What Matters: Reflections on Disability, Community and Love

by Janice Fialka

This is the story of Micah, who has an intellectual disability, his community, and his ground-breaking journey to full inclusion in K-12 schools, college, work and life. It is told by Micah, as well as his parents, his sister, friends and colleagues in essays, poems and interviews.

Despite such labels as "low I.Q.", "unemployable" and "not-a-student," the book powerfully chronicles how Micah was fully included since elementary school, and later, how he challenged discrimination in the federal court, and won, how he moved 300 miles from his home to became a teaching assistant at Syracuse University, and most recently, how he survived heart surgery.

It offers practical strategies to ensure authentic lifelong inclusion, create circles of support, help parents shift from protectors to guides. Micah and his community are mentors on how to honor interdependency, redefine disability, cultivate relationships, and live a meaningful life. A book of hope and practical guidance for families, self-advocates, professionals and all there rest of us---because we all need to be included.

233 pages, Paperback

First published June 1, 2016

About the author

Janice Fialka is an award-winning advocate and nationally-recognized lecturer on issues related to disability, parent-professional partnerships, inclusion, raising a child with disabilities, sibling issues, and post-secondary education. She has authored a newly released book of her son's journey into a fully inclusive life: What Matters: Reflections on Disability, Community and Love.

Reviews

[Caitlin · Rating 5 out of 5]

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.

[Terry S · Rating 5 out of 5]

As a parent of a young adult on the autistic spectrum, I found this book to be very encouraging and educational. It definitely supports the need for early intervention, determination and a huge circle of supports to achieve the best results. When our son received his diagnosis at a very early age, I was overwhelmed with many books that targeted the preschool and elementary school years. The last chapters always left me wondering how the various programs and recommendations would make a difference for our son as an adult. This book would have been a welcome addition to those books when our son was starting his interventions. It not only sheds light on the benefit of a well coordinated team approach, but it also provides insight to the possible successful outcomes for someone with a learning disability in spite of their limitations. I had the pleasure of attending a retreat with Janice, Rich and Emma who shared their experiences of life with Micah. He is an amazing independent adult who gives hope to parents beginning the walk through life with a child that has an intellectual disability. Janice's account of the early years brought back every emotion I felt after that first assessment and consultation with a specialist. This is a must read!