“Every day you are working you have to prove it”: Navigating the costs of work and ableism with visual impairment

1.1 Background

More than 50% of the United States population with visual impairment are either not working or not seeking work (McDonnall & Sui, 2019). While many factors likely contribute to this low rate of labor market participation, employment-related costs represent an additional financial barrier to participation that is understudied. Bell and Mino (2015), for example, examine a large survey of adults of working age with visual impairment in the United States and find various demographic and contextual factors to be significant predictors of employment, such as the person’s education level and access to vocational rehabilitation programs. However, the survey analyzed did not ask about any employment-related costs the person may sustain and that could impede the ability to engage in work if the person cannot afford the expense. It is important to recognize that such costs can occur despite a legal context guaranteeing people with disabilities a right to a reasonable accommodation at the cost of the employer.

Indeed, with respect to employment, the Americans with Disability Act (ADA) requires that employers provide reasonable accommodations that ensure equal opportunity in the job application process, the ability to perform the essential functions of a job, and the ability to enjoy equal benefits and privileges of employment (Americans with Disabilities Act et seq., 1990). Yet, it was recently estimated that less than 60% of individuals with disabilities receive needed accommodations in the workplace (Maestas et al., 2019). Further, the ADA protects people with disabilities from various forms of employer discrimination, such as constructive discharge and discriminatory hiring and promotion practices. However, research suggests that people with visual impairments (among other disabilities) still perceive workplace discrimination and, when they file charges under the ADA, they struggle to obtain resolutions in their favor (Victor et al., 2017). Now more than three decades after the passage of the ADA, people without disabilities remain three times more likely than people with disabilities to be employed, a disability employment gap that has remained consistent since data tracking began in 2009 (BLS, 2023). This persistent underemployment of disabled people has been attributed to factors such as dependence on lawsuits to enforce anti-discrimination policy, employer attitudes, and the Social Security disability policy work disincentives (Maroto & Pettinicchio, 2015; Wong et al., 2020).

Disability-related employment costs are taken into special consideration for blind beneficiaries in the Social Security Administration (SSA) programs, Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). People who are blind can earn more per month, $2,460 in 2023, without jeopardizing their SSDI benefits than their non-blind disabled counterparts whose income limit, known as the Substantial Gainful Activity (SGA) amount, is $1,470 per month in 2023 (SSA, 2023). SSI deducts half of each dollar earned by recipients in their monthly benefit check, however people who receive SSI based on blindness can subtract any income they expend to earn this money from this calculus, whether or not the expenditures relate to blindness. SSA refers to these expenditures as Blind Work Expenses (BWE), and contrasts them with Impairment-Related Work Expenses (IRWE), which apply to non-blind SSI recipients and result in lower monthly benefit checks (SSA, 2023). However, more broadly, SSI/DI benefits remain a barrier to employment as recipients fear losing their benefits despite the aforementioned advantages, and benefit receipt has been widely associated with higher unemployment rates among vocational rehabilitation consumers (e.g., Bell & Silverman, 2018; McDonnall et al., 2022).

One of the major resources available to job seekers with visual impairments are the vocational rehabilitation (VR) programs offered through grants provided by the federal government to states. Individuals on a vocational or educational track are eligible to receive services such as job counseling and job training as well as adaptive equipment to utilize in the workplace. Some states have one agency that serves individuals with all types of disabilities, while some states have a separate agency for those who are legally blind. Funding is also available to serve individuals over age 55 who seek to achieve independent living goals (United States Department of Education, n.d.).

In a survey of nearly 400 people who were visually impaired and had workplace experience, almost all of them reported VR services receipt, most often related to assistive technology access and training (Crudden & Steverson, n.d.). Surveys of employers and hiring managers indicate a range of positive and negative attitudes toward blind and visually impaired people (McDonnall et al., 2015; McDonnall & Crudden, 2018). The majority of employers reported not knowing how blind or visually impaired job applicants could perform job duties via accommodations and assistive technology. McDonnall, Crudden, and Zhou (2013) surveyed VR staff members across the U.S. on their interactions with employers. The majority of respondents (83.6%) reported that they believed employers displayed attitudes toward blind and visually impaired applicants that were more negative than attitudes toward individuals with other types of disabilities. However, by providing information on, and demonstration of, accommodations and assistive technology, VR professionals report being able to encourage employers to hire job applicants who were blind or visually impaired, having assuaged their concerns around applicant capacity.

