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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 themselves, 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 well-known 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 'non-disabled' people, who research and work in our area, to justify their involvement," 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 self-knowledge.

I have a particular interest, and stake, in this discussion because I have, myself, recently published a book on disability (Kulick and Rydstrom 2015). That book, written together with an historian, is an ethnographic and historical 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 disclosure. The Delphic inscription to "Know Thyself' didn't carry a Foucauldian 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 confession 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 significant 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 disabilities (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 understanding 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 disability 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 that the welfare state employed to care for them. That sobering realization, not something that happened to me in my own life, or to my sister in hers, was the impetus to my study. (2)

So given that I did not come to the field of disability studies because of any (conscious) attempt to understand my sister or my relationship with her, and given that my interest in disability and sexuality was not inspired by any dimension of her life, I couldn't really think of a reason why I should mention her and her disability in my book. Except, that is (and this is the third reason I didn't disclose) to establish my credentials, and hence my legitimacy, as a researcher of disability. Mentioning my sister in the opening pages of my book would announce that I was (from some perspectives, anyway) an ingroup member. It would declare that by the sheer coincidence of kinship, I was an ally.

But why, I kept thinking, did I need to do that?

The Vicissitudes of Disability and Disclosure

In the book in which he reveals that he is the hearing child of Deaf parents, literature scholar Lennard Davis discusses, trenchantly and also somewhat testily, why disclosure is seen to matter when disability is the subject of discussion. One reason, Davis suggests, is that disability is not always visible, and it certainly isn't apparent just from someone's name (like gender usually is and, to some extent, ethnicity and race can be) or from a person's style of writing. Given this, if an author's disability is to be made known, it must be disclosed.

But a more epistemologically significant reason for disclosure is that disability always provokes curiosity: "What is the disability?," Davis says people wonder. "How profound is it? Can I see it, touch, know it? How did it happen? What does it interfere with? What would life be like if I had that impairment?" These kinds of questions lead Davis to formulate a truth about disability: disability, he says, "demands an answer:"

Unlike other kinds of interventions around the issue of race, class, or gender, there is a powerful policing mechanism that demands I answer your question [of why I am writing about disability]. If I am a woman, a person of color, or even poor, my body reveals enough so that I don't have to explain why I am a woman, how I came to be black, or why I am poor. But the disabled body must be explained, or at least tolerate the inquisitive gaze (or the averted glance) of the questioner. The question never has to be put because it is always actively in default mode--it is always already asked. (Davis 1995: xvi)

Disability, in Davis's view, is an ontological position "always already" called upon to disclose and give an account of itself. The unwilled imposition of the perpetually "inquisitive gaze" on anyone who has a disability or is associated with one may explain some of the irritation that Davis clearly felt as he realized that he needed to disclose his background in the Preface of his book.

I think that unwanted gaze certainly played a role in my own resistance to disclose.

The irritation that I share with Davis also arguably relates to the consequences that await anyone associated with disability who declines to disclose. Part of the reason I continue to feel anxious about not mentioning my sister in my Loneliness book is that I worry that readers who find out that I had a disabled sister but didn't say anything about her might feel that I am somehow embarrassed by or ashamed of her. I fret that non-disclosure might be interpreted by some as evasion, or concealment.

And so here is where one might offer an emendation of Davis's observation that disability is a demand. That needs to be qualified. Disability isn't just a demand for information; it is a demand for accountability and responsibility. It is perhaps better understood as another kind of speech act together: disability is an accusation. All the questions that Davis cites as arising in relation to disability are scaffolded by two more pressing ones: Why are you like that? and Whose fault is it?

Because disability is "always already" perceived to be somebody's or something's fault, disclosure is incited, to allow the guilty party (a drunken driver, a medicated mother, an incompetent obstetrician, an extra chromosome, a workplace mishap, God, and so on) to be identified.

And along with the accusation that somebody or something is to blame for disability comes the related charge--usually unstated, but always palpable of Whose responsibility is that person?

This is the accusation that people related to or living together with individuals with disabilities are called upon to respond to. And they do, from inside a tangled thicket of love and pride, shame and anger at being continually exposed to the "inquisitive gaze" of others, and guilt, at seemingly never being able to do enough to completely transcend the stigma that attaches to disability like a shadow to a figure in the sun.

