In this paper, I address the question of public nondisclosure of one's relationship to disability within Disability Studies. I argue that we need to examine our reluctance to support public disclosure, open academic inquiries into public signifiers, encourage public disclosure, and use signifiers of one's relationship to disability in all Disability Studies contexts. I tease out the importance of public disclosure while maintaining personal privacy related to impairment information. I explore the embedded ableism in nondisclosure. And I challenge Disability Studies to address nondisclosure as a significant barrier in the field. Specific recommendations for disclosure surrounding our relationship to disability are provided.
I want to talk about why we, in Disability Studies, 3 don't talk about our relationships to disabilities. 4 Whoa, you say, we certainly DO talk about that. No, I argue, we skirt around it. We whisper the information to each other over coffee. But there are no standardized signifiers of our relationships to disabilities, no universal expectation of public disclosure, no support when people ask for public disclosure. In fact, it's just the opposite.
At my first Society for Disability Studies (SDS) annual meeting in 1991, I asked the workshop participants "Who is disabled?" Irving Zola, an SDS co-founder, took me aside and told me to never ask that again because "It makes people uncomfortable. These people are our friends, we need them [supporting Disability Studies]." I was speechless, a rare thing for me. My previous work in the disability rights movement taught me the importance of positioning oneself in relation to the lived disability experience, that ableism created different experiences for people with different disabilities, different levels of severity, for people in different close relationships to disabled people. The disability rights movement mandated publicly naming one's relationship to disability. I found Irv's comments very confusing.
As I attended more SDS meetings, I learned that a person's relationship to disability is often disclosed only within their social network. Professor Z might give a paper at SDS without stating any relationship to disability other than their 5 job title yet a few minutes later they are sitting in the hall sharing stories of their disabled partner. But if during the question period, I asked Professor Z "What is your relationship to disability?" it would widely be considered rude.
In this paper, I address this question of public nondisclosure. I argue that we need to examine our reluctance to support public disclosure, open academic inquiries into public signifiers, encourage public disclosure, and use signifiers of one's relationship to disability in all Disability Studies contexts. I tease out the importance of public disclosure while maintaining personal privacy related to impairment information. I explore the embedded ableism in nondisclosure. And I challenge Disability Studies to address nondisclosure as a significant barrier in the field.
Let me begin by explaining how disclosure works in the disability rights movement. When someone is invited to present to disability community groups, they are expected to locate themselves in relation to the lived disability experience. They might say, "I am a parent of a Deaf child," "I am blind," or "I am a doctor specializing in people with hemophilia." Their perspectives will be different based on their relationship to disability. A nondisabled family 6 member will have a different experience of the effects of ableism than a person with a disability. Someone who's lived for decades with impairments experiences ableism differently than someone with a recent disability. Each of these perspectives is valuable yet provides different glimpses of ableism. In disability communities, the different roles are acknowledged as providing valuable information. For example, in Deaf communities a person raised by deaf adults is frequently called "CODA" (child of deaf adults), a label that shows they hold specific knowledge and have a defined place in the Deaf culture (Children of Deaf Adults, 2013; Preston, 1995). While stating one's relationship to disability is welcome, people are also expected to present their own experiences and not that of someone else. When people attempt to speak for others, such as parents of disabled children presuming to know the lived experiences of disabled adults, then the usefulness of their information may be questioned (Yes, That Too, 2013).
Not to locate oneself is considered impolite—as if one's relationship to disability is unimportant. Within disability communities, acknowledging one's relationship provides valuable information to others in similar situations. It also shapes how people receive the presenter's information. The expectations for a disabled presenter talking about their own experiences are very different than what the audience expects from a nondisabled professional ally. Each location offers useful information and adds to the pool of disability community knowledge. Being accepted into the disability community provides access to valuable resources for successfully living with a disability—resources that are often only available among community members (Siebers, 2008).
