This article discusses disability inclusion in the workplace. It identifies barriers and makes recommendations to help meet employment needs of people with disabilities, utilizing lupus as an example. A convergent mixed method design study examined the workplace experiences and needs of individuals with lupus. Availability sampling yielded 1,776 participants from across the United States. The results revealed 69% of the respondents reported that lupus symptoms had a negative impact on their employment and 48% of the participants reported needing help or accommodations in the workplace. An inductive thematic content analysis with an inter-coder agreement ranging from 71% to 73% yielded 4 themes encompassing issues related to productivity, interpersonal relationship in the workplace, and adjustments in work responsibilities and work environment, respectively. The results suggest that training programs about the American with Disability Act may have a positive impact on organizational functioning. Employers have a responsibility to maintain a flexible work environment whenever possible to address variability in employees' needs. Employers and employees should engage in ongoing discussions that seek to identify accommodations that will help employees with disabilities meet their workplace responsibilities and to enhance their contribution to the organization. Managers and administrators are encouraged to create an environment that values a diverse workforce, including persons with disabilities.
This article discusses disability inclusion in the workplace. It identifies barriers, and makes recommendations, to help meet employment needs of people with disabilities, specifically lupus. Disability inclusion is a significant civil rights issue (Kennedy and DiNapoli, 2019) and contributes to the long-term success of organizations by creating a work environment that incorporates "equality, diversity and inclusiveness" (Kennedy and DiNapoli, 2019, para. 2) to increase productivity and innovation. Employment disparities for people with disabilities lead to lower income, decreased job security, and poorer "quality of work life" (Schur, et al., 2017, p. 482). Organizational environments can influence work participation (Vijayasingham, Jogulu, and Allotey, 2018). It is important to integrate the value of care into the climate of organizations, to enrich the context of chronic illness experience in the workforce and to guide responses to the needs of employees with disabilities. A shared set of organizational values and ethics should be integrated into organizational caregiving to "positively influence and enrich chronic illness experiences in work organizations" (Vijayasingham et al., 2018, p. 30). This view acknowledges that organizations have a distinct role in creating positive and supportive experiences as well as "sustainable work platforms for their employees with chronic illness" (Vijayasingham et al., 2018, p. 39). However, this can be a challenging task since the nature of accommodations vary greatly among individuals with disabilities. Thus, an organizational culture that promotes a safe environment in which to discuss accommodations is key. The purpose of this article is to describe issues faced by people with disabilities in the workplace.
The American with Disabilities Act (ADA)
The American with Disabilities Act (ADA) of 1990 should ideally protect the civil rights of people with disabilities (Ostrander, 2014, p. 298). The amended ADA (2008) defines disability as a physical or mental impairment, which includes difficulties in concentration and thinking that substantially limits one or more major life activities of the individual, having a record of such an impairment or being regarded as having such an impairment (Knapp, 2013). The ADA attempted to provide a core definition of disability and clarify key terms within the legislation, particularly because of employment-based lawsuits. The 2008 amendment calls for a broad interpretation of disability (Concannon, 2012). Currently, this amendment is closer to the definition used by the U.S. Social Security Administration, as both "focus on one's ability to perform work activities" (Ostrander, 2014, p. 298).
Individuals with disabilities should be aware of their responsibilities under the law. The 2008 ADA requires an individual to be able to perform the "essential functions" of a job, with or without reasonable accommodations (Knapp, 2013, p. 731). This can act as a gatekeeper for the courts to continue blocking plaintiffs from successfully winning employment discrimination suits under the ADA (Knapp, 2013, p. 731). Leeds and Richards (2008) note potential employees with a disability must inform the employer of the necessary accommodation to complete job tasks. If the employee fails at the job prior to informing the employer of a necessary accommodation, the employer may fire the employee for failure to complete the job tasks.
Employers' perceptions about the nature, severity, and cause of the type of disability play a role in their intention to provide accommodations (Carpenter & Paetzold, 2013). Effective workplace accommodations should refer to the collaborative process between employers and employees to tailor the accommodations to the unique needs of each employee (Knapp, 2013).
Defining Disabilities
Identifying the needs of people with disabilities is complex. Perspectives on what constitutes the term disability vary. There are many different legislative, cultural, social and theoretical definitions of the term disability, suggesting the label is fluid and definitions should continue to evolve. Organizations should consider broadening their understanding of the term in order to promote better inclusion in the workplace. Below we offer a brief summary of additional perspectives on disability beyond criteria noted in the ADA (2008).
