7 minute read
TAKING DISABILITY PUBLIC
JASMINE E. HARRIS Professor of Law
In “ Taking Disability Public,” published in the University of Pennsylvania Law Review, Harris argues that strong privacy norms underwrite disability antidiscrimination law and policy. Preferences for protecting access to information about disability as a means of preventing disability discrimination, however, may actually prevent societal engagement with disability as a complex, socio-political identity and increase costs of compliance.
Disability as Private Conventionally, the prevailing associations with “privacy” are those of individual dignity and autonomy. Because legal doctrines and policies tend to conceptualize privacy as an individual concern, rather than a public interest problem, decisions to make disclosures and redress violations often remain with the individual. Both the rise of the public welfare system and state interest in its regulation have encouraged disability’s conceptual placement within the “private” sphere. Relatedly, the “medical model” of disability presumes a person is disabled by their own body, instead of by a lack of accessible public infrastructure, further emphasizing disability as an individual concern. Moreover, contemporary trends of the “optimized” workplace hinge on the idea of an “ideal worker” who performs the job in accordance with specific methods. This is challenging for employees who need accommodations to perform the same work in accordance with their individualized abilities. Further, because increased professionalization of human resources departments have afforded employees and their supervisors little discretion in making adjustments to accommodate for varying needs, employees with disabilities are often deterred from seeking and obtaining reasonable accommodations.
The Logic of Privacy
In describing why greater privacy could function as a prophylaxis for contemporary discrimination, disability antidiscrimination scholars put forth several theories.
Privacy law can be appealing in the context of antidiscrimination because it allows individuals to make their own decisions about self-determination and self-care, is easier to enforce than complicated disclosure regulations, and preemptively protects individuals. Moreover, privacy law can insulate people with less visible disabilities from disability discrimination that often manifests in harmful public scrutiny and prejudice. Additionally, maintaining disability privacy may help a person avoid algorithmic discrimination, which has grown in recent years as lawmakers have begun to use artificial intelligence to detect a person’s disability status and use it to monitor them and potentially exclude them from employment or enjoyment of public services and accommodations, believing that their disability creates a risk for society.
Further, contemporary antidiscrimination laws are highly imperfect and may not offer as much post hoc protection or meaningful remedies for post hoc discrimination that flows from disclosure of information about disability. Discrimination can be difficult to prove under laws that require proof of intent and causation. Privacy law, on the other hand, operates on a fairly straightforward factual inquiry of whether a defendant attempted to obtain protected information or had a duty to protect confidential information and failed to do so. Thus, for someone seeking a remedy for disability discrimination, privacy laws may offer blanket protection against inadvertent secondary disclosures of disability information.
Privacy Norms as Antidiscrimination Law
In the context of disability, different areas of the law “nudge” privacy by explicitly requiring secrecy, accepting the negative valence of disability as a “fact,” and by emphasizing the law’s role in remedying harmful disclosure.
Many disability adjudications happen in informal settings with little or no public access, for the purported reasons of preventing embarrassment and stigma. In many of these non-public proceedings, it is not even required for the person with the disability to be present, and official records are not available to review on legal databases or through public requests.
Across several scenarios, education law discourages disclosure of disability information beyond a strict “need to know” basis.
“[O]ften, schools use privacy laws as a sword to enforce social norms of disability as deficient and stigmatizing, or, paternalistically, in the best interests of young people to protect them against longterm risks associated with these social norms,” Harris writes.
In the context of disability, tort law is used to protect against and remedy the harm that comes from an unintended disclosure of a “private” fact, such as one’s disability status. This paradigm reinforces the idea that one’s disability is inherently negative information. Harris uses LGBTQ+ history to draw parallels between tort law’s treatment of LGBTQ+ identities as legally private facts and broader social oppression.
The Costs of Privacy
Our collective overvaluing of privacy has made it impossible to accurately measure societal disability — especially disability that is not “visible.” This has led to many misconceptions about disability, including false notions about its prevalence and homogeneity.
Particularly in the employment context, privacy in the context of disability often hurt people with disabilities and prevent them from securing work because employers fear potential liability. For example, empirical studies have shown that when job applicants choose to leave resume gaps unexplained, employers tend to be less likely to hire them on account of the ambiguity — so, although people with disabilities are not legally obligated to disclose their disability to their employer, non-disclosure often comes with significant risks.
Additionally, for a person with a disability who seeks benefits such as workplace accommodations, the ADA creates a “‘double bind,’” requiring the person to demonstrate both that they are qualified to
perform essential functions of a job and that they are “substantially” impaired. Not only does this exacerbate the binary understanding of disability as being either unreal or vastly incapacitating, but it also encourages employees with less visible disabilities to attempt to self-accommodate or “pass” as non-disabled to avoid getting stuck between the law’s conflicting requirements.
The Value of Publicity
“Outside of disability law, several privacy law scholars have moved away from a narrow framing of privacy as purely an individual right to self-determination by recognizing public interests at stake in the production and circulation of information,” Harris writes. “These discussions among scholars can help us better understand why some degree of privacy must exist in the context of disability identity and status but, perhaps most relevant to the disability space, why privacy is not absolute nor simply a matter of individual choice.”
Privacy, some scholars argue, functions not only as a private right but also as a public good, as it is difficult for any individual to have privacy without all individuals having a similar minimum level of privacy. In all, Harris argues that privacy discussions in the context of disability must be contextual and nuanced.
On the other side of privacy, publicity values offer crucial opportunities to reform social norms around disability. Embracing disability as a public issue can help to create a more inclusive society wherein people with disabilities can occupy the sociopolitical identity of having a disability without shouldering the burden of that identity on a solely individual basis.
Harris sets out a series of recommendations as to how to make disability more visible, beginning first with the need to collect more data on the impact that contemporary disability laws and policies have on society. Moreover, social science indicates that the workplace and higher education are the most impactful places wherein people with less visible disabilities can “come out,” thus suggesting that targeting publicity efforts in those two environments may offer the greatest opportunities to change social norms. Finally, Harris suggests alterations to threshold questions that categorize people as “disabled,” stronger discrimination protections for those who choose to disclose their disabilities, and procedural shifts in the burden of proof and persuasion in disability litigation.
