Facing our fears
While I try to sell my finished novel* to a publisher, I am researching my next book about locking up those judged to be outside the norms of society. Asylums built in the US and Europe during the 1800s and early 1900s now stand empty and crumbling or are repurposed. Martha Wakefield, a photographer in Massachusetts, explored the topic—Unearthing an Insane Past—in a show at the Rhode Island Center for Photographic Arts, where Reed volunteers. She writes:
This series explores the tragedy of a bygone era, the incarceration of men, woman and children who were deemed outside the norms of the times by society as well as impact on the staff who worked there. Having grown up in a family of medical professionals, I witnessed the challenges of tending to the sick and dying. This project is my way to unearth and share some of these stories as a tribute to both the inmates and the medical staff. My hope is to open a conversation about the good, and bad of the past before it is buried in an unmarked grave.
My intention is much the same. As a child in the early 1960s, I remember picking up Miss Dorothy, my dad’s cousin, at the State Mental Hospital for Sunday dinner. Her hair was tightly curled in a strawberry-blonde pageboy, and she usually wore a navy blue, polka dot dress. Pleasant but quiet, she rarely smiled and didn’t initiate conversation. She was likely a schizophrenic treated with Thorazine, none of which I knew at the time.
When my brother Peter was born in 1960, the pediatrician diagnosed him with Down Syndrome and told my parents that institutionalization would be the best choice for the family. After prayer and discussion, my parents decided to see how he did at home, but visited the institution in Jefferson, Wisconsin, run by nuns, where Rosemary Kennedy, the sister of President Kennedy, was living. After a lobotomy failed to cure what was likely caused by hypoxia during her birth—mood swings, seizures and a learning disability—she lived out her life at St. Colletta School. The nun who led the tour encouraged my parents to keep Peter at home, to love him, to pray, and to trust their own wisdom.
As people of faith, they did just that, trusting God to guide them and when child number five was born two years after Peter, they welcomed Frances, their second Down syndrome child into the family.
Later, Dad shared a journal entry with me: “Fathering a “mentally retarded” child was my greatest fear.” He faced that fear and committed his life outside dentistry and family to improving the lives of those with special needs. He hired an ex-institutionalized couple to clean his office. Along with my mother, he worked with the other parents of special needs children to change the name of the school for the retarded where they sent Peter from Happy Times to Four Oaks. Peter died at age six, and they decided to send Fran to Montessori because they believed she could learn to read and write. Over the years they started group homes for special needs adults for independent living opportunities when parents were too old or needed other options.
During my lifetime, institutionalization fell out of favor and special needs children remained at home and were mainstreamed in school. Young adults graduate from high school and we see them working in grocery stores and fast-food franchises. Recognizing the need for other employment, the parents of two Down Syndrome children opened Bitty and Beau’s, a coffee shop franchise that employs adults with intellectual and developmental disabilities. A store opened recently in Providence, just down the block from the RI Center for Photographic Arts.
With the development of better anti-psychotics, the differently-abled and mentally challenged are rarely institutionalized. Nevertheless, services are woefully underfunded and inadequate to meet the needs of those who would have been deemed as abnormal and institutionalized during the first half of the twentieth century. Many are our homeless populations. Families are overwhelmed and communities are too often flooded and poorly equipped to handle the medical and mental health needs.
The story I want to tell is how we face our greatest fears. How did my parents trust themselves, trust their faith, and pioneer a radical path creating new opportunities for their differently-abled children and others in their community around Dayton Ohio.
Now fear about differences threatens our communities and our world. Social media thrives on fear and negativity, racking up likes and shares, which catalyzes an unwillingness to see what connects us as human beings.
Like my parents, may we each find a way to recognize our fear and identify our inner strengths to face what we dread. In that process and with community may we sow the seeds for a better world.
*The Legacy of Elizabeth B is the story of Elizabeth Blackwell, the first woman to graduate from medical school, alongside a gen Z medical student, and a retiring boomer: Three women, three centuries, one fight to claim a place in medicine—a field that was, and in many ways still is, a man’s world.