THE PROBLEM OF SPEAKING FOR OTHERS REDUX: INSISTENCE ON DISCLOSURE AND THE ETHICS OF ENGAGEMENT
Go to the library, find the section on disability studies (it is HV in the Library of Congress subject classification system used by many libraries around the world) and peruse the shelves. Randomly select a few books by academics. Open them up to the beginning pages. Chances are you will find there some kind of statement about the author’s personal relationship to disability. If you were to open the recently published book titled Disability in Japan, for example, you would see that the very first sentence reads: “Anyone who knows me knows I have a daughter with a disability” (Stevens 2013: 1). Or open Disability Politics and Theory. The first sentence in that book is, “The fanciest party I ever threw was in celebration of the government officially recognizing me as disabled” (Withers 2012: 1). On page 1 of The Rejected Body: Feminist Philosophical Reflections on Disability you will read: “In February of 1985, I was healthy” – a foreboding
remark that segues into an account of the author’s discovery that she had chronic fatigue immune dysfunction (Wendell 1996). Literary scholar Rosemary Garland-Thomson’s book Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature begins, in the “Preface and Acknowledgments,” with a disclosure: “This book is the consequence of a coming-out process. As is often the case for people with disabilities, I had learned to see my bodily difference as a private matter, an aspect of myself that I acknowledged and negotiated in the world with a mixture of composure and embarrassment” (Garland-Thomson 1997: ix). In philosopher Eva Feder Kittay’s book, Love’s Labor: Essays on Women, Equality and Dependency, the Preface is also the place readers are told that “These reflections on dependency were, I realized, prompted in part by a personal situation that made questions of dependency especially salient for me. My daughter is a lovely young woman who is profoundly dependent and always will be. Her condition of severe mental retardation and cerebral palsy have meant that she can never carry on a life without constant assistance” (Kittay 1999: xi). Literature scholar Lennard Davis discusses, early on in the Preface of Enforcing Normalcy: Disability, Deafness and the Body, how “I was born into a family with Deaf parents. My first ‘word’ was uttered in sign language…I grew up in a Deaf world, in a Deaf culture and with a Deaf sensibility” (Davis 1995: xvii).1 The recent anthology Sex and Disability proceeds for only 8 pages before an extended email discussion between the two editors about identity is reproduced, in which one of them, Robert McCruer, tells his co-editor that he could claim to be disabled if he wanted to, because “I have at least once had a mental health professional suggest drugs for OCD [Obsessive compulsive disorder], in the context of a two-year long therapeutic relationship” (McRuer & Mollow 2012: 8–10). In an earlier book, on “crip theory,” this same author writes at length about, and includes a photograph of, his boyfriend, who “lost sight in one of his eyes in May 2004 and is now diagnosed with multiple sclerosis” (McCruer 2006: 74). Many, many other examples of this kind of explicit disclosure can easily be found in the academic literature on disability. The contrasting kind of disclosure is also pervasive: the kind where scholars who write about disability, but who have neither a disability them- selves, nor any personal or kin relationship to anyone with a disability, declare that. So literature scholar Tobin Siebers’s book, Disability Theory, informs readers on page 5 that: “I know that as a white man I will not wake up a black woman, but I could wake up a quadriplegic, as Mark O’Brien [a wellknown poet and writer who lived most of his life in an iron lung] did when he was six years old” (Siebers 2008: 5). Psychologist Deborah Marks spends a page and a half of her Preface addressing “the dilemmas engendered by my position as a member of a privileged group of ‘able-bodied’ people” (Marks 1999: xii–xiv). Journalist Charles Riley’s book, Disability and the Media, explains in the Preface that, “A few caveats, however, are necessary. I do not have a disability, and in the eyes of some…this poses a problem” (Riley 2005: xv). Riley is right. Not being disabled and writing about disability does indeed pose a problem for some. Fran Branfield, a disabled sociologist, for example, finds it offensive. “There appears to be a growing move among ‘nondisabled’ people, who research and work in our area, to justify their involve- ment,” she writes. “In my view, however, their attempts at justification are doomed to failure” (Branfield 1998: 143). The reason for this failure, says Branfield, is that non-disabled people can never not be part of the problem: “their experience, their history, their culture is our oppression” (143). Hence, for non-disabled researchers to study people with disabilities