Introduction

I did not grow up with a disability, but from an early age I often felt like an outsider looking in; I knew well the terribleness and wonderfulness of being an “other.” Once I developed disabilities as a young adult, I discovered a community of outsiders I had not known before. I had the great good fortune of entering that community right around the time that the ADA (Americans with Disabilities Act) was passed, in the heyday of disability rights activism, when thousands of people were speaking out about disability and proud of it. Creating this anthology has been a way for me to pay tribute to that community; it has given me an opportunity to affirm the essential humanness of people with disabilities and to honor the qualities that, because of ignorance and fear, often isolate us. In doing so, my hope has been to chip away at the shame and the sense of otherness many of us, with or without disabilities, can carry inside us when we don’t fit into narrow ideas about the “right” way to be in the world. Above all, my hope has been to both dispel misconceptions about disability and celebrate differences — differences between people with disabilities and those without, and among people with disabilities themselves.

When I first conceived of this anthology, I had seen much written about young people with disabilities but rarely seen anything by them. I was excited about the possibility of kids speaking to us directly, rather than through educators, parents, and other adults, as caring and insightful as those adults might be — first, simply because I believed it was only right that the kids’ own voices be heard; and second, because I believed they could teach the rest of us a great deal. What was it like for them to live with their disabilities? I wondered. How did they deal with the practical aspects — with the barriers they encountered, whether in the physical environment or in people’s attitudes about disability? What about in their homes and out in the community? Did they get the love, acceptance, and support they needed — that any child might need — from family, friends, and neighbors? And what about in their hearts? More than anything, I longed to hear about what was most dear to them, what frustrated or angered them, what inspired them and filled them with joy.

I began searching out young people interested in answering my questions. I cast my net widely — calling upon teachers, parents, medical personnel, disability-related organizations, and friends — with the hope of receiving contributions from a broad spectrum of individuals.

I was rewarded with a rich array of responses. I heard from girls, boys, young women, and young men, from five to twenty-one, with disabilities spanning an enormous range — from Down syndrome to cerebral palsy, from blindness to depression and anxiety. Their racial, ethnic, and class backgrounds also varied, as did their feelings about their disabilities.

The forms of their responses varied widely as well. They sent me poems, drawings, essays, letters, journal entries, and songs. Some parents and teachers invited me to conduct interviews. The form of each response was determined in large part by the author’s age, ability, and background: A young man with Williams syndrome, a disability often characterized by musical gifts, contributed a song. A girl with aphasia, who had an easier time speaking through pictures than words, contributed a drawing. Some young people were most comfortable revealing their stories through the intimacy of letter writing, still others in face-to-face conversations. I was thrilled with the scope and diversity of responses; my vision of a collection of stories about young people with disabilities — as told by the young people themselves — was coming to fruition.

Disability can put into stark relief basic questions about how to live day by day and about faith and meaning — questions like, “How do I get through this night feeling sick as a dog?” and “What forces in my life give value and sustain me?” Many of the young people who tell their stories here have confronted such questions. My fervent wish is that in listening to these stories, we can learn deeply from them and find a way to more fully open our hearts to each other and to ourselves.

Linda Hillyer