A review of the research on the unmet accommodations among people with visual impairment further indicates employer perceptions of the high costs of accommodations as a major barrier to employment (Dong et al., 2017; Moon & Baker, 2012; Papakonstantinou & Papadopoulos, 2020). This body of work thus indicates an ableist workplace culture generally biased against the labor force participation of people with visual impairment. How people with visual impairment navigate these barriers and at what costs remains an important yet under research question that we aim to shed light on in this qualitative research study.

2.1 Sample

Fifteen people, all with visual impairments, participated in the study, which consisted of four individual interviews and five focus groups of between two and three participants. The average age was 48, with the youngest subject 28 and the oldest 65. Among the 15 participants, nine were male and six were female. In terms of racial composition, seven were Black, three Hispanic/Latinx, one multiracial, one white, and three did not respond. Additionally, 10 participants reported receiving Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) benefits, two reported working full time, two reported they were unemployed and seeking work, and one reported neither being in the labor force nor receiving benefits. Regarding educational attainment, seven reported a high-school degree or lower, seven reported some college, an associate’s degree, or a bachelor’s degree, and one reported a post-graduate degree. The majority of participants lived in rental units, and just two of the 15 reported living in homes that were owned by themselves or a family member. Moreover, 14 out of the 15 described their place of residence as in an urban setting, and all participants lived in the greater New York City metropolitan region. See Table 1 for participant sociodemographics.

3.1 The cost of accessing employment

Participants identified challenges accessing the job market in multiple areas, including the accessibility of job application processes, the need for greater skills to be a competitive job applicant, and the perception and experience of employer bias as a result of ableism and disability discrimination. In addition to these barriers to employment, several participants indicated that access to assistive and adaptive technology represented a job-seeking necessity. One participant expressed needing time to practice and sharpen his computer skills before he felt ready to enter the job market. Yet, he did not have the sizable funds needed to purchase an accessible computer with the requisite adaptive software. For example, a home license for one of the most popular screen-reading technologies, JAWS, can cost $1,000. As the respondent explained:

Here, a catch-22 of expensive adaptive equipment is introduced, in which this participant’s unemployment prevents him from purchasing the “gadgets” he needs before he can access employment, which for him included adaptive technology such as a special keyboard and a large monitor. Absent the income to purchase the needed device, the respondent felt he could not return to work.

Participants referenced the availability of services like Vocational Rehabilitation to meet their needs for adaptive technology in the context of employment as well as school and everyday usage, but noted barriers to their access. For several participants, complex rules and bureaucracy diminished the usefulness of VR services. As one participant noted:

Participants wanted to be able to integrate accessible technology into their everyday life in order to practice using it before entering the job market and have more ease in the tasks of daily living, but found that they needed to be on a predetermined timeline in order to access some VR services. As another participant explained, “they say we are going to enroll for the [local VR program] which you have to either be ready to work . . .  or you have to, like, as all these details that they have to go through of this bureaucracy.” One participant who successfully worked with their VR agency to access adaptive technology found that they had to give it back at the end of their work program: “I was doing like a work program. So they provided all of that. But once I stopped doing that program, they had to take it back . . .  They are expenses that I think will be really helpful. I just cannot afford it.” Participants struggled with the limited and conditional access to accessible technology they found in their VR agencies as they described needing time to practice using new technology, needing to take breaks in their employment search, and managing the bureaucracy involved in continued access. Their struggles with the administrative burden of accessing VR services led some participants to feel that they must bear the costs themselves, or risk being a financial burden to potential employers.

Participants described their concerns about employer discrimination against them because, with their low vision, they would need costly accommodations in order to work effectively. The Americans with Disabilities Act (ADA) requires that employers pay for necessary accommodations for their employees, but participants referred to these legal protections as double-edged swords. While their right to accommodations and to not be discriminated against are enshrined in law, participants saw employer anticipation of costly accommodations acting as a disincentive to hire them. As one participant described:

This participant not only feared his need for accommodations might make him less employable, he had planned his workaround by acquiring his own adaptive devices for use in the workplace, a tactic of self-accommodation not available to those with fewer resources.

Thus, due to the fear of employer discrimination, some people with visual impairment— as was the case with this respondent— may feel the need to pre-emptively purchase technologies that help them work in order to increase their chances of getting hired and accessing employment. While participants referenced fears of employer discrimination rather than mentioning specific experiences of it, their fears are supported by research. A recent systematic review identifying contributing factors to employers’ failure to hire people with disabilities identified concerns over the costs of disabled employees as one of the most frequently cited factors (Nagtegaal et al., 2023).