Contrast this approach with Disability Studies where disclosure of one's relationship to disability is often considered to be private information. At the Society for Disability Studies conference, speakers typically present without ever disclosing their relationship to disability. Yet Tobin Siebers (disabled) challenges this thinking stating: "identity politics remains in my view the most practical course of action by which to address social injustices against minority peoples and to apply the new ideas, narratives, and experiences discovered by them to the future of progressive, democratic society" (2013, p. 321).
Why does Disability Studies not discuss relationship to disability? We allow everyone to present at conferences regardless of their relationship to disability so nondisclosure is not a factor there. Yet asking a conference speaker to name their relationship to disability creates embarrassment and discomfort. Are we holding tight to the academic preference for a neutral stance—i.e. any learned person can lecture on any subject? Are we equating the need for Disability Studies to be taken seriously in the academy with a desire to distance ourselves from our activist roots?
Even while we are reluctant to publicly disclose, we highly value the networking with others in similar relationships to disability that happens at Disability Studies events. When I was President of the SDS Board, I proposed that we skip one annual meeting so that SDS could engage in organizational development. The push back was immediate and forceful. People flooded me with testimonials of the life-changing importance of the annual meeting referring not only to the sessions but also to the equally important social encounters. One person said the SDS dance was the best four hours of their year. Multiple email comments testified that the value of the SDS annual meeting was directly tied to people's personal relationship to disability. The meetings could not stop precisely because of the opportunities to relax and network with people with similar relationships to disabilities.
This article examines this phenomenon of nondisclosure or "privatizing disclosure." I contend that Disability Studies, consciously or unconsciously, bends to ableist beliefs of valuing the unimpaired body through socially enforced strictures of nondisclosure. I explore the ways that the phrase "relationship to disability" opens possibilities that are shut by the binary "Are you disabled?" I proffer signifying labels for relationship to disability, discuss challenges to disclosure, identify benefits to widespread disclosure, and propose a new level of transparency for Disability Studies.
What is your Relationship to Disability?
Posing the inquiry as "What is your relationship to disability?" opens many doors that "Are you disabled?" closes. In Disability Studies we typically use the shorthand of disabled-nondisabled even while acknowledging the severe limitations of the binary, which doesn't have room for recognizing the spaces in between, spaces that many people occupy. Too often adhering to the rigid binary of disabled/nondisabled forces people into uncomfortable positions of nondisclosure that mask their own important relationship to disability. For example, at a national gathering of 120 feminists, when asked to join either a disabled or nondisabled group, over one third of the participants chose to create a group called "not sure." 7 These women all had significant impairments that impacted their everyday lives but they refused the "disabled" label because, in their view, it put them outside the privileges of the nondisabled world. Many, if not most, people who acquire significant impairments perceive the "disabled" label as challenging and sometimes unwelcome (Solarz, 1999). These women saw the label "disabled" as externally imposed and negative and thus chose not to use it.
"What is your relationship to disability?" creates spaces for new engagements. People might choose to remain with the binary labels of disabled and nondisabled but they might also select to name their familial relationship (spouse, sibling, parent) or work relationship (co-worker, teacher of Disability Studies) or political relationship (advocate, ally). This article continues a dialogue that is well-developed in other activist-related disciplines, such as Women's Studies and Ethnic Studies, but is less developed in Disability Studies. What I propose to do here is to expand the discussion beyond the identity binary and explore the advantages of that expansion.
Within Disability Studies people's relationship to disability may or may not be widely known. Typically people's professional relationships to disability are known, particularly if they teach or publish. For example, Kim Nielsen 8 (nondisabled) is an American history professor who teaches Disability Studies courses. The fact that Kim is also the parent of a person with a disability, but only became so after being in the field for nearly a decade, may be shared with close friends and may be known within small subsets of professional circles but may not be widely known. This dichotomy of information is typical in Disability Studies circles.
In this article I argue that one's relationship to disability is important public information within Disability Studies. Our choice to maintain a professional/public stance versus relationship to disability/private mentality is problematic. If we, as a profession, tout that "disability as an identity is never negative" (Siebers 2008, p. 4) then why would we want individual relationships to disabilities to be private?