is to “hijack” disability studies and engage in practices of “domination, oppression and appropriation” (144, 143). Some non-disabled researchers agree. Robert Drake is a non-disabled scholar who believes that “it seems inappropriate for non-disabled people to do research about disabled people.” He justifies his own research (he has written a book titled Understanding Disability Policies, Drake 1999) by saying that he writes about “the disabling impacts of contemporary social policy”, not disabled people (Drake 1997: 643). These kinds of debates about the significance of identity and disclosure for whether or not scholarly research is justified, and for how it is received, cut straight to the heart of the theme of this special issue, academic selfknowledge. I have a particular interest, and stake, in this discussion because I have, myself, recently published a book on disability (Kulick and Rydström 2015). That book, written together with an historian, is an ethnographic and his- torical study of sex and disability. Titled Loneliness and Its Opposite: Sex, Disability and the Ethics of Engagement, the book contrasts attitudes and practices in two countries, Sweden and its neighbor, Denmark. It demonstrates how in Sweden, the sexual lives of adults with significant disabilities are actively hindered, whereas in Denmark, sexual education and sexual activity is facilitated for those same groups of people. In writing that book, I struggled with the issue of disclosure, and after extended deliberation, I ended up deciding to not disclose. In other words, there is nothing in the book about whether or not I have any intimate personal ties to someone with a disability, and there is nothing about my own status as either disabled or non-disabled. I still think that the decision to say nothing was the right one. But it is a decision, I find, that continues to make me anxious.
In the context of this special issue, I want to make that anxiety explicit, in order to explore the relationship between academic self-knowledge and dis- closure. The Delphic inscription to “Know Thyself” didn’t carry a Foucauld- ian coda: “And Tell All You Know.” Contemporary academic practices, though, certainly in disability studies, but really in the humanities and social sciences more generally, seem to demand not just self-knowledge, but con- fession as well.
Full Disclosure
The irony of making my lack of disclosure regarding disability the focus of an essay is that in order to be able to discuss it in a way that isn’t facile or coy, I have to, of course, disclose. So, here goes: I do not have a disability myself (When I first wrote that sentence, I qualified it by writing “I do not currently have a disability myself,” in order to acknowledge disability rights activists’ reminders that we are all only a car accident or a blood clot or an aged body away from disability. But language is ambiguous, and “currently” there could also mean that I had a disability in the past that I no longer have, or that I have a chronic impairment of some sort that might reassert itself at any time, none of which is true). Nor do I live with a partner who has a disability, or have a child who has a disability. I did, however, grow up with a younger sister, Kelly, who had Down syndrome. Kelly was rather significantly impaired. She had limited mobility due to a perforated heart, she had very little verbal language, and she needed more or less constant supervision, care and companionship. Kelly was born when I was five years old, and my relationship with her was the most signif- icant positive formative relationship of my early life. I credit her with turning me into, among other things, an anthropologist – that is, into someone whose profession it is to extend across boundaries, to listen to people whose language and culture one struggles to comprehend, and to represent them to others in a respectful, empathetic way. Now, given the exhortation to disclose that pervades the disability studies literature, it should have been an easy and obvious matter for me, when I was writing the introduction to my co-authored book on disability, to at least mention Kelly. That seemingly easy choice, though, turned out to be anything but, for three reasons. The first was that, unlike scholars such as Rosemary Garland-Thomson or Eva Feder Kittay, I did not, in fact, come to disability studies prompted by my personal situation. Growing up with my sister in working-class suburban California in the 1960s certainly sensitized me mightily to disability and to many of the issues that inevitably arise in relation to people with disabilities;