Fears about employer discrimination came up from participants throughout the job application process, particularly at points when they may need to disclose that they have visual impairment. As one participant explained, “when I go in on job interviews, it’s kinda [sic] hard because not everyone knows you’re visually impaired and you cannot see the application to fill it out.” In this situation, the participant noted that a job application process was not accessible, and yet he feared for how the lack of access would make him look. The need to request accommodations during an application process required job candidates to disclose their disability before receiving a job offer, hence increasing their perception of risk of experiencing discrimination in hiring. These fears of job discrimination thus likely magnify the pressure to preemptively purchase accommodation technologies that lessen the perceived burden on employers.

3.2 The costs of maintaining employment

Even when participants were able to obtain a job, their visual impairment–related struggles and costs were not over. Participants described the process of trying to manage their employers’ perceptions of them as hard workers who are “worthy” of being accommodated in their efforts to maintain employment. One participant vocalized an understanding of workers’ rights under the ADA as well as an understanding that there were ways for employers to get around the law: “Of course, they can’t legally say, ‘Well we are going to let you go because you require us to do too much.’... There are other ways they could get rid of you or make your life a living hell.” Here, this participant recognized that there were multiple ways to lose access to a job beyond simply being fired. Since the ADA does prohibit discrimination based on necessary disability-related accommodations, the person feared being driven out of a workplace by employers using other, unprotected tactics. While constructive discharge of people with disabilities is considered discrimination under the ADA, participants seemed either unaware of this or unconvinced that the policy would actually protect them. The concern that disability may render one an undesirable employee regardless of skill set was widespread. As another participant put it, “because now people have to accommodate you, which they are not necessarily able to or comfortable doing.”

In efforts to mitigate potential disability bias, participants described efforts to make themselves appealing as employees. One participant referenced weariness from years of overworking in an attempt to combat their perception of their employer’s distrust of their competence: “I am working longer and harder to get projects done to prove myself.... We are limited as to... what people think we can do.... Once you disclose your visual impairment, they’re not going to give you another opportunity.” The sense that, as an employee with a disability, one had to continually “prove themself” to maintain employment was echoed by other participants. This effort to prove oneself as worthy of employment was further challenged by perceptions of ableist bias that people with visual impairment would not be competent employees. “We’ve got to work twice [as hard]... we have to be able to prove oursel[ves] and that is not easy.... A normal person, you prove yourself once; once you proved your point, the case is settled. But [for us] every day you are working, you have to prove it.” Here, the participant speaks to their perception of the persistence of ableism and assumptions of incompetence in the face of evidence to the contrary. As the need for accommodation was a constant feature of employment, so too was the participant’s need — or perception of the need — to prove worthy of it.

Given this context of elevated pressure, some necessary items that allowed participants to do their jobs successfully, given their visual impairment, created out-of-pocket expenses that were not covered as accommodations under the ADA. One participant worked as an accommodations consultant for other working people with disabilities, and so had particular familiarity with these issues. The participant discussed the financial challenges an acquaintance he described as a blind social worker incurred while working. The respondent described his acquaintance as a social worker who conducts home visits, and said she requires frequent, reliable, and accessible transportation, but due to her visual impairment and the inaccessibility and inconvenience of public transit:

This discussion introduced the blurry lines in “necessary” accommodation, as participants discussed the differences in what they needed to do a job’s most essential functions versus what they needed to remain competitive as an employee.

Other participants shared these concerns about using paratransit where timeliness and productivity were concerned: “... the reliability of that cheaper transportation is not that great and... Access-A-Ride does not allow you to have a productive day either because of all the hours you spend waiting on your ride and all the hours they take to get you to where you have to go. So at that point, you do a lot less.” The participant who consulted on disability in the workplace continued on to discuss how costs that some might consider luxuries or conveniences were necessary for him to remain competitive in his own fast-paced world of work:

He discussed how the costs added up as he tried to fit into a work world that is primarily able-bodied. While these costs may be necessary for maintaining employment, they are not considered necessary accommodations, as “fitting in”— while being a critical component of job success— is not covered as an “essential function” that ADA accommodation law would require an employer to fund.

While many participants discussed a previous work life with nostalgia and others expressed their desire for work, only two participants were fully employed. The experiences that the two employed participants recounted suggested that their work lives were filled with fights for access and fears of employer discrimination, both of which indirectly incurred extra costs. Across these themes, we observed interactions between participants’ perceptions and experiences of ableism and the extra costs associated with accommodations for visual impairment, which created a number of issues that fell between the cracks of current disability rights law.

