From the earliest times, many parents have given birth to and cared for children with disabilities to the best of their capacities. Nevertheless, since the larger social context shapes the experiences, beliefs, and values of parents of children with disabilities and because parents of disabled children have responded variously to their social environments, there have also been high rates of abandonment, neglect, abuse, and filicide of children with disabilities. Although societies have generally acknowledged and supported parental efforts to care for children with disabilities, this has not always been the case; particularly in times of strong eugenic sentiment, society has encouraged, and at times even required, parents of children with disabilities to abandon their sons or daughters or even to actively dispose of them.
Currently, parents and families of children with disabilities are extremely diverse and, in most respects, are not very different from other families. In Canada, the United States, and many other countries, there are significant community services and supports available to assist families. Because of the great diversity, it is difficult to make general statements about families of children with disabilities..
Aristotle (384-322 BC) advocated for the infanticide of deformed infants, and Spartans were known to throw infants with identifiable disabilities from Mount Teygetus on to the rocks below. Many other cultures also endorsed the elimination of weak or disabled infants. Across the globe, pagan changeling myths claimed that children with significant disabilities were not the true offspring of their parents but rather the children of fairies, leprechauns, or other mythological creatures that had taken the real infants while substituting their own babies. Parents were encouraged to drown or burn changelings to secure their own rightful children.
These myths were also incorporated into religious doctrine. Martin Luther, who claimed to have witnessed the drowning of a changeling baby, indicated that killing these disabled children was not sinful since they had no souls. During the inquisition, children with severe disabilities were thought to be the offspring of Satan, which should be destroyed. This often meant that the mothers were condemned along with the children because the birth of their child was viewed as evidence of an illicit tryst with the devil.
Nevertheless, finds such as a remarkably well-preserved 1.5 million-year-old skeleton of an adolescent boy with severe scoliosis (spinal deformity) discovered in Kenya or a skull belonging to a five to eight year old child who lived more than a half million years ago with craniosynostosis, a condition that restricts brain growth and often causes severe intellectual disabilities without surgical correction (Garcia et al., 2009), offer evidence suggesting that at least some parents in traditional, ancient, and even prehistoric societies have been caring for children with disabilities.
The Eugenic Era
The rise of an international eugenics movement in the late 19th-century contributed to further violence against children with disabilities and the shaming of families. Family degeneration studies blamed undesirable parental traits for the disabilities of the children. Parents were encouraged and sometimes bullied into surrendering their children with disabilities to institutions where systemic abuse and neglect often resulted in physical harm, sickness, and early death. Children with disabilities were considered to be burdens that destroyed marriages and ruined the lives of their siblings.
The Black Stork, a movie produced by Chicago physician Harry Haiselden in 1915, advocated letting babies die if they had apparent defects. Haiselden, who practiced what he preached by refusing to perform needed surgery on children born with severe defects, argued that this would help develop a more perfect race (see Pernick 1996). In Nazi Germany, parents were first encouraged and later required to give up disabled children to euthanasia centers. Prominent Canadian psychiatrist C.B. Farrar, editorializing in his role as editor of the American Journal of Psychiatry, argued that children with severe disabilities should be put to death when they reached age five. Farrar suggested that attachment of parents to their children with disabilities was a mental health problem and that it was the duty of all physicians to interfere with these parent-child bonds:
The extreme devotion and care bestowed upon the defective child, even with the sacrifice of advantages for its normal brothers and sisters is a matter of common observation. The position is understandable, but to the impersonal observer may appear to partake of the morbid. Disposal by euthanasia of their idiot offspring would perhaps unbearably magnify the parents sense of guilt. That is precisely the psychiatric problem this overlengthy discussion has been trying to get at, namely the “fondness” of the parents of an idiot and the “want” that he should be kept alive. (Farrar, 1942, p.143)
As a result of these attitudes many parents of children with disabilities were shamed and most were isolated. While many families did keep their disabled children at home and provided excellent care, they received little acknowledgement or support; many other parents institutionalized their children, in many instances due to social or institutional pressures, often pretending these children had died or never existed.