The Problem of Speaking for Others

If the specific features that characterize the way society produces and then regards disability are part of the reason why scholars who write about disability feel compelled to disclose their relationship to it, another reason they disclose is because if they aren't disabled themselves, they could be understood to be "speaking for" people with disabilities. And as debates that have raged since the 1980s have demonstrated, that activity is one frequently perceived as anything other than friendly or benign. In the 1990s, disability activists began promoting a slogan, "Nothing About Us Without Us." The sentiment expressed in that slogan, which has been adopted by other groups (such as sex workers, whose advocacy organizations are frequently impassively ignored in discussions about prostitution and trafficking), succinctly sums up the general stance that many disabled people have towards research on disability (Charlton 1998).

The problem of speaking for others has been debated in relation to many oppressed or vulnerable groups, and one of the most well-known places where those debates are summarized and dissected is in feminist philosopher Linda Alcoff's widely-cited 1991 article titled, exactly: "The problem of speaking for others."

Alcoff's essay is a review of the arguments that have been presented by feminist scholars, ethnic minorities and postcolonial critics for not speaking for anyone other than one's self or one's own group. As an example, Alcoff cites feminist philosopher Joyce Trebilcot's renunciation of speaking for anyone but herself, and Trebilcot's argument that to try to persuade anyone to accept her beliefs would be an act of aggression and oppression (Alcoff 1991: 6; Trebilcot 1988: 3-6). Alcoff also cites a case in which a white female novelist who had written several semi-fictional accounts of native Canadian women was publicly asked by native Canadian women to "move over," on the grounds that she was occupying a space that they felt should be filled by native women themselves (Alcoff 1991: 5, 27; see also St. Peter 67-69).

Alcoff goes on to examine the premises of these kinds of renunciations and objections. She acknowledges that everyone's social position is epistemically relevant to what they can say and how what they say is heard by others. She also concedes that speaking for other people can result in their erasure or disempowerment in an Orientalist entrapment that reduces them to being mere objects of knowledge and control. But Alcoff questions the wisdom, and the possibility, of only speaking for oneself. She argues that the idea that one can only speak for oneself not only reinforces Western liberal fantasies that each individual somehow consists of a separate little world, unattached to others; she also says that the belief that one can only speak for oneself constitutes an attempt to thwart criticism and accountability, and is, at heart, a delusional and dishonest disavowal of power. It can also be a dangerous retreat from ethical responsibility. If one can't speak for anyone except oneself or one's own group (determined how?, Alcoff wonders. By whom?) and if one has no choice except to "move over" when asked to do so by members of other groups, how can one engage in critique, or political action?

Alcoff ends her essay with a discussion of philosopher Gayatri Spivak's renowned text, "Can the Subaltern Speak?" (Spivak 1988). Spivak famously argues that the entire enterprise of "speaking for" is both futile and self-congratulatory. The subaltern, Spivak says, cannot speak, partly because the idea of a "naturally articulate" subject of oppression is a nostalgic fantasy for a sovereign, fully self-aware subject that does not, in fact, exist; and partly because the subaltern subject is always already mired in Western representational conventions that both efface it and simultaneously materialize the privileged intellectual position that claims to hear that subject--but only as the object of its own knowledge. Rather than "listen to" that phantasmatic specter (which, in Spivak's view, would only ever tell us what we already know), or "speak for" it (which by the same reasoning would amount to using the subaltern like a ventriloquist's doll to talk to ourselves about ourselves), Spivak advocates, instead, that we learn to "speak to" (note the preposition) the subaltern (1988: 91).

This exhortation is mystifying. It implies a kind of one-sided interaction that seems more appropriate as advice for talking to servants, or dogs, than it does for engaging respectfully with fellow human beings deserving of dignity.

In her discussion of Spivak's article, Alcoff does not remark on this, and she cites Spivak's conclusions with approval. However, without comment she modifies Spivak's "speak to" to a suggestion that that scholars should be "speaking with and to" others (23, emphasis added). She summarizes Spivak's critique of the belief that oppressed others somehow will magically be able to articulate the source of their oppression, and that the role of the intellectual is simply to listen and convey. But Alcoff says that regardless of whether or not the speech of oppressed groups is seen as the final arbiter of truth, it still deserves to be privileged as something to be listened to, because "speaking constitutes a subject that challenges and subverts the opposition between the knowing agent and the object of knowledge" (23).

