SURVEILLING DISABILITY, HARMING INTEGRATION

SURVEILLING DISABILITY, HARMING INTEGRATION

Scholars, policymakers, and the media acknowledge that surveillance can threaten privacy and increase the risk of discrimination. Surveillance of people with disabilities, however, is positioned as being a convenient way of averting a host of problems: It can be seen as a way to protect people with disabilities from abuse and neglect, to prevent Medicaid fraud, and to proactively protect school communities from mass shootings. Increasingly, as surveillance systems become more sophisticated, state and federal laws have begun sanctioning, and occasionally mandating, the surveillance of people with disabilities for these purposes.

This Essay interrogates narratives that justify the increased surveillance of people with disabilities by analyzing them through the lens of the Americans With Disabilities Act (ADA) and its integration mandate. The ADA expresses a clear goal of preventing the unnecessary segregation and isolation of people with disabilities. To achieve this aim, states must provide services, programs, and activities in the most integrated setting possible. Looking at laws and policies that mandate surveillance through the lens of integration draws attention to their oppressive and isolating effects.

This Essay breaks new ground by centering disability discrimination in its analysis of surveillance. It is the first to demonstrate how ostensibly benevolent surveillance systems embed punitive, carceral practices within therapeutic and community-based settings. It yields new insights about how surveillance systems deployed within a community can result in a constrained and superficial, rather than expansive, idea of integration.

The full text of this Essay can be found by clicking the PDF link to the left.

Introduction

In February 2022, New York City Mayor Eric Adams unveiled a new plan to get unhoused people off the streets, out of the subway system, and into hospital beds. 1 City of N.Y., The Subway Safety Plan 4 (2022), https://www.nyc.gov/assets/home/downloads/pdf/press-releases/2022/the-subway-safety-plan.pdf [https://perma.cc/9F7T-4V4S] [hereinafter City of N.Y., Subway Safety Plan] (“We must immediately help New Yorkers struggling to take the first step towards a better future—a journey that the City will coordinate every step of the way, from their first moment out of the station to ongoing care and a permanent home.”); see also Eric Adams & Jessica Katz, Housing Our Neighbors: A Blueprint for Housing and Homelessness 47 (2022), https://www.nyc.gov/assets/home/downloads/pdf/office-of-the-mayor/2022/Housing-Blueprint.pdf [https://perma.cc/Q64P-EUEN] (“In February 2022, with the release of the Subway Safety Plan, the Adams administration announced cross-agency outreach initiatives to better connect with unsheltered residents and help them access shelter options that work for them.”). The plan is multipronged and involves “grow[ing] the number of acute psychiatric beds” at hospitals, 2 City of N.Y., Subway Safety Plan, supra note 1, at 13. criminalizing conduct like sleeping in subway cars, 3 See id. at 6–7 (noting that there will be increased police presence at subway stations to enforce Metropolitan Transit Authority (MTA) and New York City Transit Authority (NYCTA) rules that prohibit “[l]ying down, sleeping, or outstretching in a way that takes up more than one seat per passenger or interferes with fellow passengers”). and increasing police presence in subway stations. 4 See id. at 7 (“More than 1,000 additional officers have already been deployed across the system.”); see also Adams & Katz, supra note 1, at 47 (noting that “the Adams administration announced cross-agency outreach initiatives to better connect with unsheltered residents”). This plan expands surveillance of unhoused people with disabilities in New York City by increasing police oversight in public spaces 5 See City of N.Y., Subway Safety Plan, supra note 1, at 7. and permitting information sharing between city agencies to facilitate hospitalization and treatment of people who are deemed unable to meet their “basic needs.” 6 See Mental Health Involuntary Removals, City of N.Y. (Nov. 28, 2022), https://www.nyc.gov/assets/home/downloads/pdf/press-releases/2022/Mental-Health-Involuntary-Removals.pdf [https://perma.cc/4PVW-QZ32] [hereinafter City of N.Y., Involuntary Removals] (“If the circumstances support an objectively reasonable basis to conclude that the person appears to have a mental illness and cannot support their basic human needs to an extent that causes them harm, they may be removed for an evaluation.”); see also City of N.Y., Subway Safety Plan, supra note 1, at 8 (outlining New York City’s multiagency effort to “expand[] services to reach those experiencing homelessness or severe mental illness”). It could result in the involuntary institutionalization of many people who do not pose a danger to the community. 7 See City of N.Y., Involuntary Removals, supra note 6 (“[New York law] authorize[s] the removal of a person who appears to be mentally ill and displays an inability to meet basic living needs, even when no recent dangerous act has been observed.”). In proffering this plan, Adams’s rhetoric is a curious mix of punitive and therapeutic. The program will, he argues, discharge a duty of care toward vulnerable people with disabilities. 8 See Press Release, Off. of the Mayor, Mayor Adams Releases Subway Safety Plan, Says Safe Subway Is Prerequisite for New York City’s Recovery (Feb. 18, 2022), https://www.nyc.gov/office-of-the-mayor/news/087-22/mayor-adams-releases-subway-safety-plan-says-safe-subway-prerequisite-new-york-city-s#/0 [https://perma.cc/PDR6-QV9P] (“It is cruel and inhumane to allow unhoused people to live on the subway . . . . The days of turning a blind eye to this growing problem are over . . . .” (internal quotation marks omitted) (quoting Eric Adams, Mayor, N.Y.C.)). But targeted New Yorkers will not have a choice about whether to accept the government’s intervention. Rather, Adams ominously informed unhoused New Yorkers: “No more just doing whatever you want. No, those days are over.” 9 Gwynne Hogan, Adams, Hochul Roll Out Subway Safety Plan to Crack Down on Homeless People on Trains and in Stations, Gothamist (Feb. 18, 2022), https://gothamist.com/news/adams-hochul-roll-out-subway-safety-plan-crack-down-homeless-trains-and-stations (on file with the Columbia Law Review) (internal quotation marks omitted) (quoting Eric Adams, Mayor, N.Y.C.).

