The Power of Speaking Up: How the Right Voices at the Right Time Changed Life for the Intellectually Disabled

American cultural anthropologist Margaret Mead once wrote, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.” In the 1950s, a small group of “thoughtful, committed” parents and other activists changed the fates of thousands of Americans with intellectual disabilities. Prior to their efforts, many Americans, including many doctors, believed that the “feeble-minded” should be hidden away in institutions, sterilized, or even euthanized as children. The Eugenics movement, which claimed that its purpose was to protect the quality of the human gene pool, reinforced this way of thinking. And eugenics itself was fueled in part by the ideas of Social Darwinsim that had become popular in the mid 1800s. By 1930, more than twenty states had forced sterilization laws in place, and 45% of the U.S. actually “favored euthanasia for defective infants.” (Adams, Appendix 14C)

Public opinion regarding intellectual disability shifted significantly in the years after WWII as more Americans learned of the atrocities committed in Nazi Germany in the name of protecting the human gene pool. At the same time, two famous mothers of disabled children, Pearl S. Buck and Dale Evans Rogers, decided to share their personal stories with the America public. Their words inspired a national rights movement: Parents around the country began to advocate successfully for their intellectually disabled children, insisting on educational and employment opportunities that would allow their children to lead productive, fulfilling lives.

In 1950, Pearl S. Buck wrote an essay entitled “The Child Who Never Grew” for a popular national magazine. The piece recounted the previously unknown story of Buck’s 29-year-old daughter, Carol, who suffered from what medical professionals at the time called severe mental retardation. Buck’s daughter did not display any signs of mental or physical challenges until after her third birthday, when it became obvious that her development was not on track. After nine years of caring for Carol at home with the help of a nurse, Buck realized that her daughter would never be able to care for herself. She worried about who would care for Carol after she herself died. Buck eventually made the difficult decision to put her daughter in an institution. As she later wrote, “We have to think beyond our own lives for them [and it] became apparent, too . . . that my little daughter should find her own companions.” (Buck, 364)

After extensive research, Buck chose the Vineland Training School in New Jersey because of its caring environment and the happy faces of its residents during her initial visits. The school’s progressive attitudes and cutting-edge research convinced Buck that Carol would be in good hands. Carol’s father refused to pay for his daughter’s stay at the private institution, though. Pearl Buck, who had worked as a professor at Nanking University in China and published short stories and essays in various U.S. magazines, used proceeds from her writing to fund Carol’s ongoing care and education. According to one of her biographers, “Whatever other motives compelled Buck to sit down at her typewriter every time she could reserve ten minutes or a quarter-hour from household chores, her fears about Carol [not being properly cared for] were the most urgent.” (Conn, 102) Her method paid off well: it was during this time that Buck wrote her most famous novel, The Good Earth (1931), which grossed over $1 million dollars and won the Pulitizer Prize. In 1938, Buck became the first American woman to win the Nobel Prize for literature.

Although Pearl S. Buck wrote dozens of novels, essays, and speeches exploring themes related to family dynamics—including the challenges of managing mental disabilities, she shared little of her private life with the public, and few people knew about her struggles as a mother trying to accept an “imperfect” child. The publication of “The Child Who Never Grew” changed all that, and its popularity encouraged Buck to publish an extended version of the essay in book form later that same year. After years of anxiety, worry, and stigma, Buck decided that she wanted Carol’s story to be of use to her own generation and for Carol’s life to count for something more than what most people told her it did. (Buck, 25-27) The Child Who Never Grew became an instant success. Buck donated the proceeds from its first edition to the Vineland Training School to build dormitories and recreational facilities.