In the end, then (and, I think, in unacknowledged or unperceived contrast to Spivak), Alcoff concludes, as do most others who address this issue (e.g. Kitzinger and Wilkinson 1996, Traustadottir 2001), that we should not be overly afraid to speak for others. We should, though, be cautious. We should be self-critical of our own position, our social location, and of our potential will-to-power that may subjugate others whom we think we are helping. We must also, Alcoff says, take into account of "all the effects" (28) of our words, so as to guard against imperialist appropriation and the silencing of others.

The Problems that Persist

In thinking about the relevance of this advice to my own research and to my predicament about whether or not to disclose my relationship to disability, it seems to me that for all Alcoff's insights, she leaves two important problems unresolved.

The first is theoretical, and is raised by her injunction to take into account "all the effects" when evaluating whether and how one might speak for another. The difficulty with that advice is this: under what circumstances could it conceivably ever be possible for anybody to divine, perceive or articulate "all the effects" of their own or anyone else's discourse? That injunction makes it sound like people are omniscient, or ought to be. But needless to say, we aren't. Even if we restrict our ambitions to analyzing "the probable or actual affects of [our] words on the discursive or material context," as Alcoff suggests more modestly at one point (26), we are still fumbling mostly in the realm of guesswork, anxiety, or hope.

For example, I'd like to think that the Loneliness book about disability will alert people to the fact that many adults with disabilities, when it comes to sexuality, are still treated and disciplined as though they were children. By providing examples from Denmark of how people with significant impairments can be brought into respectful dialogue about sex, and helped with sex if they want to be, I hope the book will stir people's imaginations and consciences, and perhaps contribute in some modest way to progressive reform.

But what if the material presented in the book ends up resulting in the opposite? What if people who read the book or hear about it get upset to learn that some social workers paid by the state in Denmark actively facilitate significantly disabled adults' sexuality by helping them contact sex workers, or by assisting them with masturbation (as we detail in the book, not by actually masturbating them, but by placing lubrication and sex aids on their privates, asking when they should return, and then leaving the person they're helping alone in his or her room)? What if that book's documentation of the practices that allow a significantly disabled adult to have an erotic life contributes to a backlash against those practices, by feminists opposed to sex work, for example, or by religious spokespeople who find such practices immoral, or by parents who think the very idea of help with sex constitutes an abuse?

Whether or not effects like those are "probable" in the sense Alcoff has in mind is anybody's guess. They certainly are conceivable, they are possible. And so, in imagining that such unhappy effects might arise, should my conclusion be that I should never have researched the topic at all?

The second difficulty with Alcoff's conclusions regarding speaking for others concerns the role she accords language in that engagement. The take-home message of her essay is that we shouldn't stop speaking for others, but we should always privilege the other's speaking for herself or himself. Notice how that advice assumes an "other" who can speak or communicate in some non-mediated, immediately intelligible way.

Alcoff's resort to language is one of the things that differentiates her from Spivak, for whom language is anything but straightforward. It is also one of the things that links her to another influential feminist philosopher who has written about speaking for others, namely Iris Marion Young. In her essay on perspective taking, titled "Asymmetrical Reciprocity: On Moral Respect, Wonder and Enlarged Thought" (1997), Young distinguishes between what she calls "symmetrical reciprocity' and its opposite, "asymmetrical reciprocity." "Symmetrical reciprocity" is Young's name for what people do when they imagine that they can put themselves, with their background, knowledge, experience, and privilege into what they suppose is the position of another, and they imagine that such a substitution adequately captures the perspective of that other or those others. An example of this from my own research is a Swedish blogger who devoted an entry in July 2012 to the topic "Is sex a right?" Moved to write about the issue by an article about a personal assistant who complained to her supervisors that the disabled person she assisted smoked, watched porn films, and sometimes wanted help with putting on a condom, this 28-year-old woman wrote:

I began to think about if it had been me. If I were to have something happen that left me unable to have sex or masturbate on my own. I have to admit that I am a pretty sexual person. I like sex, and masturbation, I like sex toys, I like ... well, gosh (josses), I like a lot, quite simply. If I were to lose the ability to feel pleasure, lose the ability to give myself an orgasm, for example, that would be a pretty big loss. But I have a really difficult time imagining that I could ever have someone who works for me help me with this. That if anything would feel really humiliating, in fact.

