When one speaks of the person, one refers both to the irreducible identity and interiority that constitutes the particular individual being, and to the fundamental relationship to other persons that is the basis for human community.
—International Theological Commission, Communion and Stewardship: Human Persons Created in the Image of God
Our family of eleven children grew up in a one-bathroom, three-bedroom row house in Philadelphia. In very large families, there are subgroups and I, the youngest, was within a group called "the babies.” I shared this group with two of my brothers: Walter and David. Walter, ten years my senior, became ill as a toddler and, after being placed in a malfunctioning oxygen tent, developed significant intellectual and physical disabilities. My brother David, only two years my senior, was born with significant intellectual and physical disabilities. While “babies” signified a phase—staying at home while the big kids went to school—our relation to each other in that phase was cemented in the years to come.
On the first day of school, our mother transported my brothers Walter and David in a little red wagon while I skipped alongside holding her shirt tail. At the school our mother carried Walter up two flights of stairs, descended, carried David up, descended, and finally as she carried the wagon up, I marched up the steps with her. No longer “babies” by name, we were finally in school! I was four, David was six, and Walter was fourteen. Though it had no meaning to me at the time, our school was a ground-breaking summer pilot program established by our mother for children of various ages with “multiple disabilities.” Despite great variance in age and abilities, through each other we all learned more than anyone expected. According to the experts (at the time) children with significant disabilities were uneducable. The pilot program was hailed as a radical success and when asked, “To what do you attribute such success?” my mother would simply say, “A little child would lead them.”
The mothers of these disabled children learned to ignore the experts and trust their instincts. Despite predictions that David would never walk, every day our mother stood David up and walked with him, saying as she did so, “Stand and walk, David.” At first she knelt on the floor and held him up, allowing him to get used to having his feet under him. He walked on her feet and she strode with him. He held her outstretched hands and she lead him. Little by little my mother moved herself further away to the point that she used a string held taut and he would walk by inches. There were years upon years of “Stand up and walk, David” and the subsequent process of holding on yet letting go. There was one specific moment when I became conscious of the futility of this ritual and I thought, “Are. You. Kidding. Me?” In that precise instant, David stood up and walked across the room to our mother. He was ten. I was eight. I became witness to the interior mystery of David (and Walter).
Successively we continued attending the same schools together until it was time for each of us to graduate. Walter graduated at 21, David at 25, and I at 17.
So too, in death, it was asked: “What, after all, was the value of his life?” I have no words to describe our anguish having to assert the inherent and unlimited value and dignity of a human life, all human lives, this human life, this one so deeply loved, Walter. Walter’s life was a gift of inestimable value.
After graduating, Walter left home for “placement” in a “modern” institution. At twenty-nine, in another ground-breaking event, Walter became the first individual with significant disabilities to move into a “home” in the community. Tragically, there in his “home,” Walter asphyxiated on a peanut butter and jelly sandwich. He was only thirty-three when he died. While he lived, many tried to measure his life in anticipated limitations, “He’ll never…walk, go to school, live in his own home…” So too, in death, it was asked: “What, after all, was the value of his life?” I have no words to describe our anguish having to assert the inherent and unlimited value and dignity of a human life, all human lives, this human life, this one so deeply loved, Walter. Walter’s life was a gift of inestimable value.
Despite the tragedy, and in some way because of it, our parents had hope for David. David moved to the community at twenty-nine and our parents developed employment opportunities for him. They worked through numerous transition details including, ultimately, the transition of the role of advocacy. At thirty, I was established as David’s primary advocate. As hard as it was for them to relinquish their advocacy, their love, like that taut little string, was a measured letting go, preparing for the time when they would no longer be with us.
It has been twenty years since I inherited the advocacy role. Year after year I continue to learn from David. He possesses wisdom that I am slow to learn.
For example, I made a perfect plan so that David could enjoy some local gardens and holiday decorations. With coats and hats, we left the house and started walking to the car. David decided to walk at one inch per minute. Halfway to the car David stopped and stood immobile for ten minutes more. After arriving at the gardens, I shut off the radio and David responded with yells of discontent. We progressed by inches. I pushed. David stopped. After an hour and a half, exhausted, frustrated and near tears, I dropped on a bench next to a big holiday display. David sat next to me and started laughing.
David’s laughter made me reconsider the evening: David went outside and the cool winter air carried the smell of wood-burning fireplaces. It was good. It got cold and we got in the warm car where we turned on the radio and listened to oldies music. It was good. At the garden hundreds of well-wishers said, “Hello” and “Have a great evening!” to David. It was good. My planning and pushing was devoid of pleasure. When we finally sat together, David laughed heartily—a display of pure joy. There we remained with heads together and rosy cheeks, enjoying the night, enjoying the community. We sat on that one bench until David got up to go. It was so very good—once I learned to experience the evening from David’s point of view.
From the moment of my birth my identity was developed in relation to my family and within the group of “babies.” Though separate and distinct we were also one. Though my brothers were labeled with disabilities, I know that I am the one who is impoverished, who lacks.
My brother David understands things that I can only hope to grasp. He has an inherent sense of time, an inborn joy, and more than anything he possesses the same superabundant love as my mother. To sit with my brother David is to be moved by the power of his love. Despite my impatience and arrogance, my sins and shortcomings, he loves me. David’s love is purely generous. And, through my relation to him, I’m the one who continues to grow.
“It is most often to others that we owe our survival, let alone our flourishing ... the virtues that we need …[are] … the distinctive virtues of dependent rational animals.”
—Alasdair Macintyre, Dependent Rational Animals
Kathryn Fialkowski is a Sibling and Disability Professional and a former Joseph P. Kennedy Jr. Public Policy Fellow.
Posted December 4, 2014.