TAKING DISABILITY PUBLIC.

• Author: Harris, Jasmine E.

INTRODUCTION 1683 I. DISABILITY AS PRIVATE 1690 A. Defining Privacy 1691 B. How Disability Became a Private Fact 1693 1. Separation of "Public" and "Private" Spheres 1693 2. Disability as Dependency 1696 3. Medical and Health Law Frames 1698 4. "Scientific Management" and the Professionalization of HR 1701 II. THE LOGIC OF PRIVACY 1702 A. Self-Determination and Decisional Autonomy 1703 B. Avoidance of Disability Stigma 1704 C. Algorithmic Discrimination 1705 D. The Imperfections of Existing Antidiscrimination Laws 1707 III. PRIVACY NORMS AS ANTIDISCRIMINATION LAW 1708 A. Disability Antidiscrimination Law 1708 1. The ADA Definition of Disability 1709 2. The Tension Between the Disclosure and Confidentiality 1710 3. Treatment of Disability Identity as Proprietary Under the Rehab Act 1714 B. Procedural Law 1715 C. Education Law 1717 D. Tort Law 1721 IV. THE COSTS OF PRIVACY 1725 A. Privacy Obscures Prevalence and Diversity of Disability in Society 1726 B. Ambiguity Aversion 1730 C. Privatizes the Costs of Disability 1733 V. THE VALUE OF PUBLICITY 1736 A. Theoretical Re-Framing of the Interests/Stakes 1737 B. Publicity Values in Social Movements 1738 C. The Prescriptive Path Ahead 1742 1. Disability Data 1743 2. Choice Architecture and Publicity Nudges 1745 3. Disability Law Reforms 1748 CONCLUSION 1749 INTRODUCTION

Disability law has a complicated relationship with privacy. (1) A central normative assumption is that, whenever possible, information related to disability should be kept confidential to avoid discrimination. (2) Antidiscrimination law and society have expressed a preference for privacy in the disability context. As a result, laws in this area often reinforce disability as a private, undesirable fact, and regulate its disclosure. In contrast, the relationship between privacy and publicity is more nuanced in other areas of antidiscrimination law. For example, the law is neutral on the position of whether an individual capable of concealing their Blackness ought to favor disclosure or nondisclosure. (3) Partly a function of an accepted (albeit problematic) view that people can "see" race, many Black people lack the choice of whether or not to claim Blackness. (4) As a result, Black people might make different choices along a privacy-publicity continuum depending on the extent to which they manifest visible markers of difference.

Disability identity, however, finds itself clustered at the extreme privacy end of the same continuum. Disability laws nudge those capable of doing so toward passing or covering their less visible disabilities. While there are certainly benefits to disability law's preference for privacy--most notably, avoiding discrimination based on antiquated biases about disability--this strong privacy norm also has costs which we have not fully considered. For example, disability is also a sociopolitical identity with increasing salience in contemporary political discourse and a growing voting bloc courted by political actors. (5)

This Article challenges this principal normative assumption in disability law that privacy best serves both individual and structural antidiscrimination goals. (6) I argue that a preference for privacy-enforcing norms in disability law has generated Pyrrhic victories with underappreciated negative costs that stunt, rather than advance, the broader antidiscrimination mission of the law itself. (7)

Research on disability stigma and prejudice suggests that disability stigma is quite sticky, and while the built world has indeed changed, attitudinal shifts remain stagnant. For example, a recent longitudinal study of implicit and explicit discriminatory attitudes about sexuality, race, gender, skin tone, age, disability, and body weight revealed that, while explicit attitudes about all categories moved from negative to neutral and implicit attitudes about sexuality, race, gender, and skin tone shifted from negative to neutral or positive, implicit attitudes about disability and age remained static over the ten-year period studied. (8) Researchers attributed the rapid attitudinal changes in the context of sexuality and race to the publicity and public debate (called "societal priority") around these two areas of discrimination: "In the United States today, race and sexuality attitudes appear to be societally prioritized (e.g., through the Black Lives Matter movement or legislation about same-sex marriage) and therefore are more frequently discussed than other attitudes, such as age or disability" (9)

