Christine Behle and Sam F. R. Roberts
The Americans with Disabilities Act (ADA), first passed in 1990 and later amended in 2008, was passed as a civil rights law that prohibits discrimination against disabled people. The ADA defines a person with a disability as having “a physical or mental impairment that substantially limits one or more major life activities of such individual; a record of such impairment; or being regarded as having such an impairment” (Americans with Disabilities Act, 2008). Even with the advent of the ADA, discrimination against disabled people is prevalent in today’s society (Friedman & Owen, 2017). Disabled employees report lower pay, less job security, and decreased satisfaction, as well as more negative treatment by management and negative views of coworker relations (Schur et al., 2017).
Logic and evidence suggest that such experiences and impacts extend to those with “invisible disabilities” – impairments that are not apparent through visual assessment and can include “symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences, and mental health disorders, as well as hearing and vision impairments” (Invisible Disabilities Association, 2019). But, just as with the impairment themselves, associated discrimination and impacts often go unnoticed.
As future public administrators, we have an interest in finding ways to better accommodate those with invisible disabilities for a more inclusive workforce. One story compelled us both and led us to research this topic. We spoke with a woman who graduated college with straight A’s and was accepted into a selective film writing program, but ultimately faced chronic job loss and unstable temporary employment due to her short memory and Attention Deficit Hyperactivity Disorder (ADHD). Today, she is unemployed and relies on Social Security Disability Insurance (SSDI) for income. To quote her, “No one tried harder than me.” The fact that someone can make it through a college degree but cannot acquire stable employment due to a disability, indicates to us a systemic problem that requires further investigation.
Internationally, efforts have been made to increase the workforce participation of disabled people. For example, of the United Nation’s17 sustainable development goals (SDGs) to achieve by 2030 speak specifically to inclusion of disabled people in the workforce. Nonetheless, research shows that many with ADHD and other invisible disabilities struggle with employment, and some end up on Social Security Disability Insurance (SSDI; Cook, 2006, ADDA, n.d.). In this study, we sought to better understand the lived experiences of those with both college degrees and invisible disabilities. We also seek to understand how the availability of resources and accommodations after graduation has impacted their ability to contribute to the workforce.
This review sets the framework for our study. We first address the employment disparities experienced by disabled individuals, in experiences of both unemployment and underemployment. A number of factors play into these disparities, including discrimination. Those with invisible disabilities face a particular set of struggles, as their disability is something they can choose to disclose or not disclose to others. Disclosure may lead to increased discrimination, but lack of disclosure may mean lack of accommodations and suffering in work performance. While these disparities and struggles of disabled people in the workforce have been noted, there are still many topics left unaddressed in the literature. Our microstudy has been designed to explore such previously unaddressed topics.
Rates of employment for those with disabilities have been steadily declining since the passing of the ADA in 1990 (Maroto & Pettinicchio, 2015). While employment rates vary by disability type, disabled individuals are less than half as likely to be employed as their non-disabled counterparts (Maroto & Pettinicchio, 2015). Disabled employees are more likely to work part-time or temporary jobs, less likely to have access to benefits such as health insurance or pensions, and contribute less to workplace decisions than their non-disabled coworkers (Schur et al., 2017). Cook (2006) notes that many unemployed individuals with psychiatric disabilities want to work, but feel they need training, services, and support to do so.
Individual Disclosures and Discrimination
People with invisible disabilities encounter different challenges in the public sphere than those with visible disabilities. These different challenges often leave them in vulnerable positions when it comes to the workforce. Those with invisible disabilities are placed in a unique situation. They can choose when, where, and to whom they disclose their disability, or not say anything at all. People who discriminate against disabled individuals often view them as impaired or inferior to the norm (Friedman & Owen, 2017). Invisible disabilities can garner an extra level of stigma, both externally and internally, as they can be difficult to detect and diagnose (Santuzzi et al., 2014). Ambiguity in diagnosing invisible disabilities may make it difficult for others to view the disability as legitimate. It could also lead to coping mechanisms such as self-denial of the disability.
Another aspect of discrimination that disabled people face is educating others regarding their own disabilities (Kattari, Olzman, & Hanna, 2018). When disclosing their disabilities, individuals report subsequently having to educate their employer and coworkers on their own accommodations, needs, and relevant policies (like the ADA) that apply to their situation. This places an undue burden on disabled employees to advocate for themselves, and we call for a better understanding of disability in management and HR workers to support disabled members of the community and alleviate the burden placed on them for self-advocacy.
Stigmatization of disability leaves those with invisible disabilities in a double bind where they may be hesitant to disclose their disability to avoid discrimination, but their work performance or health may suffer due to lack of accommodations if they do not disclose it (Norstedt, 2019). Brohan et al. (2012) noted similar concerns where people with psychiatric disabilities feared a loss of credibility or workplace rejection if they were open about their disability, yet felt a sense of shame or stress in hiding their identity. Some individuals reported positive experiences in disclosing their disability, saying they disclosed it to receive support, gain accommodations, or explain behavior that may otherwise be grounds for corrective action.