The World Health Organization (WHO, 2011) asserts that in recent years there has been a shift in how people view disability. Instead of considering a medical or individual model that reflects social and physical barriers - impairment or functional limitations - a newer tactic views disability through a structural or social model, recognizing the key relationship between people and their environment. The latter views individuals as disabled by society rather than because of their bodies (WHO, 2011, p. 4). The World Bank suggests an interactional view of disability that combines both of these models and is mostly used today (Bickenbach, Posarac, Cieza & Kostanjsek, 2015). Accordingly, they explain:
"In the last decade or so these debates have resolved in favor of the consensus view that disability is a complex phenomenon that involves both biomedical features of a person's body or mind and the impact of the overall, physical and social, environmental context in which the person carries out his or her life" (Bickenbach, et al., 2015, p x).
Understanding the impact disability has on an individual's life is further complicated when this disability is invisible, or not evident to others (Vickers, 1997). Beatty and Kirby (2006) explain that for people with invisible disabilities, there is an added challenge in the workplace, namely the dilemma of whether to disclose the disability. While disclosure is necessary for receiving accommodations, it can lead to stigmatization. Prince (2017) explains sharing with one's employer that one needs an accommodation for an invisible disability may ultimately be in the employee's best interest, but this disclosure may be risky for the individual. Not sharing may eliminate discriminatory or stereotypical responses faced by the individual but ultimately leaves the employee without an opportunity to access accommodations that can improve the work experience of the employee and ultimately benefit the organization.
Given the multiple perspectives on defining disability, we use relativism to understand disability, recognizing there are no absolute definitions and that there are subjective factors that influence society's understanding of disability and how it chooses to address it.
Inclusion Challenges in the Workplace
Even with increasing awareness regarding the culture of inclusion in the workplace, individuals with one or more disabilities continue to face challenges. Lindsay, Leck, Shen, Cagliostro and Stinson (2019) found that employers recognized individuals with disabilities could be innovative and productive. Thus, hiring people with disabilities can enhance employers' respective businesses by fostering a culture of open mindedness. Concomitantly, employers reported not knowing how to work with this population. Employers reported providing training to their staff helped to increase awareness and comfort level when interacting with a co-worker who has a disability. However, this did not necessarily help to increase actual inclusion. On the other hand, strategies to change the workplace culture and minimize bias by encouraging employees to focus on abilities rather than disabilities helped to increase inclusion. Overall, Lindsay et al., (2019) found employers who displayed "disability confidence" (p. 49) also expressed valuing equity and diversity. Emens (2008) explains most literature generally assumes that workplace accommodations under the ADA only benefit employees with disabilities, and imposes costs on employers, yet it fails to recognize ADA accommodations also provide benefits to third parties such as co-workers.
Organizations need to navigate strategies to accommodate employees while working within organizational constraints such as budget and human resources expertise. Organizations vary in their readiness to accommodate the needs of employees with disabilities. Waters and Johanson (2001) found human resource staff in larger companies reported greater familiarity with the ADA and a better understanding of key concepts such as "disability" and "reasonable accommodations" (p. 50). On the other hand, smaller organizations reported access to fewer ADA-related resources and training opportunities for their staff (p. 52). Kaye, Jans, and Jones (2011) explain that employers' lack of awareness of disability and accommodations is a major barrier for hiring employees with disabilities. Organizations are also wary of the cost of implementing accommodations and potential legal liability (Jones, 2011; Shinall, 2020). Kettner (2013) recommends that agency administrators have access to, and consult with, experts in the human resource field who are familiar with federal and state laws, particularly those with legal implications that may result in penalties. A well-developed understanding of both the letter of the law and the spirit of the law protects vulnerable populations and organizations. Kaye et al., (2011) found that strategies to help both employees with disabilities as well as the companies that hire them should encompass both organizational level practices and policy approaches. The former should include better training, organization-wide systems for handling requests for accommodations, and written guidelines for dealing with disability accommodations and non-discrimination practices (p. 532). Policies to help companies hire and retain employees with disabilities should include government subsidies to cover the cost of accommodations, cost-free consultation to resolve disability and accommodation issues in the company, and tax breaks for companies that hire and train individuals with disabilities (Kaye et al., 2011, p. 532; Shinall, 2020). Making reasonable accommodations present a challenge to human resource managers and administrators, particularly as organizations seek to diversify their workforce. This is especially important when accommodating employees with a disease such as lupus. These employees may require varying accommodations due to multi-system involvement, with symptoms that may not be visible.