The Center for Disease Control estimates that there are sixty-one million people with disabilities in the United States (one in four adults), the majority of whom are not readily identifiable as disabled individuals. (10) Privacy masks the prevalence, differentiation, and pervasiveness of disability in society. This allows nondisabled (11) people to continue to narrowly associate disability with socially constructed aesthetic markers, such as wheelchairs, missing limbs, prosthetics, non-normative speech and behavior. (12) For these individuals--collectively, those with less visible disabilities--law and society aggressively nudge them to closet, pass, or cover disability identity to meet able-bodied and neurotypical expectations at great costs to physical and mental health, (13) relationships, (14) employment opportunities, and financial success. (15) Consequently, without a robust continuum of disability to draw on, the differences between people with and without disabilities are exaggerated and perceived to be immutable, tragic, and pitiful. This allows nondisabled people to claim visible and measurable distinctions that can delineate the deserving, legitimate minority of people with disabilities from those perceived to be malingering charlatans. (16)

Why should disability law be premised on catering to social norms? The answer is twofold. First, Congress identified the greatest barrier to inclusion for people with disabilities as antiquated attitudes and biases that associate disability with individual deficit, incapacity, and dependency. (17) Second, the remedial impact of antidiscrimination law in this area cannot be realized unless we address these deeply rooted biases that are taken for granted as "normal" or "justified." (18) Legal actors argue, frame, and interpret existing antidiscrimination laws according to their common knowledge and experience. However, as this Article contends, privacy has prevented the development of meaningful public discourse to develop an accurate common base of knowledge about disability needed to advance antidiscrimination efforts.

So how do we do attend to the information deficits in society about disability that undermine antidiscrimination efforts? In my last Article, The Aesthetics of Disability, I said we need to move beyond known or visible markers of disability which effectively define the scope of legitimate claims to disability rights. (19) Here, I take up the other end of the aesthetic spectrum, the overwhelming majority of people with disabilities in the United States who do not exhibit commonly accepted physical or behavioral markers associated with disability. I explore why publicity is central to the normative work that needs to be done, and how the design of disability laws can incentivize publicity while carefully balancing legitimate privacy interests. Dismissing publicity as contrary to individual self-determination, as lawmakers, courts, and society continue to do, ignores the structural constraints on choices available to people with less apparent disabilities as well as the negative individual and collective costs of "passing" or "covering." (20)

I join several current scholarly debates with transferrable insights for other areas of law and society. First, and principally, I challenge well-established assumptions about privacy and disability that permeate disability laws. Last year marked the thirtieth anniversary of the Americans with Disabilities Act (ADA), the central civil rights legislation for people with disabilities. Consistent with this milestone, I join disability law scholars in reflecting on the efficacy of the ADA and its remedies. While the ADA visibly transformed the architectural landscape for improved physical accessibility, (21) it has experienced significantly less success in shifting social norms of disability, such as the association of disability with deficit. (22) I part ways with scholars in this area by questioning the overreliance on privacy norms to do the antidiscrimination work without greater nuance. Second, and relatedly, this Article situates disability within the broader privacy literature by recognizing the collective interests at stake in this debate. I draw upon the privacy literature to argue for a more robust (and nuanced) analysis of privacy interests in the disability context. Third, this Article begins to explore the remedial value of publicity in disability law. In doing so, I join a broader discussion taking place in the civil rights and social movements literature where publicity continues to offer new possibilities for grassroots organizing, stigma reduction, and legislative reforms. I consider the #MeToo movement and the Dreamers as examples.

This Article unfolds in five parts. Part I argues that the law treats disability as private. Privacy was originally forced upon people with disabilities in an effort to segregate and render them invisible through legal regulation much like the experience of other marginalized communities in the United States. (23) Along the way, however, social progressives and some legal scholars have come to embrace the antidiscrimination properties of privacy as a more powerful prescription to address contemporary forms of discrimination--such as implicit biases, data mining, and surveillance--that are difficult to address through our existing antidiscrimination frameworks.

Part II then explains the logic of privacy norms in the...