Mayor Adams is not alone in his impulse to watch and control. Actors at all levels of government are increasingly pursuing policies that use surveillance mechanisms to manage people with disabilities. Over the past decade, state and federal laws have started to permit, and occasionally mandate, the increased surveillance of people with disabilities. These surveillance practices are a continuation of a historical trend of the oversurveillance of people with disabilities. Branded as criminals 10 See, e.g., Kim E. Nielsen, A Disability History of the United States 102 (2012) (noting that institutions like the Indiana Reformatory were developed to manage the population of the “degenerate class,” which included “most of the insane, the epileptic, the imbecile, [and] the idiotic,” among others (internal quotation marks omitted) (quoting Jennifer Terry, An American Obsession: Science, Medicine, and Homosexuality in Modern Society 82 (1999))); Susan M. Schweik, The Ugly Laws: Disability in Public 10 (2009) (describing the broad network of public ordinances that were passed in various major U.S. cities criminalizing disability in public spaces, which were rooted in early poorhouse laws used to confine convicted people in police stations or county poorhouses); James W. Trent, Jr., Inventing the Feeble Mind: A History of Intellectual Disability in the United States 13 (2017) (observing that intellectual disability was historically linked to a multitude of sins requiring oversight and management, including “intemperance, poverty, consanguinity (meaning marriage between cousins), insanity, scrofula, consumption, licentious habits, failed attempts at abortion, and overwork in the quest for wealth and power”). and scrutinized with suspicion because of their dependence on public aid, 11 One of the earliest institutions was the workhouse or poorhouse, created to confine various diverse but poor populations, including the “disabled, widowed, orphaned, and sick.” See Chris Chapman, Allison C. Carey & Liat Ben-Moshe, Reconsidering Confinement: Interlocking Locations and Logics of Incarceration, in Disability Incarcerated: Imprisonment and Disability in the United States and Canada 3, 3–4 (Liat Ben-Moshe, Chris Chapman & Allison C. Carey eds., 2014). those labeled as disabled were subject to surveillance, removed from public spaces, 12 Schweik, supra note 10, at 26 (“With an almshouse in place, street cleaning could proceed, justified—when proper—as caretaking.”). Professor Liat Ben-Moshe provides a more modern example of surveillance of people with disabilities in public spaces, namely the deliberate counting and categorizing of the “‘homeless mentally ill.’” Liat Ben-Moshe, Decarcerating Disability: Deinstitutionalization and Prison Abolition 140–43 (2020) [hereinafter Ben-Moshe, Decarcerating Disability]. This is a “constructed category of analysis” that is part of a process of justifying the incarceration of this population in hospitals and prisons. Id. at 140. and funneled into penitentiaries, prisons, residential schools, and workhouses to be managed, worked, and treated. 13 See Chapman et al., supra note 11, at 4–5 (noting that the purpose of confining people with disabilities changed in the nineteenth century from undifferentiated placement in the poorhouse to more intentional placement in places like asylums, hospitals, and residential schools, where people with disabilities could be treated and cured); David J. Rothman, The Discovery of the Asylum 79 (Aldine de Gruyter 2002) (1971) (writing that reformation was the goal of the penitentiary, which was built to house people deemed “deviant” and had the lofty aims of reforming criminality and thereby stabilizing American society). Once within these institutionalized spaces, surveillance was critical to the mission of correcting or rehabilitating “abnormal” behavior. 14 Asylums and schools for people with intellectual and developmental disabilities were sites of constant monitoring. See, e.g., Dolly MacKinnon, Hearing Madness and Sounding Cures: Recovering Historical Soundscapes of the Asylum, Politiques de Communication (Special Issue), no. 1, 2017, at 77, 78 (Fr.) (“[W]omen and men were physically segregated, and their medical appraisal and diagnosis involved an account of their visual and auditory symptoms of madness. The soundscape within the asylum was monitored at all times, as the watchful eyes and ears of both attendants and doctors made notes of any changes.”). Those who were excluded from the workhouse, including enslaved and colonized people, were wrapped up in other punitive systems of “unrestrained violence” that also used totalizing surveillance to control and manage. 15 Chapman et al., supra note 11, at 4. For a more detailed analysis of the surveillance practices employed against enslaved people, see Simone Browne, Dark Matters: On the Surveillance of Blackness 21 (2015) (noting that at the time of slavery, “citizenry (the watchers) was deputized through white supremacy to apprehend any fugitive who escaped from bondage (the watched), making for a cumulative white gaze that functioned as a totalizing surveillance”). Policies that promoted the isolation and segregation of people with disabilities remained in place until well into the twentieth century. 16 Laura I. Appleman, Deviancy, Dependency, and Disability: The Forgotten History of Eugenics and Mass Incarceration, 68 Duke L.J. 417, 440 (2018) (noting that laws in the early twentieth century still called for the incarceration of “feebleminded” adults “in hopes of preventing crime, insanity and prostitution”).

