CHAPTER 1
Why Does It Matter?
I HAVE WRITTEN A BOOK in which I am the central character. Since I am not a celebrity nor a great athlete nor a famous politician, an explanation is in order. Why does my story matter? Why should a reader want to know about my life? I offer my answer with humility.
I have lived my life with purpose. I am a blind man who refused to accept a passive role, even though there were many times when others urged that path upon me. Each of us struggles to make our way in life, to establish families, to find meaningful work, and to connect with our community. We think those who succeed in this struggle are successful, happy people. It is not always easy to achieve this level of success; however, the courage to make the effort and the determination to not quit in the face of social barriers and personal failures are necessary qualities if we are to achieve a good and useful life. In our time there are many stories of lives gone astray, talents wasted, opportunities squandered; however, this is not my story. I have struggled to build a good and useful life, and I have succeeded. I hope the reader will agree that the struggle to live successfully still matters.
In the pages that follow, I tell my story. My account is personal and, at times, close to the bone. However, I sincerely believe we share a common humanity, and the more true and personal my story is, the more it resonates with others. I am blind. Most of my readers will not be; yet my challenges are not so different from those faced by others. I have worked to cast off the misplaced culturally imposed limitations, as have many others. I have searched for those experiences and opportunities that have allowed me to build a positive self-identity. As many others, I have succeeded and failed, experienced joy and despair, and learned to affirm myself in a challenging and ever-changing world. I have struggled to find the courage to act and the wisdom to accept what I cannot change.
My blindness creates one of the conditions that shapes my life. It limits and challenges me. However, everyone has conditions that shape his or her life and must be accepted and accommodated. It is this common humanity that I address. If I tell my story truly and well, I believe every reader can find a link. This is my purpose in writing this book. As we tell our stories, the listener realizes that what might have at one time sounded foreign is, in fact, quite recognizable. The last half century has been a trying time in the history of our nation. We need to share our experiences of living and trying to understand our world. Many forces pull us apart, but there is much that holds us together. If we talk about our lives, I believe we can define a common bond.
Over the years I have spoken many times to groups about blindness. My listeners often ask, "What is it like to be blind?" This is a complex question to answer. There are attempts to simulate the experience. Individuals will wear blindfolds. Restaurants will serve food in total darkness. Children will close their eyes, but the total experience is more than not seeing. Blindness encompasses age-old stereotypes, social expectations concerning the capacity of blind persons, and some genuine physical limitations. It requires accommodations to the technology of the age, and above all, it challenges the blind person to carve out a life and a personal identity that one can affirm for a lifetime. This is my attempt to share with the reader the complex reality that is blindness and the way in which I have responded to it. In the end, I believe the reader will discover my experiences and strategies are not so different from his or her own.
The story that I tell in this book is largely one of a happy life. I am blind, and I have been blind since birth. I have engaged in my world and the events that have made its history in my time. I grew up in a strong family, received an excellent education, had a successful and challenging career, and achieved a satisfying personal life. Life is good for me, but as in the lives of all people, I have faced my own challenges. It is in the context of living in the world as a blind person that my story unfolds, and it is as a blind person that I have claimed my place.
Throughout my life I have often been told, "You can't." My answer has been, "Yes, I can." I and many other blind and disabled persons have faced the doubt and skepticism of others as we have tried to make our way in the world. Often the negativity of others is inspired by the best of intentions. They fear for our safety, seek to protect us from the disappointment associated with what they believe to be certain failure, or simply are concerned that our efforts are absurd. I have learned and accepted my limitations, but no one has the right to set those boundaries for me. Only I can define my limits. The challenge of every person with a disability is to be strong enough to reject the condescension and destructive negativity of others, while remaining open to their genuine goodwill. This is not always easy to do, but it is not pleasant or productive to live in a constant state of anger. I have steered as best I can through the rocks presented by this challenge. I hope my story can be helpful as others try to travel the same course.
It's My World Too is the title of this book, and it is also the title of a planned series. I have chosen this title because it states a claim. Often persons with disabilities are forced to sit on the sidelines of life, while others get into the game. My title proclaims that I refuse to be a spectator while others play. I am claiming the world for myself. It is my world too. This book is my story of how I have gone about making good that claim. I will tell the stories of others in subsequent publications. I believe these stories provide important testimony to the strength of the human desire to be a part of the inclusive human community, and they provide proof that our social order has come a long way toward fulfilling the promise that was first made in the Declaration of Independence. Each of us has the right to equality, liberty, and the pursuit of happiness. Our stories tell how we have taken possession of that fundamental right.
Declaring a right and making the claim stick are two very different things. If one is a person with a disability, one must deal openly and honestly with his or her disability and find ways to transcend its inherent limitations. One must master the emotional and attitudinal barriers that accompany the stereotypes constructed over time immemorial, and one must learn the...