the positive ones being things like empathy and love, the negative ones being things like the lack of social and educational support for children with dis- abilities (my sister was still a small child when then-governor Ronald Reagan obliterated the already minimal state funding that had been achieved for people with disabilities), and the stigma: both the stigma my sister faced, and what sociologist Erving Goffman (1963: 30) wryly called the “courtesy stigma” that entwined everyone in my family because we were related to her. A very early memory I have is of me sobbing in frustrated bewilderment when my kindergarten classmates taunted me with chants that my sister was an “MR” – pronounced “Em-Are,” i.e. “mentally retarded” – the derisive term du jour in the 1960s for people with Down syndrome. I remember under- standing from the malice in my classmates’ voices that the term was derogatory and intended to hurt me. But I didn’t comprehend what the word had to do with my luminous baby sister. Experiences like that, as important as they were for me growing up, did not inspire me to study disability professionally. Perhaps because I never thought of my sister as a member of some broader “disability community” – she was always just my sister – I never made a fully conscious connection between my sister’s disability and “disability” as a larger topic of concern or engagement. As a professional field of enquiry, disability never interested me. I clearly remember, for example, when the landmark anthropological anthology Disability and Culture came out in 1995. I knew about the book because several of my anthropological colleagues in Scandinavia had written chapters in it (Ingstad and Whyte 1995). I recall thinking that the topic certainly was an important one, and I remember feeling happy that someone was writing about it. But despite those edifying reflections, I didn’t read the book. The second problem I had with acknowledging my sister in my book about disability was that it seemed a bit odd to mention her in a book about sex, especially since my interest in disability and sexuality had nothing to do with Kelly – I left home before she became an adolescent and I never spoke to her, nor have I ever spoken to my mother, about her sexuality (Kelly died at age 31 in 1998). I became engaged in the question of sexuality and dis- ability by complete coincidence: several years ago I heard a lecture in Sweden by a counselor who advised people with disabilities about sex. This counselor recounted an incident involving a quadriplegic woman, who lamented to him that she had begun experiencing orgasms when her male attendants lifted her out of her wheelchair to bathe her, but that the attendants had stopped doing that when they noticed that she found being lifted pleasurable. This story moved me tremendously, in the sense that it horrified me. It made me realize that there was an entire population of adults like this woman, whose erotic lives were being actively suppressed by the same individuals
DON KULICK don.kulick@antro.uu.se Uppsala University
Go to the library, find the section on disability studies (it is HV in the Library of Congress subject classification system used by many libraries around the world) and peruse the shelves. Randomly select a few books by academics. Open them up to the beginning pages. Chances are you will find there some kind of statement about the author’s personal relationship to disability. If you were to open the recently published book titled Disability in Japan, for example, you would see that the very first sentence reads: “Anyone who knows me knows I have a daughter with a disability” (Stevens 2013: 1). Or open Disability Politics and Theory. The first sentence in that book is, “The fanciest party I ever threw was in celebration of the government officially recognizing me as disabled” (Withers 2012: 1). On page 1 of The Rejected Body: Feminist Philosophical Reflections on Disability you will read: “In February of 1985, I was healthy” – a foreboding
remark that segues into an account of the author’s discovery that she had chronic fatigue immune dysfunction (Wendell 1996). Literary scholar Rosemary Garland-Thomson’s book Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature begins, in the “Preface and Acknowledgments,” with a disclosure: “This book is the consequence of a coming-out process. As is often the case for people with disabilities, I had learned to see my bodily difference as a private matter, an aspect of myself that I acknowledged and negotiated in the world with a mixture of composure and embarrassment” (Garland-Thomson 1997: ix). In philosopher Eva Feder Kittay’s book, Love’s Labor: Essays on Women, Equality and Dependency, the Preface is also the place readers are told that “These reflections on dependency were, I realized, prompted in part by a personal situation that made questions of dependency especially salient for me. My daughter is a lovely young woman who is profoundly dependent and always will be. Her condition of severe mental retardation and cerebral palsy have meant that she can never carry on a life without constant assistance” (Kittay 1999: xi). Literature scholar Lennard Davis discusses, early on in the Preface of Enforcing Normalcy: Disability, Deafness and the Body, how “I was born into a family with Deaf