Abstract
BACKGROUND:
People with visual impairment often need many items that their sighted counterparts do not, such as assistive devices, transportation services, and other disability-related goods and services. Acquiring these items represents a major barrier to the employment of people with visual impairment.
OBJECTIVE:
This study aimed to explore the nature of disability-related employment costs as they relate to engagement in the labor market of people with visual impairment.
METHODS:
The research consisted of a qualitative analysis of interviews and focus groups with 15 visually impaired adults from the New York metro area.
RESULTS:
What emerged were the costs of accessing and maintaining employment— particularly related to meeting the expectations of expediency in the modern world— in areas like communication and transportation. These costs interacted with perceived ableism in the labor market and created a climate of job scarcity and anxiety, which came at additional cost to participants who felt stuck in low-paying work.
CONCLUSIONS:
Further research is needed on the impact of perceived ableism and disability-related employment costs, and on decreasing barriers to programs that may ameliorate these costs, such as vocational rehabilitation services. Such research would inform policy interventions geared toward enhancing disabled people’s participation in the labor market.
Introduction
Disabled people1 incur many more expenses than their non-disabled counterparts for items such as assistive devices, health and social care, home and car adaptations, and other disability-related expenses (Mitra et al., 2017). A recent study estimated that working-age adults with disabilities in the United States require, on average, 29% more income (or an additional $18,322 a year for a household at the median income level) to obtain the same standard of living as a comparable household without a member with a disability (Morris et al., 2022). In this study, we investigate the nature of disability-related costs and their impact on the employment of people with visual impairments.
Employment is widely understood as an important objective of disability policy as it provides an essential avenue for social inclusion and obtaining an adequate standard of living (Barnes & Mercer, 2005; Bell & Mino, 2015; Lysaght et al., 2017; Vornholt et al., 2018), yet the direct costs incurred by people with disabilities to participate in employment are under-researched. Despite a wide and growing international body of research on the extra costs of disability (Mitra et al., 2017), few previous studies examine disability-related costs specific to the participation domain of employment. By disability-related employment costs, we mean privately borne expenses on disability-related goods and services, such as assistive technologies, transportation options, and other goods and services that a person with a disability needs to partake in employment. One notable study included in-depth interviews with 15 workers with different types of disabilities in the United States in 2013 and identified sizable employment-related costs (up to U.S. $14,800 per year) for items such as personal care assistants, medical goods and services, coinsurance payments, assistive technologies, and service animals (Denny-Brown et al., 2015). However, this study was not focused on the costs incurred by people with visual impairments specifically.
We adopt the social model of disability, which views disability as a clash between a person and their environment when an environment is not structured to meet the person’s access needs (Oliver, 1990, 2013). The classic example is a wheelchair user confronted with a set of stairs. While a medical model of disability locates the problem in the individual’s biology, which prevents them from walking up the stairs, the social model locates the problem in the stairs and the lack of an available ramp that is accessible to the wheelchair user. In the social model, the condition that results in the individual using a wheelchair is referred to as an impairment (Oliver, 2013). In this study, we focus on people with visual impairment and consider disability-related employment costs as a kind of environmental barrier that inhibits the ability of people with visual impairment to participate in work and reach their earnings potential. Specifically, we report the findings from focus groups and interviews on disability-related expenses among adults with visual impairment in the New York metro area in the United States.
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.
Materials and methods
This research is part of a broader mixed-methods study that aims to deepen our understanding of the experiences of those with visual impairments and the additional expenditures required to achieve the same standard of living as non-visually impaired counterparts. The study was conducted at the State University of New York (SUNY) College of Optometry in Manhattan, host to the University Eye Center, which is one of the largest eye-and-vision care clinics in the country, examining approximately 70,000 patients annually. All interactions followed protocol approved by the SUNY Stony Brook University Institutional Review Board and were assigned the number 1249110_MODCR002. These interactions and the research process are described below.
First, a semi-structured interview guide (see appendix) was developed and then discussed with a key informant with a visual impairment who had been identified by a social worker and co-author on the research team. Following this, the full team reviewed the guide and further refined it. A purposive and theoretical sampling approach was then used to recruit individuals for interviews and small focus groups, with the goal of understanding the nature of the extra costs of visual impairment from a wide range of perspectives. Subjects were recruited by the social worker, who approached two current support groups of individuals with low vision, members of past support groups, and those wait-listed for future support groups. The social worker also reached out by telephone to other clinic patients who had previously agreed to be contacted for research studies. In addition, a flyer was supplied to social work and optometry staff for distribution to clinic patients.
Once participants were informed about the study details and had signed the consent form to participate, team members confirmed their vision impairment, which varied among participants. Subjects qualified either based on visual acuity of 20/70 or worse (per the World Health Organization’s definition of low vision), or legal blindness by visual field (no more than 20 degrees in the widest diameter). If there was no record, or if the record was outdated (over a year since the time of consent), the optometrist conducted a free visual assessment to determine visual acuity. The social worker, with the participation of the study lead, facilitated the individual interviews and focus groups, which were held as informal conversations approximately one hour long in a private room at the optometry clinic and were based on the semi-structured interview guide. Recruitment and data collection took place during the Spring of 2019. Participants received compensation for travel costs, but no other form of payment was provided.
