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Reflections on Disability,
Community and Love
ISBN: 978-1-987935-15-8 (ebook)
Publication: June 2016
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About this Book
Janice Fialka is a brilliant writer. Micah Fialka-Feldman is her son. He is a teaching assistant at Syracuse University and one of the most charming people you will ever encounter. This remarkable story, draws on the reflections from family and friends - and walks us through the journey to this remarkable current reality. But the story begins as a stunning ‘disability’ story except that this family said no. They decided that Micah wold be fully included and have a full life. And does he ever.
Remarkably, Janice, Rich, Micah and Emma do not hold back. They have the courage to tell the story warts and all… which is why it is a ‘must read’ for every family, every teacher - every person who cares about another person.
And stay tuned - because the movie is coming: Dan Habib is shooting it now, so read on and then order the movie.
What people say about this book…
Janice Fialka has taken up the adventure of parenting bravely, creatively,
and mindfully, and here she shares a lifetime’s harvest of wisdom and
practical guidance for families, educators, clinicians, and all the rest of us.
She writes, early on, that “Micah has deepened my understanding of the
absolute brilliance of asking for help. He is at ease with what he can do and
what supports he needs.” This is a counter-cultural brilliance in American
life, but with a winsome combination of poetry and pragmatism, she
reveals it as possible for us all - and as a beautiful way out of the impoverishing
illusions of “self-sufficiency” and “normalcy. I am grateful that this
mind-opening, life-altering, soul-stretching book is in the world.
—Krista Tippett, Executive Creator/Host, On Being + The Civil Conversations Project
Author, Becoming Wise: An Inquiry into the Mystery and Art of Living
Take into your heart the message embodied in this book and everything
else about inclusive education will naturally fall into place. If you
read only one book this year, make it this one. It’s the real deal.
—Cheryl M. Jorgensen, PhD, Inclusive Education Consultant
Wisdom is timeless, but insight may grow over the years. I am grateful
to Janice Fialka for taking the time to reflect on the wisdom she gained
as Micah’s and Emma’s mother, and how her insights have grown in 20
years since her first book. Parents of people with developmental disabilities
seldom have time to reflect. What Matters: Reflections on disability, community
and love is a gift to us, a chance to open our hearts and minds to reflect on
our own paths, insights, and wisdom. It is a gift to the field, as well, an invitation
to think of how much has changed and how our professional allies
have helped to open the horizons for all us. We are in this together.
—Sue Swenson, Acting Assistant Secretary for Special Education and
Rehabilitative Services, US Dept. of Education
The Fialka-Feldman family has taught me that there can by no inclusion without
the inclusion of my son’s voice. With Janice’s help I have learned that my
son’s voice is crucial to creating a circle of support. When we listen to him, we
learn how to think out of the box; he learns that he belongs at the table both
at school and in life. Thank you Fialka-Feldman family for reminding how to
listen with love and how to keep dancing when I don’t do it so well.
-Cindy Estrada, Vice President, United AutoWorkers (UAW)
This book offers delight, clarity and insight not only for those seeking inclusion
in society, but for all people working to change things that matter to
us. Whatever our cause, the questions persist: How do we persevere for the
long term without being overtaken by anger and exhaustion? How do we
keep improving relationships with everyone, even those bureaucrats and
professionals who hide behind their expertise? How do we celebrate and
cry together and learn that joy is always available in our deep connectedness,
no matter the external circumstances? These questions are answered
here, by this persevering, insightful, loving family and their friends.
author of Leadership and the New Science and many other books
Having a child with a disability makes life busier, more complicated, and
much, much more creative. This collection of writings by Janice Fialka, her
family, and others captures the evolution of their lives over three decades—
lives of adventure, love, laughter and risk taking. With powerful honesty and
eloquence, her writing shows us what it means to be fully inclusive, and what
it means to be fully human. This collection is an essential toolbox for families
and educators who are navigating a world of diverse abilities.
—Dan Habib, Filmmaker of “Including Samuel” and an
upcoming film featuring Micah Fialka-Feldman
I have always believed that we are all one another’s mentors just as surely as
we are all one another’s mentees. You will see this principle exemplified in
Janice Fialka’s life and her work which are inextricably intertwined. She has a
way of opening her life experience like a book from which we all can benefit
and to which we can be contributors. This is an act of great generosity and
humility that she has clearly imparted to her children and they, in turn, to us.
We learn from them, both about what inclusion really is and also how to draw
on and share one’s own experiences as an example. I have no doubt that, as a
reader, you will find comfort and insight in the warm company of Janice, Rich,
Micah and Emma and their friends as soon as you open these pages.
-Mark Larson, Ed.D
The webs we weave in our lives can become complex and difficult, especially
for families who experience disability (which, ultimately, is likely to
be most of us). Janice Fialka reminds us that if we focus upon what is important
– love and laughter, creativity and intention, interdependence and
community – we can live incredibly rich lives of joy, celebrate difference
and move beyond those societal attitudes that can be disabling.
-Sharon Lewis, Former Commissioner
Administration on Intellectual and Developmental Disabilities
U.S. Dept of Health and Human Services
I devoured this book in one sitting complete with both laughter and tears.