There seem to be two categories within Disability Studies—people whose relationship to disability is publicly known and those whose are not. Disability Studies depends on the public disclosure in framing curriculum (e.g., this reading is by disabled writer Anne Finger); in identifying the writings that are within the discipline (i.e., no Disability Studies curriculum would include only writings by people who never identify their relationship to disability); in hiring speakers; and in growing the field. Many of the people who are publicly identified have visible disabilities where there is not a choice of public disclosure, at least at the simple "disabled" level. Others write about their relationship to disability in Disability Studies publications. To a great extent, Disability Studies depends on at least some of its scholars to publicly disclose.
Posing the Question
The discomfort with talking about one's relationship to disability is not new in Disability Studies. In the late 1990s Paul Longmore (disabled), Simi Linton (disabled) and I created a plenary panel to address the nondisclosure of relationship to disability in Disability Studies. We each spoke about the ways in which our visible differences positioned us when we taught Disability Studies. We also addressed the ways that nondisclosure allowed the field to avoid discussions of ableism and privilege. As the only unemployed panelist, we agreed that I would say the least popular comments such as "Until there are more disabled people teaching Disability Studies, then jobs should be prioritized for people with disabilities." When we finished speaking, the room erupted. People stood and began to shout at us. The moderator focused the group on questions and comments, many of which shared a theme of outrage.
"How dare you tell me not to teach a class on disability." One person stated. "I am the only person on my campus teaching anything on disability. There is no one else to do it. I'm not going to stop just because I am not disabled." Many heads nodded in agreement.
"I don't need to tell anyone my personal business in order to teach a disability studies class," said another person referring to their impairment.
"We're all committed to the same thing," said another person, "teaching Disability Studies. It shouldn't matter who is teaching it."
This first public discussion of disability nondisclosure at SDS angered a lot of people. SDS members blamed panelists for upsetting some SDS members and specifically named people who "left the field because of what you said." My hopes for dialogue evaporated. Instead condemnation ensued. Support for the panelists' positions went underground and after a period of blaming, the conversation ceased.
Undaunted, we continued to discuss disclosure at Disability Studies events but were kept far from any microphones. When the opportunity arose to write for this special issue of DSQ, I took the opportunity to re-investigate.
In researching this article I spoke with a number of Disability Studies scholars. Each person communicated clearly their personal relationship to disability by telling me "My spouse is disabled" or "I am a nondisabled ally," etc. But many of these same people did not have a publicly known relationship to disability separate from their job. So while Professor A is widely known as a professor of Disability Studies the fact that they grew up with disabled parents is not public. Professor A, who is perceived as nondisabled (and who may or may not be nondisabled), masks their experience of years of daily contact with disabled parents. I argue that the knowledge gained by living with a disabled person provides significant insight into the workings of ableism. When A's relationship to disability is publicly unknown, this information remains invisible. How many other Disability Studies scholars grew up with disabled people and could benefit from A's knowledge and insights? How might A's experiences frame their research interests?
When I told them that I was giving signifiers to each Disability Studies scholar named in the article, many were horrified, even after I explained that I would only use simple modifiers—disabled, unknown, nondisabled. Reactions ranged from the personal ("you cannot just 'out' people") to the professional ("you will be setting Disability Studies back 30 years"). This section explores these reactions and posits some underlying concerns.
Let me start addressing these statements by quoting Eli Clare (disabled) who always helps me disentangle overlapping complexities: "gender reaches into disability; disability wraps around class; class strains against abuse; abuse snarls into sexuality; sexuality folds on top of race…everything finally piling onto a single human body" (1999, p. 123). Eli's writings remind us that no one facet of our lives is definitive. There are always overlays and interplays.
Unlike Eli, the scholars I spoke with argued for simple, quiet separations of body from politics, community, history, and ableism. They want one's personal relationship to disability to be private, separate from their Disability Studies work. They tout language that is meaningful to me, pulling on my queer heartstrings, beseeching me to see the injustice of asking people to disclose their relationship to disability. "You cannot 'out' 9 people," they cajole. The irony of the fact that they are using queer terminology, that they are queer allies, that they are not queer, is not lost on me. Why does it feel like they are asking me to stop this discussion? Because they are.
