Nothing about Us without US (NAUWU)

By now, most people are familiar with the slogan “nothing about us without us” (NAUWU). As a call for disability justice, NAUWU was popularized by disabled activists in the 1990s. The slogan means that nondisabled people should not produce content about disabled people without involving disabled people. As James Charlton says, NAUWU is about controlling our own lives and narratives. Put differently, it is about taking responsibility for our choices and testimony, and demanding that others recognize our right to be responsible, to exercise control and agency. This fundamental human right is denied disabled people by ableist policies and practices. Charlton observes, “control has universal appeal for DRM [Disability Rights Movement] activists because the needs of people with disabilities and the potential for meeting these needs are everywhere conditioned by a dependency born of powerlessness, poverty, degradation, and institutionalization” (1998: 3). NAUWU is about reclaiming control over our bodies, minds, and culture. This includes having a controlling stake in narratives about disability. 

The principle of NAUWU is now widely recognized. The Unites Nations supports this principle, stating: 

The active involvement of persons with disabilities in the ongoing elaboration of a convention on the rights of persons with disabilities has proved to be an excellent example of how the principle of full participation can be put into practice and how it can contribute to the development of truly inclusive societies, in which all voices are heard and persons with disabilities can help shape a better world for all.

Charlton notes that “a remarkable and unprecedented paradigm shift has recently occurred which represents a historic break with the traditional perception of disability as a sick, abnormal, and pathetic condition. This shift poses a fundamental challenge to the ideological oppression of people with disabilities” (10). This remark was made in 1998. Such a shift would not have been possible if disabled people had not fought for control over their own narratives. As disabled people’s testimony shows, we are not dysfunctional, irresponsible, tragic figures. We are not broken versions of nondisabled people. We are complex individuals with complex experiences. These experiences include joy, love, kinship, responsibility, autonomy, and insight. 

This raises the question: did philosophers get the memo? 25 years after Charlton made his optimistic pronouncement about the cultural paradigm shift, philosophers are still writing about disabled people without including disabled people. Sometimes their intentions are good, but this makes no difference. NAUWU is about control. It says that disabled people should control the narrative about disability, which means that our testimony should be included in research about us. 

Returning to my previous point about responsibility, if we do not have control over our own narratives, we cannot take responsibility for our testimony because that testimony is being stolen from us. It is being written by nondisabled people who view us through a nondisabled lens. Our right to self-determination is being denied us by the able-bodied gaze, the perspective of the nondisabled observer who cannot help but view disability in relation to able-bodiedness. This self-referential perspective is what Maria Lugones refers to as “arrogant perception” (1987). Arrogant perception functions to limit the options available to the object of perception by viewing that object as less capable, less credible, less worthy, less responsible than the observer. The arrogant eye views women as “mutilated males,” queer people as perverted straight people, trans people as cisgender people in drag, and disabled people as impaired able-bodied people.   

Are disabled people responsible?

I could illustrate this point by reference to any number of philosophical discourses, but I will focus on the literature on responsibility because (i) it’s my area of specialization, and (ii) it paradoxically deprives disabled people of responsibility while purporting to improve our lives. That is, the appropriation and misinterpretation of our narratives is presented as caregiving!

I recently came across an edited volume called Agency in Mental Disorder: Philosophical Dimensions (2022),which discusses responsibility at length. Unsurprisingly, this volume refers to disability a lot. One of the disabilities discussed in this book is one that I experience: OCD. No less than six authors (Jesse Summers and Walter Sinnott-Armstrong, Justin Clarke-Doane and Kathryn Tabb, Katrina Sifferd, and Chandra Sripada) write about OCD, yet none of them, to my knowledge, has OCD (or any disability for that matter),* nor do any of these authors cite any testimony from disabled people, nor any crip theory. Instead, they define OCD in exclusively symptomatic terms, reducing it to a medical disorder. As a result, we find statements like this: 

As with other forms of OCD, the obsessions and compulsions can yield an intense focus that leads patients to neglect other moral duties, such as parental care. Are these patients fully responsible for moral failings caused primarily by their compulsions? Sinnott-Armstrong argue that patients with Scrupulosity are usually less responsible, because their extreme anxiety makes it difficult to be responsive to reasons to act otherwise, similar to how a back injury forces a parent to blamelessly miss a child’s piano recital. (King & May: 8)

Although neurotypical individuals similarly struggle to pay attention or stay on task as distractions pile up throughout the day, Sripada argues that those with psychopathologies—like depression, OCD, ADHD, and schizophrenia—experience many more impulses over time that become impossible to consistently regulate. (King & May: 9)

Two persons with OCD can have very different levels of impairment, depending on whether they have undergone treatment, are taking medication, and are within an environment that exacerbates or alleviates their symptoms. (Sifferd: 115)

The obsessional thoughts and urges in OCD illustrate a more general phenomenon that I claim is found in most mental disorders. We see in OCD three key features: (1) a massive population of pulse-type states; (2) the pulses are in some recognizable sense abnormal; (3) the presence of these abnormal pulses is a long-term feature of the person’s psychology. Going forward, I refer to this cluster with a convenient short-hand name: “CAPPs,” for chronic aberrant populations of pulses. (Spirada: 178).

These descriptions of OCD are characteristically negative. They raise the following questions about obsessive-compulsive people like me: Would I be an irresponsible parent? Do I have too many uncontrollable impulses to be trusted? How severe, how crippling, is my impairment? How aberrant is my brain? How abnormal is my thinking compared to a healthy person’s thinking?  

