Families and Mental Retardation. Jan Blacher and Bruce Baker. Washington, DC: American Association on Mental Retardation, 2002.
“The past is our definition. We may strive, with good reason, to escape it, or to escape what is bad in it, but we will escape it only by adding something better to it” (Wendell Berry)
Blacher and Baker's Families and Mental Retardation did what I value most from a good book: It prompted thinking about major trends and themes. In this case the themes and trends are related to how our field has viewed families and their relationships with their children who have intellectual disabilities as well as the professionals who entered their lives. The basic structure of the book is straightforward and simple in conception, but appealingly complex if you take the time to reflect on the myriad meanings that can be drawn from the wide spectrum of articles included.
The book contains 32 articles published in journals of the American Association on Mental Retardation (AAMR) over roughly the past 100 years. The articles were chosen to reflect the development of our field's relationships with families of people who have intellectual disabilities. Articles were included if they were judged to represent significant contributions to the evolution of research and practice with families. As you may imagine, this was a difficult task. It is likely that anyone else may have chosen different articles to illustrate this development of family research and practice. However, the articles Blacher and Baker include present a wide range of thought and style well enough to accomplish a notable outcome: the synthesis of almost 100 years of developing relations among families, researchers, and clinicians.
The book is organized in five major sections: “Historical Views,” “Family Response to Disability,” “Adults With Mental Retardation,” “Family Interventions,” and “Looking Ahead.” Although the historical views section is rather short, each of the subsequent ones provide some picture of the development of thought for the topic covered in that section, with the one exception being the section on adults with mental retardation. This section contains articles from the last 20 years, with only one exception. Adults with mental retardation who are still living with their families have received little attention prior to the end of the last century.
A Perspective on Professional Development
Although it may not have been Blacher and Baker's primary objective, I believe their book provides us with a fine overview of how our profession has changed its views concerning families over the past 100 years. In another book I am reading, the theme is whether a person living at the beginning of the 20th century who was transported to the middle of the century or one living at the middle and transported to the end of the century would be more disoriented. That author claims that although the technological differences from the beginning to the middle of the century would doubtless be daunting, the social environment would still be familiar. However, although the person at the middle of the century would still recognize cars, skyscrapers, airplanes, and maybe even know what a computer is, they would be faced with puzzling differences in our social structures. Although I am not sure I completely agree with this conjecture, it made me wonder how different our views of families are now and what brought about the changes.
One of the first images of families emerging from AAMR journals was as primary causative agents of intellectual disabilities. Although not included in any of the articles, eugenics is mentioned in the introductory comments. Is it any wonder why and how families were viewed as being devastated by a diagnosis of mental retardation in one of their children when we, as a society, held the view that people with mental retardation, and by extension their families, were defective to the point that we were attempting, through eugenics, to rid ourselves of this “burden”? Blacher and Baker's selected articles in the first section illustrate how, although “family life is, under ordinary circumstances, the most ideal environment for individual welfare” (Doll, 1937), the alternative to institutional life was foster care, not remaining with the natural family. It would be many years before our thinking evolved into family support.
What brought about the changes in our views of families? Of course, the answer is complex, and it is the very recognition of complexity that contributed to the broadening of our conceptions of families. The contributions of early researchers, such as Skeels and Dye (1939), who demonstrated how general intellectual capacity could be amenable to environmental influences, made it more difficult to relegate people with intellectual disabilities to only custodial care. The long tradition of research challenging deeply held beliefs about the erroneous learning limits of people with intellectual disabilities was emerging. Accepting the results of this early research made us see greater potential in people and, therefore, made us also re-evaluate learning theories and develop teaching methods that would bring about greater success in skill acquisition.