After the passage of the ADA, Shaller (1990) assessed the concept of “reasonable” accommodations and how it can be problematic in practice. The definition of “reasonable” can vary from employer to employer, or even situation to situation, meaning there is no established standard for accommodations. Disabled individuals may be able to acquire accommodation in one setting but, after changing settings (such as changing workplaces or moving from higher education into the workforce), the accommodation that enabled them to function is no longer accessible to them in the new setting. Gingold (2015) found that when it comes to invisible disabilities, some employers refuse accommodations, citing that it is not possible under their policies. Santuzzi et al. (2014) spoke further to the policy gaps noted by Shaller two decades before: current legislation lacks the ability to adequately protect disabled employees, particularly those with invisible disabilities. Providing more specific guidance for employers on what might constitute a feasible accommodation may allow them to reallocate resources and adjust policies to increase the number of accommodations that are “reasonable” in their workplace.
Synthesis and Critique of Previous Research
Even though the Americans with Disabilities Act was passed in 1990, it is vague as to what accommodations employers must provide and has not rectified disparities in the workforce related to disability (Americans with Disabilities Act, 2008). Employees with invisible disabilities still face stigma, which can impact their willingness to disclose their disability and seek necessary accommodations. Currently, there are a number of gaps in the literature, including college to workforce transition, inability to get official diagnosis due to income or lack of health insurance, a socioeconomic gap of those with invisible disabilities who succeed in the workforce versus those who do not, and inability to get through the hiring process due to the disability.
In this study, we sought to answer the following research questions: What barriers and other experiences do college graduates with invisible disabilities face in seeking employment and workplace accommodations? How do these experiences impact other aspects of their lives? We attempted to understand the organizational gaps encountered by those with invisible disabilities that completed a bachelor’s degree or higher, but subsequently underperformed or dropped out of the workforce. When gaps were identified, we sought to identify suggestions for institutional improvement to reduce disparities and improve outcomes of college graduates with disabilities.
The study followed an interpretivist approach. We sought to better understand the experiences of those with invisible disabilities as described in their own words. We further incorporated a critical perspective where we investigated possible structural inequities rooted in ableism. This dual-pronged approach was selected because interpretivism views reality as socially constructed by the understanding of individuals. Too often, research on disability features the voices of non-disabled individuals (Ashby, 2011), rather than letting disabled people speak to their own experiences. We aim to uplift the narratives of disabled people to provide a more diverse voice in research, rather than perpetuating inequities through the overlooking of disabled narratives.
Data Collection and Analysis Methods
Our data was collected using semi-structured interviews. We used convenience sampling via social media to recruit four study participants. Our inclusion criteria were: individuals must (1) self-identify as having a medical condition (be it mental, emotional, or physical) that could classify as an invisible disability, (2) have at minimum a bachelor’s degree, and (3) have some experience with entering or attempting to enter the workforce. Participants were not required to identify as disabled – they needed only to identify as having a medical condition that meets the criteria for invisible disability as set forth by the Invisible Disabilities Association (2019).
The in-depth, semi-structured interviews lasted 45-60 minutes and were conducted via recorded video call. Interview questions were designed to gather information from participants on several topics. These topics included accessibility accommodations that participants have utilized or needed in higher education and the workforce; what, if any, barriers they have faced in regards to their disability and needed accommodations; and the impacts this has had on their lives. We transcribed each interview and individually assessed all four transcripts using constant comparison analysis to identify and explore common themes across interviews. Once identified, these common themes helped us delve into the critical theory surrounding institutional and structural ableism.
The four study participants had a range of mental, emotional, and/or physical medical conditions, varying post-secondary education levels, and differing levels of current employment. These participant characteristics are noted in Table 1. Only two of the four participants considered themselves “disabled”, though all four met the criteria for invisible disability as previously defined. The two participants who did identify as “disabled” had caveats to their definition. Interviewee two noted that, while his condition disabled him, he did not have the legal documentation to be classified as disabled. Interviewee four considers himself as having “a disability, with some gifts too.”
|Condition(s)||Identifies as disabled?||Education||Current employment status|
|Interviewee 1||Chronic back pain, adrenal fatigue, hypothyroidism, complex posttraumatic stress disorder, borderline personality disorder, obsessive compulsive disorder (OCD)||No||Bachelor’s degree, multiple one-year professional certificates||Unemployed|
|Interviewee 2||Idiopathic urticaria||Yes||Bachelor’s degree, master’s degree (in progress)||Unemployed|
|Interviewee 3||Attention deficit hyperactivity disorder (ADHD), depression, anxiety, auditory processing disorder||No||Bachelor’s degree, master’s degree (in progress)||Employed part time|
|Interviewee 4||Dyslexia||Yes||Bachelor’s degree, master’s degree, doctorate (in progress)||Employed full time|
There were several ethical considerations to be addressed in undertaking this study. The first concern of research involving human participants is consent. We made sure participants were aware of what exactly was going to be asked of them during their interviews. We outlined the measures taken to maintain participant confidentiality by de-identifying information on the participants’ places of employment and education. These measures were taken to obtain informed consent from all participants prior to the start of the interviewing.