Aliva och livet, blog post, 4 July, 2012

This sort of well-meaning but ultimately only self-serving displacement by an individual who has sexual relations, but who in a flight of fancy pauses to imagine for a moment what life might be like if she couldn't, is a prototypical example of symmetrical reciprocity. A misguided exchange like this constitutes one of the moral standpoints that allows non-disabled commentators to feel entitled to lecture people with disabilities about how sex is not, in fact, something that one shouldn't be able to live without.

Iris Young highlighted the dynamics of "symmetrical reciprocity" in order to draw attention to the way fantasies of identification and similarity--of being able to put oneself in the place of another--efface difference and disguise relations of power. She points out that trying to imagine the perspective of another is helpful in carrying one beyond one's own immediate standpoint. But, she says, it is a mistake to think that we can ever capture or occupy the standpoint of the other person. "When people obey the injunction to put themselves in the position of others," she writes, "they too often put themselves, with their own particular experiences and privileges, in the positions they see the others being in" (349). Hence, "when privileged people put themselves in the position of those who are less privileged, the assumptions derived from their privilege often allow them unknowingly to misrepresent the other's situation" (349).

Young goes on to describe how this kind of misrepresentation doesn't facilitate communication or understanding--it actually impedes it:
   If you think you already know how the other people feel and judge
   because you have imaginatively represented their perspective to
   yourself, then you may not listen to their expression of their
   perspective very openly. If you think you can look at things from
   their point of view, then you may avoid the sometimes arduous and
   painful process in which they confront you with your prejudices,
   fantasies and understandings about them, which you have because of
   your point of view (350).

Instead of "symmetrical reciprocity," Young encourages us to approach others with an awareness of what she calls "asymmetrical reciprocity." We can never fully understand another person. We can never completely share his or her perceptions, history, views, position, and standpoint. We can never actually put ourselves in the place of another. Therefore, in order to learn from others, we need to show humility. We need to engage with others in a spirit that recognizes that their perspective is both necessarily different from, and may actually challenge, ours. This is an ethical relation, says Young. It is one "structured not by a willingness to reverse positions with others, but by respectful distancing from and approach toward them" (352).

Young's articulation of the dangers of perspective taking is vitally important, and her concern to respect the people we interact with and represent is similar to Linda Alcoff's exhortation to listen to and privilege the speech of the other. If there is a problem with the advice offered by both philosophers, it is that they both seem to assume an "other" who can talk, or who can express himself or herself clearly through some other medium, such as sign language. Young ends her essay, for example, by saying that "Dialogue participants are able to take account of the perspective of others because they have heard those perspectives expressed" (360).

But what about "dialogue participants" who have difficulty expressing their perspectives? People, for example, like the adults I worked with--many of whom either lacked both verbal language and mobility and/or who had intellectual impairments. Communication with individuals who have significant disabilities can be time-consuming and labor intensive. For me and many others, successful communication frequently requires the mediation of family members, or of helpers who have been employed for many years at the group homes in which those adults live, and who therefore can draw on years (sometimes decades) of shared history to interpret the disabled individual's vocalizations, intentions and desires.

What should the ethical relation be with significantly disabled people like those?

Taking Risks

Thinking about people with significant disabilities is valuable in discussions about perspective taking or speaking for others because it draws attention to how even thoughtful treatments of those issues take an easy way out, by assuming that the "other" whom academics can either choose to speak for, or not, is able to speak for herself or himself, and that all we have to do is listen attentively and with respect. Here Spivak, for all the problems with her insistence that the subaltern cannot speak at least complicates the idea of speaking, and of perceiving the speech of others.

People with significant disabilities move what in frameworks like Alcoff's or Young's is a peripheral problem or a tough case into the center of discussions about speaking for others. Once the act of speaking and the perception of an other's speech is appreciated as being as anything other than a straightforward process, the question of "speaking for" becomes both less straightforward than either Alcoff or Young discuss, much more exigent, and much more risky.

