case study on disability discrimination

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As part of her research, Tessa Charlesworth challenged the longstanding assumption that implicit biases are so ingrained that they cannot be changed.

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Why disability bias is a particularly stubborn problem

Nikki Rojas

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Researcher says addressing it likely will take some kind of social reckoning

Our most negative societal prejudices can fade, but what sparks that change, and what does it mean when those views haven’t budged in years? Tessa Charlesworth, a postdoc in the Department of Psychology, has dedicated her research in recent years to these questions, and some of her newest analysis has turned up a troubling trend involving implicit biases toward disabilities.

Charlesworth, Ph.D. ’21, who works in the lab of  Mahzarin Banaji, has found that those hidden prejudices have hardly changed over a 14-year period and could take more than 200 years to reach neutrality, or zero bias.

“Implicit bias can change. But so far, it’s only changed for some groups,” Charlesworth said. “It changed for sexuality and race bias pretty dramatically. Sexuality biases dropped 64 percent over 14 years, but it hasn’t changed at all for disability, age, or body weight bias. Disability bias over 14 years has only shifted by 3 percent. The disparity between the change in sexuality bias and the stability in disability bias is massive.”

Charlesworth noted that greater shifts are being seen in explicit biases, particularly those about disabilities, which have dropped 37 percent. She said that it is possible, given the long stability in implicit disability bias, that explicit biases could largely disappear before the implicit ones substantially budge.

New data shows that, based on the rate of past movement, it will likely take more than 200 years for implicit disability biases to reach neutrality. Researchers make projections using forecasting techniques similar to those used in predicting stock markets or the weather. By contrast Charlesworth noted that changed attitudes on sexual orientation are already very close to reaching a point where survey respondents do not associate being gay with bad and straight with good.

To track implicit biases, researchers tested how quickly subjects associated different concepts with being good or bad, using a test co-developed by Banaji, Charlesworth’s adviser, the Richard Clarke Cabot Professor of Social Ethics, and a regular co-author. They then relied on data archives from the last 14 years to detect changes. They looked at six different social biases: race, sexuality, skin tone, body weight, age, and disability.

“In and around Cambridge there are so many knobby brick roads with tree roots in the sidewalks that are totally ableist. And yet, for a long time, I just took that for granted and didn’t think it was a problem.” Tessa Charlesworth

Implicit biases, which Charlesworth described as “more automatic and less controlled” than more conscious explicit beliefs, are usually widespread in society and tend to come from personal experiences, upbringing, and the media, she said. Typically the majority of people have positive associations with groups who are dominant or hold power in society, such as those without disabilities or white men. On the other hand, individuals tend to have more negative associations with marginalized groups, including people of color, those with disabilities, or members of the LGBTQ community.

As part of her research, Charlesworth challenged the longstanding assumption that implicit biases are so ingrained that they cannot be changed. She found that was not the case and that implicit bias shifts along with the views of the wider society.

In a Harvard Horizons talk last year, Charlesworth attributed big changes in other implicit attitudes to major social, political, or cultural events, including federal legislation on same-sex marriage, the #MeToo movement, and Black Lives Matter.

“My new research tells us that these are the kinds of social events that are prompting transformation not only in our explicit conscious values, but also in that cognitive monster of implicit bias,” she said. Charlesworth believes it will take a similar movement of national reckoning to spark change in people’s implicit biases about disabilities.

“The amazing thing about Black Lives Matter and previous social movements [is that they] created national conversations that brought that bias to the front of everyone’s mind,” she said. “If you were sitting around at the dinner table, it was hard not to have a conversation about racism in the summer of 2020. I think that changing the conversation and bringing disability bias to the front of the mind for the everyday person will be necessary to change that bias as well.”

Banaji agreed that society needs to change the narrative when it comes to disability.

“Recognizing the truth — that every disability may come with a unique way to know the world that could create innovation, a different way to solve problems,” Banaji said. “When we see somebody in a wheelchair, [let] the first association that pops into our heads be, ‘Wow, I wonder what they know that I don’t know. I wonder what they can teach me that I could never know.’”

Charlesworth says her next move will be to look around the nation to see whether there are localities or regions that are leading change on disability bias. Banaji noted that it could be useful to compare the different investments that city, state, or federal governments make to support the disabled and see whether they correlate with residents’ attitudes.

“There are practices that you can do to start to become even just a little more aware of how implicit bias shows up,” Charlesworth said. “When I first started this research six years ago, I started noticing the number of places that don’t have ramps or the number of places that have really narrow sidewalks. In and around Cambridge there are so many knobby brick roads with tree roots in the sidewalks that are totally ableist. And yet, for a long time, I just took that for granted and didn’t think it was a problem. That’s how implicit bias becomes baked into our environments and can create these associations of who seems to be welcomed or valued.”

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Petitions of the week

Two cases alleging disability-based discrimination.

This week we highlight cert petitions that ask the Supreme Court to consider, among other things, the viability of certain types of disability-based claims under three federal statutes. One petition involves the Americans with Disabilities Act. Another involves the interaction of the Affordable Care Act and the Rehabilitation Act.

Because an on-the-job arm injury made it harder for her to conduct health inspections for Weld County, Colorado, Laurie Exby-Stolley requested an accommodation in the form of a new position with tasks she could perform. After the county told Exby-Stolley that her proposed arrangement would be unfair to other employees, she resigned. Exby-Stolley then sued the county under the Americans with Disabilities Act of 1990 for failing to accommodate her injury. Her claim faltered in district court because the jury determined that the county had not terminated her or subjected her to an adverse employment action. The en banc U.S. Court of Appeals for the 10th Circuit reversed on the ground that Exby-Stolley did not need to prove that the county took an adverse action, only that the county failed to accommodate her. Arguing that the U.S. courts of appeals are “nearly evenly divided” on this issue, the county asks for the justices’ review. The case is Board of County Commissioners of Weld County, Colorado v. Exby-Stolley .

CVS Pharmacy Inc. v. Doe involves a class action brought under Section 504  of the Rehabilitation Act of 1973 and  Section 1557  of the Patient Protection and Affordable Care Act. The class members, who are HIV-positive, have health insurance through their employers. Those health plans, in turn, rely on CVS Caremark, a pharmacy benefits manager, to administer their prescription-drug benefits. Under the terms of their benefit plans, the class members can receive in-network prices for their HIV medications by accepting the medications by mail or by picking them up at a CVS pharmacy, but they must pay out-of-network prices at other pharmacies. CVS maintains that this policy applies to all “specialty medications.” Nevertheless, the class members argue that the delivery conditions disproportionately harm plan members with HIV or AIDS, and they demand in-network prices at their chosen pharmacies.

The class members argue that the Rehabilitation Act, which prohibits discrimination on the basis of disability by programs or activities receiving federal funds, allows for disparate-impact claims. Moreover, the ACA, which incorporates the Rehabilitation Act’s enforcement mechanisms, allows them to challenge the terms and conditions of their benefit plans. The district court dismissed the case because the delivery conditions depend on whether the patients receive specialty medications, not whether they are HIV-positive. The U.S. Court of Appeals for the 9th Circuit vacated and remanded for further proceedings on the ground that the benefit plans did not need to uniquely impact people with HIV or AIDS if the plans denied them “medically appropriate dispensing of their medications.” Arguing that the 9th Circuit deepened “a square, widely acknowledged conflict,” CVS asks for the Supreme Court’s review.

These and other  petitions of the week  are below:

SFR Investments Pool 1, LLC v. M&T Bank 20-908 Issues : (1) Whether the Federal Housing Finance Authority’s structure violates separation of powers and, if so, whether its conservatorship of Fannie Mae and Freddie Mac must be set aside; and (2) whether quiet title actions by FHFA, asserting that a state law foreclosure failed to extinguish the agency’s property interests, are contract claims for purposes of  12 U.S.C. § 4617(b)(12) .

Warsaw Orthopedic Inc. v. Sasso 20-1284 Issue : Whether a federal court with exclusive jurisdiction over a claim may abstain in favor of a state court with no jurisdiction over that claim.

AbbVie Inc. v. Federal Trade Commission 20-1293 Issue : Whether the subjective element of the “sham litigation” exception to  Noerr-Pennington  immunity may be met by an inference from a finding that a challenged lawsuit was objectively baseless, even without evidence that the antitrust defendant actually believed the suit lacked merit or was indifferent to the outcome.

Walker v. Mississippi 20-1306 Issues : (1) Whether the Mississippi Supreme Court failed to adhere to the Supreme Court’s Sixth Amendment jurisprudence requiring counsel in a capital case to conduct a thorough investigation of their client’s background and history, and that purported “tactical” decisions are only reasonable to the extent they are based on such an investigation; and (2) whether Alan Walker was denied the effective assistance of counsel in the preparation and presentation of mitigation at his capital trial.

Board of County Commissioners of Weld County, Colorado v. Exby-Stolley 20-1357 Issue : Whether a plaintiff asserting a failure-to-accommodate claim under the  Americans with Disabilities Act of 1990  must show that the employer’s failure to make the requested accommodation affected the “terms, conditions, [or] privileges of employment”—that is, whether the employee must show that the failure to accommodate amounted to an adverse employment action.

CVS Pharmacy Inc. v. Doe 20-1374 Issues : (1) Whether  Section 504  of the Rehabilitation Act of 1973 — and by extension  Section 1557  of the Patient Protection and Affordable Care Act, which incorporates the “enforcement mechanisms” of other federal antidiscrimination statutes — provides a disparate-impact cause of action for plaintiffs alleging disability discrimination; and (2) whether, if Section 504 and the ACA create disparate-impact claims, such claims extend to the facially neutral terms and conditions of health insurance plans.

Posted in Cases in the Pipeline

Cases: SFR Investments Pool 1, LLC v. M&T Bank , Warsaw Orthopedic Inc. v. Sasso , AbbVie Inc. v. Federal Trade Commission , Walker v. Mississippi , Board of County Commissioners of Weld County, Colorado v. Exby-Stolley , CVS Pharmacy Inc. v. Doe

Recommended Citation: Andrew Hamm, Two cases alleging disability-based discrimination , SCOTUSblog (Apr. 9, 2021, 1:01 PM), https://www.scotusblog.com/2021/04/two-cases-alleging-disability-based-discrimination/

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Research brief: experience of discrimination and the ada.

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Experience of Discrimination and the ADA

An ada knowledge translation center research brief, sarah parker harris.

Courtney Mullin

Department of Disability and Human Development

University of Illinois at Chicago

The Americans with Disabilities Act (ADA) is a civil rights law that creates a legal framework for people with disabilities to address discrimination. Passed in 1990, the ADA represents bipartisan support for disability inclusion in all aspects of public life. Through the ADA, disability is a recognized source of discrimination, similar to “race, color, religion, sex, or national origin” within the Civil Rights Act of 1964. The ADA allows individuals with disabilities to challenge discrimination in the realms of employment, public services, and places of public use. The overarching goal of the ADA is to promote equal opportunity, full participation, independent living, and economic self-sufficiency for all people with disabilities.

ADA and Experiences of Discrimination

Developing a law that prohibits discrimination and creates regulations around access was, and continues to be, an important step in addressing barriers to inclusion. Disability-based discrimination is often related to both prejudices as well as broader social barriers that deny people with disabilities equal opportunities. Some researchers describe the goal of the ADA “…to integrate persons with disabilities into the social mainstream,” (p. 13). 1  The ADA has regulations to address structural barriers (i.e. physical and programmatic issues) and discriminatory practices, in order to impact attitudes towards disability.

Much of the research on discrimination is about causes and frequency of negative attitudes held by people without disabilities. This research brief looks at the experiences of discrimination from the perspective of people with disabilities as a way to better understand the influence of the ADA.

What the Research Says

Discrimination comes in many different forms. Research throughout the last three decades highlights how people with disabilities experience discrimination and negative attitudes. This research brief organizes these ideas as well as how people with disabilities respond to discriminatory experiences. The following section is divided into three areas where there is information from people with disabilities reporting and describing their experiences with discrimination. While people with disabilities experience discrimination in various domains of their public and private lives, these are some topics for which researchers have begun to document the perceptions and experiences of people with disabilities.

Differences in Experiences

The experiences of discrimination amongst people with different disabilities are diverse. Demographic factors have been shown to affect both prevalence and type of discrimination. For example, people whose need for accommodations change at different times, such as people with mental health conditions, are more likely to report workplace discrimination than people with other types of impairments. 2  Another study found that people with physical disabilities experience different attitudes and misperceptions in the workplace when compared to other groups, such as people with learning disabilities. 1  Furthermore, race, gender, and socioeconomic class have also been shown to impact and compound experiences of disability-based discrimination. 3  African Americans, women, and people with low incomes are all more likely to report disability-based discrimination in health care. 3

Social factors such as family, social class, race, and religion also influence how people understand their rights and types of resources available to address inequalities . 1  Timing of a disability onset or diagnosis is also a critical factor, as people have varying kinds of resources at different times in their lives. One study furthers this idea by exploring the relationship between age and disability discrimination through data from the Equal Employment Opportunity Commission (EEOC), the agency in charge of enforcing the ADA in employment. 4  There is evidence that older workers are more likely to perceive and file complaints regarding employment discrimination. These variances highlight the diversity within the disability community and how people with disabilities experience discrimination in different ways. Recognizing differences in experience is noteworthy as is acknowledging the widespread prevalence of disability-based discrimination.

Employment is one of the most documented and researched areas regarding the ADA and disability-based discrimination. Though prohibited in the ADA, discrimination in the workplace has been a longstanding issue for people with disabilities. Nearly one in ten working adults with disabilities reported experiencing some kind of workplace discrimination within the five years after the passage of the ADA, and almost a third of these respondents permanently exited the workforce. 5

Workplace discrimination is often subtle, however people with disabilities have expressed that negative attitudes towards disability influence their success in employment. 6  One study, which involved sending mock job applications, found that those who disclosed disability (either spinal cord injury or Autism) received 26% fewer expressions of employer interest than applicants that did not include a disability disclosure. 7  Stigmatizing attitudes have been perceived by people with disabilities to negatively impact progress in their careers through not getting hired, being denied promotions, having extended probationary periods, or being treated differently than coworkers without disabilities. 6,7,8,9,10  In a study conducted by the Center for Talent Innovation as described in an article published by the  Harvard Business Review , a third of survey respondents with disabilities indicate that they had experienced negative bias in the workplace such as feeling underestimated, insulted, excluded, or had coworkers appear uncomfortable because of their disability. 9  Almost half of these respondents (47%) also report that they would never achieve a leadership role in their company, regardless of their performance or qualifications. 9

Disclosing a disability, or sharing a disability status, is clearly influenced by experiences of discrimination. In one study, less than half of respondents with disabilities (39%) report that they had disclosed to a manager and even fewer had told other colleagues (24%); only 4% of respondents told clients about their disabilities. 11  Reasons for employees with disabilities to hide their disability status include fear of teasing, harassment, potential changes in coworker relationships, being perceived as less capable, and reduced progress in their careers. Not disclosing a disability status has been described as “allowing people with disabilities to be employed ‘without fear of prejudice or discrimination’” (p. 487). 12

Another study found that people with disabilities who do not disclose on a job application, but later disclose their disability status at work, are also met with discriminatory behaviors such as coworker unease, inappropriate questions, and assumptions about their capability. 8  Choosing to disclose a disability status is a delicate situation due to the prevalence of disability discrimination, however there are noted benefits of disclosure for some. For example, one study estimates that employees with disabilities who disclose are more content (65% versus 27%) and less isolated (8% versus 37%) at work than employees who do not disclose. 11

Experiences of employment discrimination are not limited to attitudes, as people with disabilities may face other types of structural barriers. Examples include lack of physical accessibility in the workplace, such as absence of accessible restrooms, inaccessible equipment to perform job tasks, and lack of access to reasonable accommodations. 1  This physical inaccessibility can also impact feelings of isolation. Another study identifies barriers to inclusion in the workplace by interviewing employees with disabilities in large, public-sector organizations. 13  The study reveals that people with disabilities experience both physical and social segregation at work. One of the participants of this study describe how their office places employees with disabilities in “a little corner spot where nobody can see them” (p. 145). 13  The segregated desk location not only physically isolates the participant but also prevents social interactions with colleagues. Access discrimination such as this translates into business concerns as feelings of disability-based discrimination have been shown to significantly reduce job satisfaction. 14

Home and the Community

In addition to work, people with disabilities also experience discrimination in access to housing and the community. Institutionalization is a longstanding issue in the disability community, and often refers to the physical segregation of people with disabilities living and/or spending time in areas that are designated solely for people with disabilities. In a landmark decision as part of Olmstead vs L.C., the U.S. Supreme Court ruled that unjustified segregation violates the ADA. However, there are still many people with disabilities who live and spend time in institutional settings. Researchers explored this topic and found that people with intellectual disabilities who live in institutions report experiences of exclusion and discrimination. 15  These reports include notes of overly restrictive environments, lack of privacy, and difficulty getting involved in the community because of the physical and social segregation as a result living in an institutional setting.

Institutionalization is not the only issue related to community living and experiences of discrimination for people with disabilities. Though not regulated by the ADA, housing is a major issue and source of discrimination for people with disabilities. A study sponsored by the U.S. Department of Housing and Urban Development found that people who are deaf or hard of hearing face significant barriers during the home seeking process, including communicating with housing providers and learning about available units. 16  Additionally, people who use wheelchairs face barriers at several points in the home finding process, including locating accessible units, setting up appointments with providers to be shown units, and getting responses to reasonable modification requests. 16  These issues are made worse by the fact that 14-29% of federally funded housing facilities are estimated to violate federal regulations regarding access. 17

Social and Public Spaces

People with disabilities may experience discrimination when trying to access public spaces. For example, social stigma is another issue faced by people with disabilities. Researchers describe disability stigma, or negative attitudes or misconceptions towards disability, as a relationship between knowledge (ignorance), attitudes (prejudice), and behavior (discrimination). 18  These aspects are well documented in disability-based discrimination. In fact, people with mental health conditions report concerns about being viewed unfavorably based on their disability status, and over half of the respondents said that they have heard offensive statements about mental illness. 19  These factors shape public awareness about the capability of people with disabilities. 20  Many of the mentioned access barriers are rooted in negative attitudes that surround disability.

Another noteworthy example of disability discrimination is access to voting. A research team reviewed information from the U.S. 2012 elections and found that almost a third (30.1%) of voters with disabilities experienced some kind of difficulty in the voting process, which differs greatly from those without disabilities (8.4%). 21  The most common barrier was being able to see the ballot and understanding how to use the voting machines. Voting is a foundational right, and access barriers prohibit the participation of people with disabilities. This exemplifies a sentiment in other literature, that feelings of discrimination faced by people with disabilities can influence identifying as a citizen. 22

Responding to Discrimination

People with disabilities deal with discrimination and stigma in a variety of ways. Some people with disabilities choose to ignore negative attitudes, in order to not perpetually feel upset or the need to consistently react to negative interactions. 1  People with disabilities may not identify negative interactions as discriminatory if they do not have language or words to describe their experiences. 1  In fact, people with disabilities are hesitant to use the ADA or seek litigation due to social factors and describe a “threshold,” or feelings of a “minimum” level, of discrimination that must be reached prior to taking action through the ADA.

While choosing to take legal action is a complex decision, it is a powerful way for people with disabilities to respond to discrimination. Trends in legal filings change over time and are influenced by contextual factors. A review of EEOC case data shows a decrease in allegations from 2001- 2008, prior to the passage of the ADA Amendments Act (ADAAA), which greatly broadened the definition of disability and redefined the intent of the ADA. 23  Since the ADAAA was enacted, there has been a steady increase in allegations regarding disability discrimination. However, many cases are not closed in favor of claimants (i.e. people with disabilities). In fact, a review of EEOC claims from 1992-2011 found only 23.4% of cases are closed with merit, meaning that they affirmed disability discrimination, while 76.6% of cases are closed without merit, meaning in favor of the employer. 23  Additionally, claimants who are perceived as disabled rather than claimants with documented disabilities, are more likely to file charges related to disability discrimination and have cases ruled in their favor. 24  Most discrimination cases are related to job retention or quality of work; the most common allegations of workplace discrimination are discharge and failure to receive reasonable accommodations. 23  Though discrimination in hiring is less common, it is also notable as legal cases regarding hiring are closed in favor of people with disabilities at higher rates than other allegations. 25

The goal of this brief is to present a 'state of the state' of how people with disabilities perceive discrimination in relation to the ADA, the types of issues experienced, and outcomes of these events. People with disabilities face significant discrimination in many areas, including employment and in public and private aspects of life- some of which are covered in this research brief. To date, the majority of research is related to employment and there is limited information related to other areas of private and public life. While disability-based discrimination is a major facet of life for people with disabilities, these experiences are not universal and are influenced by many factors. Responding to discrimination also varies, and people with disabilities must make complex decisions when choosing to invoke legal action such as through the ADA. There is growing public interest in experiences of disability discrimination, and there is a need for more research on experiences of discrimination particularly from the perspective of people with disabilities.

Examples from the ADA National Network

Below are a few examples of how the ADA national network are addressing the issues raised in this brief. For further information on how the ADA Centers can help with issues related to the ADA, please contact the  ADA National Network here .