In the mid-twentieth century, social policy shifted from isolating people with disabilities in large institutions to closing those institutions and integrating people with disabilities into the community. 17 See, e.g., Ben-Moshe, Decarcerating Disability, supra note 12, at 44 (noting that mental health and intellectual and developmental disability (I/DD) policy changes that culminated in deinstitutionalization began with broader social welfare reforms in the 1960s, including the establishment of Medicare and Medicaid); cf. State ex rel. Goddard v. Coerver, 412 P.2d 259, 261–62 (Ariz. 1966) (discussing the state legislature’s approval of new funds for an “Insane Asylum” in 1885). Integration was first codified in section 504 of the Rehabilitation Act of 1973 (Section 504) 18 Rehabilitation Act of 1973, Pub. L. No. 93-112, § 504, 87 Stat. 355, 394 (codified as amended at 29 U.S.C. § 794(a) (2018)). and then in the Americans With Disabilities Act of 1990 (ADA). 19 Americans With Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 327 (codified as amended at 42 U.S.C. §§ 12101–12213 (2018)). These statutes mandated that states and entities receiving federal funding provide people with disabilities services within the “most integrated setting” appropriate for the individual’s needs. 20 See 42 U.S.C. § 12182(b)(1)(B). The move toward community integration was given an additional boost when the Supreme Court decided Olmstead v. L.C. ex rel. Zimring, a landmark case interpreting the ADA’s integration mandate. 21 527 U.S. 581 (1999). The Court held unequivocally that people with disabilities have a right to live within their communities and receive services in the most integrated setting possible. 22 See id. at 597 (“Unjustified isolation, we hold, is properly regarded as discrimination based on disability.”). Integration entailed a seismic shift in thinking about the position, both geographical and social, occupied by people with disabilities in society. 23 Ben-Moshe, Decarcerating Disability, supra note 12, at 39 (referring to deinstitutionalization as “a social movement, an ideology opposing carceral logics, a mindset”). If surveillance was an important characteristic of the institutions that ware­housed people with disabilities to control and cure them, 24 See, e.g., Erving Goffman, On the Characteristics of Total Institutions, in Asylums: Essays on the Social Situation of Mental Patients and Other Inmates 1, 7 (Routledge 2017) (1961). Dr. Erving Goffman, a psychiatrist and prominent thinker, wrote about the characteristics common to a wide range of “total institutions” like psychiatric hospitals and prisons. See id. at 4–7. Chief among these characteristics was a lack of privacy, as “each phase of the member’s daily activity [was] carried on in the immediate company of a large batch of others, all of whom [were] treated alike and required to do the same thing together.” Id. at 6. Goffman noted that surveillance was a critical part of policing these spaces. Inmates were subjected to “a seeing to it that everyone does what he has been clearly told is required of him, under conditions where one person’s infraction is likely to stand out in relief against the visible, constantly examined compliance of the others.” Id. at 7. integration called for protecting the privacy, autonomy, and freedom of people with disabilities so that they could live a “normal” life within the community. 25 See Wolf Wolfensberger, The Principle of Normalization in Human Services 28 (1972). See generally id. at 27. Psychiatrist Dr. Wolf Wolfensberger promoted the principle of normalization—a Scandinavian concept that referred to making available to people with intellectual and developmental disabilities “patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society.” Id. at 27 (internal quotation marks omitted) (quoting Bengt Nirje, The Normalization Principle and Its Human Management Implications, in Changing Patterns in Residential Services for the Mentally Retarded 179, 181 (Robert B. Kugel & Wolf Wolfensberger eds., 1969)). A critical part of normalization was protecting the ability of people with disabilities to take risks: “We do ‘say something’ to the person who lives in the building that we build for them. We can say: ‘We will protect you and comfort you—and watch you like a hawk!’ Or we can say: ‘You are a human being and so you have a right to live as other humans live, even to the point where we will not take all dangers of human life from you.’” Id. at 199.

