REASONS WHY PARENTS ORGANIZED
Woodhull Hay, of the National Association for Retarded Children, cited seven reasons why parents united to form groups:
- Evidence that institutions were limited in what they could do for children;
- Increased awareness that regular public school programs were unsuited for such children
- The need to disseminate knowledge and information concerning mental retardation;
- The need to challenge the validity of the finality in the words, "Nothing can be done for your child;"
- The desire of parents to learn what more could be done for these children and to pursue projects on their behalf;
- The need to strengthen the growing conviction that the responsibility is social, i.e., money should be provided for building a fuller life for the mentally handicapped; and
- The realization that it was not enough spiritually just to care for one's own child.
CONCERN OVER PROFESSIONAL NEGLECT
In addition to obtaining services for their children, parents were concerned with professional neglect, rejection, and mishandling. According to the professional literature of the 1940s and 1950s, parents of children with disabilities "often felt inadequate; blamed themselves for their child's condition; are defensive, confused, and angry; and tend to be either overly protective and overly indulgent, or overly strict with their child."
Phil Roos, a parent and professional, recorded his early experiences with professionals:
"I had suddenly been demoted from the role of a professional to that of the parent as patient; the assumption by some professionals that parents of a retarded child are emotionally maladjusted and are prime candidates for counseling, psychotherapy, or tranquilizers.
My attempts to point out the many indications of developmental delays and neurological disturbances were categorically dismissed as manifestations of my emotional problems. I was witnessing another captivating professional reaction: the 'deaf ear syndrome'; the attitude on the part of some professionals that parents are complete ignoramuses so that any conclusion they reach regarding their own child is categorically ignored.
Later I found that suggestions I would make regarding my own child would be totally dismissed by some professionals, while the same suggestions made by a professional about other children would be cherished by my colleagues as professional pearls of wisdom."
All too often, the advice from professionals was confusing: "Send your child to an institution." "Keep her at home." "Wait, he'll grow out of it." In addition, most professionals had little more than advice to offer. They determined which services were available to families, and programs and services in the community were rare. Parents, seeing the failures of public institutions and community services, now began to assume control of services for their sons and daughters.