Anthropology of Disability: A University of Alberta and Skills Society Exploration
In February and March of this year, six University of Alberta students met in focus groups with Skills Society employees to learn about their work. The U of A students were enrolled in a course called the Anthropology of Disability and had chosen the Community Service-Learning (CSL) option for the course. At the end of the semester, they combined what they had learned from talking with Skills Society employees with what they had learned from course readings to make presentations to their 42 fellow-students who had been doing the coursework-only version of the same class.
All six students spoke glowingly of their experiences and several coursework-option students expressed regret that they had not also chosen the CSL version once they saw their classmates’ presentations. The CSL students presented in pairs. There were some repeated themes in what they learned, but each pair also emphasized slightly different issues.
Brittany and Brianna
Students Brittany Visneskie and Brianna Moore opened with a discussion of one of the main points of the CSL approach: having academic theory encounter pragmatic, workday practice.
Course participants had spent a lot of time reading, talking about, and writing about philosopher Eva Feder Kittay’s idea of “dependency work”: the work that human beings must do for one another to survive because all of us begin life as helpless babies, pass through periods of illness and impairment, and if we are lucky, live long lives that bring some degree of frailty as we age. Using ideas from Harriet McBryde Johnson, Sunny Taylor, and Tobin Siebers, course participants explored how much contemporary society focuses on independence and autonomy and as a result is in denial about the fact that all human beings need help to get through life.
As Brittany and Brianna put it, the Skills Society employees were “outspoken and wonderful” in their reactions to these ideas and how they related to their work experience. They strongly rejected describing their work as “dependency work” and talked about what they did as “support work”, promoting exactly that independence and autonomy that some of the theories were questioning. They also strongly rejected the idea that contemporary society was more unforgiving about disability than traditional societies, citing what they had witnessed in terms of increased and accommodation and awareness during their own careers (and sometimes in terms of their own experiences coming to Canada from other countries). Their challenges to academic framings were important bases for reflection about the real-world importance of ways of speaking.
Brianna and Brittany then turned to an unexpected finding of the CSL discussions, having also to do with putting abstract ideas into lived practice. Skills Society employees offered many examples of how costly and time-consuming policies designed to reduce risk in the lives of people with disabilities frequently generate negative consequences for their quality of life generally, and how frustrating and unjust this was. Brianna and Brittany connected the points raised by Skills Society employees with an essay for the course by legal scholar Daniel Wikler, in which he points out that while most adult citizens of average intellectual or physical ability would never agree to have all of their personal decisions or living arrangements reviewed by special panels of fellow adult citizens with above-average IQs or peak levels of physical conditioning, these kinds of expectations are often legally enforced in the lives of disabled adults without consideration for their fairness.
Many of these points were brought home by a digital narrative featured on the Project Citizenship website and which Brittany and Brianna chose to share with the class (and which also included a brief clip of one of the focus group participants!): “Tyler’s Story”. This clip blew the class away: are Grand Theft Auto and professional wrestling risk-free interests? Maybe not, but they might be an important part of somebody’s idea of the good life!
Nam and Serena
Students Nam Phan and Serena Bayford then took up this theme of the “average” (or the “normal”) and its relationship to disability. Something that Skills Society workers raised again, and again were that “people are just people” and that, at the same time, every person is unique. These facts create both the most rewarding and most frustrating aspects of what the employees called “people-supporting work”. On the one hand, getting to know individual people well, understanding them and their histories, and figuring out ways to support them in achieving particular goals makes the work constantly interesting and engaging. On the other hand, navigating a funding structure that sets standard numbers of hours of support, or supporting someone in a job in an employment structure that demands a standard level of performance, or assisting someone to find a place to live in a housing market that is not oriented to accessibility and accommodation, can be really exasperating.
Nam and Serena connected what they were hearing in the focus groups to the ideas encountered in class of Lennard Davis and Sunny Taylor about how the notion of “normalcy itself in some ways creates disability. The rise of social statistics in the nineteenth century and what one could call the discovery of the “average” person (who in some sense didn’t exist in, say, the Middle Ages because no one was measuring people with averages in mind then) has gone along with a restructuring of work and life to be “time oriented” rather than “task oriented”. In a time oriented system, we have to be done with a job by a particular time and working slowly or different is a problem; in a task-oriented system, the important thing is just to get the task accomplished but not how we do it or how fast we do it. A world organized around standards, averages, abstract time, and “normalcy” is a recent historical innovation, and is sometimes hard to live in for everyone.
