods , begins on page 259
Explains how the research was done: organizational and archival documents, news reports, blogs and online forums, and twenty-seven interviews with parents, self-advocates, family members, and professionals.
Key ideas
Sometimes allies
From disabled activists’ point of view, parents are neither simply allies nor obstacles. At times they organize side by side, at times in opposition, and at times they are simply not paying attention.
Introduction; Chapter 6
A relational model
For most parent activists, disability is not an individual experience. It affects whole families and communities, so society must share responsibility — and parents claim rights too.
Introduction
Parental authority
Parents demand support from the state while insisting on their own expertise over their children’s lives. That claim to authority is the deepest source of tension with disabled activists.
Introduction; Conclusion
The disability cliff
The point, usually at twenty-one, when school-based services end and families face waiting lists and bureaucracy just as young adults are meant to be launching their lives.
Introduction; Chapter 9
Imagined futures
Drawing on Alison Kafer, the book asks whose imagined futures shape policy. Self-advocates often envision jobs, homes, and marriages that parents struggle to picture — while some parents say “imagination” hides unmet need.
Introduction
Rights and justice
Rights have opened doors, but they favor those with the resources to claim them. Disability justice asks for broader change that centers the people most marginalized.
Chapter 8; Conclusion
What makes an alliance?
Parent organizations are most likely to ally with groups led by disabled activists when they share three commitments:
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Social model over the medical model
Seeing disability as shaped by barriers in society, not only as a condition to be cured.
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Integration over segregation
Working for access to ordinary schools, jobs, and communities rather than separate settings.
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Empowerment over parental control
Letting disabled people lead, speak, and decide for themselves.
A note on language
Disability language is contested, and different communities prefer different terms. The authors use each community’s preferred language when writing about it, moving between person-first and identity-first language as a sign of respect.
- Person-first language
- For example, “person with a disability.” Common among professionals and parents, and preferred by Self-Advocates Becoming Empowered.
- Identity-first language
- For example, “autistic person” or “disabled people.” Common among autistic self-advocates and activists with physical disabilities, it affirms disability as a shared, valued experience.
- Psychiatric survivor, mad
- Terms chosen by some people who experienced psychiatric treatment. “Survivor” names harms done by the system, and “mad” is reclaimed with pride.
- Crip
- Reclaimed by some people with physical disabilities as a powerful, proud term.
The research
The book draws on organizational and archival documents, news coverage, blogs, and online forums, plus 27 interviews with activists aged 21 to 89. The interviews focused on people whose voices are least visible online, including older activists and self-advocates with intellectual disabilities.
Source: the book’s methods appendix. Interviewees are identified by pseudonyms.
Why we wrote it
This is a deeply personal project. Pamela’s mother, Barbara Kilcup, was a special education teacher and, when her children were young, a strident parent advocate. Over time, Barbara and Pamela’s sister Hope worked together and came to align closely with disabled activists. For Pamela, they showed how powerful a parent ally can be.
Allison grew up engaged with the intellectual disability community through her family and the Arc. Richard, whose career began with the history of disability civil rights, proposed that they write the book together.
Parents discovered long ago that they could accomplish far more by working to benefit all children with disabilities rather than just their own child.
Reviews
Podcasts, interviews & talks
Related writing
From Chapter 5
When parents organized
National parent-led organizations and the years they were founded.
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1949
Parent-led
United Cerebral Palsy
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1950
Parent-led
The Arc
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1967
Parent-led
American Society for Deaf Children
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1979
Parent-led
NAMI and the National Down Syndrome Society
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1983
Parent-led
VOR and the National Organization of Parents of Blind Children
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1989
Parent-led
National Federation of Families for Children’s Mental Health
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1997
Parent-led
Hands & Voices
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2005
Parent-led
Autism Speaks