Deborah Stienstra

Vulnerability and palliative care

As an area of clinical focus or academic concern, medicine has paid very little attention to the topic of vulnerability. It does not typically appear on medical curricula, and in standard medical textbooks, such as Harrison’s or Lange’s, vulnerability is all but absent. Vulnerable plaques are of course covered extensively, but as for vulnerable people, they somehow seem to be missing from the medical radar. Most physicians would argue that vulnerability is a meta-phenomena, a manifestation of illness or debility that derives from a breach or lack of bodily integrity. As such, people who are sick or disabled, those with diminished competence or decisionmaking capacity, are de facto vulnerable, because their bodies and minds do not function normally. What this “bodily focused” understanding of vulnerability offers by way of simplicity, it fails to deliver by way of depth. For example, how does one define “normal”, and do rigidly applied judgments of normality relegate those who fall below this standard to a status of lower quality, lesser worth, or diminished value? This can happen unwittingly and without malign intent, leading to perceptions of suffering and poor quality of life, which serve to heighten vulnerability, when seen through a normal-centric lens. Disability rights activist and scholar Carol Gill states, “disabled people are not innately vulnerable, but are made so by a social environment that devalues human differences” (Gill, 2006). In other words, people can be made to feel more at risk than others because of the circumstances in which they live and the assumptions that society holds about them. This assertion certainly resonates with the findings and experiences of our research team, funded by the Canadian Institutes of Health Research, to examine vulnerability in end-of-life care. Working with colleagues from the disability community, we discovered that vulnerability is not merely an experience of the unfortunate few, but rather, a universal condition and part of our collective humanity. The Vulnerability Model of Palliative Care that we developed (Stienstra & Chochinov, 2006) illustrates that the more people are marginalized, stigmatized, and disenfranchised, the more at risk they are of having a narrower range of healthcare options, through to, and including, end-oflife care. As with most things in life, appropriate responses are predicated on an accurate and honest accounting of circumstances. If vulnerability is, indeed, not simply a state of bodily dysfunction, but a byproduct of bias or social injustice—imposed vulnerability, so to speak—then solutions for its consequences need to be sought on a multitude of fronts. In this special issue of the Palliative & Supportive Care, the root causes of vulnerability are provided no quarter. But far from being a “finger wagging” exercise, the articles contained herein offer real opportunities to mitigate imposed vulnerability, which so often shapes end-of-life experience. The article by Chochinov and colleagues examines the application of Dignity Therapy in two distinct samples of the frail elderly; those who have maintained their cognitive capacity and those who have not. It is striking that in both instances, healthcare providers experienced the patient’s story—either as told by the patient directly, or by their family member proxy—as a way of shifting their perceptions. After having seen her patient’s story—an elderly woman with advanced dementia—the nurse stated, “I see my resident not just how she is now but how she was in her earlier life, who she was, and how she came to be the person she is now.” This idea of being able to shift perceptions from the domain of patienthood to the realm of personhood is a core precept of addressing vulnerability and achieving dignity-conserving care. An article by Stienstra and Chochinov explores barriers to palliative care for those with heightened vulnerability, including those with pre-existing disabilities and impairments, the homeless and the poor; those in conflict with the law, the frail elderly, recent immigrants, and those subjected to discriminatory practices. In these circumstances, vulnerability can be cumulative, with marginalization Palliative and Supportive Care (2012), 10, 1–2. # Cambridge University Press, 2012 1478-9515/12

A Three-Way Dance: The Global Public Good and Accessibility in Information Technologies

20.00 doi:10.1017/S1478951511000526

Feminist perspectives on Canadian foreign policy

When we recognize the development and use of information technologies as an emerging global public good, we can move away from the stark dualisms of profit versus human rights, market share versus accessibility, and competition versus inclusion, to an understanding of how both public and private interests are at play in the development of this global public good. Governments, industry, and disability advocacy organizations are all involved in the construction of this public good in a complex three-way dance. We argue that in the context of this three-way dance it is possible to create a common ground between disability advocacy organizations and the IT industry by developing tools that address the tensions that arise from their differing motivating forces. Specifically, we argue that three sets of tools—regulation, developing ease of use products and standards, and using education to increase the market strength of people with disabilities as consumers—can change the relationships between these two communities of interest in ways that will benefit each.

The critical space between: Access, inclusion and standards in information technologies

Contributors Acronyms Preface 1. Taking Up and Throwing Down the Gauntlet: Feminists, Gender, and Canadian Foreign Policy 2. Engaging the Possibilities of Magic: Feminist Pedagogy and Canadian Foreign Policy Part 1: Internationalism and Globalization 3. Disrupting Internationalism and Finding the Others 4. Gender and Canadian Trade Policy: Womens Strategies for Access and Transformation 5. Of Playing Fields, Competitiveness and the Will to Win: Representations of Gender and Globalization Part 2: Human Security 6. Militarized Masculinities and the Politics of Peacekeeping: The Canadian Case 7. Myths of Canadas Human Security Pursuits: Tales of Tool Boxes, Toy Chests, and Tickle Trunks 8. Masculinities, Femininities, and Sustainable Development: A Gender Analysis of DFAITs Sustainable Development Strategy Section 3: Human Rights 9. Womens Human Rights: Canada at Home and Abroad 10. Discourses and Feminist Dilemmas: Trafficking, Prostitution, and the Sex Trade in the Philippines 11. The Contradictions of Canadian Commitments to Refugee Women Section 4: Womens Organizing 12. Its Time for Change: A Feminist Discussion of Resistance and Transformation in Periods of Liberal World Order 13. Organizing for Beijing: Canadian NGOs and the Fourth World Conference on Women 14. Gendered Dissonance: Feminists, FAFIA, and Canadian Foreign Policy Bibliography Index