• Giving advocacy tools:  A person with vision and hearing disabilities contacted ADA center staff regarding his rights to travel by taxi or public transportation with his service dog. He was very pleased with the explanation he received. After some discussion, the staff person provided the caller with a laminated copy of the explanation, so he could show it to cab drivers where he lives. Having information on hand is helpful to share when traveling with his service dog and helping to advocate for his rights.
• Ensuring parking access:  A person reached out to the ADA center to ask a question about accessible street parking regulations, as two spots were added outside of her office that she did not think looked accessible. The technical assistant shared the guidance regarding street accessible parking design and the caller forwarded the information to the city administration. Within 24 hours, the city began to properly mark the spots and the owner of the building moved a bench to align with accessible parking regulations.
• Newsworthy information:  Another ADA Center was contacted by a local news station after a wheelchair user reached out to discuss blocking the access aisles in accessible parking spaces. Technical assistants provided information to the news reporter about the purpose of access aisles. A few days later, the reporter followed up with the ADA Center and shared they had received positive comments about the story and how it changed peoples’ attitudes and future actions to help keep access aisles unblocked.
• Engel, D. M., & Munger, F. W. (2003). Rights of inclusion: Law and identity in the life stories of Americans with disabilities. University of Chicago Press.
• Chan, F., McMahon, B. T., Cheing, G., Rosenthal, D. A., & Bezyak, J. (2005). Drivers of workplace discrimination against people with disabilities: The utility of attribution theory. Work, 25(1), 77-88.
• LaVeist, T. A., Rolley, N. C., & Diala, C. (2003). Prevalence and patterns of discrimination among US health care consumers. International Journal of Health Services, 33(2), 331-344.
• Bjelland, M. J., Bruyere, S. M., Von Schrader, S., Houtenville, A. J., Ruiz-Quintanilla, A., & Webber, D. A. (2010). Age and disability employment discrimination: Occupational rehabilitation implications. Journal of occupational rehabilitation, 20(4), 456-471.
• Kennedy, J., & Olney, M. (2001). Job discrimination in the post-ADA era: Estimates from the 1994 and 1995 National Health Interview Surveys. Rehabilitation Counseling Bulletin, 45(1), 24-30.
• Beatty, J. E. (2012). Career barriers experienced by people with chronic illness: A US study. Employee Responsibilities and Rights Journal, 24(2), 91-110.
• Ameri, M., Schur, L., Adya, M., Bentley, F. S., McKay, P., & Kruse, D. (2018). The disability employment puzzle: A field experiment on employer hiring behavior. ILR Review, 71(2), 329-364.
• McKinney, E. L., & Swartz, L. (2019). Employment integration barriers: experiences of people with disabilities. The International Journal of Human Resource Management, 1-23.
• Sherbin, L. & Taylor Kennedy, J. (2017, December) The Case for Improving Work for People with Disabilities Goes Way Beyond Compliance. Harvard Business Review. Retrieved from  https://hbr.org/2017/12/the-case-for-improving-work-for-people-with-disabilities-goes-way-beyond-compliance .
• Vickers, M. H. (2009). Bullying, disability and work: A case study of workplace bullying. Qualitative Research in Organizations and Management: An International Journal, 4(3), 255-272.
• Jain-Link, P. & Taylor Kennedy, J. (2019, June). Why people hide their disabilities at work. Harvard Business Review. Retrieved from https://hbr.org/2019/06/why-people-hide-their-disabilities-at-work .
• Goldberg, S. G., Killeen, M. B., & O'Day, B. (2005). The disclosure conundrum: How people with psychiatric disabilities navigate employment. Psychology, Public Policy, and Law, 11(3), 463.
• Robert, P. (2003). Disability oppression in the contemporary U.S. capitalist workplace. Science & Society, 67(2), 136-159.
• Perry, E. L., Hendricks, W., & Broadbent, E. (2000). An exploration of access and treatment discrimination and job satisfaction among college graduates with and without physical disabilities. Human Relations, 53(7), 923-955.
• Jahoda, A., & Markova, I. (2004). Coping with social stigma: People with intellectual disabilities moving from institutions and family home. Journal of intellectual disability research, 48(8), 719-729
• Aranda, C. L. (2015). Targeting Disability Discrimination: Findings and reflections from the national study on housing discrimination against people who are deaf and people who use wheelchairs. Cityscape, 17(3), 103-122.
• Froehlich-Grobe, K., Regan, G., Reese-Smith, J. Y., Heinrich, K. M., & Lee, R. E. (2008). Physical access in urban public housing facilities. Disability and Health Journal, 1(1), 25-29.
• Thornicroft, G., Brohan, E., Kassam, A., & Lewis-Holmes, E. (2008). Reducing stigma and discrimination: Candidate interventions. International journal of mental health systems, 2(1), 3.
• Dickerson, F. B., Sommerville, J., Origoni, A. E., Ringel, N. B., & Parente, F. (2002). Experiences of stigma among outpatients with schizophrenia. Schizophrenia bulletin, 28(1), 143-155.
• Hampson, M., Hicks, R., & Watt, B. (2016). Understanding the employment barriers and support needs of people living with psychosis. The Qualitative Report, 21(5), 870-886.
• Schur, L., Adya, M., & Kruse, D. (2013). Disability, voter turnout, and voting difficulties in the 2012 elections. Report to US EAC and RAAV.
• Barton, L. (1993). The struggle for citizenship: the case of disabled people. Disability, Handicap & Society, 8(3), 235-248.
• McMahon, M. C., & McMahon, B. T. (2016). The National EEOC ADA research project: History, available data, and basic findings. Journal of Vocational Rehabilitation, 44(3), 333-342
• Draper, W. R., Reid, C. A., & McMahon, B. T. (2011). Workplace discrimination and the perception of disability. Rehabilitation Counseling Bulletin, 55(1), 29-37.
• McMahon, B. T., Hurley, J. E., West, S. L., Chan, F., Roessler, R., & Rumrill, P. D. (2008). A comparison of EEOC closures involving hiring versus other prevalent discrimination issues under the Americans with Disabilities Act. Journal of Occupational Rehabilitation, 18(2), 106-111.

For More Information, Please Contact:

Sarah Parker Harris ( [email protected] ) and Rob Gould ( [email protected] )

1640 W. Roosevelt Road (MC 626)

Chicago, IL 60608

Phone: (312) 413-1647

Fax: (312) 413-1630

TTY: (312) 413-0453

http://www.ahs.uic.edu/dhd/

SUGGESTED CITATION:  Parker Harris, S., Gould, R., and Mullin, C. (2019).  ADA research brief: Experiences of discrimination and the ADA  (pp. 1-6). Chicago, IL: ADA National Network Knowledge Translation Center.

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Case study on the effects of a disability inclusive mindset in a large biotechnology company

Journal of Work-Applied Management

ISSN : 2205-2062

Article publication date: 3 September 2021

Issue publication date: 5 April 2022

Employers increasingly seek a competitive advantage through inclusive hiring practices and recruitment of persons with disabilities. Early research indicates when employers consider individuals for their strengths rather than solely for their needs, the organization prospers. However, details about how companies pursue a disability inclusive workplace and the effect of those efforts are poorly understood.

Design/methodology/approach

An inductive qualitative case study approach was utilized to understand one biotechnology corporation and their approach to recruiting, hiring, and retaining employees with disabilities. Individual and focus group interviews were conducted.

Results suggest that when the company lives its mission around wellness and inclusivity, they benefit from working with and learning from a range of perspectives, furthering their growth. Placing equal emphasis on hiring a diverse workforce and prioritizing supports and wellness practices lead to greater productivity and innovation.

Practical implications

This study illustrates how one company successfully recruits and hires persons with disabilities, resulting in benefits to their financial bottom line and to the organizational culture.

Originality/value

This paper offers insights for other companies intentionally hiring persons with disabilities, providing accommodations in the workplace, and creating an organizational culture where all employees feel valued and supported. These steps have a direct impact on employee engagement, productivity, and retention.

• Diversity initiative
• Inclusivity
• Recruitment
• Employees with disabilities

Ochrach, C. , Thomas, K. , Phillips, B. , Mpofu, N. , Tansey, T. and Castillo, S. (2022), "Case study on the effects of a disability inclusive mindset in a large biotechnology company", Journal of Work-Applied Management , Vol. 14 No. 1, pp. 113-125. https://doi.org/10.1108/JWAM-06-2021-0045

Emerald Publishing Limited

Copyright © 2021, Chase Ochrach, Kathryn Thomas, Brian Phillips, Ngonidzashe Mpofu, Tim Tansey and Stacie Castillo

Published in Journal of Work-Applied Management . Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

Introduction

Employers increasingly recognize the benefits to productivity and organizational culture resulting from hiring persons with disabilities (PWDs) ( Lindsay et al. , 2018 ). Approximately 26% of people in the United States live with one or more of six functional types of disability, including cognitive, hearing, mobility, vision, self-care or independent living-related ( Centers for Disease Control and Prevention, 2018 ). Representing just over 25% of the US population, PWDs compose a large and valuable pool of current and potential members of the US workforce. However, PWDs continue to face challenges finding gainful employment in the United States, such that PWDs have an unemployment rate more than twice that of people without a disability ( US Bureau of Labor Statistics, 2020 ).

This lack of representation signals a significant problem of missed opportunity, as disability-inclusive hiring practices have been associated with improved productivity at the employee and organizational level ( Tompa et al. , 2021 ). One potential method of increasing rates of employment for PWDs is by increasing companies' awareness of the how much PWDs can contribute to the workforce, particularly in companies that maintain a disability-inclusive mindset ( Lindsay et al. , 2018 ). Companies with a disability-inclusive mindset go beyond maintaining the minimum legal requirement of anti-discrimination laws to create a disability-inclusive culture in all their thinking, policies, and operations. Such companies proactively focus on making the necessary changes needed to identify and remove barriers to full workplace participation for PWDs, including the removal of physical, communication, and attitudinal barriers ( CDC, 2020 ). This kind of mindset is represented by the concept of customized employment, which encourages organizations to customize the relationship between employee and employer based on the individual strengths and needs of both parties ( Inge, 2006 ). Despite several studies demonstrating the benefits of an inclusive culture and workforce at the individual, organizational, and societal level ( Tompa et al. , 2021 ) a specific roadmap for implementing this type of corporate culture remains elusive.

According to Weick's (1979 ) organizational information theory, people in organizations play active roles as creators of their environment through interpretation of information on a systemic level. Specifically, Weick (1979) emphasized the importance a company engaging in ongoing sensemaking, which is the process of rendering meaning from experience and constructing order out of disorder ( Patriotta, 2016 ). Within a company, sensemaking is a reciprocal relationship, such that individuals both create and are influenced by their organizational environment ( Weick, 1979 ). By focusing on communication from both top-down and bottom-up perspectives within a company, sensemaking provides a method of promoting disability-inclusive mindsets through centralized communication and information processing within a company ( Glynn and Watkiss, 2020 ; Weick, 1979 ). Weick conceptualizes sensemaking as central to organizing around a common mission and goal ( Weick, 2005 ). This theory is utilized in the current study by highlighting how a common organizational mission can allow employees across departments to make sense of their role in the company and of the company's role in the community. By engaging in the sensemaking process, leaders of companies can create a disability-inclusive mindset that influences the company culture on all levels to remove barriers and promote inclusive policy and culture for the hiring and retention of PWDs. Weick's theory applies to this case in that the way the organization and its members make sense and meaning of their work through identifying with the organization's inclusive mission and commitment to diversity. Previous studies have applied Weick's theory to various aspects of organization and management ( Tsoukas et al. , 2020 ), including process research ( Langley et al. , 2013 ) and organizational cognition ( Eden and Spender, 1998 ), among others. We extend findings from these and other previous studies to understand how sensemaking as a process furthers mission-based practices centered on diversity and inclusion.

Companies are increasingly moving to appreciate disability inclusion as a valuable contributor to diversity in the workplace ( Gilbride, et al. , 2003 ; Padkapayeva et al. , 2017 ). Research has revealed that companies identify several benefits to employing PWDs, including an expanded hiring pool, positive psychosocial impacts of retention of PWDs on employees with or without disabilities, and increased diversity of the workplace ( CDC, 2020 ; Lindsay et al. , 2018 ). By modifying recruitment and retention strategies, developing disability inclusion mediations, personalizing workplace and workspace modifications for PWDs, and matching the needs and skills of PWDs with the needs of the company, company leadership and human resources (HR) professionals can create disability inclusive mindsets by creating positive social attitudes regarding hiring PWDs ( Gilbride et al. , 2003 ; Padkapayeva et al. , 2017 ).

Research has also suggested that employee job fit, company culture, and previous employer experience with hiring PWDs all increase recruitment and retention of PWDs, which in turn shapes future HR hiring practices and the assumption of inclusive attitudes and perspectives company-wide ( Gilbride et al. , 2003 ). This aligns with findings that companies that reflect on their own practices, learn from their past organizational choices, and adapt to the internal and external environment are more sustainable in the long-term ( Fam et al. , 2017 ; Fergusson et al. , 2020 ). Additionally, HR employees with a higher degree of social awareness can increase the pace at which PWDs are recruited as well as the pace at which exposure-based disability-inclusive mindsets are encouraged in the workplace ( Chan et al. , 2010 ). This is especially important considering the growing centrality of social consciousness in what attracts new employees to work for organizations, underscoring the overall sustainability of that organization ( Brockhaus et al. , 2017 ; Rimanoczy and Pearson, 2010 ). Employing PWDs tends to decrease employer misconceptions, such as the idea that PWDs are not seeking work or are not qualified for company positions ( Bonaccio et al., 2020 ). Employing PWDs has been shown to increase future hiring and retention of job applicants with disabilities resulting in increased integration of workers with disabilities, development of disability-inclusive workplaces, and more sustainable futures for employees and organizations ( Bonaccio et al. , 2020 ; Fergusson et al. , 2020 ). These and other recent studies illustrate the unique benefits to hiring persons with disabilities, yet few offer a specific roadmap for how to actively recruit and hire PWDs and provide individualized accommodations to allow them, and the organization as a whole, to be successful. The current paper attempts to offer tangible suggestions through the illustration of one mid-sized company's successful implementation of a disability-inclusive mission and practices.

This paper is structured as follows. The first section outlines the methods used in this study, which is an inductive case study of one company's approach to hiring and retainment of PWDs. The organization and its specific subdivisions involved in the recruitment, hiring, and retainment of PWDs are described. The results of the study are then outlined, highlighting the company's mission and values, the actual inclusivity practices employed, and the impacts of these practices. The next section of the paper discusses the main findings of the study and connects those findings to existing research on PWDs in the workplace and general organizational culture. In this study, it was found that recruiting, hiring, and supporting PWDs in the workplace resulted in more workplace diversity, a willingness to provide accommodations for all employees, positive corporate climate, and increased productivity. Thus, this paper contributes evidence in support of the positive impacts of initiatives for hiring PWDs on employees, including PWDs, as well as the organization as a whole.

The purpose of this study was to implement an in-depth case study of a biotechnology company that has expressed commitment to inclusive hiring and retainment and a clear recognition of the company-wide benefits of hiring PWDs. We hoped to understand more about the company's mission and values and how these values translate into policy and action that supports hiring, retaining, and supporting all employees, including PWDs. This study was guided by the following questions: (1) What are the overarching attitudes, values, and approaches taken by this company in their efforts to be inclusive and diverse? And, (2) How does this company extend their message of wellbeing and support throughout all levels and departments of the company?

Given the formative nature of this investigation, we used a qualitative case study design that allowed for exploration of events or phenomena from multiple sources, with the purpose of looking into the unique experience of the people's lives and interactions with the environment ( Corbin and Strauss, 2015 ). This inductive qualitative design allowed for an open evaluation of the complexities and considerations involved in recruiting, hiring, supporting and retaining PWDs through in-depth interviews with multiple staff members at different levels within the company ( Maxwell, 1996 ). Interviews and focus groups were utilized to gain an open, in-depth understanding of employees' beliefs and experiences which was essential to informing our qualitative inquiry ( Gill et al. , 2008 ). As this investigation is exploratory in nature and our aim is to place greatest emphasis on the voices of our participants, a qualitative approach was necessary ( Miles and Huberman, 1994 ). The research team involved in data collection and analysis was comprised of six rehabilitation psychology faculty and doctoral students across three universities in the United States. Team members discussed potential biases prior to engaging in data collection and again before completing the analysis to reduce the potential for biases to influence the results.

Organization

The subject of this study is a large biotechnology company centralized in the Midwest. This company has been recognized as a Great Place to Work-Certified™ company, meaning they have been independently evaluated by the third party and recognized for having a positive workplace culture.

Organizational structure

This biotechnology company was described as using a Matrix Organization style where managerial teams spanned different units within the company ( Galbraith, 1971 ). The HR director noted this as key to maintaining priority on employee retention across all units. Part of the company's success in supporting and accommodating their employees was attributed to the division of responsibility within the company. Rather than processing all accommodations requests through a general HR team, their approach involved multiple specialized teams working together to recruit and retain employees. These included teams focused on (1) Recruitment, (2) Wellness, (3) Leaves and Accommodations, (4) Business Partners, and until recently (5) Security, which aligned under another unit in the organization.

The Leaves and Accommodations team has a lead role in processing accommodation requests while also ensuring that all employees and teams are aware of the potential for accommodations and how to use them. As one employee described, “I did not know until I received that initial email that we do have the entire accommodations team. They can reach out if you need anything.” The Business Partners act as the HR representatives across each unit in the company (e.g., the clinical lab). Business Partners were said by the HR director to play a key role in informing the HR team of needs within a particular unit while also ensuring that the company culture, priorities, and values extends to each unit. The Security team, although no longer part of HR, continue to fill several roles in the company, including acting as first responder for physical and mental health needs. These teams do not want the onus to always be on employees but seek to preemptively act in providing support by assessing potential problems within the company's various departments and teams.

Researchers worked with state employment agencies to identify companies with a reputation for inclusive disability hiring. Once identified as a company of interest, the research team worked closely with leadership from the biotechnology company to organize a site visit and to conduct interviews and focus groups. Prior to the site visit, the research team requested access to any written information, forms, or documents relevant to their disability efforts (e.g., company policies). Key personnel were also asked to provide a few written answers regarding the implementation of practices and policies related to their disability initiative. These were reviewed by the research team prior to the site visit in order to allow for better understanding of company activities prior to conducting interviews and focus groups. Researchers met on the day of the site visit to discuss potential biases and strategize how these biases could be minimized. The present study consisted of interviews with the director of human resources (HR) as well as members of the teams responsible for recruiting and for providing accommodations. A focus group was held with four direct-line supervisors and another with seven current employees, some of whom identified as having a disability that significantly impacted their work. All interviews were conducted in person at the company headquarters in the Midwest. Interviews and focus groups were complimented by information obtained through on-site observation, company policies and other written materials, the company website, and a climate survey described in the measures section below. A tour of the facility with an emphasis on any disability-related environmental adjustments, modifications, or supports helped inform data collection and analysis. The interviews and site tour led to the collection of more written policies and procedures that were added to the materials for analysis.

Focus groups and interviews ranged from 20 to 90 min in length. All interviews and focus groups were completed with two members of the research team present, serving to reduce to the possibility of interviewer bias while also enriching the data collection process with multiple perspectives. Audio recordings of all interviews and focus groups were later transcribed for analysis. Approval from the university's Institutional Review Board was also obtained to conduct this study with human subjects, and informed consent was obtained from all participants.

In addition to the on-site observations of the research team, a climate and policy checklist was used to assess the different disability-related aspects of the company during the post-site visit analysis of data. This checklist consisted of 70 disability-related policies or practices that were marked as being present or not present in the company. The semi-structured interviews and focus groups conducted on-site included primarily open-ended questions addressing the recruitment, hiring, integrating, and retaining workers with disabilities. The interviewees were asked to reflect on the company's practices and policies that were intended to create an inclusive environment for workers with disabilities and the results of these efforts.

Data analysis

All data sources were reviewed and coded by two coders before coming to consensus on the major themes and insights. Interview and focus group transcripts were read by each coder initially and data were categorized into practical and mindset themes. Further categories were determined by grouping data into subthemes, including a focus on inclusive practice, supportive climate, emphasis on retainment, and being mission driven. In the event of a disagreement between two coders, a third coder was included to discuss the item until an agreement was reached. Once created, the coding and narrative of the case study were brought to the larger research team for a community-based approach to refining and improving the accuracy of the case study.

This case study focuses on the inclusive hiring and retention practices of a large biotechnology company and the perceived impact of these efforts. In contrast to many other disability diversity case studies, this was not focused on a disability program but rather on capturing a company culture focused on seeking to make disability inclusivity part of all that they do. Results emerged from data collected over several months of 2019 and include analysis across individual and group interviews as well as on-site observation, the climate survey, and written policies (e.g. employee handbook, Autism Workforce guide). Results are broken down into the following categories: (1) Company Mission and Mindset, (2) Disability Inclusive Practices, which include both hiring and retention practices, and (3) Impact of Inclusive Practices. We proceed with a review of each category and their domains.

Company Mission and Mindset

An overarching theme noted throughout the interviews, whether senior management or recent hire to work in the lab, was the sense of the company's value-driven mission. An internal document describing the company Wellness program provided a Vision Statement that captures the ethos of their mission: “We believe our employees are our most valuable resource and through educating and encouraging the health and well-being of our employees, we in turn can achieve a higher level of patient care.” Throughout every interview and every evaluation of the company's organizational documentation and structure, this mission-driven focus emerged. As a member of the Leaves and Accommodations team stated, “We live our mission statement here, whereas other companies have a mission statement. And it's getting everyone on board from top down to have an environment of support.” Multiple members of the management team noted that this sense of mission did not happen by accident or stem from policy alone but was the result of embedding themselves within departments and consistently communicating those core values. Of their role, one manager stated, “We're out there being that kind of culture keeper.”