Overview of Lupus
Lupus is an autoimmune disease in which the body forms antibodies that attack the healthy tissues of the body and organs contrary to its own protective function. It is not infectious or cancerous (Giffords, 2003). GfK Roper (2012), a group that specializes in data collection and analysis, estimates that 1.5 million Americans, and at least 5 million people worldwide, have a form of lupus. The Lupus Foundation of America (2020) estimates that more than 16,000 Americans develop lupus each year. It is more common than better-known disorders such as leukemia, muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
The American College of Rheumatology ([ACR] 2020) explains systemic lupus erythematosus, referred to as SLE or lupus, is a chronic inflammatory disease that may affect individuals across several systems. Individuals may experience problems with their skin, joints, kidney, heart, lungs, nervous system, blood and other organs or systems. The disease affects individuals differently and ranges from mild to serious and frequently waxes and wanes. The term "flare" is used when it is active and "remission" when it is quiet (ACR, 2020; Giffords, 2003). Gender plays a distinct role. Ninety percent of people with lupus are women (Pons-Estel, Alarcón, Scofield, Reinlib & Cooper, 2010). The disease is most common in people between the ages of 15-44 with people of African or Asian backgrounds affected approximately 2 to 3 times more than Caucasians (Pons-Estel et al., 2010). People with lupus can face impairments that affect every facet of their lives including in the workplace. While some may have outward indicators such as a rash or difficulty while ambulating, others may have invisible symptoms such as fatigue or joint pain. Therefore, employees with an invisible disability, such as lupus, are at a disadvantage obtaining accommodations that enable them to maintain a productive work life. Similarly, this disadvantage applies to employees who choose not to disclose their disability for fear of stigmatization (Prince, 2017).
Lupus and Work
Carter, Barr and Clarke (2016) report the global average annual direct and indirect health care costs of patients with lupus can be as high as $50,000, and the mean annual productivity costs (lost hours of productive work) for participants of employment age was between $1,252 and $20,046. In the US, Panopalis et al., (2008) estimated the average annual direct health care costs of patients with lupus was $12,643 (in 2004 US dollars) and mean annual productivity costs for participants of employment age was $8,659. Thus, mean annual total costs (combining direct costs and productivity costs for people of employment age) was $20,924.
GfK Roper (2012) notes two of three patients with lupus reported a complete or partial loss of their income because they were no longer able to work full-time. The disease has temporarily disabled one in three patients with lupus, and one in four receive disability payments.
Lupus significantly and negatively affects some individuals' employment experience. In the US, less than 50% of people with lupus are able to work full time (Seawell & Danoff-Burg, 2004). Yellin et al., (2009) report that overall productivity among persons with SLE with an employment history declined by a third between the year of diagnosis and the 13th year post diagnosis. The probability of work loss among employees with SLE increased sharply at age 44 or older. Lower age, higher levels of cognitive and physical functioning, and higher levels of cognitive job demands were associated with a lower risk of work loss. Older age, never having been married, and lower cognitive and physical functioning were also associated with work loss. Approximately a third of the population with lupus report they are no longer able to work (Giffords & Calderon, 2014; Schemding & Schneider, 2013).
Accommodating the Needs of Individuals with Lupus in the Workplace
Many individuals with lupus report needing help to maintain a satisfactory job performance (Danoff-Burg & Friedberg, 2009). Varekamp & Van Dijk (2010) report the most common accommodations preferred by employees with lupus were increased autonomy in planning work, alternative or fewer working hours, eliminating certain tasks, allowing for a slower work pace, obtaining assistance from others, and working from home. Other accommodations involved special equipment such as ergonomic desk and chair. Knapp (2013) argues for a mandatory interactive process between the employer and the employee for each individualized case. This process involves analyzing the job and its functions; consulting with individual employees with one or more disabilities as to what specific job-related limitations they may have; how the limitations can be overcome by reasonable accommodations; identifying possible accommodations; considering the preference of the employees and selecting and instituting the most appropriate accommodations for both parties. The Job Accommodation Network (2019) suggests accommodations be geared to address the individual needs of employees with lupus. For example, to address difficulties performing work-related functions such as mobility challenges, accommodations can include allowing employees to work from home. To accommodate employees who experience decreased stamina and frequent fatigue, organizations can institute a flexible work schedule. Ergonomic workstations design can accommodate employees who experience fine motor impairments whereas providing parking close to the work site or installing automatic door openers can accommodate employees with gross motor impairment. Individuals with lupus often exhibit sensitivity to UV light as well as to temperature (Raynaud's syndrome). Beneficial adjustments to the physical work environment can include natural lighting and providing an office with separate temperature control. Additionally, modifying task demands such as minimizing outdoor activities may help meet staff needs. The workplace can accommodate planning challenges by providing technology apps for time management and task organization. Disability awareness and etiquette training are also important to help accommodate the needs of individuals with lupus in the workplace (The Job Accommodation Network, 2019, pp. 4-16).
Kettner (2013) suggests that careful human resource planning should recognize both the needs of the organization and its staff to promote organizational excellence. Relatedly, Varekamp and Van Dijk (2010) found that accommodations were seldom an issue, but participants reported more problems interacting with colleagues or supervisors. This indicates the need for social support and cultural sensitivity training for colleagues/employers. To address this challenge, organizations can develop an in-service training curriculum that helps employees and administrators to understand the basic characteristics of its staff and to promote cultural competence (Kettner, 2013).