3.3 The costs of perceived ableism on labor market behavior

A third sub-theme identified in the analysis concerned the costs of perceived ableism in the workplace and its impact on the way people with visual impairment make decisions about work. Ableism most broadly can be defined as the stereotyping, devaluing, oppression of, and discrimination against people with disabilities on the individual, interpersonal, and societal levels (Bogart & Dunn, 2019). The costs of accessing and maintaining employment described in the previous sections were rooted in perceived and actual employer bias and economic sequelae of accommodations as enshrined in the ADA. Participants described the resulting climate of job scarcity and anxiety as they navigated the labor market with little social and economic capital. Further, they described their employment-related decision-making as contextual to this climate, leading them to make decisions to alternatively exit the labor market, remain at a substandard job, or accept a low-paying or otherwise low-quality job. One participant described feeling the need to stay in jobs that “make [him] miserable” because of the idea that he is generally an undesirable hire and he might lose, or had already lost, a rare opportunity at employment. One participant, who happened to work in the field of employment supports for people with visual impairment, described this phenomenon that they had witnessed among their clients: “Because it is a lot harder for people to find jobs, and a lot of them that are actually working are working jobs that they are absolutely miserable at and holding on for their life because they are afraid if they leave that job, they may never find another job.” Thus, perceptions of ableism in the labor market writ large and perceptions of a resultantly narrowed job market continued to have impacts on workers with low vision beyond the employment obtainment and maintenance phases and into their capacity to achieve job satisfaction. One participant referred to this perceived phenomenon of not having the opportunity to meet his earning potential as a “financial hardship in itself.”

Another participant discussed the issue of job quality in the context of the absence of labor policy protections for people with disabilities:

This participant was likely either referring to low pay warehouse jobs, which offer little in the way of career advancement and which do not offer a livable wage in most of the U.S., or to sheltered workshops, which are institutions that are permitted to pay sub-minimum wages to people with disabilities in exchange for some sort of preparation for gainful employment in the actual labor market, a stark example of ableism encoded in federal employment policy. While to date, ten U.S. states have recognized that such workshops may exploit people with disabilities and have banned the practice, they still exist and are legal under federal law (Hoffman, 2013; Taylor et al., 2021). Although sheltered workshops are becoming increasingly outlawed, their existence could bolster participants’ perception that there are few quality job opportunities available to them as people with visual impairments. As with participants’ doubts of the ADA actually being able to protect them, there may be some lag time between laws changing and people’s ability to make decisions on the faith of these legal protections. In the labor market context in which people with visual impairment are expensive to accommodate and can be hired for subminimum wages, ableism can thrive and create economic and psychic barriers to employment. Participants coped with this climate through a range of mechanisms, from opting out of the labor market altogether to remaining at substandard jobs that did not meet their earning potential.

Participants described that visual impairment added challenges and difficult choices to their everyday life. They voiced that those who were not visually impaired did not need to make the same types of choices. The workplace can seem unforgiving to those who need accommodations. In discussing luxuries and necessities, participants would often pause over what they knew others considered technical luxuries that provided them access to mainstream society. Use of Access-A-Ride paratransit for work or a day with more than one appointment means the user may risk being late to work, and many workplaces impose penalties for lateness and do not have room for flexible arrival which can put employment at risk. Thus, paying for a cab or car service might be necessary for holding down a job or even searching for an apartment. While public transit remains an option for some, many people with visual impairments and other disabilities continue to struggle with physical and attitudinal access to public transportation systems (Bezyak et al., 2017, 2020; Sabella & Bezyak, 2019; Wong et al., 2020). Since transportation to work is the responsibility of all employees, it is not considered as part of “reasonable accommodations” under the ADA. Still, as more affordable transportation options are not always accessible, it can therefore become an out-of-pocket cost for employees. In this way, the cost of modern conveniences straddled a complex line between necessity and luxury. Some people, such as one participant in this study, could exist outside of the mainstream economy through the use of homeless shelters and the Housing Choice Voucher Program (Section 8), Access-A-Ride, and magnifiers whose cost was subsidized. Yet, in this sphere of existence, survival remained the primary focus and this participant did not consider returning to work an option even worth considering.

4.1 Study limitations

The study sample was recruited from the New York City metro area through a university-affiliated optometry clinic. Thus, participants live in a region of the United States with relatively wide access to social services, public transportation, cutting-edge optometry care, and technology. This may have provided more access to information about assistive and adaptive devices that result in extra costs. In addition, they likely had access to more public resources than counterparts in more rural areas with fewer social services serving them. Additionally, the study sample size was 15 participants. While this sample allowed for the development of several strong themes related to the extra costs of low vision, a larger sample size would add rigor to these findings and allow for a more nuanced understanding of how extra costs relating to employment may vary among subpopulations.