The first question a lot of companies will ask is, “Are we legally required to do this?” Which is a fine question. It's a valid question because you want to make sure that you're doing everything legally. But I feel like [company's] first question, because we already know we're in legal compliance across the board for Leaves and Accommodations is, “Why not?” and “What can we do?”

I think it starts with that commitment that we want to be an inclusive workforce, but you cannot always anticipate what that is going to mean for the next person who walks through your door. I think if you're coming at it with that yes mindset … You know if you start there, you can usually find a way to make it work.

You're not asking all of your employees to fit one exact requirement, once you're thinking, “What do they need?” and “How do they learn?” … just the mindset of how to help them be successful here, “What does that mean for them?” That's a real shift from, “I'm the boss, and this is how it works here.”

Disability Inclusive Practices

The mission and mindset of the company produced a number of inclusive practices that could be categorized into hiring, retention or some combination of the two.

Inclusive hiring practices

The director of HR spoke to the company's consideration of community in shaping their hiring practices and performance saying, “We look for partnerships with different organizations, both because we want to be a good partner and because of the organization's being really good conduits for people looking for work.” Another manager emphasized the importance they place on partnering with specific government and non-profit agencies aimed at improving the education and employment of diverse members of the local community and organizations in the area.

Speaking to the inclusive mindset that fuels this biotechnology company, an HR manager spoke of how they work with applicants saying, “whether there's a disability or not, our team approaches these interviews with the same level of fairness and equality. And I think that's become just part of the [company's] DNA.” Part of this DNA, or inclusive mindset, was noted to stem from their resources to work with a diverse workforce. The HR manager continued by saying applicants with disabilities “do not even phase our hiring team now because we are so used to the support we get from our Leaves and Accommodation team.”

Inclusive retention practices

The emphasis on retaining employees was consistent across all collected information. Multiple HR management spoke of viewing employees as being in long-term careers when hiring on with the company. Employees seem to get the message with one stating, “We heard management talk about wanting to create careers,” in contrast to what the employee described experiencing in other companies as being used for a couple of years. Two methods employed for fostering this career mentality were supporting employees in pursuit of upward movement and facilitating employee engagement within the company. Leadership emphasized providing employees with what they need to be successful, including a change in position or environment when needed. An HR director reported the mutual benefit of this approach by saying, “I am a firm believer that culture and engagement of employees has a very positive effect on revenue, on your total growth as an organization. If we were constantly replacing people, that would be a big time and money sinkhole.” He concluded that recruiting for diversity and then “giving them the tools and the support to really be successful” benefits all.

Inclusive retention practices were often very individually based. One frontline supervisor said, “I do not have any accommodation that's exactly like the other. The [Leaves and Accommodation Team] really tailor to the individual.” A member of the Recruitment team emphasized the importance of getting the employee's perspective when addressing accommodation needs stating, “It might not be something that our team is familiar with, but we get familiar with it really quickly.”

creating a welcoming environment and teaching people what it’s like to work here … The first step is really that inclusive culture of teaching and recognizing that people are coming from different places and at different levels of their readiness in order to actually hit the floor for their job.

Regarding supervisor training, an HR director described the Family and Medical Leave Act (FMLA) and ADA training they provide to supervisors, with the comment that “We do not ask [supervisors] to understand all of the intricacies of it. What we do want them to understand through the training is to be receptive.” Multiple supervisors described the trainings with appreciation for their thoroughness and for the support that was available to them, as captured by the supervisor who stated, “There's [a training] for the inclusive workplace, which is wonderful training.” This supervisor continued, “The fact that they even do that is impressive to me.” It was noted across interviews that providing the trainings in multiple formats (audio-video, written, etc.) was appreciated by supervisors and employees with disabilities alike.

The company was noted for taking a proactive approach to accommodations as part of their retention efforts. One employee shared his experience saying, “Because I identified with a disability through the onboarding process, probably within a week or two from hire, I got an email saying, “Hey, you identified with a disability. Are there any accommodations that we can provide?” Another employee described their supervisor's approach to accommodations after having already been with the company, reporting, “When I started in the lab, I never knew how physical that was. It was actually my supervisor that pulled me aside and said, ‘You know, we have accommodations and we can help you through this.’”

Inclusivity as organizational identity: impact of Inclusive Practices

I would absolutely say that it’s a benefit … By recruiting a diverse population and then giving them the tools and the support to really be successful, that goes a really long way towards engagement and culture, and that certainly has direct impact on the bottom line.

Another manager talked of how providing employee accommodations according to their need improved performance and retention. A front-line supervisor spoke of an employee who was about to be terminated for poor performance. In one of the final meetings before termination, the employee disclosed a hidden disability that had been affecting their work performance. Accommodations were put in place and the employee retained their position through strong performance.

Through working with [PWDs], we've found some of the things that we offer would actually be good to offer to a broader population as well. If we are looking at different ways of learning, different ways of training, for instance, even if somebody has not self-identified as having a disability, we all learn differently … Personally, I think that it gives you a more open mindset, things that I had not considered before.

I think there's an effect on morale … We get a lot of really positive feedback about the diversity of our team. A lot of people who choose to work at [company], I find that a big driver behind their decision to work here is because they have a personal connection to our mission. They feel good about working for a company that offers these accommodations for their colleagues and coworkers. They can see people of different abilities working in different ways towards the same mission.

These positive perceptions often connected directly to job satisfaction and a desire to stay with the company. A front-line supervisor said, “I think it helps us retain the employees who truly want to be here … and helps us keep really talented people.” One employee with a disability stated that she is quick to tell her friends and acquaintances to work at this company. She continued, “If you're looking to improve your life, apply.” More seriously, another employee with a disability described being made fun of at her previous company and how refreshing it was to be able to trust that she would be treated respectfully at this biotechnology company. One of the strongest statements on the retention efforts of the company came from an employee who talked of switching from his partner's health insurance for the first time in years because of the stability he felt in his work. He stated with a tone of pride, “I'm actually going to be taking over the insurance because I feel comfortable here.”

Workplace challenges faced by PWDs result from the intersection of individual needs, societal structures, and employer initiatives, policies, and procedures that influence company culture ( Chan et al. , 2010 ). One way to minimize workplace experiences of discrimination and invalidation for PWDs is for companies to actively value diversity and inclusivity in mission, mindset, and policies through organizational sensemaking. By engaging in ongoing sensemaking, companies can allow for individuals to promote disability-inclusive mindsets by both creating and influencing their organizational environment ( Weick, 1979 ; Glynn and Watkiss, 2020 ). The company at the center of this study specifically organizes their work around the central mission of disability-inclusivity and overarching support and accommodations for all—a common mission through which, as was shared in interviews, employees make meaning of their work. As meaning-making is a human-driven process, this study illuminates how Weick's theory of organizational information can explain the practical implications of organizing a corporate culture around a common goal ( Tsoukas et al. , 2020 ). This approach recognizes PWDs as assets as companies provide them with the supports needed to be successful. Such efforts uplift the individual employee and the company-wide productivity and culture ( Lindsay et al. , 2018 ). This company offers a useful model for other companies looking to implement a disability-inclusive approach that values the contributions of all employees.

Organizational culture as a reciprocal process

Interview participants made it clear that this company values a sense of connectedness and reciprocal respect among team members. Weick (1979) suggests that organizations and those belonging to them experience a reciprocal relationship—that is, individuals both create and are influenced by their organizational environment through the process of sensemaking. This proposition suggests that general organizational attitudes (such as prioritizing inclusivity and diversity in the workplace) must be fed through both top-down and bottom-up pathways. Weick further suggests that the way members of an organization make sense of experiences informs organizational action in a recursive process. This sensemaking process is often equally cognitive and emotional ( Mikkelsen et al. , 2020 ) and can stretch from broad, company-wide search for meaning to the minutiae of even the language used by an organization ( Bakken and Hernes, 2006 ).

Using this framework, the company at the center of this study appears to make opportunistic sense of diversity, seeing PWDs as introducing unique skills, perspectives and talents to the company. This sensemaking process is likely driven both by a recognition of the overall productivity and economic benefits as well as employees' emotional investment in the value of working alongside and learning from diverse team members. The development of an organizational culture and mission is more recursive than linear where both meaning and action influence sensemaking and contribute to the ultimate climate ( Glynn and Watkiss, 2020 ). The company as a whole and the individual employees reciprocally influence each other in terms of company values, productivity, and inclusive culture. This organization clearly benefits from such symbolic interactionism, as interviews with employees and management revealed an unequivocal emphasis placed on supporting and being supported by employees with disabilities.

Dedication to morale and community

Staff and leaders both reported a felt sense of community and a dedication to elevating morale throughout this company. It seems that promoting a sense of connectedness and support fosters positive attitudes, productivity, and customer service for this mid-sized organization. Some researchers suggest that leaders can improve productivity, employee relations, and talent development when they align their actions with valuing a diverse workforce ( Hughes, 2016 ). Thus, fostering acceptance, support, and growth for diverse employees is fundamental to prosperous relationships internally and externally for the organization.

Previous findings suggest that high levels of cohesion among members of a group may predict performance ( Gammage et al. , 2001 ). Additional research suggests when a group agrees on the same organizational goals, they subsequently experience higher rates of group drive, cohesion, and productivity ( Greene, 1989 ). This is apparent in the current case, as interview participants reported feeling the congruence with the company goals of commitment to customer service and valuing and supporting team members.

How to replicate elsewhere

It's deciding as a company, “Are you going to be willing to go that much further for the employee to go above and beyond what the federal government is asking you to do?” But it is completely replicable if you desire that for your company.

I think it starts with that commitment to be an inclusive workforce … But you cannot always anticipate what that is going to mean (The next person who walks through your door, what might they need to be successful?). It is not necessarily something that I think every organization wants to do.

The HR director also encouraged companies to think about their employees in terms of their unique value rather than their ability to fit the model of the organizations' values. Overall, this biotechnology company's employees and administrators seemed optimistic about the possibility of their model, philosophy, and approach to hiring and recruitment to be replicated elsewhere. This approach becomes possible through a stance of curiosity, a willingness to learn, and approaching each potential employee as having a unique skillset and worldview.

Conclusions and implications

Intentionally recruiting, hiring, and retaining PWDs in the workplace increases the diversity of perspectives in the workplace and positively impacts the company bottom line;

Successful outcomes from a company-wide diversity and inclusivity initiative results from both top-down and bottom-up implementational commitment; and

Increasing corporate diversity through this kind of initiative has a positive effect on employee attitudes and engagement and the overall corporate climate.

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Acknowledgements

Preparation of this manuscript was supported in part by the National Institute on Disability, Independent Living, and Rehabilitation Research through Grant # HHS-2016-ACL-NIDILRR-RT-0138 to Virginia Commonwealth University, Rehabilitation Research and Training Center on Employer Practices. The opinions expressed herein do not necessarily reflect the endorsement or position of the U.S. Department of Health and Human Services.

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The Man Who Filed More Than 180 Disability Lawsuits

Is it profiteering — or justice?

Albert Dytch uses a wheelchair because of muscular dystrophy. Credit... Balazs Gardi for The New York Times

Supported by

By Lauren Markham

• Published July 21, 2021 Updated June 15, 2023

Listen to This Article

DanVy Vu was out on the floor of her restaurant one chilly evening in December 2019 when a staff member called her to the hostess station to assist an angry customer — a man in a wheelchair who, along with his wife, had been stuck outside. The couple said that they had tried the accessible entrance through a courtyard but found the gate locked, which had left the man shivering out in the cold while his wife circled back to a nonaccessible entrance at the front of the restaurant for help opening the gate.

Vu apologized profusely and looked up their reservation. It showed that they had requested an accessible table. But Vu’s staff was still getting used to a new reservation system and hadn’t seen the note; all the accessible spots were occupied. Vu apologized again and ushered the couple to the hallway to wait. Soon, she sat them at the accessible part of the bar. The couple ate and left.

Vu’s restaurant, Top Hatters Kitchen and Bar, had been open in San Leandro, Calif., for eight months. As a child, Vu used to cook for her family, who resettled to Southern California as refugees from Vietnam, and for a series of boarders who lived with them. A self-taught chef, she ran a food truck for six years after moving to the Bay Area, but the work was taxing. (Vu once posted on Instagram: “Our tired truck broke down so often, one year, we were invited to our repair shop’s company holiday party.”) She dreamed of opening a real, brick-and-mortar restaurant. For three years she saved up and applied for loans until she could afford it.

By the time that happened, Vu was 40. She had lived in San Leandro — a town of nearly 90,000 people that is both more diverse and more affordable than nearby San Francisco and Oakland — for roughly a decade. Vu was determined to open a contemporary yet affordable restaurant that welcomed everyone. In the style of California cuisine, Top Hatters incorporated a variety of influences — her Vietnamese heritage, her husband and co-owner Matthew Beavers’s Italian background. Less than a mile from their home, she found an old milliner shop (hence the restaurant’s name) and started construction on a hip, open-floor-plan restaurant that wrapped around the courtyard with the accessible entrance. “All our savings and dreams and hopes went into it,” Vu told me.

In the spring of 2019, Top Hatters opened to admiring local reviews, and Vu seemed to be on her way. It was when she was assisting the frustrated guest in a wheelchair that she suddenly recalled something she had been told when the restaurant was being designed: that they had to follow the rules “down to the smallest detail” when it came to the Americans With Disabilities Act. In recent years, litigation against businesses accused of violating the A.D.A. has risen sharply, as disabled people demand compliance with a law that has been in effect for 31 years. But some see the cases — many from people who make a practice of routinely filing suits — as a ploy for cash. Vu recalls being told that some people sued businesses “to make a living.”

Three months later, as Top Hatters was getting ready to celebrate its first birthday, Alameda County issued a shelter-in-place order as a result of Covid-19. Vu had to lay off 20 of her 25 employees. To keep the restaurant from going under, she dipped into savings; she also successfully applied for a Paycheck Protection Program loan and qualified for mortgage deferment. Then, in May, Vu and Beavers were served with papers: Someone was suing the restaurant for violations of the Americans With Disabilities Act.

Vu’s instinct had been right. The customer filing the suit was the one from that December — Albert Dytch, a 71-year-old man with muscular dystrophy who has filed more than 180 A.D.A. lawsuits in California. With the support of a prolific lawyer named Tanya Moore, Dytch has sued restaurants, movie theaters, shops and educational institutions.

The complaint against Top Hatters noted the difficulty Dytch faced getting into the restaurant: “Had Plaintiff been alone, he would have been unable to alert anyone that he was trying to get in.” It also claimed that the counter where he was eventually seated wasn’t at a wheelchair-accessible level — “Plaintiff had to reach upwards to reach his drink and food” — and that there was limited clearance behind him. “Someone bumped into his wheelchair, which jostled him as he was eating,” it read. Dytch was suing Top Hatters for $75,000.

To Vu, the lawsuit came as a shock — $75,000 seemed like a tremendous amount to compensate for Dytch’s experience. On the other hand, if Dytch didn’t have a disability, he wouldn’t have faced these barriers — barriers that were not just unpleasant but also, if verified, in violation of federal law. Was Dytch’s lawsuit merely a moneymaking venture? Or was it a necessary demand for justice?

In the United States , people with disabilities are “among the poorest, least employed and least educated of all minorities,” Lennard J. Davis, a scholar of disability studies, has written. They face discrimination in education and employment; difficulty accessing services like transportation and housing; and the high costs associated with being disabled in a society that has been built for people without disabilities and offers a limited social safety net. (Queer people and people of color with disabilities face even more discrimination than their white, straight counterparts.) For much of our nation’s history, a person with a disability in the United States had few civil rights related to the disability at all.

Then, in the 1980s, a bipartisan group of lawmakers — many of whom had close family members with disabilities or were themselves disabled — began agitating for sweeping civil rights legislation, similar to the Civil Rights Act of 1964, on behalf of people with disabilities.

In Congress, skeptics argued that newly specified rights for the disabled would threaten businesses expected to shoulder the costs of making spaces accessible. “Blank Check for the Disabled?” ran a 1989 editorial headline in The New York Times. But proponents said it would be an economic boon that would move disabled people off social-welfare programs and “into jobs, into restaurants, into shopping centers and into community activities,” as the legislators seeking a law wrote in a formal letter to colleagues. Disabled people organized mass grass-roots protests, helping galvanize a pan-disability movement that linked populations who previously considered themselves entirely distinct — veterans who had lost limbs at war along with the deaf, for example — in a common cause.

The Americans With Disabilities Act was signed in 1990 by President George H.W. Bush. Title III of the A.D.A. decreed that all businesses open to the public were required to be accessible and to make “reasonable modifications” to that end. In response to right-wing resistance to expanded governmental reach, those who fought for the A.D.A.’s passage decided against setting up a federal office to monitor or enforce it, the way the Drug Enforcement Administration enforces narcotics laws and Immigration and Customs Enforcement pursues immigration violations. Instead, lawmakers concluded that A.D.A. enforcement should happen through the courts — essentially transferring the role of enforcement from the government to individual disabled people and the judges who heard their cases.

As soon as the bill became law, lawsuits began. A majority of early cases were filed under Title I, related to employment discrimination against those with disabilities (the 1993 movie “Philadelphia,” starring Tom Hanks, was the story of a lawyer who sued his firm under the A.D.A. after being fired for having H.I.V.), and Title II, under which government offices could be sued for unequal access. Soon, though, plaintiffs also began to file Title III cases — those related to physical barriers — against ice-cream parlors, rental-car companies, movie theaters, hotels, private universities and the like. Many won. The A.D.A. was fulfilling its promise of opening access for, and reducing discriminatory practices against, the disabled.

Worried about offering a financial incentive to sue under the A.D.A., lawmakers wrote the law in a way that limits plaintiffs’ ability to collect monetary damages. A successful A.D.A. suit generally ends in injunctive relief — a court’s forcing the violation to be fixed — and the plaintiff’s legal fees being paid in full by the defendant. (A plaintiff can sometimes collect damages if he suffered bodily harm as a result of the access barriers, but this is rare.)

Still, there was — and still is — money to be gained in these suits. The fact that the law requires defendants to cover legal fees can encourage lawyers to sue, and even, critics claim, to drag the cases on for months or years. In fact, the $75,000 for which Dytch was suing Top Hatters was an estimate of the legal and expert-consultancy fees that would be required in his case. Even if a defendant agrees to fix the problems immediately, these cases can require months of legal procedure, expert investigations and mediation sessions, which ratchet up the bill.

While a number of Title III A.D.A. cases were filed in the 1990s, lawsuits increased in the 2000s and rose even more in the 2010s. Word had gotten around that filing Title III A.D.A. cases could help people with disabilities accelerate long-overdue improvements in access. There was another big factor, too: Many states had codified their own versions of the A.D.A., and some of those laws — including in California, Florida, Pennsylvania, Illinois and New York — did allow for financial damages. That meant a lawsuit invoking both the A.D.A. and one of these state laws could result in money for a plaintiff. In 2012, plaintiffs filed 2,495 Title III cases in federal court. By 2017, that had more than tripled to 7,663 cases — more than half of which were filed in California or Florida, whose state laws can be particularly beneficial to A.D.A. plaintiffs.

California is an especially popular place for A.D.A. lawsuits because its separate state law, called the Unruh Civil Rights Act, allows for damages of up to $4,000 each time a plaintiff encounters an accessibility barrier — meaning that a plaintiff can visit an establishment several times, encounter the same barrier and state a claim for each visit. Most disability-related cases in California — including the one Dytch filed against Top Hatters — cite violations under both the A.D.A. and the state’s Unruh Act in a single, bundled lawsuit in federal court.

Of course, most cases settle, with a defendant typically agreeing to fix the violations that the lawsuit surfaced and pay back the plaintiff’s legal fees, generally in the thousands of dollars. In states that allow damages under their disability laws, a plaintiff can also be financially compensated through that process.

A paraplegic man named Samuel Love is known throughout California for filing hundreds of claims, mostly about noncompliant parking at businesses such as gas stations and hotels — violations he is able to find without even leaving his car. In March 2020, Love sued a San Jose store owner named Dong Nguyen in federal court in the Northern District of California, claiming that he “failed to provide wheelchair accessible sales counters.” A judge dismissed the lawsuit after Love missed a deadline for filing paperwork. “They are not customers,” Nguyen told me of serial litigants like Love. “They go around looking for something and sue.” Love’s A.D.A. lawyer, Dennis Price, noted that his clients “very frequently” patronize the businesses they sue and “are customers by any reasonable metric.”

Price works at the Center for Disability Access, a prolific source of A.D.A. suits. Though its name might suggest a nonprofit operation, the Center for Disability Access is in fact a wing of a private law firm called Potter Handy. The firm files thousands of cases each year, many with repeat plaintiffs, including Love.

Another client of Price’s, a lawyer named Scott Johnson, who is quadriplegic, is perhaps the most infamous of serial litigants. This is partly because of the volume of his cases — on occasion he has filed more than a dozen lawsuits in a single day — and partly because he has himself encountered legal trouble, including a federal indictment for failing to pay taxes on hundreds of thousands of dollars he has earned in recent years from A.D.A. settlements. (Johnson pleaded not guilty — his lawyer in that case, Malcolm Segal, contends that Johnson’s settlement money was tax-exempt — and the case is awaiting trial.)