Additionally, we considered the possible negative emotional or mental health impacts for participants in being asked to recall potentially traumatizing experiences of ableist discrimination in academics or the workplace. In approaching this sensitive topic, we emphasized that interviewees did not need to discuss anything they did not want to, and they were free to stop discussing anything at any time. As we conducted interviews, we worked to continually acknowledge our own experiences and beliefs about our research topic and how they impacted participants. We strove to maintain a professional distance, as well as compassion and empathy, and went into interviews ready to learn from our participants.
In our research, we sought to answer several questions: What barriers and other experiences do college graduates with invisible disabilities face in seeking employment and workplace accommodations? How do these experiences impact other aspects of their lives? The four study participants provided a wealth of information to answer these questions based on their own lived experiences. In answering our research questions, we noted a number of general themes that occurred across multiple or all interviews. The main themes noted were employment status (including unemployment, underemployment, and instability), disclosure of disability, stigma, socioeconomic status, family, legal status and protection, accommodations, and personal relationships. Each of these themes is explored in-depth in the following pages.
There were several specific topics discussed by multiple participants that do not necessarily fall into a specific theme but are worth mentioning. Interviewees two and three reported they are currently pursuing graduate degrees as a stopgap in their resume after periods of unemployment or underemployment. Three of the four participants noted that their conditions presented differently or impacted their functioning less before and during their undergraduate degrees, then worsened or began presenting differently after they graduated with their bachelor’s, creating new difficulties as they transitioned into the workforce or graduate school.
Interviewees one and two expressed frustration that, while their medical conditions interfered with their ability to perform a job, they were not legally classified as disabilities and therefore lacked protection under the ADA. Lack of protection and resources creates difficulties in applying to and interviewing for jobs. Interviewees one, two, and three all noted that it is confusing and difficult to navigate existing government support systems, from SSDI to medical insurance systems to resources that provide job skills training or other assistance until someone can find stable employment.
Employment Stability and Aptitudes
With the exception of interviewee four, all interviewees expressed difficulties with employment stability. Interviewee one is currently unemployed and has been for six months. She has had a few stable full-time professional jobs, but for the past three years has been working only temp or part-time jobs with long periods of unemployment in between. Interviewee two is also unemployed. His first job after his bachelor’s was long-term and stable, but he was let go after several years working there and has experienced years-long employment gaps since then. He has worked only part-time or short-term jobs for the past three years. Interviewee three is currently employed with two part-time jobs. She has a few stable jobs in her job history but has also spent much time as a part-time or temp worker. Interviewees three and four both said they are currently satisfied with their employment status, while interviewees one and two are not.
Several interviewees felt employers do not make accommodations available for employees with disabilities. This lack of accommodation led to interviewees feeling pigeonholed out of the workforce and onto SSDI, unable to provide for their families or pursue fulfillment through a career. A noted concern of several interviewees, particularly interviewees three and four, was that they have a lot to offer employers if only the employer would acknowledge their aptitudes. Disabilities often have very negative connotations associated with them, with accommodations being viewed as a tool to mitigate weaknesses. All interviewees have demonstrated competency via college educations where they attained high GPAs, professional certifications and awards, and high aptitudes in certain areas such as abstract problem solving or spatial rotation. It would be useful for employers to acknowledge these strengths and assist employees by giving them roles and responsibilities that play to their aptitudes, rather than viewing disability as a weakness that must be mitigated so disabled employees can perform in the exact same way as their non-disabled peers.
All four interviewees expressed concerns regarding when to disclose their disability to employers. They were all confused about what rights or protections they would have if they disclosed their disability and feared being misunderstood by their employers and co-workers if they did disclose. The interviewees struggled with disclosure to varying degrees. For some, this has created barriers to even get interviewed or hired for a job. Others are given work that takes more time for them to complete than it would for someone without their disability. All four interviewees made it through their undergraduate degree without needing to utilize the disability office for their university, meaning they did not have experience navigating disclosure prior to entering the workforce.
Interviewees one, two, and three expressed concerns on whether they should disclose their disability on job applications. Interviewee one said she did not realize that her borderline personality disorder would qualify as a disability until she recently saw it on a job application. When asked if she disclosed the disability upon seeing that it would be regarded as one, she answered that she had not because she feels there are no protections if she does disclose. She felt she would be discriminated against in the hiring process. Interviewee one has had significant gaps in employment. Her disability and employment gaps place her in a double bind, described as follows:
Are they going to be less likely to hire me because I have gaps on my resume or because I have a disability? It is like I cannot hide that I have it because I have the gaps in my resume, so I might as well tell them. But that does not make my chances of getting a job any better.
Interviewee two had similar concerns regarding disclosing his disability on job applications, as he also had gaps in employment. He experimented with putting the disability on the application if he did not know what the specifics of the job were or did not know if the position would affect his health negatively. Whether or not he disclosed, he still found difficulty getting hired in his field. Interviewee three also felt that disclosing her disability might give a company a reason to not hire her or keep her around. In her experience, disability is seen as a liability rather than an asset. Her employers in the past have been very harsh and not understanding over small mistakes related to her ADHD and anxiety, leading to her being let go with little warning. Unstable employment has put interviewee three’s survival at stake, leaving her facing potential homelessness if her employer is not compassionate and understanding. She has had a positive experience disclosing to one understanding employer after building trust several months into employment, but most of her experiences with disclosure in the workplace have been negative.
