2006 - Vol. 3, Issue 3

Mary and Mary. My mother and me. I have no idea what our relationship would have been like without disability. No one does.

I was my parents' first child and daughter. Although much prayed for by my mother, I was not "perfect." I was born with albinism and legal blindness, which caused my mother fear, confusion, and shame. She denied the scientific reality that she, along with my father, had contributed the recessive genes necessary to produce a child with albinism. I always felt she wanted me and my albinism to disappear.

I was a striking child — tall and overweight, with white blond hair, cornflower blue eyes, and translucent skin, not exactly a recipe for invisibility. A bright, inquisitive, and gregarious little girl, I quickly supplemented my lack of sight with other senses and abilities. This enabled me to get excellent grades, become a voracious reader, and dance, sing, and roller–skate.

My parents had two more children with albinism. The three of us were known as "the salts," while our brunette siblings were the "peppers." My mother's preference for her brunette children was obvious: Although finances were always strained, the "peppers" were all given bicycles. They were taught to swim and received orthodontia as needed. My mother always showed up for their sporting activities and school events. But I felt she wanted me and my albinism to disappear. She used me to listen to her suffering — how economically hard her life was, how uncaring my father was, how much work she had to do. This was my only connection to her. I learned to keep her anger at bay by becoming her confidant. I didn't point out how much housework and childcare I did to decrease her burden.

The limited availability of low–vision services added to the strain of having children who were different. At that time, large print textbooks and other tools for learning were in their infancy. Compounding the situation, my parents had been raised to believe that to have any needs or to ask for help was a sign of weakness. Whatever happened was God's will, and no discussion about our special needs was allowed.

Eight pregnancies, six children in eleven years, and a very unsatisfying marriage transformed my mother, a talented musician and seamstress, from the stylish, vivacious young woman who gazed jauntily from photos in the mid–1940s, into a raging, bitter person. She was verbally abusive to all her children. She was also physically abusive, especially to my brothers, who used to hide her favorite weapons, the wooden spoons.

When it was time for me to attend high school, my parents insisted I leave the safety of our neighborhood to attend a Catholic school for girls. For the first time, I felt like a moving target. People old and young, from all cultures and races, stared open–mouthed at me, sometimes yelling "Albino!" the way some people yelled "Nigger!" Frequently they whispered and laughed as I walked by. I was in my thirties before my mother told me that the doctor who delivered me had given her a dime, suggesting I call his two–year–old son when I turned sixteen, because I was "a beauty!" This bit of information would have meant so much to me as a teenager.

Although blindness is my legal disability, when I was a teenager, blindness was easier for me to cope with than my albinism. Transferring from the train to the bus to school one day, three Black girls surrounded me, demanding to know why I was the way I was: an "albino freak!" I was terrified. Feeling sick, my heart racing, I replied softly, "I guess God made me this way, just like He made you the way you are." After some menacing looks and mumbled epithets, they finally left me alone. I lived in constant fear of similar incidents. Now, in my fifties, I am still shocked when I encounter this kind of behavior.

In high school, because I couldn't see well enough from my seat, I had to go up to the blackboard. I dreaded those moments. Sometimes I pretended to see things I couldn't, to avoid drawing attention to myself. I spent these years feeling alone, angry, and depressed and was barely verbaI. Most of my free time was spent sleeping; I spent my babysitting money on candy. My parents didn't even seem to notice when my grades fell. The real heartbreak for me was not having my mother as an ally to talk to about my feelings and experiences.

When I researched albinism at the local library, the words "mutant" or "mutation" appeared often, increasing my sense of feeling "other." I never saw, heard, or read anything positive about anyone who looked like me. As a result, I developed a rich inner life fueled by books, music, and art. My anger, imagination, and commitment pushed me forward, and I became the first person in my working–class family to go to college instead of marrying young and having babies, as women were expected to do then. I was determined to live a more fulfilling life than my mother had.

I took out loans and began working towards a Liberal Arts degree. In a coed setting, I made friends and blossomed intellectually and emotionally.

During my sophomore year in college, my mother had a hysterectomy at the age of forty–six. Post–operative complications caused her to become a paraplegic. I felt her devastation. My mother, Mary, who loved to dance and who had just learned to drive, would now be in a wheelchair for the rest of her life. I yearned for our mutual support and hoped our similar life experiences would bring us together. But it didn't happen.

Just as my life was opening up, my mother's had become more restrictive. Feeling the loss of control over her life, she used her paralysis to try to keep me with her. One day in our kitchen, out of grief and despair, she beat her fists on the arms of her wheelchair, screaming, "I want to die!" My sisters were terrified, but I quietly let her know that her feelings were not scary to me and that she was helping herself by letting them out.

For a long time, I was deeply torn between empathizing with her needs and feeling a fierce desire to embrace my own life. I made my choice. After completing college, I got a full–time job and moved into my first apartment, overjoyed with my newfound privacy and freedom. Then I began therapy and enrolled in graduate school.

My "disability" has given me many gifts: It has fueled my desire for a better life for myself and others and forged my warrior spirit. It has given me the willingness to find my way through the struggles, the ability to triumph, and a sense of boundless joy. I am now a political activist, psychotherapist, and motivational speaker with a passion for social justice.

Two years before my mother died, she had a near–death experience caused by several strokes. This time, her response was to live her last years in love with herself and the world. Her creativity re–emerged, and she began to write.

I am very grateful to have shared that time with her. The most important things I learned from Mary are that the greatest limitation is a closed heart and mind and that it is never too late to embrace yourself and life fully.