Yet I am touched by how deeply they are disturbed by my simple request. What are the fears that are not obvious to me but are raging within them? When I asked for clarity, people mumbled inarticulately, "You just can't do it." I feel the fear. I acknowledge the concern. But I don't know how to find common ground. Talking about this feels like wrestling with an octopus. At any one point only one arm is visible. Sometimes I get glimpses that might be shame, another time it seems to be fear. Shame and fear about what? That people would know your relationship to disability? In Disability Studies?
Even after I state that in this article I am only using publicly available information to name a person's relationship to disability, they reiterate their objections. Is public disclosure in one place not supposed to carry over to other Disability Studies environments? Is that a half-step between nondisclosure and public disclosure—this limited disclosure? Am I asking too much for each person to place their "single human body" (Clare, 1999, p. 123) in relationship to disability?
It is interesting to note that no one objected to my signifying someone as "nondisabled," as if that was a neutral signifier. Yet "nondisabled" is always associated with able-bodied privilege. Is it because "nondisabled" equals "societal norm?" Because "nondisabled" means unexceptional? As some disabled bloggers point out, "nondisabled" has a specific set of cultural behaviors that can be defined, and in some cases, parodied (Saydrah, 2008; Wij zijn Speciaal!, 2013).
The other major objection they raised is that Disability Studies will lose status in regards to other academic disciplines if we now, at age 27, open multi-layered conversations about relationships to disabilities. Disability Studies is a discipline that lags far behind other activist-related disciplines where identity discussions took place over decades. Our field will not be harmed by open dialogue. We need to grow from where we are. Our beginnings avoided these questions. We are a mature enough field that we can open these topics to scrutiny.
If Disability Studies supports the notion that being disabled is a positive experience, something that expands and enriches notions of "person," then why the fear and trepidation about public knowledge of one's relationship to disability? I believe that Disability Studies does not embrace the image of a positive experience but is still holding onto medical model stereotypes. Medical information is private. Within Disability Studies, I argue that disability status is not private information, but is an important part of public dialogue about the effects of ableism and how our position in relation to disability informs our experiences of it. In encouraging nondisclosure I am respecting people's need to keep medical information private. But I am also asking them to state a relationship to disability, because that information is beneficial to Disability Studies. It is when we conflate impairment information with relationship to disability that we allow the medical model to frame our discipline.
I am asking that our individual relationship to disability becomes public information, not our individual impairments (if any). While I find great benefit in knowing other people with shared impairments, I acknowledge the extensive oppression faced by people with highly stigmatized impairments. I do not wish to increase anyone's discrimination. I explore this more below.
Relationship to Disability
The lived experience of impairment provides invaluable insights into ableism and ableist privilege (Dreger, 2004). When people accompany me as my wheelchair rolls through public spaces, they are often shocked by the daily intimate microaggressions I encounter. I rarely get to use the regular (i.e., nondisabled) entrances, paths of travel, or services provided without a "special" work-around—a separate entrance, the need for a guard to escort me through locked staff areas, high counters that require me to have assistance, etc. People often assume that the existence of disability laws, such as the Americans with Disabilities Act, solved the problems. It is only through traveling through a public space with a disabled person that they realize the gap between legal rights and lived experience.
For a simple example, I suggest that we start to think about relationship to disability through the lens of contact with people living with impairments. Some designators might be "disabled," "family member," "political ally," "educator," "colleague." This uneven trajectory from lived experience to daily in-home contact to public contact is incomplete. The daily experience of ableism is directly tied to the severity of the impairment, the visibility of the impairment to strangers, the level of daily care needed to manage the impairment, the age of onset of the impairment, the financial resources available, etc. Each of these factors impacts the level of cushioning available for the disabled person and by extension their family and friends.