Audio recordings of the completed focus group sessions and interviews were transcribed and coded in the software package Dedoose over a period of eight months using Braun and Clarke’s (2012) six-step framework for thematic analysis. The qualitative research expert led the coding process amongst the four co-authors and co-researchers, which allowed for a diversity of perspectives and disciplines including medical social work, optometry, and social welfare research. First, the coders familiarized themselves with the data through transcript cleaning and preparation for analysis. In the second step, the lead qualitative researcher conducted an initial coding of the transcripts, identifying both codes through both inductive and deductive analysis. The third step, which entails searching for themes amongst the initial codes, was completed by the lead qualitative researcher using the Dedoose functions to create root codes for themes that organized patterns found in the initial codes, turned into child codes.
At the fourth step, reviewing themes, the other three coders were brought in to review the coding process, add to and refine existing codes, and discuss the emerging themes. Over three meetings and a series of emails, themes were reviewed and revised through discussions until consensus was reached. The meetings created opportunities to discuss our thought processes behind code development as well as address any potential areas of bias related to our perspectives based in professional disciplines and personal experience with disability that may have arisen in our individual work. We found that these discussions led us to a consensus around the thematic framework of our data. This led to the fifth step, defining and naming themes, as we collectively defined three core themes: Specific extra costs; resources and challenges impacting extra costs; and the effects of extra costs. In the sixth step, writing the report, we focus for the purposes of this article on the third theme, the effects of extra costs, which incorporated codes related to employment issues.
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.
Participant characteristics
Participant characteristics
Note. N = 15.
While the interview guide did not explicitly ask about issues with employment and work-related accommodations, participant responses made it clear that these issues were inextricably linked. Disability-related employment costs emerged as a major theme in the focus groups and interviews and were coded as “employment issues,” which will be the focus of these findings. Within the “employment issues” code, three sub-themes emerged from our analysis of the transcripts: (1) the costs of accessing employment; (2) the costs of maintaining employment; and (3) the costs of perceived ableism on labor market behavior. We discuss each of these sub-themes in the remainder of the paper.
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:
I used to have a job before.... [I] couldn’t perform because my vision was decreasing and... so I [had] to stop working because it was kind of dangerous for me to keep working... so I went from earning money to zero. And right now I need to buy those gadgets that I spoke of before... because if I don’t get those gadgets I’m not going to be able to start working again.
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:
“... going to [the local VR] is not always the easiest thing. You have to commit to going to school or commit to doing something just in order for them to help. Why do we have to go through so much? People who do not have vision loss do not have to go through half of the things that we go through and they have it.”
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:
... I know that if I am seeking a job, I know it is going to be hard for someone to hire me and then to invest money on me right away. One of my keys is to get those devices even if I can work from home or take it to the place that I’m going to work. I have it in mind because I know it’s going to be hard— it’s a huge amount of money for someone to hire.
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.
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:
She ends up paying a tremendous amount of money to be able to do her job effectively, by taking a car service... and so although she is making good money, when you break her travel expenses down, I think she is probably coming home with minimum wage.... They do have Access-A-Ride for those people that do not travel well, but Access-A-Ride is a system that really needs to be fixed. You know, people... spend more of their hard-earned money to take a cab versus Access-A-Ride because jobs are not always very understanding [of lateness].
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:
And so, I find myself spending... whether if it was to pay for conveniences of transportation to get me there on time, whether it was to buy a piece of technology that was going to help me do that job so I could fit in, buy a pair of really good headphones [so] that I did not stick out because I do not want no one hearing me read my email or dictate.
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.
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:
It’s hard to get a job. And most of the job you’re going to get is warehouse with people that deals with people with vision impaired.... [I] was working at two jobs that helped out a little bit you know. But the money didn’t, wasn’t really paying that much for... people like us, from places that they put you to work with not that much money, you know.
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.
Discussion
The study adds to the literature on the extra costs of disability and on the employment barriers experienced by people with visual impairment in a number of ways. Prior research on the extra costs of disability is by a wide margin quantitative with few studies exploring the nature of disability-related expenses as seen through the lived experience of people with disabilities (see Mitra et al., 2017). Moreover, we know of no prior study specifically examining the employment-related costs incurred by those with visual impairment.
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.
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.
Conclusion
What emerged in our discussions with people with visual impairment was that, simply to enter the labor market, individuals incur — or are at a deficit if they cannot incur — numerous costs in order to fit into the expectations of expediency within the labor market. This study demonstrated how interactions between participants’ perceptions and experiences of ableism and the extra costs associated with accommodations for visual impairment created a number of issues that fell between the cracks of current disability rights law, suggesting areas of policy intervention to enhance disabled people’s participation in the labor market. Further, findings reinforce existing research that suggests that disability-related employment costs serve as a critical environmental barrier for people with disabilities, including those with visual impairment, to access employment. Additional research on these costs and their impact on the employment of people with visual impairment is needed to strengthen and refine policy and programmatic recommendations. In addition, intervention studies, particularly within vocational rehabilitation programs, that can provide assistive devices and technology to people before they attempt to re-enter the labor market and follow their progress and challenges would provide important insights.
Footnotes
Acknowledgments
The authors would like to express our sincere appreciation to the individuals who generously participated in this study and to the staff at the SUNY College of Optometry for their assistance in this research.
Conflicts of interest
The authors have no competing interests to declare.
Ethics statement
This study was approved by the Stony Brook University (SBU) Institutional Review Board (IRB) and assigned # 00001460.
Funding
The research reported herein was performed pursuant to a grant from Policy Research, Inc. as part of the U.S. Social Security Administration’s (SSA’s) Analyzing Relationships Between Disability, Rehabilitation and Work (no grant number). The opinions and conclusions expressed are solely those of the author(s) and do not represent the opinions or policy of Policy Research, Inc., SSA or any other agency of the Federal Government.
Informed consent
All study participants engaged in a process of informed consent and gave their written consent for study participation.