Acknowledging this risk and accepting it is one of the critical things that differentiates Swedes and Danes who work with people with disabilities. In Sweden, there is a kind of mantra that I heard recited many times by helpers who talk about sexuality and disability. It is: "If I don't do anything, at least I haven't done anything wrong" (Om jag inte gor nagot sa har jag i alla fall inte gjort nagot fel). These words name a form of engagement that disavows engagement. The "not doing anything" in the "If I don't do anything ..." formulation is misleading, because personal assistants, staff in group homes, and others who use the phrase don't actually do nothing. The "nothing" they believe themselves to be doing is always actually "something;" usually something that discourages sex or impedes it. This can take the form of declining to discuss sexuality with someone with a disability who raises it. It can be a refusal to insert a pornographic DVD into a mobility impaired person's DVD player, or a declaration that it is not part of one's job to assist a couple with mobility impairments who need help to lie together and caress each other. "Not doing anything" includes insisting that a young man take down pornographic pin-ups in his bedroom, because his bedroom is also the workplace of women who work as his personal assistants. It also includes actions such as interrupting an embracing couple at a dance organized for adults with intellectual disabilities, telling them it is time for a coffee break in order to move them apart before they get too attached to one another.

Women and men who work with disabled adults in Sweden told me that one reason they "don't do anything" in regard to sexuality is because they can't be certain what individuals with intellectual disabilities or significant mobility impairments really want. "How can I be absolutely, 100% certain that I truly understand what that person really wants?," many different people told me they wondered.

The unfailing answer to that question was always: I can't. And neglecting to consider how anyone, anywhere, can be "absolutely, 100% certain" that they've ever truly understood what anyone really wants (including themselves, if one believes, like Freud, that people have an unconscious), the personal assistants, counselors, and other professionals who shared that concern drew the inexorable conclusion that because they can't read minds, any assistance they might provide in helping a disabled person have sex might be an oppression or an abuse. Better, therefore, to do nothing at all. Then, at least, one hasn't done anything wrong.

Danes, in significant contrast to their Swedish counterparts, seem able to live with risk. Danish social workers who work in group homes for adults with disabilities provide residents with material that informs them that sexuality is an accepted and even encouraged topic of discussion. They take this initiative because they know that many adults with congenital impairments like Down syndrome or cerebral palsy have received little or no sexual education, and they also know that it is unlikely that many of them will have heard much about sex from the parents who cared for them before they came to live in the group home.

When Ingrid, a 26 year-old woman with cerebral palsy, moved into the group home she now lives in five years ago, she received a brochure that the staff had prepared and included in an information packet given to all new residents. The brochure said things like, "All people are sexual beings and have the right to a sexual life," "If residents ask, staff will help with counseling and the procurement of sex aids, or they will refer the resident to a sexual advisor," and "Staff are obliged to wash and clean used sex aids for residents." This brochure led Ingrid to ask a staff member about sex. "I didn't know I had a sexuality," Ingrid told me. "We had had some lessons about sex in the school for the handicapped I went to, but it was talk about how we had uteruses and would get menstruation. I didn't know I had a sexuality. So when I got here, I asked, and they told me, 'Yes, you do, and you can receive help to explore it if you want, and there is a lot of different kinds of sex aids that are available.' I was really happy to learn that, because I didn't know."

In cases in Denmark where sex arises as a topic and a staff member of a group home is not absolutely certain that he or she has completely understood the wishes of the person asking for assistance--because that person has no verbal language, for example--then another staff member will be called in. That individual will be asked to sit together with the person requesting assistance and the staff member who is agreeing to provide it. The staff member will ask the person requesting assistance to repeat his or her requests, and the third person will be asked to confirm the staff member's understanding of the requests. In the rare cases where neither staff member feels certain that they are able to understand exactly what the disabled person wants, they will do nothing until they are able to talk with the person more and feel confident that they do understand.

The point of these examples is to illustrate that whereas the realization that one cannot know the thoughts of another person paralyzes Swedes and justifies, for them, their retreat into inaction or obstruction, Danes who work with people with significant disabilities take risks. Like Swedish helpers, and like most everybody else, they cannot read minds. But they are willing to accept that uncertainty and extend themselves to engage with others--others whom they know they will never fully understand, but whom they nevertheless are able to recognize and acknowledge as fellow adults deserving of attention and dignity. They do their best to communicate, and to facilitate communication, even with people whose communicative capacities are restricted, and who cannot, without a great deal of intervention and help, speak for themselves.