Interviewee four, with the most current stable job situation and the most stable job history out of the four interviewees, felt comfortable disclosing his disability to professors in his doctorate program but kept repeating that it was “too risky” to disclose his disability to his current employer unless he knew they understood dyslexia. In his experience, some think dyslexia is a form of mental retardation. Those working in academia are more likely to know that those with dyslexia are overrepresented as engineers and economists and that dyslexics can excel in many realms.
Interviewee four further felt that if he could prove himself first then he might feel comfortable disclosing his disability, so employers will see that dyslexia does not equal incompetence. Because dyslexia can also impact an individual’s ability to keep up with conversations, interviewee four feels he faces gaps in both written and verbal communications. His social mobility at work is negatively impacted because of these communication gaps, as it makes him come across as not being on board with the ideas of colleagues or the company. Having strong communication and work relationships can be key for a successful work environment for both the company and the individual. Understanding versus judgment of what a person’s limitations are can help mitigate what could be misinterpreted as an employer’s lack of motivation or a cold shoulder towards other employees (Beheshtifar, 2013).
Creating safety for disclosure is critical for both companies and individuals in society. Currently, disclosing a disability to a current or potential employer can put the employee at risk for discrimination, placing their employment and ability to provide for themselves at risk. Though none of our interviewees needed to disclose their disability during their undergraduate degrees, they had the option to disclose to their university’s disability office, which provided a place of safety and understanding. There is no comparable office for the workforce. All four interviewees felt unsafe being open about their disability and would rather try to cover it up than have basic survival needs threatened. This points to a systemic gap that leaves disabled employees at risk, unable to reach their full potential because they feel unsafe disclosing their disability.
Stigma is a crucial puzzle piece in understanding the previous theme of lack of disclosure of disabilities. All four interviewees identified perceived or experienced stigma in their workforce experiences. Several interviewees noted a number of negative attitudes their employers or coworkers had towards them. Interviewee one described feeling like an annoyance or obligation to employers when asking for accommodations if she ever felt comfortable enough to ask at all. Some employers made it evident to her from the beginning that they had clear expectations for employees on what they could or could not do. Not being able to do what was needed resulted in hostility, sometimes to the point of being let go from work because performance metrics were not met. Hostility towards the inability to meet performance standards also led to being yelled at, in the case of interviewee three. In her experience, “they start screaming at you, and then it exacerbates your anxiety, and you’re afraid to make mistakes.” Increased anxiety further impacted performance, creating a negative feedback loop.
When looking at invisible physical disabilities, interviewee two reported mixed experiences with negative attitudes from employers and coworkers. Even in jobs with some level of physical activity, some managers were very understanding of limitations. However, even in situations where management was accommodating, other team members displayed negative attitudes, saying that not assisting in physical tasks at the same level as others were not being a team player. This led to interviewee two often overextending himself, to the point of physical pain for hours after work, in order to avoid criticism from coworkers.
Not all experiences with the attitudes of employers or coworkers were overtly negative. Another common theme was misunderstanding. All interviewees indicated that, on some level, they felt misunderstood by those around them. Interviewee one was fearful that she may be “over-accommodated” by an employer who did not understand the level of work she could handle, leaving her without enough responsibility and leading to boredom and lack of fulfillment. Several interviewees with neurological conditions described a specific type of misunderstanding they experienced. Those with neurological conditions may have cognitive processes and work styles or strengths that differ greatly from the general population.
Interviewees three and four expressed fear that, instead of understanding that their brain works differently, employers will only see weaknesses and underestimate their capacity to perform. Often, there are only one or two aspects of a job that are challenging to our interviewees, but they can excel in other areas. This was illustrated in a quote from interviewee four, “If [my employer] understood dyslexia, they wouldn’t have me do things that take me half the day.” If his dyslexia was understood by employers, he could be assigned the tasks at which he excels. Interviewee four categorized his dyslexia as both a disability and a gift. Lack of employer understanding of disability leads to employees being assigned duties where they struggle to succeed, rather than being assigned tasks where they thrive, placing disabled employees at a disadvantage compared to their peers.
A subcategory of misunderstanding is self-misunderstanding. Three of the four interviewees recalled experiences of not realizing that they had a condition that impacted their functioning. Receiving a diagnosis brought some interviewees a sense of understanding that helped them to deconstruct the negative perceptions they held against themselves. Interviewee two discussed his struggles before diagnosis:
I didn’t know there was anything wrong with me. … I’ve always lived in the country, and there’s a real expectation when you’re young and male that you be very physical and very active. And my mother just could not understand why, even when I’d be in really good shape, why I would turn pale, and I would take so long to recover after a run or something. … It was really an injury to my self-esteem to think, “wow, everybody else is tough, and I’m a weenie.”
The diagnosis helped interviewees to understand and validate their own experiences. Realizing that her condition was recognized by professionals as something that could impair function, rather than simply being a personal failing, helped interviewee three calm her insecurities that she had a condition that could be assisted through medication. The self-understanding of her own condition, brought on by neurologic diagnosis, helped her realize that she could still work towards achieving more stable and fulfilling employment because “nothing else is wrong with [her].”
