MENU

DOWN SYNDROME, THEN AND NOW

1965, the year before the play Fall begins, could have been a transformative year for the treatment of people with Down syndrome. In that year, the World Health Organization recommended formally adopting the term Down syndrome and discarding the shameful and stigmatizing name of “mongolism.” Senator Robert F. Kennedy spoke out about the brutal and dehumanizing practices of psychiatric institutions, particularly at Willowbrook State School on Staten Island. In Washington DC, Vicky Solomonson, a child with Down syndrome, visited her grandfather Hubert Humphrey at the White House; frequently photographed together, Humphrey and Solomonson were a powerful public symbol for the rich lives that children with intellectual disabilities could enjoy when raised in community settings.

Yet, in 1966, the advice given to most new parents of a child with Down syndrome was scarcely different than the advice given to families the year before: institutionalize the child. The sluggish national progress on adopting a better, more humane set of principles and practices for individuals with Down syndrome is a cultural failure that has been seldom examined and little understood.

In part, the failure was driven by a medical field that centered on doctors over patients. In 1963, the US Department of Health published a study on the reaction of families to their child’s diagnosis. Many of the 100 parents interviewed for the study report never being given any medical information. Parents describe being told by doctors that their child was “better dead,” or even not being told for years because a doctor was either too frightened or too aggrieved by the diagnosis to share it. By the end of the 1960s, groups of concerned parents began banding together worldwide to share information amongst themselves, leading to the founding of critical advocacy groups such as the National Down Syndrome Society and later a self-advocacy group, People First, that began in Sweden before spreading to 43 countries.

In the absence of quality medical information from physicians, fear guided most decisions made by parents. Renowned psychologist Erik Erickson, creator of the psychosocial theory of human development, institutionalized his child at birth for fear that a child with intellectual disabilities would compromise his own reputation. Erickson and his wife Joan lied to their other children that the child named Neil had died, and though his wife visited, Erik rarely did, even though Neil Erickson lived to the age of 20.

As the Global Down Syndrome Foundation writes, “In the United States, until the 1980s and in some cases as late as the 1990s, the way in which people with Down syndrome and other intellectual disabilities were treated represents a shameful chapter of inhumanity and discrimination in our country.” Due to the poor care that most individuals with Down syndrome received, the life expectancy of those born in 1940 was nine years; in 1980, 28 years; today the average life expectancy has risen to 60 years, and many people with Down syndrome live into their 80s. The perils of institutionalization with poor oversight and overcrowding was shortening thelives of those with Down syndrome, not the syndrome itself.

Today, the emphasis in research has shifted towards giving individuals with Down syndrome dignity and self determination in medical decisions. In 2011, a group of researchers for the National Institute of Health published the first widespread survey of individuals with Down syndrome on their self perception and their recommendations to new parents whose children have been diagnosed with the condition. Excerpts from their suggestions include, “Love them, and they will love you,” “I am very happy in my life,” and “everything is going to be okay,” in addition to parenting tips and specific health advice about a range of respiratory and cardiac conditions that individualswith Down syndrome are prone to experiencing. The cultural and medical landscape that a child with Down syndrome is born into today would be unrecognizable to people living in the 1960s. Children and adults with Down syndrome appear in advertisements and television programs; they write books and appear publicly as advocates for their community.

— CHARLES HAUGLAND

 

Joanne Kelly, Nolan James Tierce, and Josh Stamberg in FALL; photo: Nile Hawver/Nile Scott Shots


© 2020 Huntington Theatre Company. All rights reserved | Trouble viewing this site? Please download Mozilla Firefox or Google Chrome.