The Future of Children With Significant Impairments— What Parents Fear and Want, and What They and Others May Be Able to Do About It. Wolf Wolfensberger. Syracuse, NY: Training Institute for Human Service Planning, Leadership and Change Agentry (Syracuse University), 2003.
In this monograph, Wolfensberger says little specifically about the likely futures of children with significant impairments, other than what we gain from a painfully perceptive description of a corrupt, inept, and wasteful human-service system against the background of civilization sliding into decadence. It makes reference to a selection of relevant research, newspaper clippings about the “Dreadful Things That Happen Nowadays,” and parables such as the “Girl Who Wouldn't Do What She Was Told So She Got Run Over.”
However, the author does discuss the fears (but not the hopes or accomplishments) of parents and the final half-page “Conclusion to the Monograph' is a response to those fears, contains great wisdom, and is well worth reading. It is not particularly new, but Wolfensberger summarizes in a handy way much of what parents experience over a long time. Many will have arrived at these same conclusions, though probably a good few will have chosen a different route.
Wolfensberger sets out to sensitize human service workers and others to the “choking worries” of many families (blessings too are mentioned, but briefly). He also warns these families to “seek appropriate measures betimes.” Who could not use such advice? It highlights vulnerability, dangerousness, poor quality of life (though he argues strongly against calling it that), and social degradation as the basic causes for families' reasonable concerns. Others might want to point to the effects of the additional demands on the family's resources (money, time, emotions, energy, space) involved in raising a child with disabilities; the continual uncertainty that goes hand-in-hand with poor information, incoherent service-systems, and professional interventions; and realistically low expectations of future assistance. However one arrives there, it is a picture in which some families understandably become stuck in dysfunctional responses from which they can find no way out. The list of “appropriate measures” parents and others could take is well summarized in about 10 pages of the text and in the conclusion and makes sound sense.
In Part 3 Wolfensberger addresses “commonly found” dysfunctional family patterns. The picture given of families is a depressing one: easily fooled by “mindless” service quick fixes and fads; lazy, prevaricating, poor parents by any standard; pleasure-seekers lacking ‘foresight’; a prey to every permissive child-rearing fashion. It is apparently quite easy to root out behavioral difficulties early on, providing you are just consistent, firm, and timely (avoiding of course any hint of obsessiveness), so why will people persist in expecting experts and government to do this for them? Why indeed.
This is not a view of families that is easy to warm to. Experience in the family leadership movement suggests that loving each and every family involved—wherever they are, however they got there—matters quite a lot. Otherwise, what is there to carry you beyond the frustration our joint and several weakness create? A kind of sturdy individualism (work together, see the bigger picture, be suspicious of service systems and organizations, support voluntary and communitarian efforts, plan ahead) will work for some. However, the author stops short of describing the work it takes to develop a curriculum for learning, to build alliances and supportive networks, to recruit people from the service-system who can set aside their usual measure of arrogance and conceit. Finding a way to work with others; learning enough of the history to put it and the anger it causes to one side; understanding what it will take to make real change and our own part in it; seeing clearly what is there—these are just some of the tasks. To engage families—strong families with clear ideas and a sense of purpose as well as those who are stuck—in a journey together takes a deal of care and effort. People who want to read about how that journey is to be tackled will need to look elsewhere: the ‘Partners in Policymaking’ literature would be a good place to begin (find out more at http://www.partnersinpolicymaking.com).
On any voyage a chart is useful. Wolfensberger is not shy of telling us where some of the significant hazards are. We could probably add a few more. the “One Right Way”” rocks on one hand, the sandbanks of “Anger and Blame” on the other, and the “Great Whirlpool” of the service system in between, waiting to suck us down. The navigator's box of tricks is a mix of age-old knowledge, modern gimmicks, and what we can find on hand. “Some Thoughts on Parents Responsibilities” (Part 2) provides a good grounding for setting out to find what is useful in a host of currently available ideas and devices: circles of support, person-centered planning, independent living, individualized funding, and many more. These are the constantly changing ways inventive people (including many families) seek to engage us with the dilemmas of having a disability in a puzzling and dangerous world. All are well worth the journey it takes to discover them, and this monograph will be useful if it sets people on that journey.