In the mid-1960s, I knew a couple that had a Down’s Syndrome child. They never took him home from the hospital.
There is no question that having a special needs child is challenging, but different families handle adversity in different ways. What’s Eating Gilbert Grape offers one example. Gilbert Grape lives n the small town of Endora together with his mentally challenged brother Arnie, his two sisters Amy and Ellen, and their obese mother Bonnie who weighs over 500 pounds. Depressed for many years since her husband’s death, she has not left her house for the past seven years. Gilbert is the surrogate father, taking care of Arnie who often gets into trouble when he climbs the town water tower and indirectly compels the fire department to try to coax him down to safety.
As the family prepares for Arnie’s eighteenth birthday party, Gilbert meets Becky, an attractive young woman, who gets stuck in Endora when her trailer breaks down. Becky and Gilbert become friends and they share their private thoughts and dreams with one another. What moves Gilbert to connect with Becky is her non-judgmental attitude towards others, specifically his brother and mother. She does not view them as freaks, but rather as people who are challenged by life experiences.
What’s Eating Gilbert Grape is a film that wanders. Watching the characters move from crisis to crisis is like observing life in real time, but cumulatively the scenes present a family that has figured out a way to deal with life’s disappointments and uncertainties. The members of the family love one another and support one another in spite of major emotional challenges. The family’s patience with Arnie and their abiding love for their mother is the glue that keeps them together and functioning despite obstacles.
Let me share some personal insights that came to mind as I watched the movie. My sister Carol was born with Down’s syndrome many years ago when mental retardation was referred to as mongoloidism, a strange and pejorative sounding term. Carol was six years older than me, but my sister Martha, only a year younger than Carol, probably could give a more realistic picture of what it was like to grow up with a developmentally disabled sibling who looked very different from the average child.
My mother and father got married late. She was in her late 30s and my father was in his 40s. In the late 1930s, Down’s syndrome wasn’t called Down’s syndrome; it was called mental retardation, and my sister Carol attended events for the mentally retarded. My mother and father felt terribly disappointed in not having a normal child. My father, in fact, occasionally would remind me not to tease Carol because she was “cursed.” This was a harsh term for my young ears, but I did stop my teasing. My parents were very sweet, sensitive people and devoted parents, but they were operating in a different social and therapeutic world than today’s parents of disabled children.
After her initial disappointment, my parents showered Carol with love and began thinking about what they could do for her. My mother committed many hours each and every day to doing the best for Carol. My mother made the rounds of many hospitals and doctors to see what could be done. Carol, my parents learned, could not improve much; but she could learn some things, so my mother tried her best to educate her. She registered her in the local public school in Mt. Vernon, New York, with my sister Martha; but after kindergarten, Carol was discharged. My mother then took her to a school in the Bronx, taking an elevated subway every day. It was an arduous trip, but my mother persevered.
Carol, like most children with Down’s syndrome, could not tell a lie. She had no concept of falsehood. One day she told her teacher that she lived in Mt. Vernon. The next thing my Mom knew was that Carol was being discharged as a non-resident of New York City. That incident was the catalyst for my mother to try to establish a school for retarded children in Westchester County closer to our home. I recall many meetings that my parents attended working on behalf of this landmark project. There was a major battle over zoning laws and with neighbors who did not want a school for retarded children in their neighborhood. But eventually my mother was successful and the school was established and grew over the years. Moreover, as time went on, my mother was one of the founders of a Retarded Children’s workshop in White Plains which was located about 45 minutes by bus from Mt. Vernon.
My father, who labored hard as a painting contractor, would rise early in the morning to bring Carol to the bus stop, wait with her until she boarded, and then return at the end of the day to pick her up. I had it easy since these daily taxing responsibilities were not mine. But watching my mother devote so much energy to this important cause for the sake of her child taught me a valuable lesson about perseverance. Once she got over her initial disappointment, she always made the best out of a situation and she never gave up.
As a younger brother, I did not have the same challenges as my sister Martha who was so close in age to Carol. Martha spent lots of time with her and was very close with Carol. When Martha entered high school, I sensed that it was difficult for her. Martha’s circle of friends changed. Her friends had little understanding of mental retardation, and Martha became very self-conscious of Carol’s uniqueness whenever her friends came by to visit. Martha always was a good sister to Carol, but it was difficult for her to explain Carol’s specialness to her friends in the 1950s when Down’s syndrome was much less understood than now.
As a little boy, I would fantasize about becoming a doctor and being able to transform Carol into a normal person; but as I grew older I understood that my hopes for Carol were only a dream. Over the years I tried to be a dutiful brother, especially after my parents passed away. When my own children were of age, I explained Carol’s situation to them and they were always warm and accepting of their aunt, who always had a sweet smile for them whenever she saw them. Having her close by prompted me to remind my kids of how fortunate they were to possess a normal intellect, with the potential to learn so much knowledge. Why things happen is ultimately unknowable, and we need to reflect that there but for the grace of God go I.
Perhaps this is one of the lessons we learn from people with disabilities of all types: to be appreciative, to be grateful, for our own normality. In fact, I told my children that when we see people with a visible abnormal appearance, we recite a blessing: “Blessed are You, God of the Universe, who makes creatures different.” It could be that the Sages who formulated this blessing wanted to convey the message that all humans, no matter what their intellect or appearance, are creations of God imbued with an essential sanctity.
Which brings me back to What’s Eating Gilbert Grape. Its implicit message is that every child is a precious gift from God. Everyone has infinite value. Everyone deserves respect, and all are a reflection of the divine.