Johnson’s former paralegals have said that he used to instruct them to drive around town looking for violations so Johnson could file suit. At times, paralegals said, he would accompany them, but rarely leave the car. (Price said Johnson was always present when potential violations were identified.) In any given year, Johnson files 300 to 400 lawsuits in California; he has filed thousands over the course of his career. A handful of businesses closed for good following lawsuits: a hamburger joint, a deli, a beloved pool hall. “As for Scott Johnson, he got nothing from me but a closed business,” Mike Murphy, the owner of the shuttered Jointed Cue pool hall, told me. “The heartbreaking part of this is that it’s a staple in the community. It’s a historic place. And that’s gone because of this lawsuit.”

Price noted that a business’s closure after a lawsuit “does not imply causation.” He said that he and his colleagues see their clients as helping to enforce an important law. “These are testers,” Price told me. “They are making sure that California is compliant. They are putting themselves and their time on the line for access.” In 2007, in response to a lawsuit claiming vexatious disability litigation, the United States Court of Appeals for the Ninth Circuit issued an opinion making a similar point: “For the A.D.A. to yield its promise of equal access for the disabled, it may indeed be necessary and desirable for committed individuals to bring serial litigation advancing the time when public accommodations will be compliant with the A.D.A.”

Once Dytch sued Top Hatters, Vu thought it might be over for the restaurant. But she rallied, taking out a loan with a double-digit interest rate, while also borrowing from relatives, to keep the business afloat and pay a lawyer.

She did some research on Dytch and learned that he was a serial filer: “He did this for a living,” she concluded. She was committed to her restaurant’s being accessible to all guests, she said, but to her eye, Dytch’s lawsuit was a ploy for cash. The timing, during a catastrophic pandemic, didn’t help. On some nights, Vu had only six orders, but she needed roughly 50 to break even. “We basically kept it open and running so that our workers would have a job,” she told me. In spite of the generosity she felt from a band of customers who stayed loyal to the restaurant — one even donated $200 from his stimulus check to Top Hatters — she was sinking deeper into debt and growing misanthropic. “For a while there,” she told me, “I just looked at everyone like: ‘You’re going to sue to me. You’re out to get me,’ you know?”

In many accessibility lawsuits, A.D.A. inspectors are hired to take a look at properties and see where they fall short. According to Candice Lui, an inspector who visited Top Hatters, the counter that Dytch had complained about was, in fact, compliant. Lui recommended a few other changes, however, to ensure accessibility: moving a chair and cabinet from the bathroom; using stickers to indicate which tables were accessible; installing a locking mechanism to keep the gate from accidentally closing during business hours. (Dytch said, “I don’t believe the list of recommended changes adequately represents the situation, but confidentiality constrains me from providing a fuller account.”)

To an extent, Vu felt vindicated. “But my lawyer said it’s cheaper and faster to just settle and do what they say than fight it,” she told me. In September 2020, the parties settled: Top Hatters would pay a certain sum and fix the issues that the inspector had found. The terms of the settlement prevent both parties from disclosing the amount. It was less than the initial $75,000 Dytch demanded but large enough that Vu recalls thinking, Well, there goes our tuition money . (Her son was heading to college.)

Afterward, she alerted every small-business owner she knew to hire a consultant to be sure of compliance. “I was like a walking P.S.A.,” she told me. “Everywhere I went, I said: ‘Do you know about this? You have to be careful or this could happen to you!’” She wanted to make sure that everyone had fully accessible, nondiscriminatory businesses — and that they fixed any barriers before they were served with papers.

I wanted to meet Albert Dytch to hear his side of things, so I wrote him a note. He expressed some hesitation: “Most media coverage has been slanted against plaintiffs like me.” He sent me a link to a website he recently created . “The civil rights of those with disabilities are violated every time they’re denied the same benefits and privileges as the able-bodied,” the home page reads. “Yet relatively few have the time, energy, courage and fortitude to insist that these rights are honored and protected in accordance with the law. I invite you to view the situation from the vantage point of someone in a wheelchair.”

To the extent that serial litigation over the A.D.A. has received attention — mostly in local papers and on television — it’s common for litigants like Dytch to be cast as enemies of the small business. In a 2020 law-review article, the lawyer Evelyn Clark wrote, “Media outlets often tell the stories of greedy individuals targeting unassuming small business owners who were unaware of the A.D.A. and their noncompliance (despite the law having been in effect since 1990).”

Clark, who is disabled, points to a segment of a 2010 episode of “This American Life” entitled “Crybabies” — a rare instance of A.D.A. lawsuits receiving national attention — in which a reporter follows a serial A.D.A. litigant around in an attempt to call him on his bluff. “In California, a kind of crybaby cottage industry has popped up around, of all things, the Americans With Disabilities Act,” Ira Glass, the host of the show, said. To Clark’s eye, this kind of coverage distorts the main issue, which is that people with disabilities continue to face significant barriers in getting through their daily lives. She told me that the existing media coverage has been so bad — and, to be fair, the lawsuits so copious — that “people see a person in a wheelchair come into their restaurant and think they’re going to get sued.”

Disabilities, Kim E. Nielsen writes in “A Disability History of the United States,” rub up against the American value of individualistic, self-sufficient grit. People with disabilities are thus often cast as a drain. Serial litigants like Dytch are read as scammers trying to turn a profit.

Eventually, Dytch agreed to meet in his backyard in the hope of offering a different perspective. He lives with his wife, Andrea, in a sweet, one-story cottage in a tree-lined residential neighborhood of Oakland. They had left the front door open for my arrival, and when I walked in, Andrea was readying Dytch to head outside into the chilly spring afternoon, helping him pull his jacket over his arms and draping a blanket across his legs. Dytch wore wire-rimmed glasses and a baseball cap over a thinning head of hair. He greeted me warmly and invited me to follow him outside.

Under the shade of his backyard pine, Dytch told me that in 2008 he attended a muscular-dystrophy support group where an A.D.A. plaintiffs’ lawyer named Tom Stewart made a presentation about disability rights. Stewart also talked about the possibility of seeking legal relief, and Dytch signed up to speak with him. In 2009, he filed his first case. It set in motion what has become almost a second career for Dytch — one that, like most jobs, requires time, comes with a fair dose of stress and offers financial compensation. (Dytch later started working with Moore.) While exact amounts are confidential, Dytch told me that in any case that settles, his share has typically been $4,000 or less — and, in some cases, he has ended up with no financial compensation at all.

Early on, he began to feel that filing these cases helped him find the agency he had lost as his illness progressed. The more limited his mobility became, the more of the world had become closed to him. Restaurants and shops he once frequented and enjoyed were no longer places he could go with ease or at all. He felt he was fighting not just against the difficulties, barriers and humiliations he routinely faces as a disabled person trying to go about his life, but on behalf of a larger community. The work wasn’t easy, though, and its adversarial nature could feel painful. “It’s like being a parking-meter person,” he said. “They don’t thank you.”

From his perspective, it’s not his lawyer who is drawing out the cases but rather the businesses. If businesses truly wanted to be accessible, they would fix the barriers and settle cases as soon as possible, keeping costs lower for everyone (though even this strategy can cost defendants tens of thousands of dollars in settlement and legal fees, as it had for Top Hatters, and more if there is significant remediation needed to fix accessibility barriers).

Dytch’s complaint against Top Hatters explained that he and his wife had gone there to celebrate his birthday. He had made the reservation with a specific accessibility request, and it simply wasn’t met. It was frustrating and demoralizing, Dytch explained to me, to have to ask for special help to get inside. When I asked if he could recall any other details about the evening, he said he couldn’t.

I also asked Dytch about another restaurant he had recently sued. “I think there was an issue with the bathroom,” he said. He stared at the table for a moment, trying to remember. “And there was a problem with the seating.”

In a Google search, I was served an ad by an A.D.A. defense lawyer named Rick Morin. “Albert Dytch Lawsuit,” the ad read. “We Provide Strong & Effective Representation to Help You Take a Stand. Call Now!” Dytch is a marriage and family therapist, and if potential clients search for his name and see Morin’s ad, it could impact his business. Morin, in Dytch’s eye, is using his name to profit from A.D.A. lawsuits. (Morin wrote in an email, “These mom-and-pop businesses cannot defend themselves on their own.”) Dytch told me he created his own website to have somewhere to send people inquiring about the lawsuits and to create a platform for his perspective.

I asked Dytch why, if accessibility is the purpose, he brings lawsuits instead of just writing a letter to a business asking for a fix. The simple answer, he said, is that asking doesn’t work: He has tried again and again, only to go back to a business and see the same barriers in place. The fact is, the A.D.A. functions because it presents a legal threat. Most businesses will pay thousands of dollars to fix their bathrooms or install wheelchair ramps not because it’s the right thing to do, but because they could be sued for many thousands of dollars more for not having done it. “This is a law that exists in the heavens,” Davis, the scholar of disability studies, told me. “It doesn’t work unless you bring a lawsuit.”

At the same time, Dytch told me plainly, “If there weren’t some money involved, I probably wouldn’t do it.” It takes a good deal of his time to bring such suits, not to mention the stress and public exposure of the work. Right before we went outside, Dytch asked his wife to grab a piece of paper he had left on the printer. Now he took it from his coat pocket and slid it across the table to me. “Disability Out-of-Pocket Expenses,” the typewritten document was titled. He had listed estimated costs for a disabled person’s basic needs. One-time expenses included $10,000 for an overhead lift system and $4,000 for an adjustable bed. A wheelchair-accessible van set him back $65,000 (Dytch is on his second) and a power wheelchair, which was partly covered by insurance, cost $10,000 (he’s on his third).

Then there are the annual costs. As Dytch’s mobility worsened, it became more difficult for his wife to provide adequate care, which put a strain on their relationship. “I want to be your wife, not your caretaker,” she told him. This was hard to hear, but he knew she was right, so they hired outside help. Now they spend $55,000 for a daytime caregiver. He expects to have to hire a nighttime caregiver soon as well, because he has been needing to get up more often at night. That could cost another $45,000. Living in this world as a disabled person is costly — emotionally, physically and financially.

“The law is subsidizing me to correct things,” he told me. “Then I earn money to defray the exorbitant costs of being disabled.” Viewed this way, the United States government is not only outsourcing the enforcement of its law to individuals like Dytch, it is also outsourcing the cost of social supports for the disabled to businesses. The Americans With Disabilities Act wasn’t set up to defray the cost of being disabled, though, but to simply ensure access.

Before I left, Dytch led me inside and gave me a tour of his house. In his bedroom, a metal crossbeam was bolted into the ceiling; a hook fastened to the beam could slide from side to side. This was part of the overhead lift system mentioned on the paper he showed me. “I sit in this harness here,” he explained, picking up a set of cloth straps from where they lay on the mattress, “and then this hook attaches to it and helps lift me in and out of bed.” They had installed these beams in the bathroom, too, so he could be lifted onto the toilet and into the shower. The fixtures have made a huge positive impact on his mobility and on his wife and caretaker. But they weren’t cheap.

Dytch told me the pandemic has made him a little hesitant to sue, as he knows businesses are struggling. While he filed several cases, like the one against Top Hatters, for visits he made before government-ordered shutdowns started in March 2020, he hasn’t filed any based on visits he made after that time — his slowest pace since his first lawsuit in 2009: “I have to wrestle with my conscience and my wife,” he said.

Andrea, he explained, has grown more hesitant about lawsuits. She is a compassionate and sympathetic person by nature and is conflicted about them. “I wish that the burden of enforcement did not fall on the disabled themselves,” Andrea wrote to me later. “Yet the help Albert has gotten through settlements has made it possible for us to afford some of the care he needs.” Dytch doesn’t want businesses to suffer, but he also wants to fight for proper access. The question he now has to ask himself, he told me, is “What is the right thing to do, under these circumstances, that causes the greatest good?”

The reason defendants are generally willing to settle A.D.A. lawsuits is that there are, in fact, widespread violations of the law. The A.D.A. includes standards for accessible design, over 279 pages, on specifics including the grade of a ramp, the width of a parking space, the length of a toilet-stall grab bar and the height of a mirror. While some of these details might appear insignificant to a person without a disability, they are there for good reason. “A matter of inches with a mirror might seem minor to some of us,” Davis said, “but for a person of small stature, it means the difference between being able to use the mirror and not.”

Most business owners are not aware of these details. In fact, proprietors of businesses that are sued might have believed they were in compliance — having received signoff by local building inspectors who may or may not be well versed in A.D.A. guidelines — until the lawsuit makes evident they were not. If a plaintiff wins a lawsuit, the defendant will be compelled to make “readily achievable” accommodations — any changes to make their building accessible that don’t come with tremendous cost or effort. Putting in a ramp, for instance, is a readily achievable accommodation, but rebuilding an old elevator shaft so a person in a wheelchair can ride between floors is not, even though the A.D.A. standards call for wheelchair-accessible design.

Top Hatters has survived, but Vu is still crawling her way out of debt. The restaurant has a lot of outdoor tables these days, and she wonders how to ensure that she’s complying with accessibility requirements in that context. For instance, if a heat lamp is blocking one of the paths to a table because a customer requested it, can Vu just return it to its regular spot if someone who uses a wheelchair comes in or should it not block the path in the first place? “I really want things to be comfortable for all our guests, and sometimes it’s hard to know what the rules really are,” she said.

Though Dytch stopped suing while the pandemic kept people homebound and businesses closed, others have not. From March to December 2020, Scott Johnson filed 303 complaints in the Northern District of California. In the same period, Samuel Love filed 56 cases in that district. Both continued strong into 2021 — often filing multiple cases a day.

Lately, Love has been filing cases against hotels that he claims have failed to adequately describe the details of their A.D.A. accessibility measures on their websites. These lawsuits are part of a genre of A.D.A. case that is well suited to the pandemic because they can be filed without a plaintiff’s ever leaving home. Guidance from the United States Justice Department deals with accessibility in online reservations systems, but there have been disputes over how to interpret it. Philip H. Stillman, a lawyer hired by Marriott International and a consortium of independent hotels to defend them against such lawsuits, contends that the guidance requires online reservations systems only to list accessibility features in broad terms. Specifying that a room is A.D.A.-compliant should be enough. Price, the Potter Handy lawyer, argues that the guidance is vague and its implications unclear.

“Again, my clients — they are advocates,” he told me. The suits he brings, Price emphasizes, are often intended to open up more accessibility in the future. His firm once helped plaintiffs bring suit against several car dealerships for failing to provide hand controls to allow people with mobility impairments to test-drive their cars. In 2017, the Ninth Circuit ruled in favor of the plaintiffs, concluding that offering hand controls was a “reasonable modification” under the A.D.A. Because of this legal precedent, dealerships began keeping such technology on hand, meaning people with physical-mobility challenges are able to test-drive cars more easily in California as a direct result of these suits. Price is hoping the same will be true of hotel websites in the future.

I visited San Francisco’s Handlery Union Square Hotel, which had been included in the recent flurry of lawsuits regarding website listings. Jon Handlery, whose grandfather started the business in 1928, now owns it with his children. He met me in the parking garage and led me through the empty hotel. The Handlery closed and laid off nearly all its staff in April 2020 because of the pandemic and reopened only recently.

Handlery emphasized to me how badly he wants to do right by disabled people. They are customers, after all, and keeping any customer happy is good business. The hotel has been sued four other times for various disability violations and never by anyone who has actually stayed there. At this point, he sees these lawsuits as a cost of doing business — and he knows that, even if he believes a case is frivolous, it’s better to just quickly settle the case than to rack up legal fees trying to fight it and risk losing big. But the hit is extra hard in an industry that has been eviscerated in the past year.

So far, none of the hotel lawsuits have been decided in favor of the plaintiff, but a vast majority are still pending. In June, the case against the Handlery was dismissed by a federal judge. Stillman, who represented the hotel, is among those who believe lawyers bringing these suits are after money, not justice. “Think about it,” he tells me. “You file the same exact complaint 200 times, and each one you’re seeking attorney’s fees of $25,000.” Even if the 200 suits settle for, say, $5,000 each, Stillman says, “that’s a lot of money for doing nothing.”

The trouble with accessibility litigation is that the discussion always seems to boil down to money. Frequently left out is the role of the government. If the federal government truly prioritizes disabled people’s needs, defendants and lawyers told me, perhaps it should help offset the costs for small businesses to improve their accessibility. At the very least, they said, city and county building inspectors should be better versed in the A.D.A. and ensure compliance upon inspection, thereby taking some of the burden off the disabled to act as enforcers.

But what to do about truly vexatious litigation — if it’s even possible to parse the genuine from the frivolous? When there is lawyer profit to be made from these cases, as the law professor Helia Garrido Hull wrote in a 2016 article in The Cornell Journal of Law and Public Policy, “money is diverted away from the real need — correcting the underlying violation that justified the lawsuit and providing the disabled plaintiff with equality and accessibility.”

Defense lawyers I talked with spoke of the need for a “curing period” — a set amount of time after a case is filed during which a defendant can fix any problems, thus ending the lawsuit. The lawyer Evelyn Clark is in favor of a curing period, pointing out that lawsuits can last months or even years before a barrier is remedied and that this would significantly speed things up.

Many disability-rights activists, however, oppose curing periods. Davis believes they would disincentivize businesses from doing anything about a known violation unless a lawsuit is filed. Another option, he suggests, is for bar associations to sanction lawyers who have been found to file frivolous suits. Repeat litigants could be subject to some kind of judicial review. There could also be more oversight of the fees that plaintiffs’ lawyers charge defendants after a successful case, to ensure they are not excessive.

In the United States, one in four people lives with some form of disability; around the world, one billion people do. For now, that is. When the House version of the A.D.A. was introduced, Major Owens, of New York, said, “When you think about it, our entire country is made up of disabled people and temporarily able-bodied people. The people we are protecting are not a mysterious, distant ‘them’ but rather ourselves.”

As someone who could once move around the world much more freely, Dytch is less willing to swallow the indignities of being denied access than he might have otherwise been. When he created his website, he chose the hummingbird as a kind of mascot. He became enraptured with the bird after a friend traveled to Costa Rica and came home bearing photographs of all the different species she encountered.

“I admire hummingbirds for their intense vitality, their breathtaking beauty and their exquisite grace,” he writes on his website. “They’re the only birds with the ability to fly in all directions, including backwards and sideways. Hummingbirds can go practically anywhere.” In this way, he told me, they are hyper-abled; the whole world is wide open to them. “I don’t expect to turn into a hummingbird anytime soon,” he writes. “In the meantime, I’d settle for the ability to go anywhere most able-bodied people can go and do what most able-bodied people can do.”

Lauren Markham is a fiction writer, an essayist and a journalist who focuses on youth, migration, the environment and her home state, California. Balazs Gardi is a photographer who splits time between San Francisco, Los Angeles and New York and is known for creating long-form, immersive projects that explore the tensions between people and their environment.

An earlier version of this article referred incorrectly to A.D.A claims filed in federal court. It is not the case that $75,000 was the minimum demand claim needed to get Albert Dytch's case into federal court. The article also misstated the amount of Dytch's expenses that were covered by insurance. Dytch paid $10,000 for his power wheelchair out of pocket; the remaining cost was covered by insurance; it is not the case that only $10,000 of his accessibility expenses were covered by insurance. 

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Widespread bias, discrimination directed toward people with disabilities who seek health care

• Feinberg School of Medicine

More than 30 years after the passage of the Americans with Disabilities Act (ADA), people with disabilities report having a difficult time accessing health care and often find that doctors’ offices refuse to accommodate them. Now, a new Northwestern Medicine study of national practices reports that physicians may be choosing to deny care to people with disabilities, and some use discretionary excuses to strategically discharge them from their practice.

Scientists from Northwestern University Feinberg School of Medicine, in collaboration with colleagues from University of Massachusetts and Harvard Medical School, conducted focus groups with physicians drawn from a national database. Physicians who participated in these groups expressed bias toward people with disabilities, and a substantial number of participants reported that they make strategic choices to deny care to people with disabilities, the study found. This includes making statements such as “I am not taking new patients,” “I do not take your insurance,” or telling the patients they need specialized care and therefore, “I am not the doctor for you.”

“Our body of work suggests that physician bias and discriminatory attitudes may contribute to the health disparities that people with disabilities experience,” said corresponding study author Dr.  Tara Lagu , director of the Institute for Public Health and Medicine’s Center for Health Services and Outcomes Research at Feinberg and a professor of hospital medicine and medical social sciences. “We need to address the attitudes and behavior that perpetuate the unequal access experienced by our most vulnerable patients.”

Additionally, physicians in the study described a lack of knowledge about how to provide accommodations for people with disabilities, and some expressed adversarial attitudes toward the ADA, saying the legislation “works against physicians.”

“We need to address the attitudes and behavior that perpetuate the unequal access experienced by our most vulnerable patients.”

– Tara Lagu

“The ADA is a key facilitator of autonomy and independence for people with disabilities,” Lagu said. “The physicians’ attitudes toward the ADA were upsetting and disappointing.”

The ADA requires all medical practitioners to provide “full and equal access to their health care services and facilities” for people with disabilities. This includes building accessibility, such as creating spaces that are designed to be user-friendly for everyone, including people who use wheelchairs, canes and mobility scooters; assisting with transferring patients from chair to examining table; and providing sign language interpreters and other accommodations. Prior studies have reported that people with disabilities have difficulty obtaining appointments with physicians and are known to receive less preventive care than their non-disabled counterparts.

“Meaningful improvements in access to high-quality care for people with disabilities will require a multipronged approach and should include changes to medical education, efforts to increase the presence of accessible equipment and changes in our approach to physician reimbursement,” said co-author Carol Haywood , research assistant professor of medical social sciences at Feinberg. “At Northwestern, we are working to lead change through research and also through advocacy and improvement efforts such as the Disability Advocacy Coalition in Medicine, patient safety and quality efforts at Northwestern Memorial Healthcare, and the NM Champion Network Disability Chapter.” 

