When I was three years old I greeted my first sibling: Douglas Allen Tucker. He was chubby and cute like a lot of babies, and I had fun playing with him. He made musical grunting noises when he was happy. Sometimes I got to feed him to give my mother a break. He loved to eat and be fed.
When I was four or five my parents began to worry about his development. He seemed unresponsive to stimuli, except for food. He wasn’t walking. He couldn’t handle a spoon. My parents visited several doctors my fifth year, an expense that kept us behind financially for a long time.
We eventually got the diagnosis of cerebral palsy. My brother would probably never develop beyond his one-year-old alertness. He would eventually walk, but with an unsteady gait typical of cerebral palsy. He would never speak beyond his singing/ grunting noises. He grew longer and skinnier. He looked like a starving war victim, but he ate well. Despite a lot of practice, he could never feed himself.
This was an endless trauma for my mother. When he couldn’t handle a spoon, it was the breaking point. She would often leave the room sobbing, and my father would say “Oh, dear,” and follow her into the bedroom. They would shut the door to protect me from my mother’s grief.
I found the trauma confusing, because Doug was the same kid he always had been. I would talk to him, and he would grunt back to me. When he was happy his voice would ascend an octave and would make an “Ee-ee-ee”. He made this noise when I chased him around the fireplace. We had a central fireplace that separated the kitchen and the living room. Doug’s main recreation was awkwardly walking around it. When I chased him, he would make his ee-ee-ee sound, raise his hands over his head and clasp them, one under the other, and we knew he was happy. Sometimes I still raise one arm over and around my head, when I am relaxing. I think I learned that from him. He was fun for me, too. Doug was just a baby brother, in my mind. It was my mother’s weeping that upset me.
My mother had difficulty caring for Doug, because he wore a diaper for his whole life and had to be changed often. He also “failed to prosper,” and that seemed tragic and inconsistent with a loving God. We went from one healing minister to another, asking for prayer and hoping for a miracle. When nothing changed, that seemed more cruel and heedless of a loving God. My mother never lost her faith, but she never stopped saying, ” I don’t know why God allowed this. He will never grow up to be a normal adult. I don’t know what his purpose is.”
My grandmother came to live with us for several years, stayed in Doug’s room, and generally mothered him every minute of the day and night. She could not comprehend how God would let this happen, but she was not bitter. Maybe a few words for the clumsy doctors.
She held Doug in her lap and sang to him, with a little bouncing on her knees:
Ride a cock-horse to Banbury Cross,
To see a fine lady upon a white horse;
Rings on her fingers and bells on her toes,
And she shall have music wherever she goes.
He seemed to like it; he was musical in his own way.
When I was ten, my mother became pregnant with my sister. They didn’t announce the pregnancy until she was well along. My mother had had two miscarriages before this successful pregnancy, and my parents were nervous about the baby’s development and birth, because of my brother. They had been given the theory that my brother’s condition resulted from the umbilical cord getting wrapped around his neck, depriving him of oxygen. My mother always suspected it was some malpractice of the physician that caused my brother’s disability.
Our family doctor advised us to place Doug in a facility for the developmentally disabled before my sister was born. I wasn’t privy to the discussion, but it was out of concern for my sister as well as my mother. It did not seem likely my mother could handle both children with equal care. So my brother was placed in the Willowbrook State School on Staten Island. It wasn’t a pleasant place, but my brother seemed unaware. We saw him in an open indoor recreation area each month. Occasionally he showed marks of being hit by other children.
We did not know how bad it was until Robert Kennedy, our U.S. Senator, investigated Willowbrook, forced its closure, and got the residents placed elsewhere. My brother had already come to stay at the Melville State School, much closer to us. An entry from Wikipedia summarized:
By 1965, Willowbrook housed over 6,000 intellectually disabled people despite having a maximum capacity of 4,000. Senator Robert F. Kennedy toured the institution in 1965 and proclaimed that individuals in the overcrowded facility were “living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo” and offered a series of recommendations for improving conditions.[8]