This Essay’s contribution is twofold. It first tracks the historical development of surveillance mechanisms over time, highlighting the carceral logic underpinning those practices. It then uncovers the tension between the integration mandate and modern surveillance policies that have the potential to isolate and segregate. Specifically, this Essay analyzes three modern examples of surveillance. First, it considers state laws that permit the installation of sophisticated surveillance technology in group homes for people with disabilities. 26 See, e.g., Ariz. Rev. Stat. Ann. § 36-568 (2022). Second, it considers surveillance mechanisms adopted by states under federal laws such as the 21st Century Cures Act, a federal law requiring all states to implement Electronic Visit Verification (EVV) systems to screen for Medicaid fraud. 27 See 21st Century Cures Act, Pub. L. No. 114-255, sec. 12006, 130 Stat. 1033, 1275 (2016) (codified as amended at 42 U.S.C. § 1396b(l) (2018)) (noting that Electronic Visit Verification (EVV) systems gather detailed information about Medicaid-funded personal care services). Finally, it considers state laws and regulations that mandate surveillance of students with disabilities through threat-assessment processes as part of a proactive school-shooting-prevention strategy. 28 See, e.g., Marjory Stoneman Douglas High School Public Safety Act, ch. 2018-3, § 2, 2018 Fla. Laws 6, 10. This Act requires each district, school board, and charter school governing board to establish a threat-management team responsible for assessing and intervening when someone’s behavior “poses a threat of violence or physical harm.” Fla. Stat. Ann. § 1006.07(7)(b), (e) (West 2023). Once threatening behavior is identified, threat-assessment teams have broad powers to share this information with law enforcement and other government agencies. Id. § 1006.07(7)(e), (g)–(h) (requiring the sharing of records or information with “other agencies involved with the student and any known service providers to share information and coordinate any necessary followup actions”).