The study was published Oct. 3  in the October issue of the journal   Health Affairs.

This study follows work conducted by Lagu in 2012, in which she attempted to make an appointment for a fictional patient who used a wheelchair. Of 256 surveyed practices in the 2012 study, 56 (22%) reported they could not accommodate the patient. Of the rest, more than half planned to transfer the patient using methods considered to be unsafe.

More recently, Lagu and Dr. Lisa Iezzoni , professor of medicine at Harvard Medical School, published results of a national survey of physicians: only 56% reported that they welcome patients with disabilities to their practice; 36% said that they know “little or nothing” about the ADA; and only 41% were confident that they could provide similar quality of care to patients with disabilities as they could to those without disability.

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• v.10(3); 2020

Original research

Disability discrimination and well-being in the united kingdom: a prospective cohort study, ruth a. hackett.

1 Health Psychology Section, King's College London, London, UK

2 Behavioural Science and Health, University College London, London, UK

Andrew Steptoe

Raymond p. lang.

3 Leonard Cheshire Research Centre, Epidemiology and Public Health, University College London, London, UK

Sarah E. Jackson

Associated data.

bmjopen-2019-035714supp001.pdf

Disability discrimination is linked with poorer well-being cross-sectionally. The aim of this study was to explore prospective associations between disability discrimination and well-being.

Prospective cohort study.

The United Kingdom Household Longitudinal Study.

Participants

Data were from 871 individuals with a self-reported physical, cognitive or sensory disability.

Primary outcome measures

Depression was assessed in 2009/10. Psychological distress, mental functioning, life satisfaction and self-rated health were assessed in 2009/10 and 2013/14.

Data were analysed using linear and logistic regression with adjustment for age, sex, household income, education, ethnicity and impairment category. Perceived disability discrimination was reported by 117 (13.4%) participants. Cross-sectionally, discrimination was associated with depression (OR=5.40, 95% CI 3.25 to 8.97) fair/poor self-rated health (OR=2.05; 95% CI 1.19 to 3.51), greater psychological distress (B=3.28, 95% CI 2.41 to 4.14), poorer mental functioning (B=−7.35; 95% CI −9.70 to −5.02) and life satisfaction (B=−1.27, 95% CI −1.66 to −0.87). Prospectively, discrimination was associated with increased psychological distress (B=2.88, 95% CI 1.39 to 4.36) and poorer mental functioning (B=−5.12; 95% CI −8.91 to −1.34), adjusting for baseline scores.

Conclusions

Perceived disability-related discrimination is linked with poorer well-being. These findings underscore the need for interventions to combat disability discrimination.

Strengths and limitations of this study

• The use of the prospective United Kingdom Household Longitudinal Study allowed us to examine well-being over a 4-year period.
• The disability discrimination measure took into account several kinds of discriminatory behaviour and included multiple settings where perceived disability discrimination could be encountered.
• Our findings are based on perceptions of disability discrimination rather than objective encounters with disability discrimination.
• Disability discrimination was only assessed at one point in time, meaning our measure does not necessarily reflect pervasive discrimination.

Introduction

'Disability’ is an umbrella term for long-term impairments, activity limitations and participation restrictions, experienced by an individual with a health condition in interaction with their environment. 1–3 In the UK, the prevalence of self-reported disability is rising, with 21% of the population reporting a disability in 2017–2018, an increase from 18% in 2007–2008. 4 This increase is likely driven by population ageing. The majority of disabled people report experiencing difficulties in everyday life. For example, disabled people in Britain have lower educational attainment, are less likely to be employed and are more likely to live in poverty than non-disabled adults, 5 with knock-on effects regarding access to health and other services. 6

These practical difficulties experienced by a person with a long-term impairment may be aggravated by and interact with discrimination in the person’s environment. Disability discrimination has been defined as unwanted, exploitative or abusive conduct against disabled people which violates their dignity and security or creates an intimidating or offensive environment. 7 Although disability is a protected characteristic under equality legislation, 1 disability discrimination is perceived to be common. In a 2015 population survey of 27 718 adults from 26 European countries, 50% of participants reported disability discrimination to be widespread, a 4% increase from 2012 data. However, the reasons behind this increase are unclear due to the cross-sectional nature of the Eurobarometer data. 8

Disability discrimination can happen in a variety of settings including on the street, in the workplace and in public venues such as shops or pubs. 9 Recent British data suggest that disabled people are more likely than non-disabled people to report feeling unsafe when walking alone and to worry about physical attack and theft. 10 11 Disability is the second most common motivator for hate crime incidents, after race in England and Wales. 12 In the workplace, several studies suggest that a greater proportion of disabled than non-disabled individuals report experiences of discrimination. 7 13

A growing body of research has investigated discrimination as a determinant of well-being. 14–16 Meta-analyses have linked perceived discrimination with depression and psychological distress and with poorer life satisfaction and self-rated health. 14–16 However, disability discrimination was not assessed in two of these meta-analyses and the majority of previous working has focused on racism. 14 15 In the most recent pooled analysis of 328 studies, of which only 8 studies concerned physical illness discrimination and disability discrimination, 16 the combined category of physical illness/disability discrimination was associated with greater psychological distress and lower self-esteem.

Several cross-sectional studies have assessed perceived disability discrimination alone in relation to well-being outcomes. One study of 229 individuals with an intellectual disability in England found that self-reported stigma was associated with a greater number of depression and anxiety symptoms. 17 Two analyses of the Australian Survey of Disability, Ageing and Carers (n=9655 and n=6183, respectively) linked disability discrimination with greater psychological distress. 18 19 This association was similarly observed in a Swedish general population survey. 20 Research has also linked perceived disability discrimination with lower life satisfaction in Canadian adolescents, 21 Korean women with severe disabilities 22 and Israeli nationals with physical disabilities. 23 Perceived disability discrimination has been associated with poorer self-rated health cross-sectionally in four studies 19 24–26 including a general population analysis of 52 458 individuals, from the European Social Survey. 25

Cross-sectional correlations are difficult to interpret: perception of discrimination may result in emotional distress, but it is also possible that emotional distress leads to alterations in how people interpret social interactions with others. To date, only one study has assessed prospective associations between perceived disability discrimination and well-being. 27 In an analysis of older adults (≥50 years) participating in the US-based Health and Retirement Study (HRS), perceived disability discrimination was associated with poorer life satisfaction, self-rated health and greater loneliness over 4 year follow-up.

Overall, previous research has been dominated by cross-sectional studies, precluding the assessment of the temporal relationship between perceived disability discrimination and well-being outcomes. No longitudinal studies have compared people with a disability who do or do not report discrimination and well-being outcomes. To address these limitations, this study aimed to investigate cross-sectional and prospective associations between perceived disability discrimination and well-being in a UK population cohort.

Study population

This study uses data from Understanding Society: The UK Household Longitudinal Study (UKHLS). 28 The overarching purpose of UKHLS is to provide high-quality longitudinal data about the health, work, education, income, family and social life of the UK population. 29 Data collection began in 2009/10 (wave 1) with follow-ups annually. The current study uses data from waves 1 (2009/10) and 5 (2013/14). These data were collected through face-to-face interview via computer-aided personal interview and self-completion paper questionnaires and from wave 3 via computer administered self-interview. The UKHLS comprises a representative general population probability sample of UK households, in addition to an ethnic minority boost sample. 29 30 The general population sample is based on proportionality stratified clustered samples of residential addresses in England, Scotland and Wales. In Northern Ireland, an unclustered systematic random sample of domestic addresses was selected. The ethnic minority boost was selected from high concentration ethnic minority areas, where 80% of the UK’s five major ethnic minorities live. 29

Our data come from the ‘extra 5 min sample’ of over 8000 participants who had an additional 5 min of questions on issues pertinent to ethnicity research including discrimination. This sample comprises mostly ethnic minorities (n=6722) who were drawn from the ethnic minority boost along with a comparison group of white participants (n=1428). 30 We restricted our sample to those who responded to the disability discrimination questions (n=4788) with a self-reported disability (n=871). Self-reported disability was based on a positive response the question “ Do you have any health problems or disabilities which mean you have substantial difficulties with any of the following areas of your life” across any of the 12 types of difficulty assessed. These included issues with manual dexterity and mobility, problems with memory or the ability to concentrate, difficulties with learning and understanding as well as hearing and sight impairments. The response rates for the UKHLS general population sample and the ethnic minority boost at wave 1 were 81.8% and 72.4%, respectively. 30 The response rate for the ‘extra 5 min sample’ was 42.5%. At wave 5, there was loss to follow-up (n=431), leaving a follow-up sample size of 440 participants. Our definition of disability did not include mental health-related impairments.

Perceived disability discrimination

To assess discrimination, participants were asked whether in the past 12 months they (a) felt unsafe, (b) avoided going to or being in, (c) had been insulted, called names, threatened or shouted at or (d) had been physically attacked, in seven different settings: 1) at school/college/work, 2) on public transport, 3) at or around bus or train stations, 4) in a taxi, 5) public buildings such as shopping centres or pubs, 6) outside on the street, in parks or other public places or 7) at home. If they answered yes to any one of these questions, a follow-up question asked them to choose a reason from a list of categories including disability, sex and ethnicity among others. It was possible to choose multiple settings and attributions for the perceived discrimination. Those who attributed any experience of discrimination to disability are treated as cases of perceived disability discrimination.

Outcome variables

Self-reported doctor-diagnosed clinical depression was measured at wave 1 (2009/10) with responses coded as yes/no. Depression was not analysed longitudinally due to a lack of incident cases. All other outcomes were assessed at waves 1 (2009/10) and 5 (2013/14). Psychological distress was measured using the General Health Questionnaire (GHQ)-12, 31 which involved ratings of 12 statements including whether the individual had “ Been able to enjoy your normal day to day activities ” or whether they ‘ felt constantly under strain ’ with response options of 0=‘no’ and 1=‘yes’. Total scores range from 0 (least distressed) to 12 (most distressed). The 12-item Short-Form Health Survey (SF-12) mental component summary score was used to measure limitations caused by emotional, mental health and social functioning issues. 32 Items included ratings of feelings experienced over the past 4 weeks such as “ Have you felt downhearted or blue ?” or “Accomplished less than you would like” . Overall scores were derived using standard methods ranging from 0 (low functioning) to 100 (high functioning). 33 Life satisfaction was assessed using one item asking participants how satisfied they were with their ‘life overall’, with scores ranging from 1 (completely dissatisfied) to 7 (completely satisfied). Self-rated health was assessed using a single item: “ Would you say your health is…poor/fair/good/very good/excellent?” In keeping with previous investigations, 34 35 self-rated health was dichotomised with 0 being ‘good/very good/excellent’ and 1 meaning ‘poor/fair’.

A number of covariates (assessed at wave 1) that are likely relevant to perceived disability discrimination and well-being were selected a priori for inclusion in our analyses. Age in years was entered as a continuous variable, as there may be age differences in reports of discrimination 36 and in well-being outcomes. 37 Sex was included as a binary variable (male/female) based on previous literature demonstrating sex differences in the impact of discrimination on health. 38 Income and education were included as covariates as there may be socioeconomic differences in the perception of discrimination and in well-being outcomes. 36 39 Equivalised monthly household income was calculated by dividing total household net income by the modified Organization for Economic Cooperation and Development equivalence scale to adjust for the effects of household size and composition. 40 Income was entered as a continuous variable in our models. Education was included as a 3-level categorical variable: 1 ‘university degree’, 2 ‘high school qualification’ and 3 ‘no qualification’. As our sample was ethnically diverse, we included ethnicity as a 4-level variable with 1 being ‘white’ including those of white British, white Irish and any other white background, 2 being ‘south Asian’ including Indian, Pakistani and Bangladeshi individuals, 3 being ‘black’ including black African and black Caribbean participants and 4 being ‘other’ including individuals from Chinese and mixed backgrounds. There were four categories of impairment measured in the study: ‘physical’ disability which included difficulties with manual dexterity and mobility; ‘cognitive’ disability including problems with memory or the ability to concentrate, learn and understand; ‘sensory’ disability including hearing (apart from using a standard hearing aid) and sight impairments (apart from wearing standard glasses) and ‘other’ which encompassed reports of unspecified disability not captured in the other categories.

Statistical analyses

We compared the characteristics of those who did and those who did not report disability discrimination at wave 1 using χ 2 tests for categorical variables and independent samples t-tests for continuous variables. Associations between perceived disability discrimination and the various well-being measures were assessed using linear regression for continuous outcomes and logistic regression for categorical outcomes. For cross-sectional analyses, depression, psychological distress (GHQ-12), SF-12 mental component score, life satisfaction and self-rated health at wave 1 (2009/10) were the outcome variables. For prospective analyses, psychological distress (GHQ-12), SF-12 mental component score, life satisfaction and self-rated health at wave 5 (2013/14) were the outcomes. Age, sex, household income, education, ethnicity and disability type at wave 1 were controlled for in all analyses. Baseline (wave 1) scores/status on the relevant well-being variable was included as an additional covariate in prospective analyses. Only those with complete case information at wave 1 (n=871) and wave 5 (n=440) were included in the analyses. Results from linear regression analyses are presented as unstandardised B and 95% CIs. Results from logistic regression analyses are presented as ORs and 95% CI. All analyses were unweighted and conducted using SPSS V.24.

Sensitivity analyses

We carried out three sensitivity analyses. In our first, we assessed whether those who were lost to follow-up (n=431) differed from those who provided data at both waves (n=440). We tested whether this impacted the results by conducting the cross-sectional analyses (wave 1) including only those who provided follow-up data at wave 5. We carried out our second sensitivity analysis to test the possibility that one of the four types discriminatory behaviour contributing to the measure of perceived disability discrimination (ie, feeling unsafe, avoiding somewhere, being insulted or being physically attacked) was driving the results. We tested this cross-sectionally and prospectively by repeating our analyses removing each type of discriminatory behaviour in turn. In our third sensitivity analysis, we tested whether the prospective results from our complete case analysis at wave 5 (n=440) were similar when missing outcome information was imputed for those participants lost to follow-up (n=431).

A total of 871 participants were included in the study and of these 117 (13.4%) reported perceived disability discrimination. Disability discrimination was the most commonly reported form of discrimination in the sample, followed by age discrimination (4.3%), sex discrimination (3.9%), ethnicity discrimination (3.8%), religious discrimination (2.2%) and discrimination on the basis of sexual orientation (0.5%). Of the categories of disability discrimination assessed, the most commonly reported was feeling unsafe (86.1%; 95% CI 79.48 to 92.74), followed by avoiding somewhere (72.8%; 95% CI 64.08 to 81.55), being insulted (23.5%; 95% CI 14.33 to 32.73) and being physically attacked (2.8%; 95% CI 0.04 to 5.98). The most common settings in which disability discrimination was reported were on the street (77.8%; 95% CI 70.13 to 85.42), in public buildings such as shops or pubs (59.8%; 95% CI 50.81 to 68.84), on public transport (51.3%; 95% CI 42.09 to 60.47) and at or around bus or train stations (40.2%; 95% CI 31.16 to 49.19). A quarter of participants reported experiencing disability discrimination at home (25%; 95% CI 17.61 to 33.67). Perceived disability discrimination was less frequently reported in school or workplace settings (12.8%; 95% CI 6.67 to 18.97) or in taxis (12%; 95% CI 6 to 17.93). The prevalence of the various types of perceived disability discrimination and the settings in which the discrimination occurred for different types of disability can be found in online supplementary table 1 . There were no statistically significant differences between people with different types of disability in discrimination type or discrimination setting.

Supplementary data

The baseline characteristics of the sample are displayed in table 1 . The group who reported disability discrimination were younger on average (48.29±14.89 years) than those who did not report discrimination (53.42±16.56 years). They were more likely to be white (27.4% vs 20.3%) and to be better educated than those who did not report discrimination, with a greater proportion holding university degrees (28.2% vs 22.7%). Physical disability was most common in those who did not perceive discrimination (46.6%), whereas other unspecified disabilities (65%) were most frequently reported by those who perceived discrimination.

Associations between perceived disability discrimination and sociodemographic factors (wave 1) and well-being measures (waves 1 and 5)

Data are presented as means (SD) and n (%). Percentages are valid per cent.

SF-12, 12-Item Short-Form Health Survey.

Cross-sectional associations between perceived disability discrimination and well-being

Our findings suggest that individuals who perceived disability discrimination were significantly more likely to report a diagnosis of clinical depression (OR=5.40; 95% CI 3.25 to 8.97, p<0.001) and were more likely to rate their health as fair/poor (OR=2.05; 95% CI 1.19 to 3.51, p=0.009) than those who did not perceive disability discrimination, independent of covariates (first panel table 2 ). Those who reported discrimination also had significantly higher levels of psychological distress (B=3.28, 95% CI 2.41 to 4.14, p<0.001), poorer mental functioning on the SF-12 (B=−7.35; 95% CI −9.70 to −5.02, p<0.001) and lower life satisfaction (B=−1.27, 95% CI −1.66 to −0.87, p<0.001), than those who did not report discrimination.

Cross-sectional and prospective associations between perceived disability discrimination and well-being outcomes

All analyses are adjusted for age, sex, household income, education, ethnicity and disability type. Prospective analyses are additionally adjusted for baseline well-being status/score.

Possible scores on the psychological distress scale range from 0 to 12, SF-12 mental component scale range from 0 to 100 and the life satisfaction scale scores range from 0 to 7.

*p<0.05.

† n= 751 for the no perceived discrimination group; n= 117 for the perceived discrimination group.

‡ n= 454 for the no perceived discrimination group; n= 82 for the perceived discrimination group.

§ n= 742 for the no perceived discrimination group; n= 117 for the perceived discrimination group.

¶ n= 454 for the no perceiveddiscrimination group; n= 84 for the perceived discrimination group.

**p<0.01.

††n= 754 for the no perceived discrimination group; n= 117 for the perceived discrimination group.

‡‡ n= 177 for the no perceived discrimination group; n= 31 for the perceived discrimination group.

§§ n= 239 for the no perceived discrimination group; n= 43 for the perceived discrimination group.

¶¶ n= 171 for the no perceived discrimination group; n= 34 for the perceived discrimination group

***p <0.001.

††† n= 385 for the no perceived discrimination group; n= 55 for the perceived discrimination group.

Prospective associations between perceived disability discrimination and well-being

In prospective analyses (second panel table 2 ), those who reported perceived disability discrimination at wave 1 had higher levels of psychological distress 4 years later at wave 5 than those who did not report discrimination, independent of covariates and baseline psychological distress (B=2.88, 95% CI 1.39 to 4.36, p<0.001). We detected a prospective association between perceived disability discrimination at wave 1 and poorer SF-12 mental functioning at wave 5 (B=−5.12; 95% CI −8.91 to −1.34, p=0.008). Those who reported disability discrimination at wave 1 had slightly lower life satisfaction (means=4.14 vs 4.67) and a greater proportion rated their health as fair/poor (67.3% vs 62.1%) than those who did not report discrimination at follow-up (wave 5). However, these differences did not reach statistical significance.

In the first sensitivity analysis ( table 3 ), cross-sectional findings for those who provided complete data at wave 5 were similar to the full-sample at wave 1. The demographic characteristics of those lost to follow-up were similar to those of complete cases ( table 4 ). Only education differed significantly between the groups, with those who provided complete data at wave 5 more likely to hold a degree (27.0%) than those lost to follow-up (19.7%).

Cross-sectional and prospective associations between perceived disability discrimination and well-being outcomes (complete cases at wave 5)

†n= 177 for the no perceived discrimination group; n= 31 for the perceived discrimination group.

‡n= 239 for the no perceived discrimination group; n= 43 for the perceived discrimination group.

§n= 171 for the no perceived discrimination group; n= 34 for the perceived discrimination group.

¶n= 385 for the no perceived discrimination group; n= 55 for the perceived discrimination group.

**p<0.01, ***p <0.001

Participant characteristics at wave 1 (2009/10) of complete cases and those lost to follow-up

Data are presented as means (SD) and n (%).

*Complete cases are defined as those who were present at wave 1 and provided data on at least one well-being measure at wave 5.

In the second sensitivity analysis, removing each of the discriminatory behaviours from the measure of discrimination in turn did not alter the cross-sectional results ( table 5 ). Prospectively, the association between perceived disability discrimination and increased psychological distress remained the same regardless of the type of discriminatory behaviour removed from the measure. For SF-12 mental functioning, the association was fairly robust to the type of discriminatory behaviour, but was slightly attenuated when ‘feeling unsafe’ was removed from the discrimination variable (p=0.058). Again, no significant prospective associations were detected for life satisfaction and self-rated health.

Sensitivity analysis: perceived disability discrimination measure excluding each discriminatory behaviour in turn

Model 1 excludes ‘ felt unsafe at some place’ from the measure of perceived disability discrimination; model 2 excludes ‘ avoided some place’ ; model 3 excludes ‘ was insulted at some place’ and model 4 excludes ‘ was attacked at some place’ .

* P<0.05, **p<0.01, ***p<0.001.

Coeff, unstandardised B coefficient.

In our final sensitivity analysis ( online supplementary table 2 ), we repeated the prospective analyses with imputation for missing outcome information of participants lost to follow-up (n=431). The prospective relationship between perceived disability discrimination and poor SF-12 mental functioning remained (p=0.034). However, there was no longer a statistically significant prospective association between reported discrimination and psychological distress (p=0.128).