The Current Study
This study explores the experiences of individuals with lupus in order to gain a deeper understanding of their self-reported challenges and needs in the workplace. This knowledge can help organizations to use their resources effectively as they strive to create a work environment that adequately addresses the needs of employees. Information from this study can help individuals with lupus gain a better understanding of their rights in the workplace. Accordingly, we explore factors that may promote disability inclusion in the workplace. The following research question guided the study: What work experiences do individuals with lupus report?
Method
Participants
The target population was comprised of individuals diagnosed with lupus who were recruited with the help of the Lupus Alliance of America (LAA,), a national membership organization whose mission is to improve the lives of those living with lupus. Availability sampling within this population yielded 1,776 participants, the majority of whom were females (97%) diagnosed with lupus. On average, participants were 45 years-old and the average age at time of diagnosis was 36 years-old. While most of the participants live in New York State (28.06%) and in Michigan (10.33%), all 50 states are represented in the sample. More than two thirds of the participants reported acquiring post-secondary education, but less than 50% reported they were currently working and only 32% of the participants reported working full time. About 46% of the participants reported an annual household income of less than $50,000, which is below the reported median (DeNavas-Walt, Proctor & Smith, 2011), whereas 35% of the participants reported an annual household income ranging between $50,000 and $99,000. The remaining participants reported an annual household income exceeding $100,000. Most participants (60%) reported relying on supplemental financial support other than employment, such as government programs, family and friends, and nonprofit organizations or religious institutions. See Table 1 for further information about the participants.
| Variable | ||
|---|---|---|
| Age | Mean | Standard Deviation |
| At the time of the study | 45 | 14.03 |
| At the time of the diagnosis | 34 | 12.57 |
| Race | Percent | |
| White | 86 | |
| Black | 10 | |
| American Indian or Alaskan Native | 3 | |
| Asian | 2.43 | |
| Other | 2.26 | |
| Highest Education Level | Percent | |
| Less than a high school diploma | 1.03 | |
| High School diploma | 24.93 | |
| Technical training without a degree | 10.93 | |
| Associate degree | 21.69 | |
| Baccalaureate degree | 23.25 | |
| Graduate degree | 15.79 | |
| Work Status | Percent | |
| Working full-time | 32 | |
| Working part-time | 13 | |
| Unable to work due to lupus | 36 | |
| Earned Income | Percent | |
| Annual income <$50,000 | 47 | |
| Annual income >$100,000 | 20 | |
| Supplemental (Unearned) Income | Percent | |
| Social Security Disability | 22.07 | |
| Supplemental Security Income | 3.70 | |
| Friends and family | 24.33 | |
| Nonprofit organizations or religious institutions | 1.80 | |
| Government sponsored benefits (e.g., SNAP) | 7.72 | |
| None | 40.38 | |
Procedure
After receiving Institutional Review Board approval, a federal research requirement protecting the rights of human subjects, an announcement of the study appeared in the newsletters of the [organization] and various lupus organizations across the country. Hard copies announcements were also distributed in treating physicians' offices primarily in New York State and Michigan, in order to recruit participants who have no access to the internet or who are not members of the organization. The link to the online version of the survey (administered via StudentVoice, now Campus Labs) became available to participants in the newsletter announcement. An identical announcement of the study and survey, in a hard copy format, along with a self-addressed (to the university address of the primary investigators) pre-paid envelope, were available in treating physicians' offices. Ultimately, all responses, including those to the hard-copy surveys, were entered into the Campus Labs database to ensure consistency in data analysis. The first and third authors, as well as the first author's research assistant, analyzed the qualitative data thematically. The first author provided training in thematic content analysis. To protect the integrity of the data analysis procedure each rater worked independently with periodic meetings to compare data and to discuss disagreement in coding.
Instrument
The data reported here represent responses to select items out of the LAA Survey, a self-report, mixed-method instrument, designed by the authors in collaboration with the LAA. The survey included quantitative and open-ended questions, covering several content areas pertaining to the life of individuals with lupus. The data reported here are in response to a subset of items from the survey asking participants to self-report on their need for help or accommodations in the workplace because of lupus, and the impact of lupus on participants' employment in general. For more information on the content, reliability and validity of the complete survey, see Giffords & Calderon (2014).
Design and Data Analysis
The study utilized a convergent mixed method design, whereby quantitative and qualitative data were collected simultaneously from the participants. Responses to nominal quantitative questions were analyzed using percentage frequency calculations. Responses to the open-ended questions were analyzed utilizing an inductive, constant comparison thematic content analysis. Level 1 coding involved deconstructing each response into units of meaning and grouping these into categories, based on shared explicit content. Level 2 coding involved contextual grouping of categories based on explicit and implicit shared meaning. The calculation of inter-coder agreement yielded a percentage of case matches among coders in terms of identifying units of meaning and grouping them into categories. Where all three coders agreed, the case was coded as full agreement, whereas where all three coders disagreed, a case was coded as a disagreement. Where two out of the three coders agreed, a case was coded as partial agreement.