Alanna and Justine
Students Alanna Bauman and Justine Pelletier drew on some very interesting points raised by focus group participants regarding professionalization and their work. Skills employees mentioned that both unionization and professionalization had been considered by workers in their field in decades past, but that the general feeling had been that these forms of organization might conflict with both the values and the practicalities of their work. In their work, they value equality and are uncomfortable with the hierarchy that might be created by a framework that suggested: “I’m an expert helping a patient or a client” in a way that would mirror medicine or social work. What they want to create is a situation of solidarity and alliance with the people they support, and of long-term relationships, not unit by unit appointments. This relates to their hesitance about unionizing, as they say, they don’t feel they would be able to stick to a strike if a vulnerable person whom they knew well needed their support. They also discussed the ways that their work is not easily standardized in a way that would fit a “professional” model: they play many roles in the lives of the people they work with, roles that vary from individual to individual and over the life-course. This would make setting professional standards difficult, again because of the “one size does not fit all” problem. Alanna and Justine related these points to some of the arguments in the work of Eva Feder Kittay.
Finally, Alanna and Justine referred back to something other student presenters had mentioned, about the frequency with which Skills employees talked about how rewarding they found their work and how exasperating they found it when members of the public engaged them while ignoring the people they support, and particularly when people make comments about “what good people” they must be to do their jobs. They say this is insulting to disabled people, of course, but also displays a misunderstanding of the fact that theirs is actually a deeply interesting and very fulfilling kind of work, not a kind that requires saintliness to do.The points the Skills Society employees raised resonated with many, many of the readings the class did all semester long, and this resonance was brought to life in Alanna and Justine’s presentation.
A sentiment expressed repeatedly by the CSL students in their presentations and the course-based students in their written responses – and which I share as their teacher – is gratitude to Skills Society employees for sharing their knowledge and experience with us. Something that also came up in student reactions to the CSL presentations is why, in a course about disability, the CSL component would focus on people who work with people with disabilities rather than involving a project working with disabled people directly. Speaking as the teacher, something I wanted the course to impart was a new way of thinking about social connectedness – not about “disability” as a category that contains some kinds of people and separates them from everyone else. Every person is relatively abled in some ways and relatively disabled in others, and all of us need help and support from one another to get by. Skills Society employees make up a kind of “living library” of information about that set of social facts, and we learned a lot because they let themselves be checked out by us for a semester.
Our sincere thanks to Ben Weinlick, Debbie Reid, Gavyn Backus, Arlene Lam, Karen Boyce, Emily Brandon, Valerie Bransfield, Carol Brooks, Chris Bruce, Pamela Dube, Dawn Marie Greene, Bev Hills, Deborah Kennedy, Nancy Kirugi, Chris Odding, Jan O’Neil, Busi Pfupa, Susan Scott, Jo-Ann Siebert, Randi Jo Tajcnar, Judy Watt, Barbara Wegoye, Pawel Zygmunt, Rose, Radija and Yodit for their participations in our CSL component of the course.
Davis, Lennard (2005) “Constructing normalcy: the bell curve, the novel, and the invention of the disabled body in the nineteenth century.” (Chapter one of Davis, ed. The Disability Studies Reader.)
Johnson, Harriet McBryde. (2003) “Unspeakable Conversations” from the New York Times Sunday Magazine for February 16th
Kittay, Eva Feder (1999) Love’s Labor: Essays on Women, Equality, and Dependency.
Siebers, Tobin. (2003) “What can Disability Studies learn from the culture wars?” Cultural Critique 55:182-216.
Taylor, Sunny. (2004) “The right not to work: power and disability.” Monthly Review March 1st
Wikler, Daniel (1979). “Paternalism and the Mildly Retarded.” Philosophy and Public Affairs, 8(4):377-392