Meeting Families Where They Are

“Harry and Ocasio-Stoutenburg combine academic expertise with personal experience as parents of children with disabilities in this informative and emotionally driven work.” —CHOICE

“A remarkable account of the legacy of advocacy among parents of children with disabilities in the U.S.” —Teachers College Record

This book presents an in-depth discussion of how human disability and parental advocacy have been constructed in American society, including recommendations for a more authentically inclusive vision of parental advocacy.

The authors provide a cultural–historical view of the conflation of racism, classism, and ableism that has left a deeply entrenched stigma—one that positions children with disabilities and children of color as less valuable than others. To redress these inequities, the authors offer a working model of co-constructed advocacy designed to benefit all families. Because advocacy is not a “one size fits all” endeavor, the authors propose meeting families where they are and learning their strengths and needs, while preparing and repositioning families to empower themselves.

Book Features:

• Takes a cultural–historical view that explores the reasons why individuals with disabilities are so stigmatized.
• Shows how the intersection of different stigmatized identity markers, such as poverty, race, and language, have been woven into negative interpretations of “difference.”
• Celebrates the history of parent advocacy in the United States since World War II.
• Examines how social and racial privilege have dictated which parent voices are heard.
• Proposes collaborative approaches that can produce more authentic and more representative advocacy.
• Explores the motivations and purposes that drive parent advocacy.

Beth Harry is a professor of special education and chair of the Department of Teaching and Learning at the University of Miami, and coauthor of Why Are So Many Minority Students in Special Education? Second Edition. Lydia Ocasio-Stoutenburg is a doctoral candidate at the University of Miami.

“Harry and Ocasio-Stoutenburg (both, Univ. of Miami) combine academic expertise with personal experience as parents of children with disabilities in this informative and emotionally driven work. The book provides a qualitative examination of the treatment of children with disabilities and their families using an intersectional approach through the lens of ‘DisCrit,’ a combination of disability studies and critical race theory. Though the volume is intended for educators and academics, it also provides hope, suggestions, and a look into oppressive societal structures that would be useful for parents who advocate for their own disabled children.”

—CHOICE

“This book is a remarkable account of the legacy of advocacy among parents of children with disabilities in the U.S., with particular attention to the experiences of parents of color. Centered in the theoretical frameworks of DisCrit and intersectionality, the authors take readers through a critical, historical journey of how disabilities have been socially constructed, how parents’ voices have been disregarded by professionals, and how collective parental advocacy efforts have evolved over time.”

—Teachers College Record

“The authors, Beth Harry and Lydia Ocasio-Stoutenburg, are women; they are women of color; they are parents of children with disabilities; and they are scholars. They intend to challenge us, and they do. They argue that any classification—into or out of a race, ethnicity, gender, disability, social, or economic category—is an exercise of power. Not power with another, or power within a relationship, but power over. They defensibly argue that the entire civil rights movement on behalf of persons regarded as having a disability has been less successful than its progenitors intended it to be. That is true; it will always be true that there is more equal protection to find and apply, more equity to create and enforce, more advocacy to do. Harry and Ocasio-Stoutenburg are liberators of our minds; they engage us in a secular liberation ethic. That is why this book is important.”
—Rud Turnbull, B.A., Ll.B., Ll.M., Distinguished Professor Emeritus, University of Kansas

“Harry and Ocasio-Stoutenburg have created a unique text that unearths the widely unacknowledged experiences at the intersections of race, disability, and parenting, portraying them as far more nuanced and complex than is often understood by professionals in the fields of education and medicine. Boldly redefining the scope of advocacy, pushing outside the comfort zone of its current boundaries, they raise moral and ethical questions through which we come to better understand how professional practices can enable or disable minoritized families in pursuit of what is best for their children. Of value to educators, doctors, parents, and parent advocates, this text purposefully centers the experiences of parents of color who have children with disabilities. The result? A powerful collective testimony for the need to re-envision parental advocacy to be co-constructed within authentic partnerships that move from advocating for, to advocating with parents, informed by their perspectives and knowledge about what’s best for their child.”
—David J. Connor, Professor Emeritus, Hunter College and The Graduate Center, City University of New York

“Meeting Parents Where They Are is an enlightening and stimulating read for those committed to better understanding the complexity of the plight of parents of color as they attempt to advocate for the educational needs of their child with a disability effectively. Harry and Ocasio-Stoutenburg utilize their own personal stories as well as those of other parents of children with disabilities who span multiple dimensions of difference—including race, social economic status, language, and sexual identity—to powerfully illustrate how identity and oppression intersectionality plays out in educational policies, perceptions of ability/disability, and provision of service delivery. Their analysis demonstrates what the journey towards effective advocacy looks like in schools, communities, and diverse contexts. This book is a rare find and a must-read for all parents of marginalized children, as well as for educators committed to meeting the needs of all students and their families regardless of disability, difference, or context.”
—Wanda J. Blanchett, Distinguished Professor and Dean, Rutgers University, Graduate School of Education

Contents (Tentative)

Acknowledgments vii

1. Constructing Meanings of Human Difference at the Intersections of Identity: Personal and Conceptual Considerations 1
The Authors’ Lenses 3
DisCrit: A Lens for Viewing Family and Community Intersections 4
The Co-Construction of Advocacy 8
Overview of the Book 8
Qualitative Vignettes and Authors’ Reflections 10

2. Parent Advocacy and the Challenge of Difference 13
Personal Perspectives 14
Goals and Avenues of Advocacy  16
Why Advocacy for the Value of the Child? 18

3. Constructing Race and Disabilities as Intrinsic Differences: A Cultural-Historical View 25
“Intrinsic” Attributions: From the Supernatural to Science 25
Conquest, Slavery, and Colonization: The Intertwining of Race, Disability, and “Normality” 28
Families with Developmentally Disabled Children in the 19th Century 32
The 20th Century: The Hegemony of Intelligence as a Measurable Construct 36
The 20th Century and the Disempowerment of Parents 42

4. Parent Voices Rising: Challenging Constructions of Difference 49
Advocacy and the Judges 49
Parents’ Published Narratives 51
The Emergence of Advocacy Organizations 59
Exposing the Institutions 65

5. The Social Construction of Humanness 71
The Meaning of Disability 75
The Painful Contours of Parent Advocacy 77

6. Advocacy Toward the EHA: Converging Interests and Intersections 93
Parent Advocacy: The Law as the Vehicle 93
The Construction of Disability Under the Law 96
The Label as a Negotiating Tool 102
The Label as Exclusion or Confusion 107

7. Parent Advocacy Under the Umbrella of the EHA/IDEA 109
Challenges of Racism, Ethnocentrism, and Context 110
Parent Advocacy: The Law as the Obstacle 125

8. Reframing Advocacy, Repositioning the Advocate 139
De-Constructing Advocacy 140
Revisiting Our Guiding Principles 145
Co-Constructing Advocacy: Developing a New Model 151
Forging Ahead 157
The Next Chapter 158

References 161

Index 175

About the Authors 184