In a sample of UK-based participants with self-reported disability, perceived discrimination was associated with higher prevalence of depression, greater psychological distress and poorer mental functioning, life satisfaction and self-rated health. Prospectively, disability discrimination was associated with increased psychological distress and worse mental functioning 4 years later. Our results were robust to adjustment for a range of covariates and were not driven by any specific kind of discriminatory behaviour. No significant prospective relationships with life satisfaction and self-rated health were observed.

Previous literature has been dominated by cross-sectional studies. To our knowledge, only one previous study has investigated the prospective association between disability discrimination and well-being outcomes. In this analysis of US adults from the HRS cohort, perceived disability discrimination was associated with poorer life satisfaction and self-rated health over 4-year follow-up. 27 In the current study, we observed poorer mental functioning and greater psychological distress 4 years later in those who reported disability discrimination, taking into account baseline scores on these variables. We failed to detect a significant association between perceived discrimination and life satisfaction or self-rated health at follow-up. Although on average, those who perceived disability discrimination in our sample had poorer life satisfaction and were more likely to rate their health as fair/poor at follow-up than those who did not perceive discrimination, these differences did not reach statistical significance. One reason for the divergence in findings between our study and the HRS analysis 27 may be study design. We limited our analyses to those with self-reported disability, whereas in the HRS study associations between well-being and disability discrimination were assessed across the entire sample. Our analysis offers more precision in the assessment of the relationship between disability discrimination and well-being outcomes, by directly comparing people with disability who did and did not perceive discrimination. Another possibility for these null findings may be that significant associations between discrimination and life satisfaction and self-rated health do not become apparent until older adulthood, perhaps allowing for repeated exposures to disability discrimination. However, this assertion remains to be tested. Another potential explanation is that the impact of ongoing disability discrimination on life satisfaction and self-rated health in our sample had already become apparent at the time of the baseline survey, limiting the scope for further decline.

Our study adds to the cross-sectional literature linking perceived disability discrimination and poorer well-being outcomes by demonstrating associations in a community sample of disabled people living in the UK. Our results extend the findings of an earlier study linking stigma and depression in those with intellectual disability, 17 by establishing this relationship in a sample with a broader range of disability. In keeping with previous studies, we observed greater psychological distress 18–20 and poorer life satisfaction 21–23 27 in those who reported disability discrimination. Our study adds to this existing evidence by demonstrating this link in a UK-based sample for the first time. Similar to earlier work from Australian, European and North American samples, 19 24 27 41 we observed a relationship between perceived disability discrimination and poorer self-rated health. Cross-sectional studies cannot determine whether perceived disability discrimination predicts poor mental well-being, or whether perceptions of discrimination are an indicator of psychological distress. Our prospective findings therefore add to the field in establishing that perceived disability discrimination predicts psychological distress and poorer mental functioning, net of baseline associations, so has negative implications for future well-being.

This is an observational study and longitudinal analyses do not necessarily imply causality. There could be unmeasured factors responsible for the associations that emerged. Nevertheless, with regard to the pathways linking perceived disability discrimination and well-being, there are several possibilities that could explain our results. One mechanism could be that perceptions of disability discrimination in healthcare settings serve to impede access to health services. An analysis of HRS found that reports of frequent discrimination in healthcare settings were predictive of new or worsened disability over 4-year follow-up. 42 Quantitative 38 43 and qualitative 44 evidence suggests that those who perceive disability discrimination are less likely to seek healthcare. However, there may be sex differences in this association, with a Swedish study only detecting a relationship between disability discrimination and healthcare avoidance in women. 38 However, no interaction between sex and perceived discrimination was detected in the current study (data not shown).

Poor health behaviours are another potential mechanism linking disability discrimination and poorer well-being. For example, perceived disability discrimination has been linked with worse sleep quality in the HRS, with psychological distress acting as a full mediator of this association. 45 It is possible that disabled people could engage in negative health behaviours as a means of coping with the psychological impact of discrimination. In a study of 304 individuals with disability, perceived disability discrimination was positively associated with illicit drug use. 46 Eating may offer a source of comfort in the face of discrimination. 47 A US study of over 5000 individuals observed a link between physical disability discrimination and overeating. 48

Another possibility is that perceived disability discrimination and well-being are linked through disturbed stress-related biological processes. In line with the theory of allostatic load, perceived chronic discrimination causing frequent activation of the stress response system, could over time result in disturbances across multiple biological systems. 49 Systematic reviews and meta-analyses, which have predominately focused on racism, suggest that discrimination is linked with heightened cardiovascular stress reactivity, 14 50 while race 50–52 and weight discrimination 53 have been linked with alterations in cortisol. To our knowledge, no study has investigated associations between perceived disability discrimination and changes in cardiovascular or neuroendocrine activity. In the HRS cohort, perceived disability discrimination was linked with raised C reactive protein levels cross-sectionally. 54 Heightened inflammation is thought to be predictive of poorer mental well-being, 55 offering a plausible pathway between perceived disability discrimination and later psychological distress and poorer mental functioning seen in the present study. Further work is required to confirm this assertion, particularly as the HRS analysis was not limited to those with a confirmed disability.

Our study had several strengths. The use of the UKHLS cohort allowed us to examine well-being over a 4-year period across a wide age range (17–96 years), while adjusting statistically for factors that could confound associations. The discrimination measure took into account several kinds of discriminatory behaviour and included multiple settings where perceived disability discrimination could be encountered.

However, the study was not without limitations. We lost a considerable number of participants at follow-up, and although the cross-sectional findings did not differ between those who provided data at both waves and those lost to follow-up (sensitivity analysis 1), we cannot be sure that selection bias due to low retention did not impact our findings longitudinally due to the extent of missing data. Indeed, in imputed analyses (sensitivity analysis 3) the association between disability discrimination and well-being held for SF-12 mental functioning but not for psychological distress. Our findings are based on perceptions of disability discrimination rather than objective encounters with disability discrimination. It is possible that perceiving oneself as a target for discrimination and objective encounters with discrimination could have differing consequences for well-being. Indeed, earlier work in a sample with significant health limitations indicates that individuals with poorer mental well-being may be more likely to perceive stigma. 56 Future studies assessing reciprocal prospective associations between perceived disability discrimination and well-being could help to clarify this issue. Our discrimination measure was based on self-reports of experiences during the past 12 months and was therefore subject to recall bias. Furthermore, this measure was not specific to disability discrimination. The fact that participants were able to attribute multiple reasons for their experience of discrimination, could have helped avoid priming or bias. Other tools specifically designed to assess disability discrimination could have garnered different results. Our sample was ethnically diverse, and we took ethnicity into account in our models. Although disability discrimination was the most commonly reported form of discrimination in this sample, perceived discrimination on the basis of ethnicity may also have been relevant for this sample. Further work is required to understand how disability discrimination interacts with ethnicity discrimination, as well as other types of discrimination to influence well-being. Disability discrimination was only assessed at one point in time, meaning our measure does not necessarily reflect pervasive discrimination. However, other work in UKHLS suggests that perceived disability discrimination is still frequently reported at later stages of data collection. 57 Future research is required to determine whether perceptions of disability discrimination are persistent or alter over time. We operationalised perceived discrimination as a simple binary variable and had no information on the frequency of encounters with discrimination over time. Therefore, the potential dose-response relationship between the frequency of discrimination and well-being remains to be elucidated. Our study included participants with physical, cognitive and sensory disabilities. However, our sample is unlikely to have captured those with severe cognitive impairments due to the demands of survey participation. For a large proportion (37%), their disability type was unknown and classified as ‘other’, limiting our understanding. While, no one with a mental health-related disability was included in the physical, cognitive and sensory disabilities categories, we cannot be certain that the ‘other’ category did not include participants with mental health-related impairments.

Overall, our study adds to the literature by demonstrating prospective associations between perceived disability discrimination and well-being outcomes. These findings emphasise the need to reduce the prevalence of disability discrimination, with the benefit of promoting equality as well as possible advantages for well-being too. Although complete elimination of disability discrimination is likely to be difficult, recognition of disability discrimination as an issue is the first step in preventing its occurrence. Addressing this could involve raising awareness through the use of campaigns. The Public Sector Equality Duty in the UK requires public bodies to have due regard to the need to eliminate discrimination and this awareness raising should begin early in life. 7 However, it is estimated that <40% of English primary schools have a disability equality scheme in place, with race and gender equality more often prioritised over disability equality. 58 Therefore, further effort on this issue is required, 7 particularly as disability discrimination is perceived to be more widespread than gender discrimination in Europe. 8

As well as macro-level awareness raising, on an individual basis the negative impact of perceived disability discrimination on well-being may be buffered through the use of social support. In two cross-sectional studies of US adults with varied disability diagnoses, those with more friends reported greater life satisfaction and these friendships attenuated the link between functional impairment and poorer quality of life. 59 In an Israeli study, perceived disability discrimination and poorer life satisfaction were only linked in those with low and moderate levels of social support, with no association in those with greater levels of support. 60 Further research on disability discrimination is necessary to develop awareness campaigns and to appropriately target individual-level interventions.

Supplementary Material

Twitter: @hackett_ruth

Contributors: RAH conducted the statistical analysis and wrote the manuscript. AS edited and reviewed the manuscript. RPL edited and reviewed the manuscript. SEJ provided scientific overview, edited and reviewed the manuscript.

Funding: This work was supported by the Economic and Social Research Council https://esrc.ukri.org/ , grant number ES/R005990/1.

Disclaimer: The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.

Competing interests: None declared.

Patient and public involvement: Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.

Patient consent for publication: Not required.

Ethics approval: Ethical approval for UKHLS was obtained from the University of Essex Ethics Committee.

Provenance and peer review: Not commissioned; externally peer reviewed.

Data availability statement: Data are available in a public, open access repository. The UKHLS datasets analysed during the current study are freely available in the UK Data Service repository https://ukdataservice.ac.uk/

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HHS Final Rule: Nondiscrimination on the Basis of Disability in Programs or Activities

• HHS Final Rule: Nondiscrimination on the Basis of Disability...

For the first time in nearly 50 years, the US Department of Health and Human Services (HHS) Office for Civil Rights (OCR) has finalized revisions to regulations implementing Section 504 of the Rehabilitation Act of 1973, which protects against discrimination on the basis of disability as it applies to programs and activities that receive federal financial assistance from HHS (hereinafter recipients). The final rule, Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance , will take effect July 8, 2024, and largely incorporates all of the changes in the proposed rule. Here, we provide an overview of the final rule’s key points and the requirements that affected parties will need to prepare for.

HHS implemented Section 504 into rules applicable to health and human services programs in 1977. Those rules remained largely unchanged over the decades, leading to some inconsistencies with other federal civil rights laws. Recognizing the impact that discrimination has played in denying individuals with a disability an equal opportunity to participate fully in healthcare programs, HHS proposed a sweeping set of rules on September 14, 2023, and finalized them on May 9, 2024.

The historic final rule provides robust civil rights protections for a broad array of people with disabilities who seek services from more than 100 federally funded health and human services programs , thereby affecting hospitals; healthcare providers participating in the Children’s Health Insurance Program, Medicare and Medicaid; state and local human or social service agencies; senior services facilities and child placement agencies.

The scope of the final rule’s application is potentially quite broad. Going forward, entities whose only source of federal funds is Medicare Part B are likely to also be required to comply with Section 504 in light of new HHS rules finalized pursuant to Section 1557 of the Affordable Care Act. Likely because requirements under Section 504 are similar to requirements under the Americans with Disabilities Act of 1990 (ADA), most of the components of HHS’s Notice of Proposed Rulemaking (NPRM) were consistent with what recipients are already doing, leading to only around 5,000 generally positive comments. Accordingly, the final rule closely follows the language of the NPRM.

This On the Subject highlights six areas addressed in the final rule that should be given special consideration for their potential impact on recipients’ current operations: medical treatment, value assessment methods, child welfare programs and activities, technology-based accessibility, accessible medical equipment and integration.

MEDICAL TREATMENT

HHS observes in the proposed rule that pervasive discrimination on the basis of disability in accessing medical care leads to significant health disparities and poorer health outcomes for individuals with disabilities. The final rule ensures that medical treatment decisions by those that receive HHS funding are not based on stereotypes or preconceived notions about individuals with disabilities, such as quality of life.

The final rule sets forth specific prohibitions on discrimination against those with disabilities by recipients of HHS funding. It expressly prohibits the denial of medical treatment based on bias or stereotypes, including a belief that a person with a disability is a burden on others because of their disability. It also prohibits the denial of treatment for a symptom or condition unrelated to the individual’s disability. A recipient may not, on the basis of disability, provide a medical treatment to an individual with a disability where it would not provide the same treatment to an individual without a disability unless the disability has an effect on the treatment.

Additionally, the final rule expounds on prohibitions related to discriminatory medical treatment by explaining circumstances when medical treatment may be withheld, such as when:

• A medical professional denies an individual with a disability a specific treatment for legitimate purposes, such as futility or the disability rendering the individual unqualified
• The provider does not receive consent from the patient or authorized representative to undergo a particular treatment
• The patient received information regarding the implications of different courses of treatment based on current medical knowledge or the best available objective evidence and the patient provides informed consent to forego a procedure.

Although a provider may communicate concerns that a treatment may not improve the quality of life of a patient with a disability or would render their quality of life so low as to not be worth living, the provider may not pressure or coerce the patient or representative or discriminate on the basis of disability in the manner in which the provider seeks authorization to withdraw or scale down treatment. HHS observes that an individual with a disability may take longer to respond to some treatment modalities or may require long-term support but can nevertheless survive and thrive, making a provider’s determination of value of life discriminatory in certain circumstances.

VALUE ASSESSMENT METHODS

Under the proposed rule, HHS recommended that a recipient may not use any measure, assessment or tool that discounts the value of extending the life of an individual with a disability as a means to deny or afford an unequal opportunity to access otherwise entitled services. HHS requested comments on when value assessment methods may play a role in determining whether a particular intervention, such as a medicine or treatment, might be appropriate. Commenters observed that value assessments are an increasingly significant tool for cost containment and quality improvement efforts and gave several examples of value assessments that should be allowed or prohibited.

HHS decided not to authorize or prohibit specific types of value assessments in the final rule and instead states that it will continue to allow nondiscriminatory value assessments depending on the circumstances where they are used. If such an assessment devalues extending the life of an individual merely because of a disability, HHS would continue to prohibit that assessment’s use in such circumstances.

CHILD WELFARE PROGRAMS AND ACTIVITIES

The final rule discusses the wide range of discriminatory barriers that children, parents, caregivers, foster parents and prospective parents with disabilities may encounter while navigating child welfare systems. These barriers may include failing to provide reasonable modifications, failing to place children in the most integrated setting appropriate for their needs, or stereotypes about whether individuals with disabilities can safely care for a child.

The final rule clarifies that Section 504’s nondiscrimination provisions apply to HHS-funded child welfare programs and activities and should be interpreted to protect all individuals with a disability seeking access to such services, including children, biological or adoptive parents, caregivers, guardians, foster parents or prospective parents.

HHS observes that child welfare agencies and providers are obligated by law to ensure the safety and wellbeing of children in the welfare system; however, the decision of whether a caregiver can provide for a child’s safety and wellbeing should be based on facts applicable to the individual rather than stereotypes about individuals with disabilities. To that end, the final rule clarifies that it does not narrow or limit recipients’ existing and long-standing obligations under other civil rights statutes, including the ADA. Rather, the Section 504 final rule sets forth additional prohibitions specific to child welfare programs and services that are often used to:

• Deny a qualified parent with a disability custody, control or visitation to a child
• Deny a qualified parent with a disability the opportunity to benefit from services provided by a child welfare agency
• Terminate parental rights or legal guardianship of a qualified individual with a disability
• Deny a qualified caregiver, foster parent, companion or prospective parent with a disability the opportunity to participate or benefit from child welfare programs based on discriminatory criteria, including IQ tests or algorithms
• Require children, on the basis of disability, to be placed outside the family home through custody relinquishment, voluntary placement or other forfeiture of parental rights in order to receive necessary services.

HHS observes that this is not an exhaustive list, and all HHS-funded child welfare recipients are prohibited from discriminating on the basis of disability in all of their programs and activities.

TECHNOLOGY-BASED ACCESSIBILITY

As technology continues to provide new ways to deliver health and human services programs and activities, HHS considers it vital to ensure that those methods are readily accessible to and usable by individuals with disabilities. Recognizing that the use of algorithms, automated decision-making and artificial intelligence is a growing technology that may have unintended disability discrimination consequences, HHS requests comments on whether OCR should issue guidance or consider future rulemaking in addition to the protections established through final rules implementing Section 1557.

For other more established technologies, such as websites and mobile applications, the final rule requires recipients who use such technologies to comply with the Web Content Accessibility Guidelines (WCAG) 2.1 AA technical standards if accessing these technologies is necessary for a qualified individual with a disability to fully participate in the recipient’s programs and services.

Specifically, the final rule requires that beginning May 11, 2026, recipients with 15 or more employees must ensure that the web content and mobile applications they provide or make available to patients comply with Level A and Level AA requirements specified in WCAG 2.1. There is a safe harbor for compliance if a recipient can demonstrate that compliance would result in a fundamental alteration to the program or activity or an undue financial, administrative or legal burden.

Additionally, recipients may use conforming alternate versions of web content only where it is not possible to make web content directly accessible because of technical or legal limitations.

The following are exempt from the final rule’s accessibility requirements:

• Archived web content
• Preexisting conventional electronic documents
• Content posted by a third party because of contractual, licensing or other arrangements with the recipient
• Individualized password-protected documents or otherwise secured conventional electronic documents
• Preexisting social media posts that were posted before the recipient was obligated to comply with the final rule

Additionally, a recipient may make alternate versions of web content that meet WCAG 2.1 standards when it’s not possible to make the original web content directly accessible because of technical or legal limitations.

ACCESSIBLE MEDICAL EQUIPMENT

Perhaps the most impactful changes finalized by HHS are aimed at overcoming the barriers experienced by individuals with disabilities because of inaccessible medical equipment. Exam tables that are not height adjustable, mammography machines that require a person to stand, and weight scales that do not accommodate wheelchairs all result in inequities and exclusion from basic health services for individuals with disabilities, exacerbating the risk for poorer health outcomes.

The final rule implements standards for all newly purchased, leased or otherwise acquired medical diagnostic equipment (MDE), requiring all newly acquired equipment to meet the US Access Board’s Standards for Accessible MDE (effective 60 days after the final rule’s publication date). Additionally, the final rule provides scoping requirements for various programs or activities. Recipients using MDE in physician offices, clinics, emergency rooms, hospitals, outpatient facilities and multiuse facilities must have at least 10% of the total number of units – but no fewer than one unit – of each type of equipment in use meet the Standards for Accessible MDE. Facilities that specialize in the treatment of conditions that affect mobility must have at least 20% – but no fewer than one unit – of each type of equipment in use meet the Standards for Accessible MDE. Facilities with multiple departments that utilize MDE must disperse the equipment in a manner that is proportionate by department, clinic or specialty.

Furthermore, the final rule establishes that recipients must acquire at least one accessible exam table and one accessible scale within two years of the date that is 60 days after the final rule is published. This provision of the final rule does not require a recipient to take any action that it can demonstrate would result in a fundamental alteration in a program or activity or undue financial and administrative burdens.

Lastly, HHS sets standards for existing MDE, stating that the final rule does not necessarily require a recipient to make each of its existing pieces of MDE usable by individuals with disabilities if other methods are effective in achieving compliance with Section 504. However, in such a circumstance, the recipient must reassign services to alternate accessible locations, establish home visits, purchase or acquire accessible MDE, or enact other methods that would make its programs and activities readily accessible and usable by individuals with disabilities.

INTEGRATION

The existing Section 504 rules require programs and activities to be administered in the most integrated setting appropriate to the needs of a person with a disability. Within the final rule, HHS clarifies that integration should be interpreted as the setting that provides individuals with disabilities the opportunity to fully interact with non-disabled persons. These settings empower individuals to live, work and receive services in the greater community – like individuals without disabilities.

Although this is not a comprehensive list of all the updates and requirements set forth in the final rule, this article demonstrates the major steps HHS has taken to further equity in healthcare for individuals with disabilities. Reflecting over 50 years of advocacy by the disability community, the final rule advances the promise of the Rehabilitation Act and helps to protect people with disabilities from being subjected to discrimination in any program or activity receiving HHS funding.

Most provisions of the final rule require compliance by July 8, 2024, except (i) the obligation to acquire accessible examination tables and weight scales, which is required by July 8, 2026, and (ii) converting websites and mobile applications to WCAG 2.1 standards by May 11, 2026, for recipients with more than 15 employees and by May 10, 2027, for recipients with less than 15 employees.

For more information, we recommend reviewing our previously published deep dive into the NPRM or contacting either the authors or your regular McDermott lawyer.

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Joshua Neumann

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• Research article
• Open access
• Published: 15 March 2018

A national survey on violence and discrimination among people with disabilities

• Jesper Dammeyer 1 &
• Madeleine Chapman 2  

BMC Public Health volume  18 , Article number:  355 ( 2018 ) Cite this article

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The aim of the study was to quantify levels of violence and discrimination among people with disabilities and analyze the effects of gender and the type and degree of disability.

The study analyzed data on self-reported violence and discrimination from a Danish national survey of 18,019 citizens, of whom 4519 reported a physical disability and 1398 reported a mental disability.