parents. My first ‘word’ was uttered in sign language…I grew up in a Deaf world, in a Deaf culture and with a Deaf sensibility” (Davis 1995: xvii).1 The recent anthology Sex and Disability proceeds for only 8 pages before an extended email discussion between the two editors about identity is reproduced, in which one of them, Robert McCruer, tells his co-editor that he could claim to be disabled if he wanted to, because “I have at least once had a mental health professional suggest drugs for OCD [Obsessive compulsive disorder], in the context of a two-year long therapeutic relationship” (McRuer & Mollow 2012: 8–10). In an earlier book, on “crip theory,” this same author writes at length about, and includes a photograph of, his boyfriend, who “lost sight in one of his eyes in May 2004 and is now diagnosed with multiple sclerosis” (McCruer 2006: 74). Many, many other examples of this kind of explicit disclosure can easily be found in the academic literature on disability. The contrasting kind of disclosure is also pervasive: the kind where scholars who write about disability, but who have neither a disability them- selves, nor any personal or kin relationship to anyone with a disability, declare that. So literature scholar Tobin Siebers’s book, Disability Theory, informs readers on page 5 that: “I know that as a white man I will not wake up a black woman, but I could wake up a quadriplegic, as Mark O’Brien [a wellknown poet and writer who lived most of his life in an iron lung] did when he was six years old” (Siebers 2008: 5). Psychologist Deborah Marks spends a page and a half of her Preface addressing “the dilemmas engendered by my position as a member of a privileged group of ‘able-bodied’ people” (Marks 1999: xii–xiv). Journalist Charles Riley’s book, Disability and the Media, explains in the Preface that, “A few caveats, however, are necessary. I do not have a disability, and in the eyes of some…this poses a problem” (Riley 2005: xv). Riley is right. Not being disabled and writing about disability does indeed pose a problem for some. Fran Branfield, a disabled sociologist, for example, finds it offensive. “There appears to be a growing move among ‘nondisabled’ people, who research and work in our area, to justify their involve- ment,” she writes. “In my view, however, their attempts at justification are doomed to failure” (Branfield 1998: 143). The reason for this failure, says Branfield, is that non-disabled people can never not be part of the problem: “their experience, their history, their culture is our oppression” (143). Hence, for non-disabled researchers to study people with disabilities is to “hijack” disability studies and engage in practices of “domination, oppression and appropriation” (144, 143). Some non-disabled researchers agree. Robert Drake is a non-disabled scholar who believes that “it seems inappropriate for non-disabled people to do research about disabled people.” He justifies his own research (he has written a book titled Understanding Disability Policies, Drake 1999) by saying that he writes about “the disabling impacts of contemporary social policy”, not disabled people (Drake 1997: 643). These kinds of debates about the significance of identity and disclosure for whether or not scholarly research is justified, and for how it is received, cut straight to the heart of the theme of this special issue, academic selfknowledge. I have a particular interest, and stake, in this discussion because I have, myself, recently published a book on disability (Kulick and Rydström 2015). That book, written together with an historian, is an ethnographic and his- torical study of sex and disability. Titled Loneliness and Its Opposite: Sex, Disability and the Ethics of Engagement, the book contrasts attitudes and practices in two countries, Sweden and its neighbor, Denmark. It demonstrates how in Sweden, the sexual lives of adults with significant disabilities are actively hindered, whereas in Denmark, sexual education and sexual activity is facilitated for those same groups of people. In writing that book, I struggled with the issue of disclosure, and after extended deliberation, I ended up deciding to not disclose. In other words, there is nothing in the book about whether or not I have any intimate personal ties to someone with a disability, and there is nothing about my own status as either disabled or non-disabled. I still think that the decision to say nothing was the right one. But it is a decision, I find, that continues to make me anxious.
In the context of this special issue, I want to make that anxiety explicit, in order to explore the relationship between academic self-knowledge and dis- closure. The Delphic inscription to “Know Thyself” didn’t carry a Foucauld- ian coda: “And Tell All You Know.” Contemporary academic practices, though, certainly in disability studies, but really in the humanities and social sciences more generally, seem to demand not just self-knowledge, but con- fession as well.