Whether or not one appears disabled to strangers influences the ableist privilege one has. Much is written about "passing" in Queer Studies and Ethnic Studies (Sedgewick, 1990; Sycamore 2006) but much work is still needed in how it is evidenced in Disability Studies. The severity of the impairment and the ability to manage it without assistance directly contribute to one's ability to participate in the nondisabled, dominant culture. Access to financial resources provides enormous mitigation of impairments. With financial support one can have the health care, medication, equipment, and support that is needed. For example, public health benefits only cover one hearing aid every three years severely limiting a person with bilateral hearing loss. The ability to purchase two hearing aids that work best for one's hearing loss mitigates the impairment, thus allowing fuller participation in the nondisabled world.
Choosing discipline-wide descriptors is the work of future scholars. This article barely begins that conversation. Our existing default is that the "disabled" label is only chosen when someone has crossed over from the nondisabled to the disabled world. This practice eliminates and makes invisible the vast majority of Disability Studies scholars living with permanent impairments. It also marks the "disabled" point only at the severe end of the impairment spectrum. We need language to include a wide range of permanent impairments, language that embeds nuance and mutability, language that opens doors not locks them. Our chosen terms need to honor the directness of experience with impairment and ableism.
Family members hold a unique place in relationship to disability. They see the public and private sides of the effects of impairments. Through the Looking Glass (2013) is an agency founded by spouses Megan (nondisabled) and Hal Kirschbaum (disabled), both clinical psychologists. In their work with families where one person has a disability, they describe their clients as being: "families with disability issues in parent or child which integrate expertise derived from personal disability experience and disability culture" (para. 1). This description credits the connection people have with disabled individuals as well as disability communities. Direct connection with a person in an oppressed group brings the otherwise privileged person into situations that challenge their privilege. For example, when my nondisabled ex-partner told her family about dating me, her family barraged her with reasons to stop the relationship. Unable to name their own discomfort, they named "caregiver burden" as their main objection even knowing that I do not need assistance with everyday activities. They clearly saw that her contact with me would lessen her ableist privilege.
We need language that respects the lessons learned by nondisabled family members who live with disabled people. Their interactions with health care, education, social services, faith communities, as well as other family members shows them a depth of ableism that is not experienced by nondisabled people who do not live with disabled people. Lumping them into the "nondisabled" end of the binary obscures this important knowledge.
While we need to acknowledge the intimate experiences of ableism gained by people living with disabled people, we also need to clarify the ways that nondisabled people have ableist privilege even when they experience ableism daily through their family member. In recent blogs by autistics 10 there is concern expressed about the trend by some parents of autistics to state that their experience is equivalent to the autistic experience. (Yes, That Too, 2013). The writers note the ways that conflating lived experience of disability with being a family member masks the severity and immutability of the discrimination and barriers faced by autistics every day. Language is needed to clarify and position these relationships.
Some Disability Studies scholars are not disabled nor are they family members. Some people currently have daily or weekly contact with disabled people, while others have less contact. Often the level of contact changes. Language is needed to explore these relationships.
Regardless of the terms, we need to build flexibility into any linguistic or conceptual choices we make. For most people disability is not a stagnant experience. Even when the disability is not typically progressive, the effects of aging, support, and environment impact the ways that the disabled body changes. When I was a child I walked with two leg braces, an abdominal corset, and wooden underarm crutches. By college I walked with just one cane. At age 30 I began using a manual wheelchair outside my home and walked without assistance inside my home (a very confusing concept to explain to people). By my mid-40s I used an electric wheelchair to travel distances, a manual wheelchair around the house, and crutches for the rare visit to an inaccessible home. To say I was "disabled" throughout my life does not reflect any of these great variations in my levels of impairment, the public perception of my impairment, and how the different perceptions affected the people in my daily life.
Descriptors not only tend towards the static they also tend to rigidify and lock in the object of the description. For example, I am disabled, a parent of a disabled child, was a partner of a disabled woman, a caregiver of a disabled person. I am also queer, white, old, and poor. Each of these descriptors identifies but a small part of me and none of these provides insights into the complex intersections of holding these multiple locations.