Individuals with disabilities reported significantly higher levels of violence than those without. Specifically, individuals reporting a mental disability reported higher levels of violence and discrimination. Significant gender differences were found with regard to type of violence: while men with disabilities were more likely to report physical violence, women with disabilities were more likely to report major sexual violence, humiliation and discrimination. Neither severity nor visibility of disability was found to be a significant factor for risk of violence.

Conclusions

This large-scale study lends support to existing research showing that people with disabilities are at greater risk of violence than people without disabilities. Further, the study found that people with mental disabilities were significantly more likely to report all types of violence and discrimination than those with physical disabilities. The findings also show that gender is significant in explaining the type of violence experienced and the experience of discrimination.

Peer Review reports

Understanding disability

The World Health Organization (WHO) uses the term disability to refer to the physical or mental impairment of everyday functionality due to congenital conditions, injury or disease [ 1 ]. While this study follows the WHO conceptualization of disability as comprising impairment of everyday functionality, it is grounded in the understanding that people are disabled by the intersecting effects of impairment and social attitudes and barriers [ 2 ]. Further, the study is guided by the understanding that many mental health issues such as depression and anxiety may be caused by a combination of factors, including environmental and experiential factors. In this study, the term disability encompasses these understandings and is used to refer to a range of mental as well as physical health issues, including developmental disorders such as autism spectrum disorder and mood disorders such as depression. The key objective of this study is to explore the relationship between different types of disability and the experience of violence and discrimination.

Violence and discrimination among people with disabilities

Interpersonal physical and sexual violence contribute significantly to the global burden of physical and mental health problems, substance abuse, and early mortality [ 3 ]. As the World Report on Disability [ 4 ] highlights, people with disabilities are at greater risk of violence than those without disabilities. Due to ageing populations and the increasing global burden of disease and injury, the prevalence of disability worldwide – now estimated at 15% of adults – is predicted to rise [ 4 ], further underlining the importance of more research on the experience of violence among people with disabilities.

There are few studies that compare risks of violence among different disability groups within a large sample and none that compare risks of discrimination.

One large-scale study that highlights disability as a risk factor for violence is Khalifeh et al. [ 5 ] which analyzed data gathered from 44,398 adults through the British Crime Survey and estimated the risks of experiencing past-year violence. After adjusting for socio-demographic and other confounders, the study found that people with disabilities were at increased risk of experiencing violence compared to people without disability, with the risk greatest for those with mental disabilities (with relative odds ratio of 3.0). In their systematic review and meta-analysis of research on violence and disability, Hughes et al. [ 6 ] reported similarly that adults with disabilities were at a significantly higher risk of violence compared with non-disabled adults. They also found that the experience of past-year violence was highest (at 24%) among individuals with mental disabilities.

Even though a higher prevalence of violence among those with mental disabilities has been reported, there are no clear findings on the type of violence experienced nor the effects of other factors such as the specific type and severity of disability. However, gender has been reported to be an important factor. For example, Khalifeh et al. [ 7 ] found that women with chronic mental illness reported higher levels of intimate partner violence than men with chronic mental illness (the figures for reported past-year violence were 21% for women and 10% for men).

Disability-related discrimination is an issue of interest in legal and social science literature on disability [ 8 ]. There are some studies that draw attention to the implications of discrimination for well-being, for example highlighting links between underemployment, perceived discrimination, and negative well-being [ 9 ]. However, there are no large-scale studies on disability-related discrimination nor studies that address different forms of discrimination and examine the effects of various factors such as type, severity and visibility of disability. Some disabilities are clearly visible to others, thereby exposing individuals more to the risk of disability-related discrimination, but others may not be readily apparent. Such factors need to be addressed in research to better understand the operation of discrimination as distinct from violence.

Existing studies give a picture of the greater risks of violence faced by people with disabilities. However, there is an identified need [ 6 ] for more large-scale studies and, specifically, studies examining interactions between different forms of violence and possible risk factors. Khalifeh et al. [ 5 ] urge in particular further research on which subgroups of people with mental disabilities are at greatest risk of violence. Further, there is a need for large-scale research using detailed measures on disability-related discrimination. Thus, the objectives of this study are to provide an overview of violence and discrimination among people with disabilities through analysis of data from a national survey; and to compare the prevalence of different forms of violence and discrimination with respect to gender and the type, severity, and visibility of disability.

Sampling and participants

Data for this study were drawn from the Survey of Health, Impairment, and Living Conditions in Denmark, collected by The Danish National Centre for Social Research in 2012/2013 [ 10 ]. Using personal identification numbers, Statistics Denmark generated a random selection of 32,810 citizens aged from 16 to 65 years old. Selectees were sent an invitation with instructions about how to complete the questionnaire online. If they did not respond, they were offered a phone interview. Of the selectees, 18,957 (57.8%) responded, with 15,292 (81%) completing the questionnaire online and 3665 (19%) participating in a phone interview. Consent to participate was obtained for the Survey of Health, Impairment, and Living Conditions in Denmark.

The mean age of the participants was 43.3 ( SD  = 14.13). Of the total number of participants, 46.8% were men. Regarding education, 13% had completed five years or more of tertiary education, 38% had completed some years (less than five) of tertiary education, 29% had completed secondary education, and 20% had completed primary education.

Questionnaire and measurements

Physical and mental disabilities.

The main exposures were physical disability and mental disability. In the questionnaire, participants were asked if they had “a long-term physical health problem or disability” and/or “one or more mental disorders”. They were then asked to categorize their most serious physical and/or mental disability. The study grouped the response categories for physical disabilities as follows: (1) Motor and movement disorders; (2) Blindness and vision loss, despite use of glasses or contact lenses; (3) Deafness and impaired hearing, despite use of hearing aids or cochlear implants; speech and language difficulties; dyslexia; (4) Skin diseases; (5) Allergies and breathing difficulties; (6) Chronic conditions and progressive diseases; (7) Other health problem or disability. The questionnaire provided examples for the categories, such as cerebral palsy for motor and movement disorders. The study grouped the response categories for mental disabilities as follows: (1) Mental disorder caused by alcohol or substance use; (2) Schizophrenia and psychosis; (3) Mood disorders including depression and bipolar disorder; (4) Stress, phobias, anxiety, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD); (5) Personality disorders, (6) Autism spectrum disorders; (7) Attention deficit hyperactive disorder (ADHD) or similar disorder; (8) Eating disorders; (9) Other mental disorders.

Severity and visibility of disability

The study also used measures of the severity and visibility of disability. In the questionnaire, participants were asked if their main physical and/or mental disability was “minor or major”. They were also asked: “Would a stranger recognize within five minutes that you have a disability/health problem/mental disorder?” The response categories for the latter were coded by this study as “always” and “sometimes/never”.

The outcomes were forms of violence and discrimination. For violence, the outcomes were separate forms of violence in the past 12 months, including physical violence, sexual violence, and non-physical violence. For non-physical violence, the question was: “In the past year, has someone: (1) Threatened you with violence (2) Humiliated, degraded or ridiculed you, or constantly criticized you; (3) Prevented you from accessing your money or bank account, blocked your bank card, or forced you to pay a sum of money or act as guarantor?” For physical violence, the question was: “In the past year, has someone: (1) Shaken you, pushed you or pulled your hair; (2) Hit or kicked you?” The study refers to (1) and (2) as “minor” and “major” physical violence respectively. A question on violence done to others was also included in this study, as follows: “Have you shaken, pushed, hit or kicked another person within the last year?” For sexual violence, the question was: “In the past year, has someone forced you to: (1) Kiss or hug; (2) Have sexual intercourse or engage in other sexual acts?” The study refers to (1) as “minor sexual violence” and (2) as “major sexual violence”.

• Discrimination

In the survey, the following definition of discrimination was provided: “Discrimination occurs when people are unfairly treated because they are perceived as different from others.” In the questionnaire, participants were asked: “Do you feel that you are discriminated against because of your disability?” Participants were then asked who discriminates against them (naming only the most important). Response categories were grouped into two for this study, as follows: (1) Employment and education (e.g. work managers, personnel at college/university, colleagues); (2) Services (e.g. staff in public administration, health-care professionals, home carers, and support staff, staff in shops, cinemas, buses, trains etc.).

Data analysis

Descriptive analysis of the frequency of violence and discrimination was carried out with respect to gender, type of disability, and severity and visibility of disability. Chi-square tests were completed to compare differences for outcomes on the basis of mental and physical disability, specific types of mental and physical disability, severity and visibility of disability, and gender. Further, logistic regressions models were built, with types of violence and discrimination as dependent variables, and gender, age, level of educational achievement, physical disability and mental disability as independent variables.

As reported in Table  1 , individuals with disabilities were significantly more likely to report all types of violence committed against them than those without disabilities. For example, whereas 3.2% ( n  = 403) of those without disabilities reported major physical violence in the last year, the figures were 3.8% ( n  = 173) for those with physical disabilities and 6.7% ( n  = 93) for those with mental disabilities. The regression models (see Table  6 ) showed that having a physical and mental disability was significant for all types of violence.. For example, the odds ratio for reporting major sexual violence was 4.30 for participants with a mental disability compared to participants without a mental disability.

People with mental disabilities were significantly more likely to report all types of violence than those with physical disabilities. This included violence done to others: 6.2% ( n  = 86) of those with mental disabilities reported this, compared to 2.9% ( n  = 131) of those with physical disabilities.

No significant differences were found for violence with respect to severity of disability and visibility of disability (see Table  2 ).

Gender and violence

Differences were significant for all categories of violence for men and women with mental disability as compared, respectively, with men and women without disability (Table  3 ). There were no significant differences in reporting of physical and sexual violence between men with physical disabilities and men without. For women with either physical or mental disabilities, reporting of all categories of violence was significantly higher than for women without disabilities, except for major physical violence for women with physical disability. For example, 0.8% ( n  = 55) of women without disabilities reported major sexual violence compared with 1.7% ( n  = 42) of women with physical disabilities and 5.0% ( n  = 45) of women with mental disabilities.

Comparing men and women with mental and physical disabilities, respectively, women were significantly more likely to report major sexual violence than men. Men with physical disabilities were significantly more likely than women with physical disabilities to report physical violence, the threat of violence, and violence against others. Comparing women and men with mental disabilities, there were no significant differences in reports of physical violence, the threat of violence, and violence against others. These findings were reflected in the regression models (see Table 6 ) which showed that gender was significant for all kinds of violence except for financial violence and minor sexual violence. The odds for men were higher than for women for physical violence, being threatened and violence against others. The odds for women were higher for major sexual violence and being humiliated compared to men.

Disability type and violence

With regard to type of physical disability, those with a motor disability reported higher levels of being threatened and lower levels of being humiliated than people with all other kinds of physical disability. Compared to people with all other kinds of physical disability, people with visual impairment reported higher levels of being humiliated, financial violence, major physical violence, and both minor and major sexual violence. Finally, those with allergies reported higher levels of being threatened, being humiliated, and minor and major physical violence than people with all other kinds of physical disability (see Table  4 ).

With regard to mental disability, the overall finding was that people with personality disorders, ADHD, autism spectrum disorder, and schizophrenia/psychosis reported significantly higher levels of violence than people with other kinds of mental disability (Table  5 ). People with stress and mood disorders reported significantly lower levels of violence than people with other kinds of mental disability.

People with mental disabilities were significantly more likely to report discrimination of both categories than those with physical disabilities (Table 1 ). Severity of physical disability was significant with respect to discrimination: those with major physical disabilities reported higher levels of discrimination in both categories than those with minor physical disabilities (Table 2 ). Those with major mental disabilities reported significantly higher levels of discrimination in services than those with minor mental disabilities. Finally, those with visible disabilities reported significantly higher levels of discrimination in services than those without.

With regard to gender, women with physical disabilities were significantly more likely than men with physical disabilities to report discrimination of both categories (Table 3 ). Women with mental disabilities were significantly more likely than men with mental disabilities to report discrimination in employment and education. In line with this, the regressions models showed that gender was significant for both types of discrimination (see Table 6 ).

Regarding type of disability, those with a motor disability, autism spectrum disorder, or schizophrenia/psychosis were significantly more likely than those with other types of physical or mental disabilities, respectively, to report discrimination of both categories (Tables  4 and 5 ). Those with a personality disorder were significantly more likely to report discrimination in services and those with ADHD were significantly more likely to report discrimination in employment and education. By contrast, those with a stress or mood disorder were significantly less likely to report discrimination of both categories.

The findings here lend support to existing research showing that individuals with disabilities are at increased risk of violence [ 5 , 6 ]. By analyzing data on various kinds of violence, the study indicates that the increased risk is associated with all the forms of violence measured: physical, sexual, and non-physical. The finding that participants with mental disability reported significantly higher levels of all categories of violence and discrimination than those with physical disability are in line with other studies showing the particular vulnerabilities of people with mental disabilities [ 5 , 6 ]. However, more focused studies are required to explore more precisely the nature of the relationship between mental disability and violence and discrimination (see Limitations).

The study’s findings in relation to gender both build upon and nuance previous research on disability and violence [ 7 ] and highlight the need for an intersectional approach to disability studies. Whereas men with disability reported more physical violence, women with disability reported more humiliation, discrimination and major sexual violence. For example, 5% ( n  = 45) of women with mental disabilities in this study reported past-year major sexual violence. This compares to the estimated EU-wide figure of 5% of women who have been raped since the age of 15 [ 11 ]. The finding of this study underlines an urgent need for more research to address the nature of the relationship between mental disabilities among women and the experience of sexual violence.

Neither the severity nor visibility of disability were significant in explaining the risk of violence. While perhaps surprising, this is in line with previous studies which have found that the degree of physical impairment does not always predict life outcomes [ 12 ]. However, this study found that degree of physical disability was significant for both categories of discrimination. Further research with respect to who commits violence and discrimination could shed light on risk factors, both within and outside the home.

The findings from this study suggest that women with disabilities are at increased risk of discrimination than men with disabilities. and further that those with mental disabilities are at greater risk of discrimination than those with physical disabilities. This study’s findings from a large-scale survey provide an overview of risk that can connect piecemeal studies on discrimination and disability, such as studies highlighting cases of workplace discrimination among those with mental health problems [ 13 ], and further underline the need for an intersectional understanding of risk.

Regarding findings with respect to disability type, attention is directed to the high levels of violence and discrimination reported by those with personality disorders, schizophrenia/psychosis, ADHD, and autism spectrum disorder. On discrimination specifically, the findings direct attention to motor disorders in addition to the above. However, these findings are offered with caution because of small group numbers.

Limitations

The first main limitation of this study might be a participation bias. The survey was designed for the general population and may have excluded those with severe cognitive impairment or communication difficulties. Further, this study did not include people above 65 years of age, thereby excluding a group of people among whom the prevalence of physical disabilities is high [ 14 ]. However, this had an advantage, which was the default exclusion of much age-related discrimination and violence.

The second main limitation of this study was that the data on disabilities were based on self-report rather than validated diagnoses of disability. This might have led to either under- or over-reporting of disability. However, the survey’s detailed level of questioning about type of disorder and its use of diagnostic terms were designed to promote specificity and reliability of reporting.

There may also be a self-report bias with respect to violence and discrimination. This is likely to be in the direction of under-reporting. First, as Hughes et al. [ 6 ] observe, the past-year criterion for violence likely results in conservative estimates as “many more will have suffered violence more than 12 months previously” (p.1627). Second, there may have been a disclosure bias with respect to domestic violence. As Khalifeh et al. [ 5 ] observe, it may be particularly difficult for people with disabilities to report domestic violence because of dependency on perpetrators and fear of institutionalization. It should also be noted here that there is some controversy about the ability of those with serious mental disorders to report traumatic events. However, research suggests the reliability of self-report among this group. For example, Goodman et al. [ 15 ] concluded from their research that the occurrence and severity of violence are reliably reported by people with serious mental health illness.

Another limitation of this study was that the cross-sectional design did not enable clear identification of whether disability or violence occurred first. However, this issue is largely mitigated by the past-year criterion for occurrence of violence, a study condition that Hughes et al. [ 6 ] applied for inclusion in their systematic review, and by the survey’s qualification of physical disabilities as “long-term”. As the survey did not provide this qualification for mental disabilities, the implications of findings with respect to mental disabilities are discussed in the study with more caution. For some kind of disabilities, bi-directional and compounding effects of violence and disability might exist [ 16 , 17 ]. For example, Khalifeh et al. [ 5 ] found that people with disabilities were at greater risk of psychological health problems following violence than non-disabled people. This study included participants’ reports on doing violence to others and found that significantly higher levels were reported by participants with personality disorder and ADHD. The experience of multiple victimization and the compounding effects of negative experience are topics that need further attention.

One further limitation concerns the inclusion of data relating to those with both physical and mental disabilities ( n  = 635) in the data for physical and mental disability groups respectively. While this potentially resulted in the over- or under-statement of rates of violence and discrimination, the decision was made to be inclusive of all those reporting physical and mental disabilities by not stripping out co-morbidity.

Finally, the number of cases within some of the disability groups was low and therefore any conclusions for these groups should be taken with caution.

Strengths of study

The strengths of this study were the large national sample and detailed survey data about the type and severity of disability and different forms of violence and discrimination. This enabled robust comparative analysis of the prevalence and risk of violence and discrimination.

Understanding the extent of violence against vulnerable groups is the first step in starting to combat it [ 6 ]. While this study’s design constrains conclusions, the findings here call attention to the significantly higher levels of violence reported by people with disabilities and particularly those with mental disabilities. Clinicians and other health professionals as well as service providers and employers should be cognizant of these patterns of vulnerability and the intersections with gender and other risk factors.

Further to increased awareness and screening, this study highlights the need for coordinated assessment of causes of violence and policies on prevention as well as treatment and support. Specifically, the high level of sexual violence among women reporting mental disabilities demands further inquiry and action. Further to this, the consistently high levels of reported threats of violence, humiliation, and financial abuse suggest the need for agencies to identify and tackle non-physical and domestic violence. This requires attunement to the factors contributing to the vulnerabilities of people with disabilities, including dependency on personal care, social isolation, and communication difficulties [ 6 , 18 ]. Specialist services to support people with disabilities facing domestic violence are required but seldom in place [ 5 ].

Finally, the findings on disability-related discrimination call for greater awareness of this issue and its social costs in terms of employment, education, and service provision. Discrimination should be approached with an understanding of its “institutionalized” nature which, to paraphrase the U.K. Macpherson Report on racism [ 19 ], can be “seen or detected in processes, attitudes, and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness, and stereotyping which disadvantage people with disabilities.” The findings here hopefully provide some grounding for future research and action on discrimination that addresses multiple factors and the apparently increased risk for those with mental disabilities and women with disabilities.

Abbreviations

Attention deficit hyperactive disorder

Obsessive-compulsive disorder

Post-traumatic stress disorder

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Acknowledgements

We would like to thank the Danish National Centre for Social Research (SFI), Steen Bengtsson and colleagues for access to data.

No funding to be reported for this study.

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The datasets analysed during the current study are available in the CSSR database, http://cssr.surveybank.aau.dk/webview/ .

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Dammeyer, J., Chapman, M. A national survey on violence and discrimination among people with disabilities. BMC Public Health 18 , 355 (2018). https://doi.org/10.1186/s12889-018-5277-0

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How to Weigh the Risks of Disclosing a Disability

• Ludmila N. Praslova

Disclosing a challenging health condition at work can be risky. You may get the accommodations you need, but you may also be met with suspicion, resentment, and accusations of making it all up. Research shows that most disabled employees experience some form of workplace discrimination, including hiring biases, pay gaps, bullying, and mistreatment. In addition, when people with nonapparent conditions disclose them, they often get a “You look fine” response, adding to their reluctance to disclose. In this article, the author discusses why disclosure is challenging, how to decide whether the risk is worth taking, and how a network can support you.

A guide to help you decide — and find support.

Whether to disclose your long Covid, or any other nonapparent condition or disability, to your employer is a deeply personal and consequential decision. While disclosing may help you access accommodations, it carries risks stemming from stigma and ableism. You might get support, but you might also be met with suspicion, resentment, and accusations of making it all up.

And what their employers are — and aren’t — doing to support them.

• Ludmila N. Praslova , PhD, SHRM-SCP, uses her extensive experience with neurodiversity and global and cultural inclusion to help create talent-rich workplaces. The author of The Canary Code , she is a professor of graduate industrial-organizational psychology and the accreditation liaison officer at Vanguard University of Southern California. Follow Ludmila on LinkedIn .

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19 August 2021

Tribunal makes second largest disability discrimination award ever

• Addleshaw Goddard LLP
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Disability Awareness Day takes place this year on 12th September. As part of our focus on Disability Awareness Day, we will be looking at recent cases and issues relating to disability discrimination.

In this first week of our focus, we are looking at two cases: one which resulted in the Employment Tribunal awarding the second largest disability discrimination payment in history; and the second which decided whether or not employers can avoid making adjustments by relying on someone else to help. My colleague, Rhona Wallace, has written an article on the latter, which can be found here .

MR D BARROW V KELLOG BROWN & ROOT (UK) LTD

In the case of Mr D Barrow v Kellog Brown & Root (UK) Ltd ( KBR ) , the Employment Tribunal awarded Mr Barrow £2,567,831.97 for unfair dismissal and disability discrimination. This is the second largest disability discrimination award ever made by the Employment Tribunal. 

Many employment awards are subject to financial caps and it is for this reason that the Employment Tribunal is not generally known for awarding such substantial amounts. However, some claims, such as discrimination and whistleblowing, are uncapped and the Employment Tribunal does have the ability to award significant amounts of money for these types of claims. We will look at the facts of this case, the reasons as to why the award was so substantial and the lessons to be learnt by employers going forward. 