Much of the stigma, negative attitudes, and misunderstanding noted by interviewees revolved around ableist language and stereotypes of disabled people, particularly those with cognitive or psychological disabilities. Interviewees one and three repeatedly noted fear that they would be perceived as “stupid” or an “idiot”, both derogatory terms that can be targeted specifically against those with neurological disabilities. Interviewee four expressed a similar fear, repeatedly saying throughout the interview that he often did not disclose his dyslexia because people perceived it as “mental retardation”, an outdated and stigmatizing term used for those with intellectual disabilities. This language can perpetuate casual ableism by subjugating people with certain disabilities. Not only was it used against interviewees, but it was used by interviewees when they spoke about their own competence, such as when interviewee three discussed her strengths as proof that she is “not an idiot”. The nature of casual ableism is such that, even when an individual has a history of experience with ableist discrimination, they may still unconsciously say or do things that perpetuate existing ableism in society.
Socioeconomic Status and Family Support
Socioeconomic status is a contributor to the employment decisions and needs of our interviewees. Lack of stable employment can make it difficult to afford basic needs such as rent, food, or medical costs. Without a stable and well-paying job, our interviewees have had to rely on either support from family members or taking jobs they were overqualified for to make sure they could afford to survive. If unable to fall back on familial support or maintain employment anywhere, the only option left may be remaining unemployed and trying to get on SSDI in order to have health insurance and a small amount of money to afford rent and food.
Medical costs are a particularly pressing concern for many disabled people. Three of our interviewees noted that there were therapies or medications that could lessen the negative effects of their disability, but these treatments are not always financially accessible. Unstable employment can often mean unstable health insurance coverage. Interviewees one, two, and three have all recently experienced lack of adequate health insurance to cover the medical care they need because they have primarily been working part-time or temporary jobs in the past several years, which do not provide health insurance coverage. All three have found themselves relying on relatives or significant others to assist with medical and other finances since they are unable to fully cover these costs by themselves.
While the Affordable Care Act (ACA) is meant to provide health insurance for all, interviewee one noted difficulties with her unstable employment, as the insurance she receives through the ACA while unemployed covers many medical services she needs, but if she gets hired for a position with health benefits, their insurance does not always offer the same coverage. Navigating the American health insurance system and moving between employer-provided or ACA plans is confusing and difficult in her experiences, particularly when she has difficulty maintaining a job and may repeatedly experience gaps in her healthcare coverage as she moves in and out of jobs. While she entered the workforce over a decade ago with excitement to begin her professional career, interviewee one now feels burnt out because she faces repeated difficulties with interpersonal work relationships and meeting job performance metrics due to her disabilities, leading to her being fired or quitting. She has not had a full-time job in three years and relies primarily on her father for financial support, describing herself as now being in a state of “learned helplessness.” It has been easier to rely on family and the ACA for meeting financial/medical needs when it is so difficult to be hired and she may not even remain employed for very long. With the COVID-19 pandemic, interviewee one’s father is now facing financial struggles as well, leaving interviewee one unsure how she will provide for herself without family to rely on.
Interviewee two is receiving financial support from both a spouse and from his in-laws. There is one medication that can help lessen the effects of his idiopathic urticaria and make physical activity easier for him. If he had regular access to this medication, it could help him participate more at certain jobs with physical components, but the medication is very expensive without insurance. After being laid off from a job several years ago, interviewee two has struggled to find any other jobs in his field, which has led him to underemployment, being uninsured, and having large gaps in his resume. He started graduate school in an effort to improve his employment prospects but is only able to afford schooling due to assistance from his in-laws.
Interviewee three struggled with college on her first attempt to complete an undergraduate degree and lacked familial support, resulting in financial instability and stress that ultimately caused her to leave school. In her second attempt to finish her undergraduate degree, she had more family support, which offered more financial stability, including a stable place to live. She brought her GPA up from 1.9 to 3.64 during this time and was able to graduate with her bachelor’s degree. Her primary financial support during this time was from her father, who was financially well-off.
After graduation, she cut her father out of her life for personal reasons. Here, she was able to see the socioeconomic gap of family support versus non-family support with an invisible and, at the time, undiagnosed disability. Having no financial safety net in her family made her ADHD and anxiety worse due to stress, making it more difficult for her to perform well at jobs. She spent time being self-employed or working temporary jobs to make ends meet as she also tried to find a job related to her degree, but was frequently let go from jobs and could not maintain stable professional employment. Eventually, she was hired by the Deseret Industries, which provided her a sense of financial and emotional stability, even though she was underemployed in her position there. During this time of underemployment, interviewee three had other family members step in to provide financial support that helped her get a professional diagnosis of her disabilities. The diagnosis led to her getting medication and treatment, which helped improve her work performance, and eventually, she was able to move to other job opportunities and begin graduate school.
Having family support and adequate health coverage has been vital to our interviewees to maintain their livelihoods. Disabled people without family support may struggle to find ways to support themselves if they cannot retain employment. This can further perpetuate the socioeconomic gaps between disabled and non-disabled individuals (APA, 2010). The ACA has some use in providing health insurance to certain individuals, but there is no all-encompassing legislation that provides financial support to disabled individuals to support them in acquiring and maintaining employment and medical care.