Janice and her family share their stories with an authenticity that is rare
but desperately needed in a world that glorifies easy answers, exceptionalism
and professional interventions. Through their stories we see that only
when we turn towards one another and do what is right, especially when
it’s hard, do possibilities for a full life truly emerge.
-Caitlin Petrakis Childs, Community Organizer and Consultant
Former Director of the Real Communities Initiative.
You will notice that all of the contributions from others in this book mention
friendship. This is not an accident. Janice has many gifts. But most
salient is her authentic and intentional ability to truly connect with people.
Janice is eager to know…. really know…. YOU. This beautiful give and
take is what readers will feel with every entry in this book, old and new.
This wonderful compilation invites you into an ongoing conversation about
family, disability, hope, and expectation. It asks us to explore important
questions about how we can make things better for our families and our
communities. This book is a warm hug of encouragement, a shoulder to cry
on, a magic mirror that tells each reader in no uncertain terms,
“You are not alone!”. It will become a touchstone and friend that
you can count on for years to come. Just like Janice.
-Meg Grigal Ph.D, Co-Director, Think College Research Fellow
Institute for Community Inclusion, University of Massachusetts Boston
Janice Fialka chronicles her family’s odyssey through challenges and
obstacles, false turns and foul winds as they make their way, step by step,
with heart and courage and gathering wisdom. What Matters is also a reflection
on our wild and dazzling diversity, and the universal and irrepressible
agency that lives inside every soul, ready to spark up and surprise us if
we’re prepared to pay attention, and then fan those first flashes into lifegiving
fires. This is a book for parents and teachers, lawmakers and policy
people, and anyone interested in creating a future fit
for all— a place of joy and justice, powered by love.
-William Ayers, Distinguished Professor of Education (retired), University
of Illinois, Best Selling Author:Teaching with Conscience in an Imperfect World
Nothing sharpens and redefines your priorities as a parent like learning
that your child will live with a disability. Typical stresses are quickly forgotten,
and new worries can seem insurmountable. In this book of essays,
Janice Fialka and her family selflessly offer incredibly honest stories of how
they have dealt with the challenges, built the relationships, and shared
their successes so others can learn and benefit. Her family is helping other
families realize that, disability or not, all of us can have dreams, work hard,
learn from failure, and experience sweet success.
-Beth Swedeen, Executive Director
Wisconsin Board for People with Developmental Disabilities
Janice and her family have taught me that we all thrive best in the presence
of community and that we cannot expect that community to magically
emerge out of nowhere. It takes organization. I have watched Janice and
her family do this kind of organizing in the disability rights movement
since I can remember and it has been a tremendous gift to the way I go
through the world. True to form, they found a way to include each voice in
their collective story. I am honored to continue to learn from Micah and his
family’s journey and am constantly in awe of Janice’s ability to spoon from
the softest places of her delicious heart and share the bounty.
-Julia Putnam, Principal, The James and Grace Lee Boggs School
As a retired Detroit Public School teacher, Lifelong Learner and Community
Educator, I am convinced that this book matters. It provides a needed
framework for education that few people understand. The type of learning
that combines schooling, family and community education in a substantive
manner. What Matters: Reflections on Disability, Community and Love will
give readers a rare education of a family’s struggles, growth and willingness
to be vulnerable in public about a lifestyle that few people would have
the courage, understanding and love for community to share.
This book will give new meaning to the word education.
-Kim Sherobbi, Detroit Public School Teacher, retired
James and Grace Lee Boggs Center to Nurture Community Leadership
In this book, Janice Fialka invites us to explore and reflect upon, “What
Matters”. Through poetry, storytelling, and the sharing of life’s struggles,
she not only opens her heart to the reader, but she allows the reader’s heart
to open, just a bit more with each page. Her insight, her awareness, and her
profound dedication will inspire you to continue to fight for justice, to live
with greater compassion, and above all, to work and live from a place of
love for one another, regardless of ability!
-Kristie Pretti-Frontczak, Ph.D.
This book is a treasure. Its stories, essays, and poems guide the reader
through a beautiful range of human experiences and feelings, including
fear and pride, validation and inspiration, compassion and vulnerability,
guilt and dignity, courage and commitment. From page to page, it walks a
journey of inclusion, community, and love, inviting the reader to share in
the challenges and lessons of this journey. In sharing her and her family’s
voyage to discover “what matters,” Janice Fialka has also given us a clear
and compelling way to think about the even more profound question of
what it means to be a human being.
-Stephen Ward, Associate Professor, Department of Afroamerican and
African Studies and the Residential College, University of Michigan
Janice is my muse about families and disability over the lifespan— the creative
source who inspires my mind, heart, and soul. I experience insight and
inspiration from every interaction I have with her. I am indebted to Janice
and also to her precious family--Micah, Emma, and Rich—who are her bedrock.
If I could recommend a single book about family life and disability to
families and professionals alike, hands down it is this one—What Matters.
-Ann P. Turnbull,
Distinguished Professor Emerita, Department of Special Education,
Co-Founder, Beach Center on Disability, University of Kansas