Finding useful descriptors is only one aspect of teasing out the ways that ableism performs in Disability Studies. Often, I am asked to let just one part of my experiences be present. For example, people have asked me, "Why talk about class at SDS? This conference is about disability, not poverty." But I cannot separate these two aspects of my experience: my disability-related poverty and living in a disabled body. Edward Ndopu (disabled, 2013), a self-proclaimed "Queer Crip Femme Man of Color" answers the challenge this way:
I feel compelled to make it known that I do not move through the world as sometimes black, sometimes disabled, sometimes queer, sometimes femme, sometimes male and sometimes Afropolitan. I move through the world embodying all of those identities at the same time, all of the time (para 1).
Ndopu reminds us that we are complex beings. Binaries such as "disabled/nondisabled" are not definitive of our experiences or identities. Yet these terms are not irrelevant. I would like to share an example of the complexities of multiple identities in Disability Studies which Nirmala Ervelles (nondisabled) has generously allowed me to use.
Nirmala and I are friends and colleagues in Disability Studies. We care deeply about the ways that ableism creates hierarchies of oppression and privilege, and we share commitments to addressing ableism in our work and our personal lives. Yet we also acknowledge that we come to Disability Studies from very different and complicated places. Nirmala is a 46-year-old nondisabled heterosexual immigrant woman who came to the United States from India for graduate school to advance her skills teaching about disabled people, married an African American man, and is currently a professor of Education at a major university. She also carries deep and painful memories from her husband's experiences with brain cancer. We both have daughters of color. Mine is physically disabled; hers is nondisabled. Our experiences with the educational systems show us the radically different opportunities offered to disabled and nondisabled children of color.
Nirmala and I are fierce colleagues fighting side by side against ableism. But at no point do we think that our differences are unimportant. Our differences shape not only who we are but also how we see our work, which opportunities are available to each of us, and our roles in Disability Studies. For me participating in Disability Studies is a direct outgrowth and connection to my disability rights activism. Nirmala sees Disability Studies in connection to other oppressed groups with footholds in the academy.
With each other Nirmala and I share community, connection, collaboration, and commitment. We could not have created these bonds without doing the hard work of talking with each other about our individual relationships to disability. Navigating this terrain can be very difficult. But without doing so, we cannot create true political change. As Gloria Anzaldúa (disabled, 2007) writes:
[O]ur psyches resemble the bordertowns and are populated by the same people. The struggle has always been inner, and is played out in outer terrains. Awareness of our situation must come before inner changes, which in turn come before changes in society. Nothing happens in the "real" world unless it first happens in the images in our heads (p. 87).
To Anzaldúa's words, I would add that the only way that we can change "the images in our heads" (p. 87) is by disclosing and discussing our relationships to disability.
Challenges to Disclosure
Publicly naming our relationship to disability is not always easy or comfortable. Without clearly defined and agreed-upon descriptors, finding an appropriate identifier can be challenging. For example, if I do not appear to have an impairment but I say "I am disabled" does that mean I have to disclose my impairment? If yes, do I have to say something about the severity of the impairment? What about my reasons for choosing this signifier? Does this mean that other people can ask me questions about my impairment?
The statement "I am disabled" is complete and does not necessitate an impairment discussion. In the same way, "I have a disabled family member" does not open the door to questions about either my relationship to that family member nor information about their impairment. I am reminded here about the often-discussed intrusive questioning by strangers to disabled people in public places, typically framed as "What's wrong with you?" While at first it might seem challenging to dampen curiosity, in fact we already know that it's permissible to ask a general question but not to ask for intimate details. With practice, accepting someone's answer such as "I'm a nondisabled Disability Studies scholar" will become accepted.
"But what about stigma? Impairment hierarchies? Personal choice?" people squeal when I propose public disclosure. I am mindful of these challenges, which is why I am omitting impairment information from my request for public disclosure. Some Disability Studies scholars with highly stigmatized impairments publicly disclose—Margaret Price (madness, 11 2011), Chris Bell (HIV, 2006)—providing much needed role modeling and resources for people with similar impairments. Yet they do so at great personal and professional cost. Until or unless Disability Studies willingly accepts the role of fighting ableist discrimination for each scholar who publicly discloses impairments, then I do not ask scholars to offer impairment information publicly.
