“In a powerful and inspiring book about unflamboyant heroes, Andrew Potok creates extraordinary portraits of men and women who are changing the world not just for those with disabilities but for us all.” (From the book jacket).
In A Matter of Dignity: Changing the World of the Disabled, by Andrew Potok (Bantam Books, 2002), Potok takes us along on a personal journey in which he is learning to live with a degenerative condition that is leading him into increasing disability. His quest to come to terms with his own advancing stages of blindness due to retinitis pigmentosa finds guidance from an impressive collection of mentors, whose stories he chronicles. Many of those he writes about have disabilities themselves. All care passionately about quality of life for persons with disabilities, to the extent that they have invested years of their lives pursuing excellence in a particular aspect of improving the lives of people with disabilities.
Over the years that I have been involved with disability advocacy through ADNet, I have experienced a slow transformation of my attitudes toward disability—my own disability and that of others. From first going public with my mental health history in a storytelling chapel at Associated Mennonite Biblical Seminary, through recognizing that my passion for disability advocacy has deep roots in my experience of oppressive stigma, and on toward realizing how much my friends with disabilities continue to teach me, I have come to embrace and even feel thankful for the presence of disability in my life. My history of mental illness is no longer a point of shame, it is a part of the identity I claim with pride (humble Mennonite pride, of course).
How did I come to this new place, and where might I point others struggling to come to peace with their own diminishing faculties or a child’s new diagnosis? I hope that someday I may be able to piece together some of the stories that contribute to my changing attitude. In the meantime, I invite you to obtain a copy of A Matter of Dignity and learn from Potok. Through his storytelling about passionate disabilities advocates, assistive technology experts, guide dog trainers, and others, Potok shows by example that disability is not a fate worse than death.
Although Potok does not speak explicitly about faith, his stories have the power to fire the imaginations of people of faith to see the essential dignity of all people, including people with disabilities. ADNet is in the business of supporting families and equipping the church for inclusive communities. As part of that equipping, I continue to invite us all toward new understandings of disability in the church. We need to see our sisters and brothers with disabilities not as perpetual objects of charity, nor signs that someone somewhere sinned. All of us, if we live long enough, will become people with disabilities. They are—we are—indispensable, contributing members of Christ’s body, the church. Let us not miss out on all that people with disabilities have to teach us.
With all the strengths of Potok’s book, it is worth noting that some language in the ten-year-old book is no longer well accepted among people with disabilities. Rather than identifying people by their deficit,( “the disabled,” “the mentally ill,” etc.), many people with disabilities appreciate “people first” language, that is, “people with disabilities,” “people with mental illness, etc. Since mental illnesses account for more disability worldwide than any other disability category, I welcomed Potok’s final chapter on mental illness, though for me it did not quite make up for the absence of mental illness from all earlier chapters. Other aspects of the chapter that troubled me: Potok seems to count autism as a mental illness, ignores all other developmental disabilities, and allows family members and professionals to do all the speaking for people with mental illness. Yet these shortcomings were not a great distraction from the overarching theme of the book, the dignity inherent in persons with disabilities, as in all people.
Thanks to Don Kauffman (Newton, KS) for calling this book to my attention and sending me quotes from the book jacket. Don wrote, “Mr. Potok’s explanation helped me to understand that most of us at some point are required to deal with disabilities in our own life-long journeys. As Susan Sontag wrote: ‘We are all a little bit ablebodied and a little bit disabled. The degree to which we are one or the other shifts throughout life.’”