As previously stated, the ADA is designed to legally prohibit discrimination against disabled individuals on the basis of their disability. In theory, the ADA provides protections and accommodations to help disabled workers, but interviewees were a bit more skeptical of its usefulness in their own lives. The first problem, as already discussed, is the issue of disclosure of disability. In order for workers to be protected both during the hiring process and once they are in the workplace, they must disclose their condition to their employer before they can receive accommodations. However, even if a disability is disclosed, this does not provide adequate protection for disabled workers in the eyes of several of the interviewees. Interviewees one and three both felt that hiring discrimination was inevitable, even with the ADA. Interviewee one felt that employers usually had no incentive to hire disabled people, instead of looking only at what candidate could best fulfill the position’s responsibilities. Interviewee three echoed that sentiment, asking why employers would want to hire someone with a disability over someone not disabled.
During the job interviewing process, employers are not allowed to discriminate against you based on your disability per the ADA. However, proving that you did not get hired because of your disability is difficult, because employers usually do not give specific reasons for not hiring a candidate. Interviewee two detailed his frustrations with the job application process after spending several years unemployed, applying to numerous positions. Sometimes he would disclose his disability in the application, other times he would withhold that information. Regardless, he encountered the same roadblock, stating, “I can’t prove why they didn’t give me an interview. … A lot of discrimination that happens with applications and hiring, they know that if they say certain things they’ll be incriminating themselves. They’ll say, ‘Wasn’t a good fit’ or ‘just didn’t jive with the culture.’” Proving that an employer engaged in hiring discrimination against someone with a disability, violating the ADA, is near impossible unless the employer incriminates themselves.
The ADA is not the only applicable policy for many disabled workers. The Family and Medical Leave Act (FMLA) can also provide leave for employees who need to take time off for medical purposes. Interviewees two and three each had times in their careers where they wanted to utilize FMLA but found they were not covered because employees are not eligible for FMLA leave until they have been employed with a company for at least one year and worked 1,250 hours during that period. Employees who frequently change jobs, work as temps, or only work part-time, such as several of the interviewees, have not qualified for FMLA coverage at many of the jobs they have held. Interviewee two noted an experience where he was hired for a job that easily accommodated his disability after a spell of unemployment. Several months after being hired, he faced serious medical issues unrelated to his disability that required him to take several weeks off work. Despite having thorough medical documentation of why he missed work, he ended up being let go from his position because his leave was not protected under FMLA and the employer had no other policies in place to cover prolonged sick leave.
For disabled workers who struggle to stay employed, another option they may consider is applying for Social Security Disability Insurance (SSDI) to make sure they have some income to support themselves. This process poses its own set of difficulties. Even if someone is diagnosed with a medical condition, that does not necessarily mean they qualify for SSDI. The application process requires thorough documentation and effort on the part of the worker to convince the government they cannot work due to their disability. Interviewees one and two both describe their physical conditions as “excruciating” or “terrible” in certain circumstances. Despite that, neither think they could qualify for disability because they do not meet the legal definition or have paperwork from a doctor stating they cannot work. They feel pressured to continue trying other avenues to make ends meet, either through continuing to apply to numerous jobs in the hopes that one will work out, or simply relying on family for support rather than the government.
All four interviewees have encountered struggles in the work environment that they did not encounter during their undergraduate degree. None of them felt the accommodations their university’s disability office had to offer were even necessary. Now that they do need accommodations to succeed, there is no central office to go to for assistance. The workforce lacks the safety net that university disability offices supply, where you can reach out to someone who will be understanding and help you navigate institutional settings to achieve success. Lack of accommodations has negatively impacted workplace performance and job retention for all interviewees. Interviewee one was particularly frustrated about how difficult it was for her to maintain a job without accommodations available, stating, “If my job is making me more sick than I already am, then I don’t want that in my life.” Failing to provide accommodations may lead to workers electing to simply leave the workforce and go onto SSDI, because their previous attempts at contributing to the labor force were harmful to their own wellbeing.
When interviewees were asked about what accommodations they had previously received or wished they had, the most common answer was not a specific arrangement or scenario, but rather something more basic that does not fall under the ADA: understanding and validation. If employers worked harder to understand the challenges their disabled employees have, as well as the strengths they bring to the company, it would be easier for employees to be open about their needs and work in the way best suited to them. Interviewee one proposed workplaces could create access to someone within the company who provided such understanding and validation. She envisioned this as a person who has a position within management or HR and has training in therapy, social work, mediation, or some combination of such. This person could serve as a resource who understood the workplace dynamic and could provide neutral assistance for employees to develop their skills and strategies for success. This resource person could also advocate on behalf of the employee to educate other employees about disability or help disabled employees with acquiring accommodations when needed. Interviewee one felt that, if she had such a resource, she would have an easier time with retaining employment, rather than being repeatedly fired or quitting from jobs. This resource could help interviewee one when she is unable to complete tasks on time or maintain healthy workplace relationships, both issues she has faced for years in the workforce due to her psychological conditions.