Results
Frequency of Lupus Impact on Employment
A majority of the respondents (69.32%) reported that lupus affected their employment, while about 26% of the participants reported that lupus did not. Finally, 4.3% of the participants reported lupus did not affect their employment because they were students who never worked. Of those who reported that lupus affected their employment, nearly half (45.66%) reported they were no longer able to work. Participants who continued to work reported that they had to shift to part-time employment or had to change their work hours to flextime. Some participants reported needing to change their work responsibilities due to lupus.
In response to a query about needed accommodations, more than half of the participants (52.8%) reported they did not require special help or accommodations at work because of lupus. A little more than a third of the participants (34.02%) reported that they needed special help or accommodations in the workplace due to lupus. The remaining participants reported that the issue of special help or accommodations in the workplace was not applicable to them because they were never healthy enough to work (9.02%) or because they were students and were not working (4.15%).
Table 2 presents the frequency, in percentages, of participants' reports on how lupus has affected their employment.
| Variable | Percent |
|---|---|
| No impact of lupus on employment | 26.31 |
| Impact of lupus on employment | 69.32 |
| No longer able to work | 45.66 |
| Change from full- to part-time | 11.95 |
| Change from regular schedule to flextime | 6.55 |
| Change in job responsibilities | 8.94 |
| Other | 26.90 |
Participants' Self-Reported Needs in the Workplace
Participants provided a total of 826 narrative responses describing how lupus affected their employment (292 responses) and the kind of special help or accommodations they needed in the workplace because of lupus (534 responses). Level 1 coding yielded 16 categories, with an inter-coder agreement level ranging from 71% to 73%. Level 2 coding yielded 4 themes across all categories. Table 3 provides a summary of the level 1 and level 2 coding.
| Themes | Categories | Sample units of meaning |
|---|---|---|
| Theme 1 Impact of lupus on work productivity | Requiring assistance with work tasks | "Employer hired someone else to help me with my job". |
| Inability to work | "Now, I could not work with my lupus" | |
| Need for leave time/disability leave | "[I went on] extended sick leave twice" | |
| Specific symptoms that interfere with work | "photosensitivity reaction from blue light used during dental bonding procedures" | |
| Differential impact on Job type/profession | "I am a RN, I was assigned to work doing follow up on computer, phone w/o direct patient care" | |
| Reduced ability to perform at work | "I work very slowly; can't process information as fast" | |
| Variability in impact across time | "… in the past 2 months have only been able to work 6 days total…"] | |
| Theme 2: Interpersonal relationship in the workplace | Denied accommodations | "Asked to wear tennis shoes since I stand all day but was denied". |
| Relationship with boss/co-workers | "[I] feel harassed by my supervisor". " I have a very accommodating work environment" | |
| Barriers to promotion | "I could not accept a promotion because of health issues" | |
| Barriers to employment | "[it is] difficult to find employment when I'm having a butterfly rash". | |
| Theme 3: Need for flexibility and adjustment in work responsibilities | Requiring change in Job type/profession | "[I] changed positions from RN to Aide" |
| Requiring change in work responsibilities | "I no longer can do the heavy/physical part of my job so I've been moved to another department". | |
| Theme 4: Need for environmental adjustments in the workplace | Adjustment in the physical work environment | "handicapped parking placard to be able to get around, [and] my work replaced the lights in the areas where I work" |
| Need for special devices/equipment | "ergonomic chair, hands-free telephone, easily accessible file cabinets" | |
| Adjustments in work schedule | "I was allowed to work my own hours- coming in later than other employees and leaving later" |
Theme 1: Participants' Perceptions of the Impact of Lupus on their Work Productivity
Participants reported that lupus interfered with their work productivity in a number of ways. Many participants reported they were no longer able to work. For example, participants reported: "[I] cannot work due to fatigue and cognitive problems"; or: "I actually became too sick to work." Those who continued to work reported reduced ability to perform their job tasks. For example, participants reported not being able to stand or sit for extended periods of time, having difficulties typing or performing other fine motor activities, becoming fatigued after a few hours of working and needing to rest throughout the workday. Examples of these narratives include: "when I have worked 2-3 days in a row, I have overdone it and really pay for it!"; "[lupus] affects my work performance, [I am] often late and tired/fatigued." Other participants reported slowed mental capacity: "I work very slowly, cannot process information as fast"; or: "[it is] hard to focus." One participant addressed how the unpredictable nature of lupus affected work productivity: "never knowing how I will feel makes it difficult to promise an employer a consistent level of production."
The participants described specific symptoms that interfered with their ability to perform their jobs. For example, participants cited "extreme photosensitivity reaction," or noted, "I cannot be in the sun, so I've needed a colleague to cover for me when I am expected to be outside for special activities." Another participant said, "sometimes I would have days I couldn't type because of the tendonitis in my fingers or shoulder." Several other participants reported fatigue and weakness that interfered with their daily work tasks.