Some people tell me that they are concerned that people will exaggerate or falsify their relationship to disability. I am not worried. Each person knows the depth of their own experience and knows what signifier is most appropriate at that moment. For people with multiple relationships to disabilities, a different signifier may be appropriate in different situations—or at least the order of signifiers may change. When I speak to parents, I often put my "parent of a disabled child" ahead of my other signifiers. While I argue that impairment information is private to the person affected, I contend that Disability Studies must move beyond the medicalization of the disabled body and address the positions of scholars within Disability Studies.
What can be Gained by Revealing our Relationship to Disability
One significant benefit of public disclosure is to challenge the shame typically associated with identifying with disabled people. Many people fear becoming identified with disability (Hollis, 2013). Disability Studies scholars choosing public disclosure of their relationship to disability symbolically demonstrate the positive value of the disabled experience—most especially when the person disclosing appears to be nondisabled. This shakes up the perception that disabled people are easily identifiable and undesirable. It also expands the number of people discussing disability in positive and informed ways—much like the ways that gay rights conversations spread when non-queer people publicly state their relationships to LGBTQ 12 people. Ableist privilege is so pervasive that it's hard to imagine the world without it (Siebers, 2008). Public disclosure of relationship to disability increases the number of people discussing and identifying disability oppression.
Public disclosure creates opportunities for people to gain knowledge. For example, I am widely known as a disabled person who is also the parent of a disabled person. I am often contacted by Disability Studies scholars with questions about that experience. Perhaps they need to know how parenting affected my disability, or they want strategies for dealing with ableism in public schools. Whatever their concern, they come to me because I am publicly identified.
Certain, and often very important, information resides within networks of people with shared relationships to disabilities such as strategies for successfully handling discrimination barriers; locating disability-positive professional services; identifying effective resources; finding support; and sharing culture. The depth of these resources is rarely apparent to people outside the community but are openly shared with people who identify their relationships with that impairment community. Publicly identified members of those communities are the bridges from the nondisabled world.
When people state relationships to disability, they "win tangible benefits freeing them not only from the violence, hatred and prejudice directed toward them but also providing them with both shared experiences to guide life choices and a community in which to prosper" (Siebers, 2013, p. 281). This is not to imply that ableism disappears but to acknowledge that when one moves from isolation to community, group resources provide invaluable support and strategies.
As the founders of SDS discovered, working communally creates opportunities for social change not available on the individual level. A few professors scattered across North America had little academic impact; an organized group of professors, students, and community activists created Disability Studies. So, too, does public disclosure of one's relationship to disability open new possibilities. Imagine a Disability Studies gathering where standardized signifiers are public knowledge. Parents could find other parents, allies could discuss strategies, entire fields of inquiry could develop from these networks. Most importantly for me, much larger numbers of people would be publicly naming ableism and its effects.
Oppressed people carry the burden of being the visible markers of their community and therefore experiencing the severest effects of discrimination. Public affiliation by people without obvious markers of disability creates huge opportunities for alliance with disabled people, educating people who are enacting ableist beliefs, expanding our base of knowledge, providing new role models, and creating new opportunities for theorizing and discourse.
If we are to publicly name our relationship to disability, then we need some standardized mechanisms. I am proposing a radically new way of participating in Disability Studies. I suggest that we discuss and define public signifiers and propose a few to start our discussion: disabled, family member, professional colleague, non/disabled professor of Disability Studies, disability rights ally (or advocate). I am also suggesting that as we standardize signifiers, that we include them in all our Disability Studies work. For some scholars it will be slight modification of their existing public information, for others it will be an entirely new experience. For example, many scholars already state they teach in Disability Studies but rarely state their relationship to disability.
It is important that the signifiers carry throughout people's public Disability Studies work. Otherwise we would have the same challenge that we face today—where a scholar's public disclosure is limited to one lecture or publication. Universal public disclosure ensures that the conversations and education gained from using public signifiers carries across all their Disability Studies work.