The book’s success also propelled Buck into the spotlight, identifying her as an advocate for the welfare of mentally retarded children. She inspired many more parents to share their stories, to bring their children out of hiding, and to campaign for their rights. In an interview with National Public Radio, James Trent, author of Inventing the Feeble Mind, said about Buck’s influence, "Mental retardation had been associated with the lower classes for most of the century and for someone well-educated, upper middle class to come out and say, 'I have a retarded child' was unusual." (NPR)

In the 1960s, Buck learned that Carol’s severe mental disabilities were caused by PKU, an inherited condition that prevents the body from metabolizing the amino acid phenylalanine. Buck had provided financial support for research into the causes of mental disabilities, including the research that led to the start of national PKU testing of newborns that is required today. Her foundation, Pearl S. Buck International, established in 1964, continues her legacy of education, cultural understanding, and humanitarian aid. In 1965, Buck published The Gifts They Bring: Our Debt to the Mentally Retarded, a nonfiction book about PKU which she wrote with Gweneth Zarfoss. Two years later, she published The Time is Noon, a heart-breaking novel about a mother whose son is born with PKU.

Carol Buck lived at Vineland Training School until she died in 1992 of lung cancer, nineteen years after her mother died. Throughout her life, Pearl S. Buck campaigned tirelessly for the rights of children around the world and for the welfare of the mentally retarded. Her most important contribution to the lives of the intellectually disabled in America, though, was likely the millions of words she penned drawing attention to the challenges and joys experienced by the intellectually disabled, their parents, and their families.

Buck was not the only parent of the 1950s whose story inspired the movement to help the intellectually disabled. In 1953, Dale Evans Rogers, one of America’s most famous and beloved stage and screen entertainers, published Angel Unaware: A Touching Story of Love and Loss, a memoir about her daughter, Robin, who had been born with Down Syndrome (or Mongolism, as it was known at the time) and then had died shortly before her second birthday. Angel Unaware is a short, heartfelt tale narrating Robin’s arrival in Heaven, when she tells God all about her experiences “Down There.”

Despite numerous medical complications and against the advice of well-meaning doctors and friends, the Rogers decided to care for baby Robin at home rather than institutionalize her. At that time, the prevailing feeling towards Mongoloid children and others with intellectual disabilities was harsh. As Robin tells God, “Mommy heard once that some doctor had said that babies who came into the world in my condition should be lined up in a row and ‘machine-gunned,’ because they were no good to themselves or to anybody else.” (Rogers 52) The Rogers family already lived their lives in the public eye, and they chose not to hide baby Robin and her health issues from their fans and detractors.

Rogers and her husband Roy, dubbed the “Queen of the West” and the “King of the Cowboys,” made more than thirty movies together and starred in the widely popular television series, The Roy Rogers Show. Rogers wrote dozens of songs and more than twenty books throughout her lifetime, including the best-selling American standard “Happy Trails to You,” the well-known gospel song “The Bible Tells Me So,” and her inspirational memoir, Woman at the Well.  For millions of Americans, though, Angel Unaware is one of Roger’s most significant contributions. By telling Robin’s story, she sent a simple yet powerful message:  all children, regardless of health or ability, are God’s children and therefore cherished members of the human family. As she writes in the book’s foreword, “I believe with all my heart that God sent her [Robin] on a two-year mission to our household, to strengthen us spiritually and to draw us closer together in the knowledge and love and fellowship of God.”

After Robin’s death from mumps in 1952, the Rogers family’s commitment to helping children with disabilities increased. They fostered or adopted several other children with special needs and visited hundreds of children in hospitals and orphanages around the country. In Angel Unaware, Rogers writes that her husband became deeply committed to enriching the lives of sick children; in Robin’s words, “[Daddy] was more and more interested in sick children, and he tried to get to see every sick boy or girl who called for him. They loved him.” (Rogers 37) The couple supported dozens of children’s organizations and charities throughout the country, including The Happy Trails Children’s Foundation, an organization that still provides assistance to abused and neglected children.

