Originally published here.
Disability antidiscrimination laws, prominently the Americans with Disabilities Act of 1990 as amended by the ADA Amendments Act of 2008 (the “ADA”), promote two central requirements. First, social institutions affirmatively remove attitudinal and structural barriers and discrimination confronting people with disabilities as they exercise their rights to particulate fully in society, including in employment [1,2,3,4]. Second, employers, governmental entities, and private entities open to the public comply with the “accommodation principle,” which requires them to make reasonable adjustments to places of work and services to enable equal participation by qualified individuals with disabilities [2, 5,6,7,8,9,10,11,12,13]. Disability-inclusive employment for people with disabilities is grounded in these basic requirements.
Disability-inclusive employment policy and practices have been complicated today by the COVID-19 pandemic and the resulting global health and economic emergency. The pandemic is profoundly affecting the lives of persons living with disabilities across the life course, and in all aspects of employment [4, 14]. The effects of the pandemic are particularly hurtful to individuals who are living in, or perilously close to, poverty; who have multiple, intersectional minority identities associated with race, ethnicity, sexual orientation, and gender identity; who are addressing the limits of age; or who are facing the many and varied challenges of disability otherwise or in conjunction with other life and family experiences such as ableism, racism, and sexism.
My 2020 book, Disability Law and Policy [1], examines the ADA at its thirtieth year, but it was mostly written during the years immediately preceding the pandemic. Prior to the pandemic, by most estimates, there were 60 million individuals (almost one in five) in the USA living with disabilities. Before the emergency, more than one-quarter of the working-age people with disabilities in the United States were living below the poverty level, over twice the rate of those without disabilities [1]. Despite modest declines in unemployment rates during the years immediately preceding the pandemic, people with disabilities were still disproportionately excluded from the labor market and from other economic, social, and civic opportunities [15,16,17,18]. During the pandemic, people with disabilities are being even further left out of the labor market [11, 19, 20].
My 2022 book, Advanced Introduction to Disability Law [21], is being written during the throes of the pandemic. It considers how, during the health and economic emergency, the persistent exclusion of persons with disabilities from the labor market has significantly worsened. This situation is dire, despite the United States having reached the fourth decade since the ADA’s enactment, and despite the disability model based on civil rights (“Rights Model”) that began to influence U.S. government policy as far back as the 1970s. This Rights Model and the parallel “Social” (or Ecological) Model view persons with disabilities as a minority group, entitled to the same hard-won legal protections for equality that have emerged from the struggles of African Americans, women, older adults, and individuals with differing sexual orientations and gender identities [1].
The recognition that people with disabilities have rights in American law, rather than being people who must somehow “overcome” their different personal traits to participate in society, is the central insight of the ADA; that is, “disability” is merely a social construct, the result of the interaction between a person with an impairment and the “able”-oriented society in which the person lives. In the past, U.S. laws, policies, and practices had subordinated the rights of people with disabilities [22]. With the ADA, the government aimed to secure the equality of people with disabilities by eliminating barriers that unfairly preclude full and equal involvement in society.
This special section of the Journal of Cancer Survivorship examines disability-inclusive employment policy and practice, cancer survivorship, and the ADA [1]. It considers current issues in research, practice, and law in the United States, especially new questions that have arisen because of COVID-19. Matters discussed include the nature of disability disclosure, workplace accommodations and remote work, emerging workplace health surveillance technologies, and inclusive employment practices for cancer survivors and for others with disabilities [23]. It also presents, for comparative purposes, an analysis of cancer-related disability discrimination in the media in the United States and Israel.
After this “Introduction,” the articles in this special section consider a range of topics. Beginning with two studies on the disclosure of disability, and cancer in particular, the first two articles examine the process of raising the need for workplace accommodations, the first during job interviews, and the second, thereafter (as affected by individual and organizational characteristics). The next two articles study the implications of the pandemic for working people with disabilities and cancer survivors, first for those working remotely, and then, for those working and applying for work subject to pandemic-enhanced workplace health surveillance and algorithmic health discrimination. The final article considers cancer-related stigma and discrimination in the United States and Israel, using a comparison of mass media. Taken together, the articles in this special section consider, variously, the future of disability-inclusive employment from research, policy, practice, and comparative perspectives.
Disability-inclusive employment for people with disabilities
The disability-inclusive employment paradigm is a concept of the late twentieth century. It contrasts with earlier vocational rehabilitation programs for people with disabilities that were based on medicalized conceptions of disability [1, 22]. The historically dominant “Medical Model” of disability focused on individual deficits, with impairments conceived of as infirmities that precluded participation in the mainstream economy [24, 25]. It cast people with disabilities in a subordinate role to doctors, rehabilitation professionals, and governmental bureaucrats, each of whom aimed to “help them,” when “deserving,” adjust to a society structured around the convenience, design, and interests of people without disabilities [22, 26,27,28].
The modern Social Model of disability, sometimes called the Ecological Model, and, in the context of the ADA, the Disability Civil Rights Model, has changed society’s perspective. It has altered the historical paradigm from a focus on an “other” health status, to be cured or rehabilitated, and even pitied, towards acceptance of individual differences, to be accommodated within reason, in employment and generally in society, as a natural part of the human experience.
Disability-inclusive employment has taken on exceptional importance due to the health, social, and economic emergency arising from the global pandemic [19, 20, 37, 54]. The pandemic is challenging public and private entities in unprecedented ways, and it has spurred traditional and new forms of employment and economic opportunity. But people with disabilities are currently experiencing among the highest rates of job loss, as compared to those without disabilities, from the pandemic emergency [48, 49].
Exacerbating the problem, people with disabilities often identify with other and multiple minority identities that are themselves marginalized in society. They may also be women, people of color, and individuals identifying with different sexual orientations and gender identities [24, 25, 29, 36]. Disability diversity, equity, and inclusion (“DEI”) programs that incorporate the accommodation principle for all identities—what my colleagues and I call “DEI + ”—are crucial to people with disabilities who seek to enter or re-enter the mainstream economy.
It is apparent that the use of overly broad terms such as “cancer,” “disability,” “LGBTQ + ,” and “racial/ethnic minority” do not adequately acknowledge the unique individual and multiple identities, all often associated with prior inequality and oppression, that exist across and within these individual categories of convenience. The same lack of nuance is found in reports of individual “discrimination” and “bias.” These labeling schemes are a place to start, but they are overly simplistic, as is the term cancer itself.
No study released during this era can ignore the ways in which the pandemic is changing our life experiences, and rarely for the better [55]. Future studies will need to look closely, among other things, at how the pandemic has affected the lives of many individuals who had already struggled with stress and discrimination related to the rising prevalence of mental health issues of various kinds. Future efforts must consider, over time, how identity disclosure and stigma, reported discrimination and bias, and the use of health surveillance technologies play out in the workplace for cancer survivors and others with disabilities. The longer-term objective is to mitigate bias and discrimination facing persons with minority identities and to further a culture of DEI + in the workplace.
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