FACTS 

The Claimant, Mr Barrow, was Head of Programme Management at KBR, a US parented defence and government services contractor. Mr Barrow was dismissed in May 2018 after working with KBR since 1980. In 2017, Mr Barrow commenced treatment for skin itchiness and redness around his torso. One of the treatments involved taking steroids, which had a detrimental impact on Mr Barrow's mental health. The steroid treatment also caused Mr Barrow's behaviour to change. He became emotionally volatile and suffered sporadic episodes of mania. 

In November 2017, Mr Barrow sent some ‘defensive’ emails to his manager. The following month Mr Barrow was called to a meeting and dismissed. KBR gave Mr Barrow no reason for the dismissal: he was simply told by his line manager that KBR could no longer employ him. KBR wrote to its staff members the next day and informed them that Mr Barrow had been let go for poor performance.

In January 2018, Mr Barrow was formally diagnosed with post-viral lymphoma, a rare cancer, which had been causing the skin itchiness and redness. Mr Barrow informed KBR of his diagnosis. Following this, and what has been alleged as an attempt to show that KBR had followed a fair procedure, KBR commenced a post-dated dismissal process with Mr Barrow. This process ended in May 2018, and concluded with Mr Barrow being formally dismissed. KBR cited " a breakdown in the implied term of trust and confidence. " Mr Barrow subsequently brought claims against KBR for unfair dismissal, disability discrimination, harassment, victimisation and failure to make reasonable adjustments.

THE EMPLOYMENT TRIBUNAL  

Mr Barrow’s claims for discrimination, disability discrimination, harassment, victimisation and failure to make reasonable adjustments were successful at Tribunal. The Tribunal looked at the first dismissal in December 2017 and found that KBR had provided little to no evidence in the dismissal letter for the breakdown in trust and confidence. KBR subsequently failed to prove to the Tribunal that this breakdown was the reason for the dismissal.

The Tribunal called the second dismissal in May 2018 a ‘sham’. It held that the internal process was a ruse to dismiss Mr Barrow and considered that the process was carried out to ‘give the impression that the process of dismissal was fair’. In actual fact, the appeal officer was used by KBR as a messenger for a predetermined decision already made by Mr Barrow’s line manager.

The Tribunal concluded that no reasonable employer would have acted in such a way, let alone in dismissing an employee who had spent so long working for the company.

Although KBR were unaware of the cancer diagnosis at the time of the December dismissal, Mr Barrow’s claim for failure to make reasonable adjustments was successful, as KBR was aware of the effect of his steroid medication on his mental health. Despite this, KBR did not take this into consideration in the subsequent May dismissal process. Further, KBR cited Mr Barrow's inability to attend meetings regarding his dismissal as non-cooperation when, in actual fact, KBR was aware that Mr Barrow was going through chemotherapy at the time. 

THE AWARD 

The Tribunal awarded Mr Barrow £2,567,831.97 – one of the highest damages awards for discrimination and the second largest award for disability discrimination. As Mr Barrow was 60 years of age at the time of dismissal and had worked at KBR for so long, the Tribunal accepted that career-long loss should be awarded, with reductions for contingencies. The Tribunal also awarded a sum for injury to feelings and £25,000 for pain, suffering and loss of amenity.

The Tribunal assessed aggravated damages at £7,500.  This is a rare type of award and was given as a direct reflection of the manner in which KBR treated Mr Barrow. In addition, the Tribunal applied an uplift for KBR's failure to comply with the ACAS code pursuant to section 207A TULRCA. In view of the high overall level of damages, this was set at 8%.

An interesting aspect of this case arose from an order for specific disclosure of documents relating to the non-payment of a bonus which Mr Barrow claimed he was entitled to. The Tribunal considered that there were difficulties in the way KBR had responded to this disclosure request and made an order that KBR produce an Affidavit of compliance.

LESSONS TO BE LEARNED FOR EMPLOYERS

This case demonstrates that discrimination awards are not subject to a cap, unlike unfair dismissal claims and most other heads of claim in the Employment Tribunal. Although the average sum awarded at the Employment Tribunal is much lower, discrimination and whistleblowing claims can lead to huge sums being awarded due to these claims being uncapped. 

This case makes it clear that employers should tread carefully when looking at an employee's alleged misconduct. They should try to understand the reason for any behaviour and if they are aware of any health issues, or medication use, they should pay particular attention to understanding any side effects or any changes to an employee's conduct which could be a result of such medication or illness. Sufficient medical information should be considered on these points.

The case also highlights the importance of employers following a fair dismissal process and not predetermining the outcome. Further, employers should use any further investigations as an opportunity to fully and fairly address any matters which have subsequently been disclosed to them since any initial investigations. The use of ostensible decision makers is likely to be exposed at Tribunal, in particular, when there is a lack of independent and substantive reasoning behind the decision maker's decision. As demonstrated in this case, if an employer cannot show that it has followed a fair and open minded dismissal process, or taken the time to fully understand an employee's mitigating information, the results can be expensive. 

If you need any support or advice in this area, please contact:

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New York Security Company Settles Age, Disability Bias Suit

By Bloomberg Law Automation

A security company headquartered in Queens, NY, will pay a former employee $22,500 and implement an antidiscrimination policy and training program to resolve an age- and disability-discrimination lawsuit, the EEOC announced Monday .

Maximum Security NYC Inc. had given the 57-year-old employee assignments at client hotels where he was responsible for assisting with evacuations and acting as a liaison to the local fire department during emergencies, the EEOC said.

The employee had a heart attack in December 2020. When he returned to work, his supervisor repeatedly told him that he should retire given his age and heart, the agency said. ...

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Disability Discrimination Case Study – The Equality Act 2010

BY ADISH FARKHAD, EMPLOYER LAW  

Taken from: NRAS magazine, Autumn 2012  

The following is a real case which  Adish  dealt with…  

Joe suffers from left hip early osteoarthritis with femoroacetabular impingement. He believes that this condition amounts to a disability within the meaning of the Equality Act 2010.    Joe is currently employed as a Personal Trainer at “All About Health” gymnasium (his “Employer”) and has worked with them for the past 10 years. Joe was diagnosed with hip early osteoarthritis with femoroacetabular impingement 3 years ago. He feels that he has been treated less favourably by his Employer because of his disability, contrary to the Equality Act 2010.    Joe has, on several occasions, made his Employer aware that he is suffering from a disability for which he requires reasonable adjustments to his working practices. Joe has requested the following adjustments:    1.    regular breaks from his shifts so that he can rest to ease the pain in his hip;  2.    a reduction in his hours but not so much of a reduction that would prevent him from earning a living. He wants to work 27 hours per week;  3.    an adjustment to the shift pattern for Personal Trainers to allow him to work Mondays and Tuesday which are his busiest days (so that he can continue to look after his key clients); and  4.    that his Employer waives its unreasonable request that Joe works every weekend (the quietest times) as part of his working hours as Joe wants to be treated in the same way as his non-disabled colleagues who only have to work one weekend per month.    Employee Booklets

Whilst Joe’s Employer has been on notice of his disability for over 3 years; it has persistently failed to make any adjustments to accommodate his disability. Joe’s manager regularly picks on him for demonstrating his hip pain in the way that he sometimes walks around the gym. His manager’s view is that Joe’s physical impairment does not create a positive image for the gymnasium and its Personal Trainers.    The subjecting of Joe to disability discrimination has meant that Joe has been prevented from working the reduced hours he requested and this has had a detrimental effect on his current health which has exacerbated the effects of his disability. Two months ago, Joe raised a formal grievance as he felt that he had no alternative but to do so in circumstances where all of his previous concerns raised verbally had been ignored. Joe’s Employer did not uphold his grievance and denied all liability for discrimination. Joe’s Employer did, however, agree to reduce his hours to 20 hours per week (with no flexibility or adjustment to enable him to work in excess of that should the need arise), requesting that he works at the quietest times every weekend and preventing him from working at the busiest times on Mondays and Tuesdays. He has also been allowed to take a 10-minute break when he feels in pain on the condition that he authorises the break with his manager so that his manager is aware of his whereabouts.    Joe’s Employer wishes to vary Joe’s terms and conditions of employment to reflect his new working hours (20 hours per week) and days of work to include working every weekend. Joe was told that he would face “proceedings” if he does not accept the proposed varied terms.    Joe considers that his Employer has failed to give any good reason for not agreeing to make the adjustments he requested and that the proposed adjustments that it is willing to make are unreasonable in the circumstances. Joe is aware that new staff are being recruited or being asked to cover Mondays and Tuesdays (his Employer has the maximum number of Personal Trainers already because it is allowing employees without a disability to work on a Monday and Tuesday instead of him).    Joe went to see a solicitor for legal advice to see if he had any potential employment claims against his Employer. He was advised that the Equality Act 2010 requires employers to make reasonable adjustments for employees who have a disability. Also, that employees with a disability should not be treated less favourably because of a disability. In Joe’s case, his employer did not provide any business reasons as to why it could not allow Joe to work 27 hours per week and on a Monday and/or Tuesday. Joe’s Employer had not sought a medical opinion from an Occupational Health Therapist about his disability and what recommended adjustments could be made. In all the circumstances, therefore, Joe’s Employer had failed to make reasonable adjustments. In addition to this, Joe’s Employer subjected him to less favourable treatment by insisting he works at the quietest times every weekend (when his colleagues who did not suffer from a disability did not have to work every weekend) and by insisting that he seeks his manager’s approval before taking breaks, in circumstances when it knew Joe had been bullied by him and that it would not always be possible to obtain such authority.    In addition to a claim for disability discrimination, Joe could also claim victimisation under the Equality Act 2010 because he was subjected to further less favourable treatment because he made a complaint (by raising his grievance) about disability discrimination, as his Employer threatened that he would face ‘proceedings’ if he does not accept the proposed variation to his terms and conditions of employment.    Joe was advised that if he were to pursue a claim in the Employment Tribunal for disability discrimination, he would be entitled to compensation for his injury to feelings, his future loss of income (if he were to resign and leave the gymnasium) and possibly the personal injury he had suffered due to his condition becoming worse as a result of his Employer’s failure to accommodate his disability. It was also explained to Joe that the Employment Tribunal would make a recommendation about reasonable adjustments for his continued employment (if he did not leave).    At the interview with his solicitor, Joe was concerned about the costs involved in pursuing an Employment Tribunal claim. However, when his solicitor discussed the matter with him, it became clear that he had Legal Expenses Insurance which would fund legal assistance. Joe was very surprised he had not realised he had such cover in his Home and Contents Policy. Joe’s solicitor assisted him to apply to his insurers for funding and then issued an Employment Tribunal claim on his behalf.    Employer Law     The Equality Act 2010 is the law which bans unfair treatment and helps achieve equal opportunities in the workplace and in wider society.  For further information and to download publications visit:  www.homeoffice.gov.uk/equalities/equality-act  

Privacy Overview

• Case Studies

The following three case studies illustrate common problem types that ACDL has worked on for people with disabilities in New South Wales. All case studies have been de-identified.

CASE STUDY 1 – Assistance Animals

Maria has diabetes, depression, anxiety, agoraphobia and chronic back pain. Two years ago, her GP recommended that she get an assistance dog to assist with her disabilities. Maria has trained her dog to be a diabetic alert dog, so he can let her know if her blood sugar is crashing, and she also finds that her dog greatly assists her with her other disabilities via companionship, increased physical movement and general comfort.

Maria bought an apartment in a strata complex last year, and notified the strata manager that she had an assistance dog. The strata manager said it shouldn’t be a problem but she would need to submit an application to the body corporate. She did so prior to moving in and provided supporting documents from her doctor highlighting how the dog alleviated her disabilities. She also provided information on the level of training the dog had been given. However, the Strata manager said she could not keep the dog as she had not provided sufficient information about his accreditation, and therefore Maria had to be apart from her dog for some months.

After obtaining documents and consider Maria’s matter, ACDL wrote a letter to the Strata manager on Maria’s behalf, explaining that her dog satisfies the requirements disability discrimination legislation as the dog is trained to alleviate her disability and trained to an appropriate standard in a public place, and that Maria would be bringing her dog onto the property as at that date. Maria was then able to bring her dog onto the property with confidence.

CASE STUDY 2 – Education

Omar is a 13 year old student in Year 7 at a public school. He has autism, ADHD, ODD and anxiety, and has a behavioural management plan in place. Due to his disabilities, he often acts out in a silly or joking manner, including swearing, and he often lashes out physically when distressed, which is why his behavioural management plan focuses on ways to calm him down. The school follows a strict discipline policy for anything that is seen as misbehaviour: any student who swears or engages in any physical altercation of any level is automatically suspended for 2 days, and progressively longer suspensions occur for each new breach of behaviour.

Omar experienced increasingly long suspensions throughout year 7 for minor incidents of physical altercation with other students as a result of bullying, firstly for 2 days, then 4 days, then 5 days, culminating in a 20 day suspension for appearing to threaten a teacher. The teacher and other students interpreted this as clowning around rather than a genuine threat and the situation was quickly defused. The incident was not even mentioned by his teacher to his parents until the suspension occurred some days later. His mother repeatedly requested that the discipline and suspension policy be amended to take into account Omar’s tendency to act out inappropriately, and institute alternative forms of discipline in accordance with his behavioural management plan, such as detention or similar. The School did not do so, and after the last long suspension, Omar was again found to be misbehaving and was threatened with expulsion.

ACDL wrote a letter of advice to Omar’s mother on the prospects of success of a claim of disability discrimination, noting that there was a strong case of indirect discrimination in the School’s treatment of Omar’s in relation to the discipline policy, in that he could not comply with the discipline policy because of his disabilities, and the School had failed to make reasonable adjustments which would accommodate his disabilities despite repeated requests. ACDL explained the process and options for making a discrimination complaint, as well as providing referrals for assistance with challenging the procedural decision to expel him on other grounds. Omar’s mother said that she found the advice very helpful and allowed her to consider all her options clearly.

CASE STUDY 3 – Employment

Danielle was diagnosed with Hepatitis C. She worked at an accounting firm and did not tell them about it when she got the job. She was worried about what they would think and she did not think that her diagnosis would affect the way she did her job.

One day, she told a close workmate. When she came to work the next day, she found that her workmate had told other people. After lunch, there was a note on her desk calling her a ‘druggie’.

Danielle was really upset. After a few days, she decided to ask for a meeting with her employer to tell her what had happened. Danielle’s employer seemed shocked to hear about the behaviour of the others but was worried that if he said something it might cause conflict within the team. He said he would say something to the other employees, but kept putting off actually doing so.

Danielle approached ACDL for advice. ACDL told her that she might have a complaint of disability discrimination or harassment under the law, but Danielle did not want to make a complaint at this point in time. ACDL wrote a letter detailing the requirements under disability discrimination law and asking the employer to resolve the matter swiftly.

Upon receiving the letter, Danielle’s employer called an urgent staff meeting to discuss the importance of a safe work place and the policy on harassment and discrimination. Danielle’s complaint was then dealt with in accordance with the workplace grievance policy and the situation was resolved.

Some helpful resources:

• Legal Resources
• COVID-19 Specific Resources
• Frequently Asked Questions
• Law Reform and Submissions

Australian Centre for Disability Law

We promote and protect the human and legal rights of people with disability and their supporters through legal advocacy. We do this by providing free legal advice and representing people with disability discrimination cases.

Through our work we proactively aim for recognition and respect of human and legal rights, remove barriers, eliminate discrimination, empower people with disability, and increase provision of access to justice.

Useful Links

Hours & info.

Our advice line is open Mondays, Wednesdays between 9.30am – 12.30pm and Thursdays 1.30pm – 4.30 pm

Voice: 1800 800 708 or (02) 7229 0061 Fax: (02) 8088 6069

Email: [email protected] or [email protected] (for non-legal advice)

Postal: PO Box 989 Strawberry Hills NSW 2012

• Discrimination and Sexual Misconduct

Disability Grievance

For privacy, you can exit at any time.

What is a disability grievance?

A grievance is complaint of discrimination or harassment on the basis of disability. It can be made by staff, faculty, students and applicants for both University employment and academic admission, vendors, contractors, and third parties.

 Examples of Issues Necessitating a Disability Grievance

• Unrealistic workload or expectations
• Need for reasonable adjustments, such as physical or learning accommodations
• Failure to follow policies or procedures

How to report a disability grievance

Report to the Office of Civil Rights and Title IX Compliance

A grievance must be filed in writing, contain the name and address of the person filing it, and briefly describe the alleged violation.

Confidentiality and Disability Grievances

Northwestern cannot ensure total confidentiality in its investigation of grievances filed under these procedures. However, Northwestern makes every reasonable effort to conduct investigations and related proceedings in a manner that protects the privacy of all parties.

Learn more about this issue

Grievance Procedures

Related Policies

Frequently asked questions, who will see my report.

The report will be handled by Northwestern's Office of Civil Rights and Title IX Compliance . 

What will happen to me after I report?

An investigation will follow the filing of a grievance. The investigation will be conducted by the Section 504 Coordinator or his/her designee.

You will have the opportunity to describe your allegations and present supporting witnesses or other evidence. The respondent will have the opportunity to respond to each allegation and present supporting witnesses or other evidence. The investigator will review evidence presented and may meet with additional witnesses. 

What are the next steps? Will I be told the resolution of what I shared?

At the conclusion of an investigation, the Section 504 Coordinator will determine whether Northwestern’s policy prohibiting discrimination and harassment has been violated on the basis of disability. The Section 504 Coordinator will provide his or her conclusions and any recommended actions to the appropriate University office. 

• For staff, the appropriate office is the Office of Human Resources in collaboration with the respondent’s manager(s).
• For students, the appropriate office is the Dean of Students.
• For faculty, the appropriate office is the faculty member’s Chair or Dean.

Know your rights: Northwestern's Non-Retaliation Policy

Northwestern's Policy on Non-Retaliation strictly prohibits retaliation against any member of its community for reporting or inquiring in good faith about suspected wrongful or unlawful activity, or participating in an investigation or proceeding related to such activity. The University considers such actions to be protected activities in which all members may freely engage without worry of negative consequences. 

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Call for Papers - Special Issue: Disability and Disease in the Novel

Call for Papers for a Special Issue of Studies in the Novel : Disability and Disease in the Novel

Editors: Dr. Lydia R. Cooper (University of Seattle) and Dr. Matthew L. Reznicek (University of Minnesota)

In this Special Issue, we are looking for scholars engaged with the question of how the novel returns us to the human in precarious embodiment–in disease and disability. The form of the novel, with its heteroglossia, its democratizing impulses, its modes of psychological representation, has long been associated with representation of populations, in the singular and collective. Not surprisingly, historically and in the present, bodily otherness–especially when that otherness is due to disease or disability–troubles notions of belonging and community. As Judith Butler reminds us, in terms of the ethics of cohabitation, the body itself is framed as being potentially undone by alternative embodiments of disease and disability–from the hunger of Fantine in Les Miserables to the wartime injuries of Persuasion , from the embodied grief of Beloved to the body as bioweapon in American War . In contradistinction to the image of the body undone by these conditions, critical disability studies and care ethics challenge our perception of the “brokenbeautiful” by emphasizing “bodies’ wisdom, need, and desire” (Piepzna-Samarasinha 2018). The novel as a form often allows us to sit within this tension between the body’s needs and its undone-ness, providing the opportunity to uncover more complex forms of embodiment. Indeed, the phrase “temporarily able-bodied” points to the intersection of temporality, embodiment, and normativity that shapes and is disrupted by literary representations of the body when it experiences disease and disability (Puar 2017).

This special issue seeks essays that explore the way the novel as a form intertwines, disaggregates, confounds, and represents the embodied experience of disability and disease. We invite essays that employ a range of theoretical perspectives and are particularly interested in approaches from the intersection of the form of the novel with queerness, disability, and care ethics, along with studies of embodiment, care ethics, disability studies, queer and crip studies. We draw heavily from critical thinkers on disability and embodiment, such as Judith Butler, Alison Kafer, Emile Durkheim, Sami Schalk, Lennard Davis, Rosmarie Garland-Thomson, Tobin Siebers, Leah Lakshmi Piepzna-Samarasinha, and J. Logan Smilges, to situate our understanding of disability, disease, populations, and belonging.

This Special Issue on disability and disease in the novel calls us to encounter each other–and ourselves–where we least expect to, and where we most need to: at the limits of our ability to make meaning, to perform functions, even to live . It is here where we find each other; it is here where our commitment to what makes us human begins.

The aim of this Special Issue is to offer studies across temporal, geographic, and theoretical boundaries which together will produce a groundbreaking collection from new and established voices across the breadth of Literary Studies.

We particularly hope to see contributions that address

●      Disability, disease, and the body in various genres of the novel such as eco-gothic, cli-fi, and horror

●      Disease, pandemics, and ethics of care in historical, contemporary, or speculative narratives

●      The impacts of violence, conflict, and crisis on disability

●      The structural causes and consequences of notions of “disability” and/or diagnoses of “disease”

●      Indigenous and postcolonial literatures’ representations of health and/or illness

●      Diaspora, immigration/migration, and transnational narratives of dis/ability

●      Narratives of the body about and by trans, intersex, and 2S people

●      Race, ethnicity, class, gender, sexuality, and/or national identity as they intersect with the experience of disease, disability, and embodiment

The deadline for submissions is October 1, 2024 . Please submit to the Special Issue editors: Dr. Lydia Cooper at [email protected] and Dr. Matthew Reznicek at [email protected] . Please feel free to email with queries about potential ideas, as well.