Volume 12, Number 1, Fall/November 2001

Editors' Forum

Vangie Bergum, RN, PhD
Professor, Faculty of Nursing
Director, John Dossetor Health Ethics Centre
University of Alberta

Bashir Jiwani, MA
Coordinator, Northern Alberta
Provincial Health Ethics Network

Differing values and beliefs are an inescapable part of the moral landscape in today's world. These differences become challenges when decisions about the real issues that affect the members of our pluralistic community need to be made - for social policies are, at their core, reflections of prevailing moral norms. The more varied the perspectives that inform the moral community, and the more diverse the human beings in which these perspectives manifest themselves, the more difficult and challenging it becomes to express, understand and engage in discussions of social values. This is especially true in a society like ours where people come from a variety of linguistic and cultural backgrounds and lived experiences, bringing with them a wide spectrum of knowledge and expertise, function and capacity. Difference then, in all its iterations, is a central challenge for our global world, a world in which there is no clear, central, right place to stand.

The articulation and understanding of our changing social values, coupled with sensitive and thoughtful challenging of these values, is necessary for mediation and resolution of value conflicts where these conflicts arise. In other words, our belief is that the key to making sense of the richness of moral views in multi-dimensional conversation is creating a space where relationships, ideas, beliefs, and perspectives can be developed and argued. For us to create and take full advantage of such a space, three features need to be in place. First, we need to acknowledge that there are many different legitimate moral perspectives. Second, we need to exercise respect for and work to genuinely understand various perspectives-no matter how different from our own they might be and no matter how certain of our own views we are. And finally, in recognition of the reality of our human interdependence and the impact of social policies on the lives of every member of the moral community, we need to conduct our debate and discussion on difficult issues in ways that will balance the values of various groups with broadly accepted norms of social justice.

This edition of Health Ethics Today is dedicated to learning more about the ethical issues associated with disability. In the pages that follow, we will hear a variety of perspectives (personal and experiential, philosophical and legal) on questions that have not often (and certainly not often enough) been at the centre of debate in bioethics.

Gregor Wolbring and Peter Carver discuss the connection between the "disability perspective" and the human rights movement, linking meanings of what a valuable life consists in to questions of law and the assumptions about conceptual models of disability, "social" versus "medical", contained therein. Dick Sobsey and Alister Browne discuss the case of the Latimer family, a story that shakes and shapes our own families as it reverberates throughout the various halls of Canadian policy-making institutions. Eleanor Stewart discusses a recent initiative at the University of Alberta, aimed at providing interdisciplinary forums for these complex discussions to take place. Karyn Christiansen discusses her personal experience of going blind, showing the tension between the medical model of "finding a cure" and the social model of living in a world that equally supports all of our needs in a multi-functional system - a model that Anita Silvers describes in her article. Resonating throughout these discussions is the tension between structuring our world in ways that allow all of us to have access to the resources we need to thrive well, and at the same time pursuing research and new treatments for preventing the types of illness and disability that many feel close down some opportunities for having a meaningful life.

The challenges posed by the diversity of perspectives in our moral community reminds us that the location of the moral center is very much up for discussion and there is no obvious objective viewpoint. The issues raised in this edition of HET are incredibly complex. It is crucial to recognize that all we can ask, and have asked, the authors in this publication to do is sketch the lines of argument they would pursue in a more full treatment of the subject matter being addressed.

There is disagreement in the pages that follow. At issue are questions about what facts count as facts, and which are manipulations of the truth. There is disagreement about what values are paramount, what principles ought hold sway and, at the very core, what a meaningful life consists in. Following on this, there is tension around which frameworks of personhood offer the most fair and just opportunity for the living of meaningful lives. There is disagreement about integrity, and what motivations are morally justifiable. In the context of the Latimer's story, we come up against different interpretations of the facts of the case, including Mr. Latimer's own motivations in taking his daughter's life. And while part of the discussion must be about what his motivations were, it should be recognized that moving beyond speculation is difficult to do, and we need to be able to make certain assumptions about the facts of a case when they are in dispute so as to be able to comment on the issues at hand; even while we recognize that the commentary will be limited in its application to that case, to the extent that the assumptions we make are accurate.

Our own view of the ethical challenge posed by this richness of diversity is that it is a genuine opportunity. It is an opportunity for us to learn about ourselves as well as about others. And it is an opportunity for us as a community and as a society to create understandings, conversations and even policies, that are responsive to our own, as well as to our neighbours' understandings of meaningful life, while at the same time allowing our respective understandings of these issues to grow and continue to be enriched.

We feel strongly that for this discussion and debate to move forward productively, it is key to approach the questions that are raised with the values outlined above firmly in view. Humility, respect, open mindedness and tolerance provide the ties that can maintain the integrity of today's diverse moral community.

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