Living With Contested Knowledge and Partial Authority

THESE CAREFUL AND CONSTRUCTIVE comments bring grist to our mill. Before responding to them, we observe first that they offer no substantive challenge to our thesis: ambiguities associated with meaning in the disabled life make it more likely that professional service providers will make dogmatic responses to bereavement, and perhaps other essentially contested topics, responses that are defended by isolationism.

Some welcome ideas came from left field to refresh our thinking, such as Colman's observations on the gendered nature of care. She reminded us that although the audit from which these cases came was established to investigate bereavement in general among adults with intellectual disability, its rough and ready sampling failed to ensure the expected range of bereavement types. Somehow the bereavements constructed as relevant for audit all transpired to concern the death of mothers. Moreover, of the six relatives who agreed to be interviewed concerning these bereavements, two were stepfathers and four were sisters. Colman underlines the invisibility of care work usually done by female family members: how wise or less wise decisions create the conditions for bereavement reactions, and how changes to care arrangements following bereavement fall most heavily on them. Traustadottir (2002) discussed the way new care initiatives often put pressure on female family members and staff to do more unpaid work. For example, Circles of Support encourages them to include people with intellectual disability in their personal social networks, without considering the personal costs. Such observations have yet to emerge from the umbrella of feminist research. Separatism has served feminism well, but issues of women and care do need to find their place in mainstream reviews.

Another useful reminder from Colman is that the person with intellectual disability is not the only concern to families, although only a few adult services manage to hold wider systemic factors in mind (Clegg and Burnham 2000). If the person may make naïve comments at a funeral that would devastate family members whose needs take priority, the person will be excluded.

The potency of bereavement was discussed twice. Casenave suggests that because "disability is a loss experience" bereavement resonates with it, casting some doubt onto the suggestion that our thesis generalizes to other contested topics. Reinders criticizes clinicians for being purblind to the tragic. The anonymous reviewer who questioned the relevance of our discussion of the quality of "presence," a quality Reinders considers highly relevant, illustrates the point better than we can. Recognizing the way clinicians have little "patience with the notion of the tragic" encourages reflection on what other human experiences fail to capture our attention.

Although these are all potentially valuable directions, we focus here on comments that may enhance our ability to work without dogma. Since at least the 1980s, clinicians in intellectual disability have criticized the discipline for using linear and univariate rather than complex and multivariate theories, and for a naïve search for magic answers (reviewed in Clegg 1993). It is our contention that little has changed, and that uncertain meaning and normalization combine to create ideal conditions for dogma. Reinders' exposition of the various uses of meaning in our article and in different linguistic and historical traditions develops a vital but neglected topic in intellectual disability, which we consider in some detail. We conclude by arguing that developments require us to distance ourselves from the universality and commonality inherent to normalization, and create new ways to appreciate particularity and diversity.

The gist of Reinders' complex argument appears to be that the problems we identify in managing bereavement in intellectual disability stem from a modernist understanding of meaning that is erroneous. Implicitly, those who eschew its pursuit demonstrate the greater wisdom, because neither dialogue nor activities such as reflection can generate meaning that is unattainable. If we understand his position correctly, he contrasts two principal understandings of meaning: comprehension and apprehension.

Comprehension is the illusory modernist idea that humans are agents who make sense of themselves...