Full Disclosure
The irony of making my lack of disclosure regarding disability the focus of an essay is that in order to be able to discuss it in a way that isn’t facile or coy, I have to, of course, disclose. So, here goes: I do not have a disability myself (When I first wrote that sentence, I qualified it by writing “I do not currently have a disability myself,” in order to acknowledge disability rights activists’ reminders that we are all only a car accident or a blood clot or an aged body away from disability. But language is ambiguous, and “currently” there could also mean that I had a disability in the past that I no longer have, or that I have a chronic impairment of some sort that might reassert itself at any time, none of which is true). Nor do I live with a partner who has a disability, or have a child who has a disability. I did, however, grow up with a younger sister, Kelly, who had Down syndrome. Kelly was rather significantly impaired. She had limited mobility due to a perforated heart, she had very little verbal language, and she needed more or less constant supervision, care and companionship. Kelly was born when I was five years old, and my relationship with her was the most signif- icant positive formative relationship of my early life. I credit her with turning me into, among other things, an anthropologist – that is, into someone whose profession it is to extend across boundaries, to listen to people whose language and culture one struggles to comprehend, and to represent them to others in a respectful, empathetic way. Now, given the exhortation to disclose that pervades the disability studies literature, it should have been an easy and obvious matter for me, when I was writing the introduction to my co-authored book on disability, to at least mention Kelly. That seemingly easy choice, though, turned out to be anything but, for three reasons. The first was that, unlike scholars such as Rosemary Garland-Thomson or Eva Feder Kittay, I did not, in fact, come to disability studies prompted by my personal situation. Growing up with my sister in working-class suburban California in the 1960s certainly sensitized me mightily to disability and to many of the issues that inevitably arise in relation to people with disabilities;
the positive ones being things like empathy and love, the negative ones being things like the lack of social and educational support for children with dis- abilities (my sister was still a small child when then-governor Ronald Reagan obliterated the already minimal state funding that had been achieved for people with disabilities), and the stigma: both the stigma my sister faced, and what sociologist Erving Goffman (1963: 30) wryly called the “courtesy stigma” that entwined everyone in my family because we were related to her. A very early memory I have is of me sobbing in frustrated bewilderment when my kindergarten classmates taunted me with chants that my sister was an “MR” – pronounced “Em-Are,” i.e. “mentally retarded” – the derisive term du jour in the 1960s for people with Down syndrome. I remember under- standing from the malice in my classmates’ voices that the term was derogatory and intended to hurt me. But I didn’t comprehend what the word had to do with my luminous baby sister. Experiences like that, as important as they were for me growing up, did not inspire me to study disability professionally. Perhaps because I never thought of my sister as a member of some broader “disability community” – she was always just my sister – I never made a fully conscious connection between my sister’s disability and “disability” as a larger topic of concern or engagement. As a professional field of enquiry, disability never interested me. I clearly remember, for example, when the landmark anthropological anthology Disability and Culture came out in 1995. I knew about the book because several of my anthropological colleagues in Scandinavia had written chapters in it (Ingstad and Whyte 1995). I recall thinking that the topic certainly was an important one, and I remember feeling happy that someone was writing about it. But despite those edifying reflections, I didn’t read the book. The second problem I had with acknowledging my sister in my book about disability was that it seemed a bit odd to mention her in a book about sex, especially since my interest in disability and sexuality had nothing to do with Kelly – I left home before she became an adolescent and I never spoke to her, nor have I ever spoken to my mother, about her sexuality (Kelly died at age 31 in 1998). I became engaged in the question of sexuality and dis- ability by complete coincidence: several years ago I heard a lecture in Sweden by a counselor who advised people with disabilities about sex. This counselor recounted an incident involving a quadriplegic woman, who lamented to him that she had begun experiencing orgasms when her male attendants lifted her out of her wheelchair to bathe her, but that the attendants had stopped doing that when they noticed that she found being lifted pleasurable. This story moved me tremendously, in the sense that it horrified me. It made me realize that there was an entire population of adults like this woman, whose erotic lives were being actively suppressed by the same individuals
DON KULICK don.kulick@antro.uu.se Uppsala University
Comments
Post a Comment