For interviewees one and two, a few more specific accommodations for their physical conditions were suggested. Interviewee one expressed a need to be able to do her work while sitting or even lying down to alleviate pain. She also stated a desire to have time during the workday for rest or self-care if needed, saying that her best job was one where she was able to take a short nap part-way through the day, rather than working eight hours without stopping. Interviewee two had a similar request for rest if he was at a job that was physically demanding. Better than rest, for him, was having the option to work from home, as work from home jobs allow him to dress in clothing that does not aggravate his physical condition as much. When it comes to work tasks and the way information is presented to employees, interviewees three and four had suggestions for what would be most useful for them. Interviewee three wanted employers to offer more visual instructions, as her auditory processing disorder made it difficult to retain verbal instructions. Interviewee four, by contrast, wanted fewer written documents or assignments, because he takes much longer to do projects that involve reading as opposed to more quantitative and spatially-focused projects.
Two of the interviewees have family histories of disability and employment difficulties. Interviewee one mentioned that this was something that had gone on for a few generations on her mother’s side of the family. Both her mother and her grandmother ended up disabled and unemployed, living off of either SSDI or other family money. She expressed fears that, with her various medical conditions and inability to maintain stable employment, she will follow in the footsteps of the previous women in her family. Without systemic support from employers, she is unsure if she will ever be able to succeed in the workforce. Interviewee three’s mother has also faced employment difficulties due to her ADHD. While, like her daughter, she was academically successful, she was unable to maintain steady employment. Eventually, she developed fibromyalgia and felt she had no other choice but to apply for SSDI. Interviewee three believes her mother could have contributed much more to society, but the lack of acceptance and accommodations offered to her resulted in her being pigeonholed to unemployment so she does not lose her SSDI funding.
No interviewees reported specific difficulties with maintaining platonic personal relationships, but interviewees one and three both reported difficulties with romantic ventures. Both women said they lack confidence in dating due to their unstable employment. Each woman is in her early- to mid-thirties and has never been married, though both reported desiring marriage and starting a family. As quoted by interviewee three:
Being on disability [SSDI] makes you undateable. I saw my mom end up on it and that dating was no longer an option for her. Yes, you have your basic needs met. Food and shelter. But part of happiness is being able to find someone you love, and it’s idealistic to think the right person will accept you as an unemployed person. It’s part of why I’ve fought so hard.
Interviewee three sheds light on the reaching impacts of unstable employment due to disability. While she did not explicitly mention it, she alludes to Maslow’s hierarchy of needs (1943). Someone who cannot find employment due to disability can apply for SSDI to meet basic physiological and safety needs, but may still struggle with higher psychological and self-fulfillment needs. Interviewee one had similar frustrations, saying she both lacks confidence due to not having a “fulfilling career” and lacks the money for consistent healthcare so she can feel physically well enough to do things she wants with her life, such as dating.
Our findings shed light on gaps in the transition out of college and into the workforce for those with invisible disabilities. It raised questions on the effectiveness of current policy and practice regarding disability in the workforce. There are several steps that can be taken to create a more equitable and inclusive workforce, as indicated by our interviewees. We have outlined several suggestions for future policy or practice changes, including hiring incentivization, competency training, and employee resources, three options that provide different possible ways to allocate resources. Our final suggestion is an overall cultural shift in society. This cultural shift cannot be accomplished overnight but might be needed for a real permanent change to happen. Last, we address the limitations to this study that can be expanded upon in future research.
Several interviewees were skeptical that employers would choose to hire disabled people over non-disabled people if given the choice. Our findings of unemployment and underemployment of those with disabilities due to hiring and job retention difficulties is consistent with the research of Maroto and Pettinicchio (2015). One possible solution to help balance out the objectives of a company of maximizing productivity and profit while helping those with invisible disabilities succeed in the workforce would be to create new hiring and retention incentives. The IRS offers tax credits to businesses that hire individuals with qualifying circumstances, often related to their disability status with SSDI. Expanding qualifications to encapsulate more individuals who may have difficulty finding stable employment but do not have documented disability status with SSDI may be an option to explore when looking to increase employment rates. Other research could be done specifically into these IRS tax credits — are all businesses with qualified employees utilizing them? Are there barriers or other factors that keep businesses from hiring and retaining disabled employees that could be addressed on an administrative level?
Funding to employers could also be allocated not only for hiring and retaining disabled workers but also for training management and/or HR to be more competent and understanding regarding disability. This measure could increase employment rates and satisfaction among the disabled population. Providing increased training on disability can reduce stigma (Friedman & Owen, 2017; Santuzzi et al., 2014) and remove the burden of education and self-advocacy from disabled people (Kattari, Olzman, & Hanna, 2018). Extending competency training to other non-disabled employees could help further reduce the stigma against disability in the workplace. Creating multi-pronged strategies to increase understanding of disability amongst both managers and employees can create a more hospitable work environment for disabled employees.
Another implication is the need for increased accessibility to resources for workers with disabilities. These resources can range from access to healthcare, funding or assistance to become self-employed, and job coaching to help acquire and retain employment. The need for these types of resources is established by multiple researchers, including Schur et al. (2017 and Cook (2006). We must supply disabled workers with the resources to increase self-sufficiency and self-efficacy while they establish themselves in the workforce. Train disabled workers in the skills they need to seek higher-quality employment that meets their individual strengths, while also giving them financial and social support to fall back on when they are unemployed. Making available the resources to meet basic physiological and safety needs, regardless of employment status, will let disabled people devote more energy to finding fulfillment in employment, rather than simply trying to survive.