How did a different view of the learning potential of people with intellectual disabilities affect our view of families? Blacher and Baker provide us with articles in their next section on family adjustment to disability that reveal, once again, an increasingly complex view of families. Initially, families were universally expected to be devastated by the diagnosis of intellectual disability. Early efforts at support focused on the need to address grief and feelings of guilt (Kanner, 1953). The article by Murray (1959) contains much of the sound advice currently offered to professionals as the best way to provide support to families:
The greatest single need of parents of mentally retarded children is constructive professional counseling at various stages in the child's life that will enable parents to find answers to their own individual problems to a reasonably satisfactory degree. (p. 53, italics added)
This section continues on to demonstrate how we moved from “a narrow focus on unidimensional variables and unimodal measurements” (Crnic, Friedrich, & Greenburg, 1983, p. 105) to a more ecological view of the interactions between children with intellectual disabilities and other members of their families as well as the larger social environment in which they both lived. Crnic et al. noted the contradictions found by clinicians to “anticipated pathology.” They noted the realization that many families do not demonstrate negative reactions to a child with intellectual disabilities. Getting closer to families allowed us to see that many made positive adaptations to their children with intellectual disabilities. Any comprehensive theory of families and children with disabilities would now have to account for this. This section also introduces the role of social support as a mediating influence on family adaptations, methodological issues in comparison group research, multicultural issues, and long-term adjustment of families who adopt children with intellectual disabilities.
The section on adults with mental retardation is concerned with more recent developments, in that this topic was never addressed to any notable extent in years prior to the end of the 20th century. However, the information presented is compelling and focuses our attention on topics that reveal, once again, a deeper appreciation for the intricacy of relationships within families. Although researchers had for some time been interested in understanding the burdens and stress a family may experience in supporting a member with intellectual disabilities (Seltzer & Krauss, 1989; Wickler, 1986), we also began to examine the possibility that family members with disabilities made positive contributions to the other members of their families (Heller, Miller, & Factor, 1997).
The section regarding people with intellectual disabilities as parents also contains mostly more recent articles. The primary issue being, of course, to what extent parents having intellectual disabilities negatively affects their children. Two articles are included in which the authors present information on providing support to parents with disabilities. In the more recent of those, Llewellyn (1995) presents a very thorough analysis of social supports through an in-depth participant–observer paradigm.
The penultimate section, spanning approximately the final 50 years of the 20th century, covers the topic family interventions and support. Some of the many efforts made to support families in raising their children with intellectual disabilities, reducing the stress of parenting, parent/professional relationships, and the emergence of cash subsidies to aide families are covered. However, the final two articles in this section (Birenbaum & Cohen, 1993; Braddock, 1999) show us a possible future about which we should be gravely concerned. People with intellectual disabilities grow older and, with only some exception, have continued to live within their biological or adoptive families. Our culture also continues to disapprove of many, if not all, of those people beginning families of their own. Very few, in comparison to the general population, live in committed relationships with another individual with or without disabilities. Coupled with the fact that our system has proved reluctant at best to fund family support, especially for families with older members with intellectual disabilities, the assumption is that we are creating a coming tragedy of catastrophic proportions. This is a chilling evolution of the relationship between families of people with intellectual disabilities and AAMR. However, it could also be the catalyst for a new relationship, one that is based on advocacy, mutual focus on efficient and effective supports, and a recognition of the contributions of families and the debt owed to them for many years of excellent care and support for their loved ones. It is our turn to take away some of that burden as a good and caring government should. All people with intellectual disabilities should live in a family; for some it is their biological family—and for a period of time beyond that normally expected—and for others it is a family of their own, be it in a committed relationship or sharing with other people who show concern and caring based on relationships, not economic return.
Although it may be obvious to some, I feel somewhat compelled to point out that the views represented in Blacher and Baker's book are those held and promulgated by professionals who have published in AAMR journals. They are not, with minor exceptions, the views that families hold of themselves. Nor do they necessarily represent the views of researchers and policy analysts who did not publish their work in AAMR journals. The researchers represented in the current volume ask families about what they already think is important. I do not point this out as a flaw in the book, just a statement of focus. This is the lens through which AAMR has viewed families for much of its history. It is instructive of how we, as professionals, altered our views, changed our research methods, refined our questions, and demonstrated a far greater propensity to appreciate the intricacy of the issues we are trying to better understand.