Death, Disability, and Dialogue

IN THEIR INSIGHTFUL and constructive review, "Death, Disability, and Dogma," Jennifer Clegg and Richard Lansdall-Welfare manage to create the very dialogue that they argue is lacking. Their contention is that the lack of dialogue between different realms of discourse has led to rigid service response by caregivers that attempt to address losses experienced by individuals with intellectual disabilities. They argue that this situation arises because of the complexity of the cultural meaning of death and the uncertainty of the meaning for individuals with intellectual disabilities.

Their essay, in itself, is powerfully cross-disciplinary. They review the concept of bereavement from different perspectives: social science research, psychiatric practice, and underlying cultural meanings. This review indicates that social science research has moved from attempting to develop definitive statements about the meaning of death. From their review, it is possible to discern that there may have been an underlying positivist orientation that assumed that a univocal meaning to the loss experience can be discovered. But the only universal fact about death is that there is a loss. It is a significant life event. Going all the way back to the early work of Holmes and Rahe (1967), it is clear that the impact and meaning of the same life event varies from individual to individual. There are multiple layers of meaning that include at least one's larger culture, subgroup values, family meaning, and finally individual interpretation. Clegg and Landsdall-Welfare see the current findings of social science as pointing to the need to be sensitive to the meaning of the death event for the specific individual. It appears to be inappropriate to impose normative stages onto an individual's grief experience.

The finding from the review of psychiatric investigation of loss experiences is that bereavement can contribute to health problems. The loss experience is not necessarily pathologic. This compares to the acknowledgement that depression and anxiety are not necessarily illnesses to be treated, but basic human coping mechanisms that can become problematic. Similarly, the loss experience can be a traumatic experience with negative health implications.

Clegg and Landsdall-Welfare acknowledge the limited nature of their review of the role of culture in the meaning of the loss experience. But even so, it is clear that the larger cultural context contributes critically to the individual's experience of loss. Oversimplification and reductionistic approaches to the death experience result in insensitive, stereotypic, formulaic, and consequently unsuccessful intervention strategies.

The problem, as Clegg and Landsdall-Welfare see it, is that these discoveries and insights have not been effectively integrated into the discourse about and interventions for loss experiences for individuals with intellectual disability. This failure has occurred because of the strong continued effect of the normalization orientation in the field of intellectual disability and vulnerability of the meaning of life for individuals with intellectual disability.

They caution against hasty attempts to integrate the insights on loss from various sources into the discourse on bereavement in the field of intellectual disability. They cite the fragility of meaning of life for individuals with intellectual disability. This fragility leaves them vulnerable to being overwhelmed by the larger discourse with a resulting loss of identity. Their brief mention at the conclusion of their essay of other contested concepts in other clinical services gives rise to thinking further.

Clearly, the fundamental challenge for any discussion of the meaning of a loss experience is the complex nature of our understanding of death. First, there are problems with basic definitions of death from the perspective of science. But from an intervention and treatment perspective, the greatest problem has to do with our larger cultural discomfort in even discussing death and loss. The issue of intervention concerning loss for a specific population, such as those with intellectual disability, is in part only a reflection on our confusion concerning intervention in loss for any person, regardless of their disability status. Here again is confirmation of fundamental likeness across individual differences. This is not to be confused with normalization; rather, it...