Danish helpers recognize not only that people with significant physical and intellectual impairments may have erotic desires, but also that they require assistance to be able to understand, explore and express those desires. This recognition, and the active engagement that follows from it, does something important. It does not "speak for." It "engages with." It acknowledges both a fundamental sameness, but also, just as importantly, it responds to a crucial, irreducible difference. The space between that familiar sameness and the in many ways unknowable difference is the space of ethics.

Disclosure and Academic Self-awareness

Sociologist Tom Shakespeare, one of the leading disability studies scholars, and well-known in the field for his pragmatic, no-nonsense approach to a wide range of issues, has discussed the relationship between identity and research. Shakespeare has little patience with disabled activists and scholars like Fran Branfield who reject the idea that non-disabled people can or should study people with disabilities. "Just because someone is disabled," Shakespeare says,
   does not mean that they have an automatic insight into the lives of
   other disabled people. One person's experience may not be typical,
   and may actively mislead them as to the nature of disability.
   Because impairments are so diverse, someone with one impairment may
   have no more insight into the experience of another impairment than
   a person without any impairment ... The idea that having an
   impairment is vital to understanding impairment is dangerously
   essentialist (2006: 195).

Shakespeare doesn't address the issue of why there is so much disclosure in the disabilities studies literature, and in the book from which the above quote is taken, he discloses his own disability (achondroplasia, or dwarfism), as convention dictates, already on page 4 of his introductory chapter. He does this, however, not so much to claim a kind of identity-based pre-discursive authority, as to explain his own intellectual and social trajectory (the passage just quoted ought to make this clear).

Shakespeare discusses his disability, much in the same way that scholars like Rosemarie Garland-Thomson and Susan Wendell, whom I mentioned at the beginning of this essay, discuss theirs, as important and pertinent to his interests and perspectives.

And, indeed, it is indisputably highly relevant. But the question is whether, strictly speaking, it also is always necessary, or sufficient.

In my own case, growing up as an older brother to a sister with significant intellectual and physical impairments may have heightened my sensitivity and my perceptiveness to issues pertaining to disability. As I said earlier, I like to believe that my relationship with Kelly socialized me to be more empathetic and patient than I otherwise might have been, and that it helped me to be respectful and appreciative of difference. It unquestionably made me able to viscerally understand that common responses to disability among non-disabled people--responses like pity, anxiety, fear, and incomprehension --are usually the result of inexperience and ignorance.

However, none of that ideally instructional personal history precludes the possibility that I as an academic might still produce scholarship about people with disabilities that turns out to be patronizing, unimaginative, and pernicious.

Someone who had similar experiences to me growing up, for example, could very conceivably write a book about disability and sexuality in Scandinavia that praises Swedes, instead of critically taking them to task, as my coauthor and I do, for the way they decline to engage with the sexual lives of people with disabilities, because, you know, one can never be absolutely, 100% certain that one truly understands what people with significant disabilities really want, and therefore it is better to do nothing than risk doing something wrong.

That I am critical of the way Swedes engage with these issues depends less on my personal history and more on the fact that I designed my research around a comparison--one that ended up highlighting Swedish obstruction through a contrast with Danish facilitation. (I should perhaps add that the intensity of that contrast was not something my co-author and I anticipated. Because Sweden and Denmark are so similar in so many other ways, we thought that the two countries, in relation to this issue, would be more alike than they were different--an assumption we quickly came to see was utterly mistaken).

Self-awareness is a fine thing. Our social position, our identity and the way we are perceived by others clearly all play a vital role in how we live our lives and how those of us who are lucky enough to work as professional scholars become interested in particular questions and conduct our research to investigate them. But the proof of any insight, empathy, connection or progressive force that we might want to claim as academics, surely, is in the pudding: it is in the scholarship we produce and in the experiences, perspectives and problems that get

illuminated by that scholarship. Who we are, and what our personal history is, may matter a great deal or it may matter hardly at all. Who, at the end of the day, gets to say? And on what basis?

What assuredly does matter is the work we achieve. Tom Shakespeare's reminder that having a disability doesn't give anyone privileged insight into the lives of other disabled people is an observation that I imagine few people would dispute. But in the disability studies literature, acknowledgement of that self-evident truth is continually hedged by the incitement to disclose one's relation to disability. As I have discussed, part of the reason for that incitement can be found in the vicissitudes of how disability is brought into being in our society, and responded to--as an accusation that anyone associated with it must defend themselves against.

