All across the land, national, state, and local Arcs (formerly known as Associations for Retarded Citizens) are celebrating 50th anniversaries. These joyous ceremonies give us a rich chance to do some warm and creative reminiscing. For example, some 45 years ago, the superintendent of the institution where I worked called me in for a fatherly conference. With a stern voice, he warned me about getting “too cozy with that upstart little group of crazy parents in our town.” He viewed them as a wild-eyed minority, a tiny offshoot from the larger, more stable group of parents who gave birth to the sons and daughters with whom we worked. To him the sensible and sane parents were those who quietly sent their children with disabilities away to institutions like ours without causing a fuss.
I agonized over what my superintendent said for quite some time. Then, suddenly, I paid my dues and joined myself at the hip with these “crazy parents.” I have been a card-carrying member ever since.
What made these tiny groups so unpopular to most and so attractive only to a few? Almost with teeth gritted they dreamed about better lives for their children with disabilities. Doing so, they bucked a terrible tide—a tide loaded with ignorant silences, looks of furtive disgust, governmental orders, and doors that were constantly being slammed in their faces. It was tough going when most folks kept stomping on their dreams.
The stomping really began in earnest in 1927. That was the year Babe Ruth hit 60 home runs and Lindbergh flew nonstop to Paris. Unfortunately, that was also the year that Supreme Court Justice Oliver Wendell Holmes handed down a ruling that broke some moms' and dads' hearts. In Buck versus Bell (1927), he pointed an accusatory finger at the children of these struggling parents. He called them “imbeciles” and claimed them to be “a sap on the strength of the nation.”
His pounding gavel added an affirmative exclamation mark to the words of many leaders who sought to remove all “defectives” from the nation's national human stock. After all, this kind of “purifying” was being done to raise hybrid pea plants and horses. Why not do it to human beings?
One of the key developers of this social cleansing tide was Henry Herbert Goddard, the 1915 president of the American Association for the Study of the Feebleminded (known today as the American Association on Mental Retardation—AAMR). Three years earlier he produced The Kallikak Family, a study based on a Revolutionary soldier “of good English blood” who, in between battles, impregnated a “feebleminded” woman (Goddard, 1912). After the war, he returned to his own community and married a “woman equal to his own high standards.” Goddard, in a four-generation study, claimed that all the offspring in this Grade A lineage was impeccably pure—except for one drunken doctor.
When Goddard tracked the offspring of the “feebleminded girl,” he claimed that almost all of them were defective. In summarizing his findings, he stated that “there are [bad] Kallikak families all around us.” He claimed that they were reproducing themselves “at twice the rate of the general population.” He called for the testing of the human stock and colonizing all found to be “defective.” He hinted that euthanasia might be better, but he felt the country was not yet ready for such a solution.
Even so, Germany seemed to be getting ready. Karl Wilker produced a German translation of Goddard's book, Die Familie Kallikak in 1914. When Adolph Hitler came to power, a second edition was printed in 1933. Then, in 1934, a national magazine reprinted the complete text of the book.
Sadly, the tide of exclusion reached a national crescendo before J. David Smith, in Minds Made Feeble (1985), and Stephen Jay Gould, in The Mismeasure of Man, showed conclusively that Goddard's study was a fraudulent sham (Gould, 1981). By then, most of these children with disabilities whom the Arc parents cared about had been placed out of the sight and mind of the general public. They lived in faraway institutions or in the confining back rooms of their homes.
In 1950, however, an astounding thing happened all across the nation. These anguishing Arc parents suddenly began looking for one another. They advertised in newspapers. When they got together, they listened to each other's painful stories and became close. Then, out of that closeness, came the strength to speak out fearlessly against the tide that dehumanized their children. Some have been moving against it ever since, with all the grit and guts they could muster.
Have they been successful? Just think. If you were to say to an official in the mental retardation field in 1950 that in the year 2000, 50 years later, these children with disabilities would be:
walking or riding in wheelchairs all over our neighborhoods;
playing with other kids on the block;
going to their own neighborhood school;
sitting in regular classes;
working in industry;
riding in buses, trains, and airplanes;
enjoying meals in restaurants;
attending movies and concerts;
learning to be self-advocates;
attending community self-determination programs;
living in apartments and homes;
worshipping God in regular congregations;
visiting neighbors who are sick;
being highly valued and loved by others;
and making their own neighborhoods more zestful because they live there.
If you said all this, the mental retardation official would almost certainly pronounce you mad!
Today, a strong tree of respect and love for those we care about has sprung out of the soil of our nation. Like a giant oak, it has many branches that deliver health, guidance, support, and just plain good neighborliness to persons with these disabilities. Many of the branches may be so interested in the dynamics of their own strivings that they have forgotten about the roots of their efforts.
Even so, I remember those roots. They were started by those good parents of the 1950s. I remember many of them by name. I recall how they met for long hours around kitchen tables and in church basements. I remember how they fiercely loved their sons and daughters in spite of their neighbors' repulsion. I remember how these parents often loved one another better than most blood brothers and sisters do. I remember how grateful they were for sympathetic outsiders who dared to join their groups. These parents were among the finest people I have ever met in my life.
Author: Robert Perske, Fellow, AAMR; author; and advocate, 159 Hollow Tree Ridge Rd., Darien, CT 06840. Rperske@aol.com