Tending To What Really Matters, A Book Review

Sustaining Spirit: Self-Care for Social Justice, by Naomi Ortiz; Reclamation Press, 2018. 222 pages.

What Matters: Reflections On Disability, Community and Love, by Janice Fialka; Inclusion Press, 2016. 238 pages.

Intelligent Lives, Film by Dan Habib, 2018


Rich Feldman

Sometimes books connect deeply with our own lives and experiences. Naomi Ortiz’s recent book, Sustaining Spirit: Self Care for Social Justice, did that for me.

For decades, I have asked,  “Who is not at the table?” I have sung “Lift Every Voice” and wondered do we really mean everyone’s voice?    

These questions are not abstract. As the father of Emma Fialka-Feldman and Micah Fialka-Feldman, I have learned so much about what it means to be a human being.  My children and family have been my teachers as together we shared struggles for the rights of people with disabilities and the dignity of people, expanding our understanding of sexual identity.

Naomi Ortiz challenges us in her new book to imagine the possibility of creating a fully inclusive freedom movement, through a systematic struggle for interdependent communities. Creating an inclusive movement that asks how can we become more human human beings has been part of our family’s journey.  

Adela Nieves, a Detroit-based traditional Health Practitioner and Taino, recently wrote about Ortiz’s Sustaining Spirit: Self Care for Social Justice, saying :

Self-care and activism have become a widely discussed subject in activist circles, yet in practice have been often been difficult to implement. With this book, Naomi Ortiz has made it both accessible and, most importantly, possible. She reminds us that we are part of the flow of nature, and helps infuse the spirit in each of us back into our activism. It’s a must-read for those of us doing this work, and a critical reminder that we must care for ourselves too so we can be there for the long term.

I have learned from my son Micah that disability is part of the human condition.  In 1984, Micah (throughthesamedoor.com) was born with many labels. As we have moved with him through decades of advocacy and struggles against ableism, we have come to understand that “a community that excludes even one person is not a community at all.”   (http://www.thenthdegree.com/aboutus.asp )                       

Our family journey toward a more inclusive world is chronicled by my wife Janice. I am sharing a review of her work, along with that of Naomi Ortiz. Janice Fialka (danceofpartnership.com)  wrote What Matters: Reflections on Disability, Community and Family.  

The review below, written by Professor of Inclusive and Place-Based Education Greg Smith, appeared in the Spring 2018 Issue of Rethinking Schools.

Janice Fialka’s What Matters: Reflections on Disability, Community, and Love (2016) recounts her three-decades-plus experience raising a son with intellectual disabilities.  It can serve as a memorable and moving introduction to the emerging disability movement which asserts that all forms of disability are not deficits but instead expressions of the variety of ways that humans can exist in the world.  Such an assertion challenges unexamined beliefs about normality and requires a shift in the way we think about inclusion. Fialka’s story of her son Micah demonstrates the importance of setting high expectations, allowing people with intellectual disabilities to pursue their own dreams, and taking risks within a community of support that values interdependence over independence.  This combination of factors has allowed a person initially slated for institutionalization to become a teacher in courses about special education at Syracuse University and a social justice activist in his own right. More educators need to embrace the vision of disability pride presented here.

The continuation of our journey is also chronicled in a new film, Intelligent Lives, which features Micah and two other young adults, Naieer and Naomi. Intelligent Lives follows the stories of these three young adults with intellectual disabilities as they challenge perceptions of intelligence while navigating high school, college, and the workforce.
The Michigan Premier will be Sunday, October 7, 2:00 pm at Berkley High School.   The screening will be followed by a panel discussion featuring our two children, Emma and Micah, who both graduated from Berkley.
The event will conclude with a signing of Janice Fialka’s book, “What Matters: Reflections on Disability, Community and Love,”which chronicles Micah’s groundbreaking life of full inclusion in school, work, and life.

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