Accessibility, Disability, and Inclusion in Information Technologies: Introduction

By examining the Canadian standards system, and especially the work of the Canadian Standards Association (CSA) related to accessibility, this article explores the question: can legislation and/or standards ensure access and inclusion for people with disabilities in the area of information technologies? And if so, what type is required? It argues that the standards system in Canada privileges the voices of industry while creating a discourse of public accountability and corporate social responsibility. This paradox leads to an undervaluing of the need for addressing issues of accessibility and inclusion in information technologies. By proactively seeking out innovators in the disability community and bringing them to the table, the CSA could open up the standards development discussions and find creative solutions to accessibility barriers. The principles of balanced representation and consensus decision-making open the possibility for discussions around standards that can effectively address access and inclusion of people with disabilities in the development and use of information technologies, but only if the systemic barriers to both individual and organizational participation are recognized and addressed.

Voyaging on the Seas of Spirit: An Ongoing Journey towards Understanding Disability and Humanity.

The pages of The Information Society have hosted and incubated a number of fine critical studies and discussions of inclusion and accessibility, not least on topics such as universal service, digital divide, community networking, development, and access to information, Internet, and telecommunications. In one sense, then, this special issue foregrounds questions of accessibility and inclusion as they are raised by disability. This may function as a more-or-less recognizable and indeed common characterization and understanding of disability. Indeed, the various contributions to this collection certainly do advance our understanding of the fundamental aspects of disability and impairment as they interact with and are constructed by information technologies. With the rise of concepts of the information society and developments with convergent information and communications technologies, this is a topic that has gradually become visible and legible to scholars, policymakers, scientists and technologists, business people, and civil society organizations. It still has not received, however, the sustained study, analysis, and debate it merits, so we hope the articles we present here will further this enquiry. Our theme, however, has wider and deeper implications than are usually warranted, when it is custom-

Can the Silence Be Broken? Gender and Canadian Foreign Policy

In an important article in Disability & Society Hughes argued that ontology is becoming a ‘live issue’ in disability studies. Different sources, including non‐western and aboriginal conceptions of disability and cosmology and the literature on philosophy, religion, palliative and healthcare, suggest that we are missing a critical aspect of humanity in our discussions – the spirit. Drawing upon collectively defined or interpreted experiences of disability identified in non‐Western and aboriginal communities we identify gaps in our ontological discussions which result from taken for granted assumptions that there is only individual experience. When we incorporate spirit in our thinking we become open to emerging ways of understanding disability and humanity. Spirit is a critical, although often intangible, aspect of being alive. Drawing on these sources, ontological discussions around disability leads us to explore how experiences of disability teach us about the multiple dimensions of being human.

Race, Ethnicity and Disability: Charting Complex and Intersectional Terrains

To say that the study of international affairs maintains silence in certain areas is no longer the radical statement it once was. Since its inception as a recognized discipline or field in the years between the two world wars, international relations has been a predominantly realist discipline. Over the past decade, however, challenges to realist dominance have come from post-modern theorists, feminists, post-colonial theorists, and political economists.1 These challenges suggest in part that international relations has emphasized relations between states to the exclusion

Heightened vulnerabilities and better care for all: Disability and end-of-life care

Disabled people around the world are often defined in terms of their impairments or conditions, with little thought to intersections with race and ethnicity or other socially constructed identities and experiences Using intersectionality, this chapter asks: Whose bodies matter? Who do states protect? How do disabled people contribute? and Of what benefit are human rights in an intersectional approach? We also ask in what ways do racialised relations of power intersect with disability to construct and reinforce global and local inequalities? Through this we expose critical assumptions about and complexities in exploring race, ethnicity and disabilities in the global South and between the global South and North.

Canada’s responses to disability and global development

OBJECTIVE The purpose of this study was to assess the extent to which vulnerability was present or heightened as a result of either disability or end-of-life policies, or both, when people with disabilities face end of life. METHOD People with disabilities and policy makers from four Canadian provinces and at the federal level were interviewed or participated in focus groups to identify interactions between disability policies and end-of-life policies. Relevant policy documents in each jurisdiction were also analyzed. Key theme analysis was used on transcripts and policy documents. Fact sheets identifying five key issues were developed and shared in the four provinces with policy makers and people with disabilities. RESULTS Examples of heightened vulnerability are evident in discontinuity from formal healthcare providers with knowledge of conditions and impairments, separation from informal care providers and support systems, and lack of coordination with and gaps in disability-related supports. When policies seek to increase the dignity, autonomy, and capacity of all individuals, including those who experience heightened vulnerability, they can mitigate or lessen some of the vulnerability. SIGNIFICANCE OF RESULTS Specific policies addressing access to community-based palliative care, coordination between long-standing formal care providers and new care providers, and support and respect for informal care providers, can redress these heightened vulnerabilities. The interactions between disability and end-of-life policies can be used to create inclusive end-of-life policies, resulting in better end-of-life care for all people, including people with disabilities.