At a time when most parents hid children with disabilities inside their homes or in institutions, Rogers dared to share her story of personal tragedy and triumph. The powerful words she shared in her book, songs, and personal appearances left a lasting impression on Americans in the 1950s. According to the Encyclopedia of Disability, "[T]he book's ultimate message—that Robin Roger's short life was worthwhile and her presence in the home a joy to her parents—countered medical advice and even other parents' more tragic constructions of disability." (Albrecht 1205) Angel Unaware sold millions of copies around the world and has never been out of print. Rogers donated the entire proceeds from her book to the National Association for Retarded Citizens (NARC), an organization created by a group of Minneapolis parents in 1950. NARC set up its first office with the proceeds and became a driving force in the growing national movement of parents seeking education, work opportunities, and a better life for their children.

In 1953, another group of parents founded the Oklahoma County Council for Mentally Retarded Children, one of many such organizations created during this time. The Council immediately began work on the Dale Rogers Training Center, a school for children with disabilities in Oklahoma City that later became a vocational training center. In 2013, The Dale Rogers Training Center opened a small museum consisting of photographs and memorabilia celebrating the life of Robin Rogers and the Rogers family’s contribution to the movement. Michael Jones, Marketing and PR Manager for the Dale Rogers Training Center describes the museum’s mission: "I think [the exhibit is] a constant reminder, too, that even though Robin didn't have an opportunity to live a long life, everyday we do have folks here that are living and being productive with Down syndrome and other disabilities." (NewsOK) As movie stars, singers, and entertainers, the Rogers family touched the lives of millions of Americans. However, for a generation of parents with children who had mental or physical challenges like Down syndrome, Roger’s tale of love and faith in her memoir Angel Unaware was far more influential; it inspired them to be proud of their children, no matter their challenges, and to find hope in their strengths.

Inspired by the powerful stories of brave parents like Pearl S. Buck and Dale Evans Rogers, the national parent movement to ensure the rights of the intellectually disabled gathered momentum throughout the 1950s. The movement spurred changes in public mental health services and opportunities at the local, state, and national level over the next few decades. The intellectually disabled saw increased opportunities for education and vocational training, and their quality of life improved with a decrease in institutionalization. Fueled by the successes of the Civil Rights and Women’s Rights Movements, the momentum continued in the 1970s when disabled Americans began to speak for themselves.

After years of setbacks and obstacles, the tireless efforts of thousands of Americans resulted in passage of  landmark federal legislation—the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990. During the decades since, the lives of Americans with intellectual disabilities have improved in many ways. While advocates recognize that America can offer far more support, understanding, and opportunity, the movement’s beginnings demonstrate the power of individual voices in enacting societal change. The significant shift in public opinion that began in the 1950s, with parents speaking out on behalf of their children, would not have been possible without the advocacy of two famous and “thoughtful, committed” American mothers who changed lives by speaking up and sharing their own and their children’s stories.

WORKS REFERENCED
Adams, Maurianne and Lee Anne Bell. Teaching for Diversity and Social Justice. 2nd edition. New York: Routledge, 2007.

Albrecht, Gary L. ed. Encyclopedia of Disability: A History in Primary Source Documents. California: SAGE Publications, Inc., 2005.

Buck, Pearl S. The Child Who Never Grew. Open Road Media, 2012. Kindle ebook file.

Conn, P.S. Pearl S. Buck: A Cultural Biography. Cambridge University Press, Cambridge, UK, 1996.

Rogers, Dale Evans. Angel Unaware. New Jersey: Fleming H. Revell Company, 1953.

Websites
History of PKU: Origins - Pearl S.Buck and Phenylketonuria
The World of PKU http://www.pkuworld.org/home/historyProfile.asp?s=2

Legacy of Roy Rogers and Dale Evans' daughter lives on at Robin's Corner Museum at Dale Rogers Training Center - by Brandy McDonnell October 6, 2014 - http://newsok.com/article/5349065

Happy Trails Foundation website http://www.happytrails.org/index.html

Inclusion Daily Express http://www.inclusiondaily.com/news/daleevans.htm