And part of the reason is also because of the continued anxiety that exists in the social sciences and the humanities around the problem of speaking for others; anxiety that is supposed to be quelled when one either is, oneself, a member of the group under discussion, or, alternatively, when one exhibits one's feminist/queer/postcolonial/crip bona fides by vouching explicitly that one has engaged in dialogue and listened respectfully to the speech of the other.

That sort of anxiety is chafing to an anthropologist like myself, because anthropology as a discipline is founded on the idea that one does not have to be a member of the group of people one studies in order to respectfully engage with and represent them (For the first few decades of the discipline there was an unwritten but strictly enforced rule that one in fact could not be a member of the group one studied--to study people from your own group was to do sociology or ethnology, not anthropology).

Like other forms of Western knowledge, especially, perhaps, those that originated in the 19th century, academic anthropology has a colonial past and it is implicated in, and has contributed to, exoticizing discourses that bolstered imperialist domination and the social and economic subordination of minority and non-Western subjects. And like those other forms of Western knowledge about others, anthropology took a serious knock in the 1980s, when postcolonial critics named Orientalism and regaled it, and when identity politics swelled, establishing the axioms about the problem of speaking for others that I have discussed in this essay.

But despite all the problems that every single one of its practitioners would probably readily agree besets the discipline, the premise--and the promise--of anthropology is that one not only can, but one should represent people who are very unlike oneself. The premise/promise of anthropology is that we learn from difference. Difference enriches. It disquiets, it expands, it amplifies, it transforms. And engaging with difference respectfully always necessarily entails a risk. The risk is partly political and epistemological (one might get it all wrong), but it is also personal--anthropological fieldwork is considered by its practitioners to be a transformative experience that renders one a different person by the end than one was when one started.

This transformative effect of an encounter with difference is the point I want to arrive at to conclude this essay.

In the literature on disability studies, the disclosure of disability or of a relationship with disability seems premised on an idea of stasis. Because the writer is a certain kind of person, or has particular kinds of relationships, his or her connection to experiences of disempowerment and marginalization is facilitated.

That might be true, or it might be true in some cases. But leaving aside cases where it might not pertain at all (where someone with a particular kind of disability--a spinal cord injury, for instance--feels no affinity whatsoever with, or even resents being lumped together with, groups who have other kinds of disabilities, for example people with Down syndrome), surely the opposite can also be true: one can connect to experiences of disempowerment and marginalization because one is not a certain kind of person or does not have particular kinds of relationships.

This is Iris Marion Young's point about asymmetrical reciprocity--that we can engage with difference without collapsing it into sameness. Asymmetrical reciprocity, I think, vividly characterizes the modality of engagement pursued by Danish group home staff members and other helpers who address the erotic lives of people with significant disabilities. Those helpers recognize sameness (adults with disabilities are adults, like them, and most adults have erotic desires and sexual needs), but they crucially acknowledge difference (disabled adults may need assistance to understand and realize their desires, and to fulfill their needs). The helpers do what they do not because they have a disability themselves (most don't) or because they are first-degree relatives of someone with a disability (some may be, but most aren't). They do it because they have a job to do. That job--which they do without feeling as though they are under any obligation to announce their personal relationship to disability--invites them to extend. It invites them to help generate and form an ethical space in which they take the risk of reaching out, to facilitate communication, responsibility (in the sense of both responsiveness and the refusal of indifference), engagement and care.

If academic self-awareness counts for anything, then surely its value lies in doing something similar. It lies in extending the self, not reaffirming it.

As academics, we too have a job to do. And while being a certain kind of person and having a certain alloy of identity or personal history clearly is never irrelevant to our job of scholarship, it cannot ever be enough to ensure that the scholarship we create will magically be free from faults or cushioned from criticism. The work I have produced about people with disabilities will not stand or fall because of the relationship I had with my disabled sister growing up. It will stand or fall because of the way the people I worked with transformed my engagement with the world, and on the basis of how I either succeed in conveying that engagement, or not.


Uppsala University


(1.) The capital 'D' in 'Deaf is a standard convention in this literature, signifying not just a hearing impairment but a cultural orientation.

(2.) Literature scholar Susan Schweik recounts a similar story, of hearing a lecture about disability that shocked and outraged her, and that led to her to undertake the research that led to the book The Ugly Laws: Disability in Public (2009: vii).


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Date:Nov 1, 2015
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