This article took 22 years to write. As a participant at my first SDS in 1991 I asked the workshop participants "Who is disabled?" and was chastised for asking. A few years later, on a panel with Paul Longmore (disabled) and Simi Linton (disabled), I raised the question again. Shouting, tears, and angry door slamming ensued during the question and answer period. While I limited myself to the disabled-nondisabled binary in framing the question, my intent was to gain insight into the reasons for the lack of public disclosure of relationship to disability in Disability Studies in direct contrast to the open disclosing within disability rights communities. Yet the SDS meeting rooms seemed incapable of having a public discussion on this issue. Even in my recent conversations with Disability Studies scholars the resistance to disclosure remains strong. Disability Studies still does not have a calm way of discussing this. I sincerely hope that my effort here creates openings to further dialogue.
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- Siebers, T. (2008). Disability theory. Ann Arbor, MI: University of Michigan Press.
- Siebers, T. (2013). Disability and the Theory of Complex Embodiment. In Davis, L. (Ed.), The Disability Studies Reader. Fourth edition. (pp. 275-282) New York: Routledge.
- Solarz A. (Ed). (1999). Lesbian Health: Current Assessment and Directions for the Future. Washington DC: National Academy Press.
- Sycamore, M. B. (2006). Nobody passes: Rejecting the rules of gender and conformity. Emeryville, CA: Seal Press.
- Through the Looking Glass. (2013, Feb. 12). "Mission." Through the Looking Glass. Retrieved from http://www.lookingglass.org/who-we-are/mission
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I am grateful to all the Disability Studies scholars who discussed these issues with me over the years. I am particularly indebted to: Tanis Doe, Carol Gill, Harilyn Rousso, Simi Linton, Alison Kafer, Susan Schweik, Mel Chen and Nirmala Erevelles.
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Throughout this article, I give each person a designator of "disabled," "unknown," or "nondisabled," The information for this designator is based on publicly available information provided by the person. In addition when choosing identifiers, I intentionally chose language that is preferred by the oppressed group. Capital "D" Deaf is used to signify that a person is a member of the cultural and political Deaf community (lower case "d" deaf would indicate just the presence of a hearing impairment).
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For the purposes of this article, "Disability Studies" means the organized network of Disability Studies organizations, publications, listserves, courses, and conferences that occur in the United States. These include but are not limited to: Society for Disability Studies, Disability Studies Quarterly, The Review of Disability Studies, SDS annual meeting, DisHUM (disability in the Humanities), H-Disability (disability history), etc.
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I first heard this phrase "relationship to disability" in a conversation with Mel Chen. I was struggling with how to frame this article and asked Mel to talk through some ideas with me. Mel graciously agreed and we spent two hours teasing out ideas. While Mel provided me with this phrase, we did not discuss how I might use these words. Mel may or may not agree with how I am using it.
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I also choose to use gender-neutral pronouns specifically "they" and "one" in place of the more limiting "s/he." My decision follows the guidelines of the National Center for Transgender Quality's publication Opening the Door transequality.org/Resources/opening_the_door.pdf. Similarly I avoid using sense-specific language, particularly when it connotes a negative. So I use "nondisclosure" not "silence;" "stating" not "reading/talking," etc. Writing this way is not a bow to political correctness, but is a conscious attempt to be a less oppressive ally.
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"Family" in this article includes people who consider themselves family whether or not that relationship is legally recognized.
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The author attended this meeting of the Women's Committee for the American Friends Service Committee in Philadelphia in the late 1980s.
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Kim Nielsen kindly gave permission for me to include this example.
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"Outing" is a term used in queer communities. If a newspaper published the name of a person who is believed to be heterosexual and said they are gay, then the newspaper would be "outing" that person. "Outing" is considered giving people a stigmatizing label (in this case "gay") without their permission.
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As with the rest of the article, I am following the conventions of the disabled people I am discussing. Autistics prefer to be called "autistic" and perceive the term "people with autism" as an allistic (non-autistic) phrase.
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As per endnote #2, "madness" is Price's preferred language.
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LGBTQ means Lesbian, Gay, Bisexual, Transgender, Queer (sometimes Questioning).
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