Participants' responses revealed that the impact of lupus on their work productivity varied across time. For example, several participants noted the impact of lupus on work performance was evident especially early in their illness. One participant shared: "I was out sick so many times the first year I was diagnosed." Another wrote: "At the onset of my illness I was in and out of the hospital a lot…" Others shared how lupus affected their work productivity at specific points of their illness: "[Lupus interfered with my work] after I had two total hip replacement surgeries and when I was hooked up to an oxygen tank." Some participants reported the impact is intermittent, citing difficulties "traveling on days when [I am] very achy" and reporting "my work [is] only affected during a flare." A few participants expressed concern about the future impact of lupus on their work performance. One participant said: "…not yet but I fear the future." Another participant wrote: "Soon [I] may not be able to work full-time." This uncertainty was echoed in another participant's response: "[I] am unsure if I can handle working now due to my lupus and fatigue."
Many participants described a temporary inability to work and having to take time off, using their sick days. There were 170 instances where participants referenced these issues, representing more than 20% of the total narrative responses. Several reported they had to take a leave of absence or a short-term disability leave. Other participants mentioned that they were able to take time off from work under the Family and Medical Leave Act (FMLA), while some had to stop working temporarily.
The impact of lupus on job performance also varied across job types and professions. A few participants, who reported they were healthcare professionals, said they could no longer perform direct patient care due to lupus. One participant reported, "[I was] unable to lift patients and would have to ask for help." Another participant reported, "I am a salon owner and sometimes I have to have someone else finish my job due to the extreme pain." Several participants who are teachers reported having difficulties performing job responsibilities during recess outdoors or completing their lesson plans. One participant said: "I had to give up my career as a teacher."
Theme 2: Participants' Perceptions of Interpersonal Relationship with their Workplace
Participants addressed relationships with supervisors and co-workers. Some participants reported feeling negatively targeted by their workplace due to lupus symptoms. For example, one participant reported: "I am very much under the gun for missing work for doctor appointments or illness." Another participant reported "animosity from management and the workers." There were 27 instances in which participants shared they were denied accommodations. For example, one participant wrote, "I have needed accommodations, but employers haven't been reasonable after stating I have lupus." Another participant shared their employer's response that providing accommodations is "not fair to other employees."
On the other hand, several participants reported that supervisors and co-workers were helpful and supportive. For example, one participant wrote: "[the employers] are very understanding… and they are willing to work with me whenever needed." Another participant shared: "my boss is very understanding of my condition even though he is not very familiar with it."
Participants also reported that lupus served as a barrier to promotion or to employment altogether. Several participants reported that they "lost promotions." One participant said, "…[lupus has] affected my ability to get tenure." Several participants reported that they lost their jobs due to lupus. For example, participants wrote: "I was fired after diagnosis"; "I was terminated due to illness." One participant said: "[I was] medically disqualified from the military." Many participants said that the job loss was due to lupus-related absences. Examples of such responses include: "[I] was let go due to excessive absences"; "I got fired for being sick too often." Some participants reported difficulty finding a job due to illness. One participant wrote: "[I] haven't been able to be hired for anything, as I cannot tolerate having a regular job."
Theme 3: Self-Reported Needs for Flexibility and Adjustment in Work Responsibilities
Some participants who were working shared that they needed to change their work tasks or responsibilities due to lupus. One participant expressed "my hours and responsibilities changed." Several participants reported shifting from direct patient care or customer service to a desk job. Other participants reported changing departments in their workplace, often taking on work responsibilities that were "lighter", "less stressful" or "less physically demanding". Some participants reported they needed to change jobs altogether. Several participants reported they chose to become self-employed, presumably to better regulate their work life while coping with lupus. One participant said: "I find that it is best to be self-employed, set my own hours, accept my limits." Other participants reported they changed professions in order to find work they could perform given their challenges with lupus. One participant reported the need to find another job "near [medical care] due to numerous [doctor] appointments." Another participant reported changing careers from full-time teaching to tutoring, commenting: "I can't teach full-time because I have to do dialysis 4 [times] a day." Sometimes, the need to change jobs or profession involved an economic sacrifice. One participant reported: "[I] took a less stressful, lower paying position."
Theme 4: Self-Reported need for Environmental Adjustments in the Workplace
Many participants described the environmental adjustments they needed in the workplace due to lupus. The reported adjustments in the physical work environment included handicapped parking spots closer to the worksite, adjustments in lights and windows to accommodate light sensitivity, and assignment of a separate or quiet workspace to help with concentration. Several participants reported they needed adjustments in the temperature of the work environment. One participant said: "[I] needed to move to [an] office with a heater due to Raynaud's." Many participants reported they were allowed to work from home permanently or as needed when feeling too tired to commute to work or when experiencing a flare. Several participants reported they needed a designated area in the workplace where they could rest when becoming fatigued during the workday. A participant who works as a teacher wrote: "[I need a] place to go and rest during the day; [I am] too fatigued to do [a] full day of classes without resting."