The most radical and long-term implication is the need for a cultural shift in the way America conceives work practices, structures, and productivity. Current conceptions on work productivity emphasize the 40-hour workweek and many industries favor one specific process to accomplish tasks. For disabled people, they may not be able to physically or mentally function within the narrow parameters set forth for them by this system. Each individual will have different aptitudes or ways that they approach work. Existing workplace practices were built primarily on the work of non-disabled employees. This means disabled employees must assimilate or face criticism and possible unemployment. We must begin to shift cultural norms on what work and productivity could look like for a broader variety of individuals. This will take an incrementalist approach, but it can begin by uplifting the voices and experiences of those with a disability on the margins of society, who have been denied access to contribute to the workforce in ways that are meaningful and productive for them.
There are several notable study limitations. First, given the small sample size, our study lacks generalizability. We selected only four participants through convenience sampling, which cannot even begin to represent the entire breadth and depth of the experiences of disabled workers. There are numerous invisible disabilities that can affect people, and numerous lived experiences to go alongside that. This study can serve only to give us a small snapshot of a select few experiences of navigating the transition from higher education into the workforce while disabled. Qualitative research methods are also limited in that they allow for a measure of researcher bias. Both researchers have their own experiences and beliefs regarding this research topic. While we aimed to conduct interviews and analyze data from an objective standpoint whenever possible, it is inevitable that some level of personal bias was involved in the research process.
Despite these limitations, our research has certain elements of generalizability due to themes that showed up with varied disabilities among all four interviewees. The main themes identified in our findings were all topics found in other existing literature which means our findings are consistent with previous research of different disabled populations. While specific experiences of our interviewees may not be generalizable, the fact that they face stigma in the workplace or struggle with accessing care related to their disability is something experienced more broadly by many disabled people. Our calls for greater understanding of disability in the workplace is not something that would solely benefit our four participants. Employers expanding their notions of how tasks should be done or what productivity looks like could help not only disabled employees but non-disabled employees as well. Certainly, there is additional research required on the topic of invisible disabilities and the transition from school into the workforce to better understand and explore the topics we identified, but our findings do offer a measure of generalizability.
Employment disparities among those with disabilities have existed historically and continue to worsen even after the passage of the ADA in 1990. Though the ADA prohibits workplace discrimination against disabled people, ableist discrimination is still perpetuated in society. People with invisible disabilities experience discrimination and challenges unique from those with visible disabilities and may garner additional stigma because their disability is not readily apparent to the eye. We explored the experiences and challenges of four individuals with invisible disabilities who graduated with a bachelor’s degree and then transitioned into the workforce. Using semi-structured interviews, we sought to answer the following questions: What barriers and other experiences do college graduates with invisible disabilities face in seeking employment and workplace accommodations? How do these experiences impact other aspects of their lives?
Through constant comparison analysis, we identified several common themes across the four interviews conducted. The main themes we identified were employment stability, aptitudes, disclosure of disability, stigma, socioeconomic status, family, legal protections, accommodations, disability across generations, and personal relationships. The majority of our participants experienced unstable employment and long periods of unemployment. Difficulties in acquiring or retaining employment were attributed to a number of causes. Most employers view disabilities solely as a weakness, rather than considering the unique strengths and aptitudes employees may have because of their disability.
Participants expressed fear or concern at disclosing their disability in the workplace, because that disclosure may lead to discrimination or stigma from both employers and coworkers. If people were more understanding of disability, it would be easier to disclose a disability and receive needed accommodations. Lack of stable employment poses financial difficulties, which can perpetuate socioeconomic disparities for disabled people. The family was a useful source of financial support for our participants, particularly when it came to affording medical costs associated with disability. Understanding and navigating the legal protections meant to assist disabled people is often difficult and many do not adequately extend to part-time or temporary workers. Finally, a lack of stability and fulfillment in the workplace translated to difficulty in personal romantic relationships for several participants, showing that employment issues carry over to multiple areas of a person’s life.
These findings led to several suggestions for future action in policy and practice to create a more equitable workforce. Our four suggestions were: hiring incentivization, competency training, employee resources, and a cultural shift. There are already tax incentives for businesses to hire disabled employees, but we propose expanding incentives and assessing the usage of current incentives to see if and how they impact the hiring and retention of disabled workers. Competency training would help increase understanding of disability amongst both managers and non-disabled workers to create a more hospitable work environment for disabled employees. Employee resources would give disabled people additional training and support throughout the entire unemployment, application, hiring, and working process. Lastly, a cultural shift proposes a broader societal paradigm shift in conceptions of what work and productivity should look like. Disabled people are capable of functioning in the modern workplace but may not perform well within the rigid confines of existing workplace procedures and the 40-hour workweek. By taking an incremental approach and uplifting the voices and experiences of disabled people, we may unlock a new wealth of potential in those who have been previously denied access to full workforce participation.
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