How can we centre disabled people and their family members as knowledge-bearers, enriching classrooms with their perspectives and knowledge in non-traditional ways?

Through testimonies and critical ethnography, and bell hooks’ centering of love as transformative praxis, this book explores the lived experiences of disabled young adults and family members. The testimonies reposition people with disability as knowledge-bearers whose ways of knowing have typically been discounted by professionals. The stories are raw, sometimes painful, enlightening, and filled with hope. The chapters feature stories from both emerging and former educators, the voices of authors with disabilities with and without experience of intersectionality, former practitioners who have supported children with disabilities and their families, family members who have navigated systems, and life through a local and global context. Each story shows the value of disabled people and their families as educators who teach others both informally and formally.

This book is ideal reading for teachers, emerging teachers, curriculum designers, and education policy makers, as well as students of Education, Social Work, Special Education, and Disability Studies.

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Abstract
• Table of Contents
• Foreword: What’s Love Got to Do with It?
• A Note on Language
• Content Warning
• Introduction
• Learning Objectives
• 1 A Parent’s Fight: Nurturing Identity, Overcoming Adversity
  • Reflective questions
• 2 Older-Younger Sister: The Unknown Middle Child
  • Reflective questions
• 3 Mama Bear
  • Discovering a new calling
  • “No” is a choice
  • Tale of two heroes
  • Next steps
  • The way forward
  • Reflective questions
• 4 It’s Complicated
  • The final chapter
  • The beautiful parts
  • Reflective questions
• 5 Too Much…Not Enough
  • The phone call
  • Missing out
  • Reflective questions
• 6 Speaking Out: A Letter to the Reader
  • Initial experiences
    • Speak up!
  • Silence is not golden
    • Disability looks different for many families
  • Broader advocacy
  • Language was a bridge and a barrier
  • Introspective thoughts
    • Hoping for a future
  • Reflective questions
• 7 “Listen”
  • Reflective questions
• 8 How Does It Feel to Be a Woman with a Disability in a Developing Country?
  • Disability perceptions: a global perspective
  • The mothers who carry us forward
  • A crying need for a disability-friendly tertiary14 education system
  • Transition hopes
  • The long road ahead
  • Reflective questions
• 9 Finding Myself through Autism
  • Reflective questions
• 10 School as a Site of Resistance: Becoming an Advocate
  • What can school districts and teachers do?
  • What can TPPs and teacher educators do?
  • Schools as a site for resistance
  • Reflective questions
• 11 Empowering Exceptionality: A Mother’s Call for Collaborative Understanding in Education
  • No rest for the weary
  • Jimi’s communication: a mother’s understanding
  • Professional gaze: failed understandings
  • Reframing it: beyond a disability label
  • Reflective questions
• 12 Kerri’s Way: Family, Lessons, and Memoir
  • Kerri: a family and individual disability experience
    • Beyond the diagnosis
  • Kerri is the reason
    • Kerri’s impact
    • Questions from a pre-service educator
  • Conclusion
  • Reflective questions
• 13 The System Failed Me, but I Did Not Personally Fail
  • Set up to fail
  • A system not made for me
  • When “help” is actually harm: take one
  • Missed opportunities
  • Returning to school
  • The power of words
  • More missed opportunities
  • The impact one bad experience can have on you
  • The beginning of change
  • The challenge of change
  • When “help” is actually harm: take two
  • The system must change
  • Dear friends in the struggle
  • Friends, family, and special shoutouts
  • Reflective questions
• Notes
• References
• Notes on Contributors
  • Editors
  • Contributors
• Index

Lydia Ocasio-Stoutenburg PhD is Assistant Professor of Special Education at the Pennsylvania State University whose research centers on the lived experiences of people with disabilities and their families, especially people experiencing intersectionality. She is also the mother to a disabled child and lifelong advocate.

Yuchen Yang is a PhD candidate in Curriculum and Instruction at the Pennsylvania State University, specializing in early childhood education.