Many participants described special equipment their workplace provided to them that addressed certain conditions related to lupus such as arthritis, light sensitivity, and fatigue. There were 58 responses where participants described receiving items such as an ergonomic keyboard, a computer mouse, chairs, and special computer screens.
Work schedule emerged as an important issue in the context of adjustments in the workplace. Several participants explained they needed more time to complete work tasks due to fatigue or difficulty concentrating. Many participants mentioned they needed a more flexible work schedule or altered hours, and several said the workplace was providing them with a flextime schedule. Participants explained this was important to them when they were experiencing fatigue or pain in the morning and needed to start their workday later than customary. One participant said: "I changed my start time because it takes me longer in the morning to get moving (very stiff and sore)." Participants noted the importance of having control over their schedule. One participant noted the importance of "freedom to take time off or arrange my schedule as needed." Several participants explained how the workplace focuses on the work being completed rather than on the hours worked: "My work allows me to work the hours I can, my schedule is not set as long as what I need to get done gets done…"; "I keep odd hours due to fatigue I experience. I come and go as I please and I work on the weekends to make up time."
A few participants mentioned needing to manage the challenge of a long workday. One participant said: "I cannot work more than 8 hours so I've needed a modified schedule at times. I cannot participate in committees or training beyond the regular day." Another participant said "[I am] excluded from mandatory overtime."
Discussion
This study aimed to understand the work experiences of individuals with lupus. Consistent with Schur et al., (2017), who described a poor quality of work life for employees with disabilities, the current findings suggest that more than two-thirds of the participating individuals with lupus reported this condition interfered with their work life. In the current study, nearly half of the participants whose lupus interfered with their employment reported they were no longer able to work. Of those who continued to work, about 20% had to change their job responsibilities or their occupations to address the challenges they encountered as employees with lupus. About 20% of the participants, who offered narrative responses, reported they experienced intermittent challenges at work or a temporary inability to work and had to rely on sick days, take a leave of absence, or go on disability leave. Some participants reported they were fired or could not obtain employment due to symptoms of lupus, while others had to shift to part-time work. The present findings are consistent with previous literature (Carter et al., 2016; GfK Roper, 2012; Seawell & Danoff-Burg, 2004), which reveals a large segment of this population is no longer able to work at all, further supporting the notion of employment disparities as described by Schur et al., (2017). Individuals who continue to participate in work activities report experiencing reduced productivity, unsupportive interpersonal relationship with the workplace due to their diagnosis and needing special help or accommodations. It is possible that these experiences are due to the complex relationship between lupus symptoms and the workplace environment. This is consistent with literature from WHO (2011) that acknowledges the structural or social model of disability highlighting the essential relationship between people and their environment rather than the traditional biomedical view that reflects individuals' impairments or functional limitations.
The findings reveal that individuals with lupus require accommodations linked to the unique nature of the illness and related symptoms, e.g., intermittent flares and varied impact on functioning. Thus, congruent with recommendations from The Job Accommodation Network (2019) and consistent with previous findings by Varekamp and Van Dijk, (2010), our data show the participants needed accommodations encompassing physical changes in the workplace. These accommodations address gross motor challenges (accessibility), fine motor challenges (ergonomic equipment), sensitivity to light and temperature, (adjustment in light and temperature of the workplace), concentration difficulties (designated quiet workspace), and reduced stamina (designated rest areas and rest periods). Many employers allowed their employees with lupus to work from home. Consistent with findings by Varekamp and Van Dijk (2010), participants in the current study cited this as a significant accommodation that allowed them to continue working. Changes in work schedule, such as flexible work hours, emerged as an important accommodation for the participants, especially in connection with autonomy in setting their own work schedule. These findings were consistent with Varekamp and Van Dijk (2010), who explained that individuals with lupus preferred accommodations that involved autonomy in planning work. Interestingly, although most of the participants reported lupus negatively affected their work, more than half reported they did not require special help or accommodations at work. Possibly, participants thought accommodations could not alleviate the impact of symptoms on their work experience, or they were not aware of the accommodations that could be helpful to them.
Organizational administrators should adopt a flexible approach to accommodations to meet the needs of their employees with lupus. Kettner (2013), highlights the importance of considering the spirit of the law (e.g., Civil Rights Act of 1991; ADA, 1990/2008) to promote inclusion. He suggests that vulnerable populations such as individuals with disabilities need protections that are incorporated into agencies' human resource plans. This has the potential to promote equality and shape cultural values of productivity. Valuing diversity may help to encourage voices beyond the dominant group. Consistent with this view, the current data suggest administrators should be prepared to offer flextime or the ability to work remotely on an as needed basis depending on the articulated medical needs of the employee. Similarly, administrators should be aware that individuals' needs may vary even tif they share the same diagnosis. Thus, one person with lupus may require a special designated quiet workspace, while another may require an ergonomic workstation. Therefore, administrators should work toward creating a work environment that allows for a safe conversation between employees and employers about the nature of the needed accommodations. This affords organizations the opportunity to create a culture that values diversity (Kettner, 2017).