Following World War II, a growing interest in human rights and a widespread repudiation of horrors brought by eugenics as applied by the Nazi regime, allowed for changing attitudes about children with disabilities and their families. In 1950, Pearl S. Buck, Pulitzer and Nobel Prize winning novelist, publicly spoke and wrote about her daughter Carol, who had a developmental disability, after 30 years failing to acknowledge her existence. In 1953, Dale Evans Rogers published Angel Unaware, describing how his daughter Robin, who had Down syndrome, had enriched their family. The book, which had an original print run of only 25,000 copies, became a number one bestseller and continues to be widely read today after more than 60 re-printings. Many other accounts by family members followed, including President Kennedy’s sister Eunice Shriver’s 1962 publication in The Saturday Evening Post about their sister Rosemary who had an intellectual disability. These publications by prominent American family members played an important role in eliminating the stigma that had previously been attached to families and parents.
The postwar period was also marked by the growth of local parent-based organizations advocating for institutional reform, community-based services, and human rights for children and adults with developmental disabilities. These local organizations eventually became national organizations, such as the Arc of the United States and the Canadian Association for Community Living. By the mid-1960s, more children and adults with disabilities were beginning to be served in the community, often remaining in their own families, and residential institutions were beginning to shrink.
The 21st Century
Today, parents of children with disabilities are a socially and economically diverse group that face some particular challenges but also report beneficial effects of parenting children with disabilities
Most families are strong, and well functioning. Nevertheless, there appears to be a higher rate of maltreatment, including emotional, physical, and sexual abuse and neglect, among families of children with disabilities. Children with disabilities are somewhat more likely than other children to grow up in the care of grandparents, foster parents, or other non-biological parents. On average, families of children with disabilities also have lower incomes, in part because caregiving requirements conflict with employment options and due to the lack of adequate caregiving options available to parents of children with disabilities.
Much has been written about stress among parents of children with disabilities. While there certainly can be some stress resulting from the challenges of increased caregiving demands and worry about the child’s welfare and future, partially due to negative attitudes toward disability as well as the overwhelmingly poor social opportunities and support offered to people with disabilities, most families of children with disabilities have stress levels in the normal range. In addition, parents of children with disabilities who do report high stress levels most frequently attribute their stress to the same stressors (e.g., financial problems, marital discord, work issues) as other parents, rather than to their role as parents of children with disabilities.
Parents and families of children with significant disabilities need to undergo an adjustment to meet the increased challenges of parenting, which are partially rooted in social attitudes toward people with disabilities. This process may utilize homeostatic coping (not allowing the challenges of parenting a child with a disability to change pre-existing attitudes or behavior patterns) or transformation (making substantial changes in attitudes and behavior in response to these challenges). Typically, homeostatic coping can work when the demands and challenges are relatively modest but often proves inadequate in the face of more severe challenges. Many parents of children with disabilities report that as a result of the transformational process, having a child with a disability actually results in an improved quality of life.
- Dick Sobsey
Buck, P.S. (1950). The child who never grew. New York. The John Day Company.
Corbin, J. E. (1987). Child abuse and neglect: The cultural context. In R.E. Helfer & R.S. Kempe (Eds.), The battered child (pp. 23-41). Chicago. The University of Chicago Press.
Farrar, C.B. (1942). Euthanasia. American Journal of Psychiatry, 99, 141-143.
Gracia, A., Arsuaga,J.L., Martíneza, I., Lorenzod, C., Carreteroe, J.M., Bermúdez de Castrof, J.M., & Carbonelld, C. (2009), Craniosynostosis in the Middle Pleistocene human Cranium 14 from the Sima de los Huesos, Atapuerca, Spain. Proceedings of the National Academy of Science, 106, 6573–6578, doi: 10.1073/pnas.0900965106
Leakey, R. Meet of compassionate ancestors. National Geographic Video. Retrieved 22 November 2014 from from http://video.nationalgeographic.com/video/turkana-meet-compassionate-ancestors
Shriver, E. K. (1962, September 22). Hope for retarded children. Saturday Evening Post, 71–75.
Sobsey, D. (2001). Dale Evans and the Great Rescue: A Parent's View. Mental Retardation, 39, 401-404
Pernick, M. S. (1996). The Black Stork: Eugenics and the death of “defective” babies in American medicine and motion pictures since 1915. Oxford University Press.