I want to emphasize that even if the descriptions of OCD throughout the volume were not (perhaps unintentionally) stigmatizing, the volume would still violate the principle of NAUWU because it doesn’t include obsessive-compulsive people’s testimony. Again, NAUWU is about control. It means that disabled people should control narratives about ourselves by producing them ourselves. NAUWU is about recognizing that disabled people, to quote Charlton again, “know what is best for themselves and their communities” (4). As such, OCD people know best how to live with OCD and how to interact with others with OCD. We have epistemic authority. 

Nonetheless, the majority of philosophical narratives about disabled people are produced by nondisabled people, and thus represent the able-bodied gaze and arrogant perception. Because disability narratives are mostly produced by non-disabled people, they are overwhelmingly negative. They treat disability as a medical condition that impairs a person’s ability to function, parent, hold a job, be a friend, and do other things that nondisabled people value. If this narrative were accurate, then how would disabled people have managed to radically transform society by demanding, strategizing, mobilizing, and fighting for inclusive design? Disabled people don’t just function in society, we rebuild it! We redesign and force nondisabled people to reconstruct the basic social infrastructure to include us. Blame us for causing trouble, for disrupting nondisabled people’s lives to demand inclusive design – we did that shit on purpose! 

Not only are we not deficient in responsibility, we’re responsible for cripping society. The weird and aberrant things we do, our abnormal ways of thinking, force nondisabled people to reconsider their preconceived notions about how society should be, how people’s brains should work. Our abnormal bodyminds call into question the dualisms and hierarchies that have been normalized and naturalized by able-bodied privilege. They challenge the hegemony of normalcy.   

Flipping the Script: Are Nondisabled People Okay?

Note that the impairment model of disability doesn’t just harm disabled people. It erases the downsides of nondisabillity, the reasons to worry about nondisabled people’s wellbeing. Let me flip the script and pose a question to nondisabled people. What’s wrong with you? Why do so many of you ignore NAUWU? Why don’t you write about disability pride and solidarity? Is it because you lack control over yourselves? Are your brains broken? Do you lack responsible agency? Can we trust you to parent your children? Where is your sense of kinship? Why is nondisabled society suffering a “crisis of loneliness”? Are you bad at relationships? Can we help you?   

Because the able-bodied gaze sees ability is inherently positive, it negates questions about “abled” people’s collective suffering. This includes being defined or interpellated by norms of individualism, workaholism, body negativity,  hubris, and other able-bodied norms. In queer spaces, it’s common to hear people ask, “are the straights okay?” Jane Ward (2020) wrote an entire book on the “tragedy of heterosexuality,” which illuminates the downsides of being straight, ranging from normalized sexism to compulsory breeding to predictably boring weddings. Disabled people can ask the same question: Are able-bodied people okay? Why are they so obsessed with the trope of disabled misery? Is this a form of over-compensation, a way of denying their ownsuffering? The academic fixation on “disabled misery” reminds me of the Shakespearian quote, “methinks she doth protest too much.” Are nondisabled people trying to prove to themselves that that they’re doing well? Is medical discourse a coping mechanism? 

These questions are silenced by able-bodied philosophy’s fixation on the specter of disabled misery. This bleak view of disability could be corrected by observing NAUWU, which would give voice to the positive sides of disability, including disability pride, solidarity, love, creativity, and determination. Rather than lacking responsibility, disabled people are super-responsible, insofar as we can more easily choose to live outside of the confines of able-bodied normativity – we can be proudly “abnormal.” Since we are already “aberrant,” we are less susceptible to the allure of able-bodied conformity. As Rosemarie-Thomson puts it, we are already denied the “resources and status” that come from nondisability as an “embodied form of social capital” (2015: 135), so we can chart our own path. The super-responsibility conferred by disability is obscured by the able-bodied gaze, which sees disability as a liability rather than, as Garland-Thomson argues, a virtue: “disabilities would be better understood as benefits rather than deficits” (2012: 339). We can use the benefit of disability to disrupt ableist epistemologies and geographies and create our own knowledge and culture, as we have done. We’re proud of the things we’ve accomplished, we take pride in our achievements, we’re responsible for what we do.   

Final Words

In sum, ignoring NAUWU is bad for everyone. It deprives disabled people of control over their own narratives. It perpetuates stigmatizing narratives of disability. It facilitates able-bodied hubris. It propagates the able-bodied gaze. It creates epistemic silos. This is a memo to able-bodied philosophers: Don’t write about us without us. Read our work, cite us, co-author with us.  

In closing, I want to announce that I have created subreddit called r/AreTheNondisabledOk? The mission statement is as follows: 

Have you heard of 2/AreTheStraightsOkay? This community is a nondisabled version of that. Nondisabled people tend to fixate on the ostensible “misery of disability,” ignoring disability pride, joy, kinship, and other positives. By the same token, they ignore the downsides of compulsory able-bodiedness, including the tyranny of normalcy, the boringness of nondisabled mediocrity, the heterogeneity of nondisabled bodies, etc. This is a place for disabled people and allies to question the narrative of disabled misery and ask, are nondisabled okay? Can they learn from disability pride, disability kinship, disability humility, and other advantages that come from occupying a place of disability?

My hope is that this subreddit will help to rebuke the dominant narrative of disabled misery and promote the narrative of disability pride. This is part of broader project of popularizing NAUWU. 

*****  

*If any of the cited authors are disabled, they do not say so in the volume, or invoke their experiences of disability in their analysis. Their academic websites don’t say that they have a disability.