The current findings indicate that many participants reported their respective workplaces provided accommodations. However, 27 respondents reported employers denied their requests for accommodations. Similarly, some employees with lupus revealed they experienced strained inter-personal relationship in the work environment, while others reported feeling supported by their bosses or co-workers. These findings highlight the need for an interactive and individualized process between employers and employees, as described by Knapp (2013) and for social support and cultural sensitivity trainings for colleagues/employers as suggested by Varekamp and Van Dijk (2010) and Kettner (2013). Employees may also benefit from education about their rights under the ADA.
As Kettner (2013) suggests, organizations should plan to project or forecast personnel needs as a tool that helps with human resource planning. If done correctly, administrators can better understand the needs of the organization along with the needs of qualified staff, such as individuals with lupus, "who are covered by various state and federal laws and executive orders" (p.127). For example, based on the variability in needs of employees with lupus as reported here, organizations can institute a mechanism by which employer and employee will confer periodically to review accommodations and ensure they remain effective, and employees feel included. Due to the sometimes-invisible symptoms of lupus, organizations should create a culture that minimizes stigma so that employees with lupus will feel comfortable disclosing their condition to obtain accommodations. Diversity training should include discussions about all demographics (e.g., race, religion, sexual identity) including disability and chronic illness.
To ease the costs associated with providing accommodations, modifications to the physical environment, or special equipment, organizations should seek grant funding from the public and private arenas such as government grants or corporate giving. Accordingly, organizations should designate an employee with the skills to prepare written proposals and grant applications and to gather information regarding available sources of grants and foundation funding.
This study underscores the impact that lupus has on job performance for some individuals. Despite the good intention of the ADA, there is a need for more protections to maintain employees' rights and to broaden the scope of accommodations in the workplace. Building on the findings of the current study, it is probable that a diversity-focused approach to inclusion in the workplace may help individuals with lupus and other disabilities to remain viable and productive members in the workforce. Likewise, the workforce in general can benefit from exposure to different voices and perspectives potentially contributing to societal equality.
Future research should aim to understand and address the multidimensional manifestation of lupus symptoms in the workplace and to identify specific strategies that enable staff to serve as productive members of the organization. Future studies should also analyze how employers institute workplace accommodations for individuals with lupus and how this may impact salient psychosocial factors in the workplace environment – not just for individuals with lupus but for their co-workers as well. Evidence-based efforts can help organizational leadership, managers, and human resource professionals to work together more effectively to design meaningful multilevel accommodations to address the needs of their employees with lupus. More information may help organizations to predict and accommodate personnel needs better. Future research should also include an investigation of specific ADA accommodations among this population in other regions of the country to provide a better understanding of the impact of how this policy is communicated to workers and whether accommodations are provided under the letter of the law versus the spirit of the law.
The sample size as well as the inter-coder agreement rate are strengths of this study, contributing to the trustworthiness of the findings. On the other hand, the sample is somewhat skewed, with an under-representation of minorities, and with a disproportionate percent of the sample residing in New York State and in Michigan, respectively, thus compromising the transferability of the findings. In addition, it is possible that participants in the current study are more connected to the [organization] because the disease affects their everyday functioning more than individuals without an affiliation with this [organization]. This may skew the findings so that it appears most people with lupus struggle with workplace challenges. Therefore, the results of the survey may not fully reflect the opinions of those who do not experience workplace challenges due to symptoms of lupus.
In conclusion, this study provides comprehensive information about the self-reported workplace experiences and needs of people with lupus. Although the results cannot be generalized to all people with lupus, they can help organizational leaders, administrators, and human resource professionals to understand the variability in symptoms and to plan for personnel needs and in-service training for staff at all levels of the organization. These findings may help individuals with lupus to have a more active role in promoting inclusion in the workplace. Appropriate strategies for accommodations planning and implementation can remedy obstacles to workplace participation. Ideally, this will contribute to a more positive view of people with disabilities and ultimately offer them improved opportunities to participate in society.
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Endnotes
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Orly Calderon, Associate Professor, Clinical Psychology Doctoral Program Long Island University - Post Campus, orly.calderon@liu.edu
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Elissa D. Giffords, Professor & Kaycee Kane, Research Assistant, MSW Program, Long Island University – Post Campus, elissa.giffords@liu.edu
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Please address correspondence regarding this article to Orly Calderon, LIU Post, 720 Northern Blvd. Brookville, NY 11548, orly.calderon@liu.edu
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