4.2 Study implications

The technology for assistive visual devices is rapidly progressing (Kugler, 2020) and could theoretically allow for easier integration into the labor market and other aspects of society. Findings suggest that home access to visual devices before the job application period might be beneficial to help individuals begin incorporating their use into daily life, to complete online job applications, and to sharpen skills in preparation for the job market, even if one cannot access an in-person job preparation program. One participant suggested that a no-interest technology loan or grant might benefit people with low vision who find themselves seeking job placement in the future. Many states provide low-interest loans through the Assistive Technology Alternative Financing Program (AFTAP) which in New York State is administered by the National Disability Institute (National Disability Institute, n.d). New York State also offers the Equipment Loan Fund (Office of Children and Family Services, n.d). These loan programs may need increased visibility to the target populations. National non-profit organizations such as the United Cerebral Palsy Foundation (United Cerebral Palsy, n.d.) and the Association of Blind Citizens (Association of Blind Citizens, n.d) have assistance programs to obtain equipment. Those who can benefit from these programs that can help pay for assistive technology may not be aware of the programs or of how to apply. These loan and assistance programs have a range of funding available, and sufficient funds would be needed to account for the expensive software and hardware that adapts to people with visual impairment. This type of access could help people acculturate to a fast-moving work world. While there are organizations that will pay for certain assistive technologies for people who are actively job searching, participants reported that the program stipulations meant that they could not always access them when necessary.

The gap between employee rights enshrined in the ADA and the reality of participants’ experiences of workplace accommodations (or lack thereof) leaves space for programmatic and policy intervention. Research suggests that many disabled workers are unaware of their rights to workplace accommodations, and still others lack guidance in navigating the interactive process of obtaining necessary accommodations (Moon & Baker, 2012; Solstad Vedeler & Schreuer, 2011). Further, findings suggest that those with visual impairment expect to experience workplace discrimination, starting in pre-employment, and incur extra costs to combat the ableism of the job market. As the ADA requires employers to bear the burden of accommodation costs, employees requiring these accommodations reasonably fear and experience employment discrimination. These fears led research participants to make financial sacrifices in order to prove their worth, such as paying out of pocket to self-accommodate for their needs. In addition, concerns about employment discrimination led participants to opt not to enter the job market, which results in having less income to pay for needed daily expenses or assistive devices. In a qualitative study comparing experiences of disabled worker accommodation processes in the United States and Norway, Solstad Vedeler & Schreuer (2011) noted that, unlike their U.S. counterparts, Norwegian employees were not concerned about costs of accommodations they requested due to third-party government-funded accommodations, though they did encounter issues with government service delays. Taken together with our findings, this suggests an opportunity for policymaking to develop public funds for employers to access for funding their employees’ accommodations. Eliminating the cost-related concerns of accommodations, perhaps by enhancing and promoting existing vocational rehabilitation programs, could impact the costs of accessing and maintaining employment for people with visual impairment and other disabilities.

Vocational rehabilitation programs have the potential to assist people with visual impairments in overcoming the employment barriers imposed by high disability-related expenses. Crudden and colleagues (2018) find, for example, that competitively employed vocational rehabilitation clients with visual impairment who received on-the-job support, diagnosis and treatment, or rehabilitation technologies — all of which likely reduce visual impairment-related expenses — were more likely to retain competitive employment. However, literature on VR effects on employment suggests mixed results. A recent longitudinal study of vocational rehabilitation programs for those with visual impairment across three states found no long-term employment effects but a positive effect on earnings for those who were employed (Clapp et al., 2020). The same study found that in Maryland 38% of vocational rehabilitation applications with visual impairments received assistive technologies, compared to 21% in Oklahoma and 8% in Virginia (Clapp et al., 2020). Our findings suggest that administrative burden, and in particular compliance costs (see, Moynihan et al., 2015), or the burden of following VR rules and requirements to access services, may be a barrier to program participation. Future research should assess whether easing VR procedures on access to adaptive technology might increase their effects on employment outcomes. We echo suggestions by Clapp and colleagues (2020) to further examine whether access to assistive technologies in particular has different effects on labor market outcomes, perhaps due to their ability to reduce the cost-burden associated with returning to work.

Other policy suggestions identified in the literature that our findings support include additional tax incentives for businesses that hire people with disabilities to offset the real and perceived costs of accommodation and promoting assistive technology loan programs (Moon & Baker, 2012). Further, from an organizational perspective, educating employers about ableism, promoting the adoption of workplace technology that is universally designed, and creating more accessible job applications and work environments would likely help reduce discrimination.