A careful look at these modern surveillance policies and the reasons underpinning them demonstrates how the use of surveillance continues to promote and reproduce the same carceral logic that once drove the historical warehousing of people with disabilities. Surveillance can be deployed in service of carceral ableism—“the praxis and belief that people with disabilities need special or extra protections, in ways that often expand and legitimate their further marginalization and incarceration.” 29 Ben-Moshe, Decarcerating Disability, supra note 12, at 17; see also Wolfensberger, supra note 25, at 18 (noting corollaries of this belief, including the “need for extraordinary control, restriction, or supervision” and “denial of citizenship rights and privileges”). Legislation that permits, and in some circumstances requires, the installation of cameras in the homes of people with disabilities is an example of an ostensibly protective measure that undermines and dehumanizes people with disabilities. Surveillance can also be deployed as a means of identifying and punishing the disability con—“the cultural anxiety that individuals fake disabilities to take advantage of rights, accommodations, or benefits.” 30 For a discussion of the “disability con,” see Doron Dorfman, Fear of the Disability Con: Perceptions of Fraud and Special Rights Discourse, 53 Law & Soc’y Rev. 1051, 1053–56 (2019). EVV systems are the outgrowth of a carceral logic that is suspicious of recipients of public benefits; the systems monitor and punish people with disabilities and their home health aides out of suspicion that they are committing fraud. Finally, surveillance may be driven by carceral humanism—a term coined by activist and scholar James Kilgore to describe a discourse that repackages punishment as part of service provision and entrenches the role of law enforcement, sheriffs, and corrections officers as caring service providers. 31 See James Kilgore, Repackaging Mass Incarceration, Counterpunch (June 6, 2014), https://www.counterpunch.org/2014/06/06/repackaging-mass-incarceration/ [https://perma.cc/JC2M-XH95]. Threat-assessment processes are an example of a surveillance structure that feeds a culture of punishment involving “heavy monitoring of a person’s behavior” 32 Id.; see also Broward Cnty., Fla., Sch. Bd. Policy 2130, Threat Assessment Policy 3 (2019), http://www.broward.k12.fl.us/sbbcpolicies/docs/Threat%20Assessment%20Policy.pdf [https://perma.cc/9S6W-VY84] (requiring threat-assessment teams to plan, implement, and monitor appropriate interventions aimed at “manag[ing] or mitigat[ing] a student’s risk for engaging in violence” that would remain in place until they find that “the student is no longer in need of support” nor “pose[s] a threat to self or others”). coupled with a threat of exclusion and incarceration for exhibiting behavior deemed risky or problematic. 33 See, e.g., Ike Swetlitz, Who’s the Threat?, Searchlight N.M. (Oct. 15, 2019), https://searchlightnm.org/whos-the-threat/ [https://perma.cc/KG2L-DK9T] (outlining the experience of Jamari Nelson, a seven-year-old student with a disability in New Mexico who was expelled from school after being labeled a “high-level threat”).

The integration mandate provides a framework to expose and challenge the carceral logic at play within these systems. Olmstead jurisprudence increasingly reflects the recognition that the integration mandate is not merely about the location of services but about the right to self-determination, choice, and the ability to freely interact with other members of the community. 34 Federal courts have repeatedly found that plaintiffs receiving community-based services may still be at risk of segregation or isolation when services are administered in a manner that restricts access to the community. See, e.g., Steimel v. Wernert, 823 F.3d 902, 910 (7th Cir. 2016) (noting that plaintiffs argued that the state policies “impermissibly rendered the plaintiffs institutionalized in their own homes, and . . . put them at serious risk of institutionalization”); Fisher v. Okla. Health Care Auth., 335 F.3d 1175, 1184 (10th Cir. 2003) (finding that the integration mandate applied when the state restricted plaintiffs’ choice of services, undermining their ability to remain in the community); Lane v. Kitzhaber, 841 F. Supp. 2d 1199, 1205 (D. Or. 2012) (finding that segregation in an employment setting violated the integration mandate because plaintiffs could not interact with people without disabilities while in that setting). But surveillance can isolate and segregate, undermining this goal of integration. 35 Torin Monahan, Regulating Belonging: Surveillance, Inequality, and the Cultural Production of Abjection, 10 J. Cultural Econ. 191, 192 (2017) (noting that surveillance works as a tool of regulation but also marks those subject to it as “dangerous or socially illegible”). Overprotective surveillance policies in group homes adversely impact people’s ability to enjoy privacy and autonomy in their homes. 36 See, e.g., Natalie Chin, Group Homes as Sex Police and the Role of the Olmstead Integration Mandate, 42 N.Y.U. Rev. L. & Soc. Change 379, 382 (2018) (making the argument that the failure by group homes to support the choices of residents with I/DD to exercise sexual rights could constitute a violation of the integration mandate); Leslie Salzman, Rethinking Guardianship (Again): Substituted Decision Making as a Violation of the Integration Mandate of Title II of the Americans With Disabilities Act, 81 U. Colo. L. Rev. 157, 161 (2010) (arguing that guardianship could segregate and isolate people with disabilities in a manner that violates the integration mandate). Surveillance used to police and prevent Medicaid fraud prevents recipients from freely accessing the community for fear of triggering a fraud alert and losing essential services. 37 See Alexandra Mateescu, Data & Soc’y, Electronic Visit Verification: The Weight of Surveillance and the Fracturing of Care 8 (2021), https://datasociety.net/wp-content/uploads/2021/11/EVV_REPORT_11162021.pdf [https://perma.cc/FW8A-XABX] (noting that due to a lack of federal policy guidance, “[s]tate-level policies and technology design encoded far more invasive features into EVV systems than were required”). Finally, surveillance policies that target people with disabilities based on ableist notions of dangerousness can result in their exclusion from school settings and their incarceration in prisons or hospitals. 38 See, e.g., United States v. Georgia, 461 F. Supp. 3d 1315, 1323–25 (N.D. Ga. 2020) (finding that plaintiffs had stated an Olmstead claim when students with disabilities were removed from general education and placed in a separate program for students with “behavioral” issues).

To avoid these outcomes, one must ask critical questions about whether surveillance systems will actually solve the problems that drive their use, how surveillance may be experienced by people subject to it, and whether the motivations behind these policies are rooted in prejudice. Failing to ask these questions before deploying these systems in community-based settings can result in superficial, rather than meaning­ful, integration within the community. 39 See Liat Ben-Moshe, The Contested Meaning of “Community” in Discourses of Deinstitutionalization and Community Living in the Field of Developmental Disability, in Disability and Community 241, 260 (Allison C. Carey & Richard K. Scotch eds., 2011) [hereinafter Ben-Moshe, Contested Meaning] (noting that “mere[ly] clos[ing] . . . large state institutions . . . d[id] not necessarily entail a radical change in the discursive formations of developmental disability and the lived experiences of those so labeled,” resulting in mini-institutions that are now located in the community); id. at 251 (observing that “physical integration [of services] is only the first step to integration” and that to achieve full inclusion, people with disabilities require “associations and friendships” that “encourage community membership” among disabled people). Conversely, asking these questions will allow policymakers to think more critically about surveillance systems and how they fray community bonds, feed negative stereotypes, and segregate and isolate people with disabilities.

To that end, this Essay proceeds in five parts. Part I outlines how surveillance is intertwined with the history of incarceration of people with disabilities. Part II outlines the ADA’s clear remedial mission and the integration mandate’s potential to disrupt carceral systems. Part III unpacks the arguments frequently made to justify surveillance of people with disabilities and uncovers the ableism underpinning those surveillance systems. Section III.A demonstrates how group home surveillance creates settings within the community that look like the institutions of the past, within which residents were deprived of privacy, self-determination, and autonomy. Similarly, section III.B uncovers how surveillance that looks like an innocuous bureaucratic tool for recording how services are provided in the community legitimizes old and unwarranted fears about the disability con while degrading the quality of those services and risking the reinstitutionalization of people currently receiving them. Section III.C describes how surveillance of students with disabilities to prevent dangerous behavior in schools makes it easier to remove them from integrated settings and place them in psychiatric hospitals or in jail. Part IV applies the integration mandate to these systems to demonstrate how the mandate can be used to disrupt and dismantle these surveillance systems, functioning as a tool of resistance. This Essay concludes with questions that must be asked before society turns to surveillance as a response to disability.