Does visibility of disability influence employment opportunities and outcomes? A thematic analysis of multi-stakeholder perspectives

Abstract

BACKGROUND:

Adults with developmental disabilities are significantly un- and under-employed. Little is known about the relationship between visibility of a disability and employment.

OBJECTIVE:

To explore how visibility of a disability influences employment for adults with developmental disabilities.

METHODS:

In-depth interviews were done with caregivers, adults with developmental disabilities, and employment support professionals. Content related to visibility/invisibility of disability was thematically analyzed.

RESULTS:

Three main themes, with 10 sub-themes, emerged: (i) Dispelling Myths: Assumptions Related to Disability; (ii) Rock and a Hard Place: Disclosing ‘Invisible’ Disability; (iii) Finders-Keepers: Easier to find, but not keep, a job with invisible disability.

CONCLUSIONS:

Assumptions about disability underpinned employment-related challenges experienced by adults with developmental disabilities. Our findings highlight the need for employment initiatives that go beyond skill-based training to target social barriers of employment, such as stigma and lack of disability knowledge.

Keywords

Developmental disability autism spectrum disorder employment disclosure stigma adult

1 Introduction

Developmental Disabilities (DD) are a diverse group of lifelong conditions characterized by physical, cognitive, or language impairments (CDC, 2015). The estimated prevalence of DD in the United States (US) is 3.57% (Zablotsky, Black, Maenner, Schieve, & Blumberg, 2015). In Canada, 0.6% of the population over the age of 15 is diagnosed with a DD (Bizier, Fawcett, Gilbert & Marshall, 2015). Most adolescents and adults with DD have the ability and desire to work (Cramm, Finkenflügel, Kuijsten, & van Exel, 2009; Jahoda, Banks, Dagnan, Kemp, Kerr, & Williams, 2009). This is encouraging, as stable, meaningful employment offers a variety of benefits for adults with DD, including social connection, economic independence, and skill development (Beyer, Brown, Akandi, & Rapley, 2010; Holwerda et al., 2013; Salkever, 2000). Employing adults with DD also offers many advantages for employers, such as long-term commitment, consistent attendance, and workforce diversity (Morgan & Alexander, 2005).

Despite recognized benefits to employees and employers, persons with DD face many challenges to obtaining and maintaining meaningful employment (Braun, Yeargin-Allsopp, & Lollar, 2006; Konrad, Moore, Ng, Doherty, & Breward, 2013; QueirÓS, Wehby, & Halpern, 2015). Adults with DD are chronically un- and under-employed (Kaye, 2009; Konrad et al., 2013), with higher rates of un- and under-employment than any other disability type at 22% compared with 74% in the broader Canadian population (Bizier et al., 2015). Adults with DD who are employed earn significantly less income, work fewer hours, and have less opportunity for advancement, compared to adults without a disability (Kavanagh, Krnjacki, Aitken, LaMontagne, Beer, Baker, & Bentley, 2015; Kaye, 2009; Schur, Kruse, Blasi, & Blanck, 2009). These ongoing employment challenges are despite implementation of the Canadian Human Rights Act in 1977 and the Employment Equity Act in 1998, which mandated employers to provide equal work opportunities to adults with disabilities (Canadian Human Rights Commission, 1998; Department of Justice Canada, 1985), and the implementation of the Americans with Disabilities Act (ADA) in 1990, a civil rights law that prohibits the discrimination of adults with disabilities in the workforce (U.S. Department of Justice, 1990).

Research also suggests that there may be differences in the way persons with physical (visible) and mental/neurological (invisible) disabilities are viewed in the workplace. Invisible, or hidden, disabilities refer to disabilities that are not immediately apparent to an observer (Davis, 2005). Common examples of invisible disabilities include Autism Spectrum Disorder (ASD), chronic pain, and mental illness. Visible disabilities, such as cerebral palsy, mobility impairments, and Down Syndrome, are defined as disabilities that comprise visually recognizable characteristics. Martz (2003) found that employees with an invisible disability were 16 times more likely to be employed than those with visible disabilities. She argued that visible disabilities are more likely to be associated with stigmatizing attitudes from employers, which contributes to decreased employment rates. However, opposing research suggests that adults with invisible disabilities, such as mental illness and moderate-to-severe intellectual disabilities, were consistently viewed as less employable (Gouvier et al., 1991). Gilbride (2000) found that employers were more willing to hire a person with HIV, cancer, or a cardiac condition than someone with an intellectual disability. Andersson and colleagues (2015) found employers were more likely to hire persons with a physical disability than someone with a cognitive, intellectual, or psychiatric disability. Employees with intellectual disabilities were more likely to encounter workplace harassment and involuntary termination than employees with physical disabilities (Unger, Campbell & McMahon, 2011). Russinova and colleagues (2011) found that employees with mental illness experienced prejudice and discrimination in the form of social exclusion, denial of workplace accommodations, harassment, and forced disclosure of their diagnoses. The authors also found that employees with mental illness were less likely to be hired and more likely to be denied raises, promotions, and training opportunities. In a review of employer attitudes toward workers with disabilities, Hernandez (2000) concluded that employers expressed more positive attitudes toward employees with physical, visible disabilities than those with intellectual or psychiatric disabilities.

Overall, there is a lack of research that compares the employment experiences of persons with visible and invisible disabilities, and a lack of research that has specifically examined these experiences for adults with DD. Understanding the employment experiences of adults with DD with greater granularity is particularly important because adults with DD experience higher rates of un- and under-employment than persons without disabilities and those with other disability types (Bizier et al., 2015). Most previous research related to this topic has only examined employer perceptions. To our knowledge, there has been limited or no research that examined the relationship between visibility of disability from the perspective of caregivers of persons with DD, persons with DD, or people who work in the area of employment supports. Although, Jans, Kaye, and Jones (2012) investigated the influence of visibility of a disability, their sample involved adults with disabilities who were competitively employed for a minimum of five years. Given what we know about the high rates of un- and under-employment among this population, their results may not reflect the employment experiences of most adults with disabilities. Similarly, while Martz’s (2003) study identified predictive variables of employment among adults with disabilities, her sample was limited to college students with disabilities, thereby decreasing the generalizability of her findings to the broader population of persons with DD. Moreover, her paper revealed that visibility of a disability predicted employment outcomes, but it did not explore the relationship between visibility of a disability and employment beyond this point. Knowledge of the lived experiences of various stakeholders involved in employment for persons with DD can inform the development of effective supports, services, and policies to help reduce barriers to meaningful work and improve employment outcomes for adults with DD. In particular, knowledge of differences between the treatment of people with visible and invisible disabilities regarding disclosure, whether optional or explicit, can help inform and improve employment acquisition and sustainability for people with DD.

1.1 Present study aims

This study builds on existing research by exploring the experiences and perceptions of adults with DD, caregivers of adults with DD, and employment support professionals of persons with DD related to the relationship between visibility of a disability and employment experiences and outcomes. This study addressed the following question: How does the visibility of a disability affect finding and maintaining meaningful employment?

2 Methods

These data are drawn from a larger study investigating strategies to build employer capacity to support meaningful employment for persons with DD from the perspective of multiple stakeholder groups: persons with DD, caregivers, and employment support personnel. A grounded theory approach was used within the larger study. Grounded theory is a rigorous, inductive research methodology that leads to the development of conceptual categories about the phenomenon under study (Strauss & Corbin, 1998). It is well suited to examine complex individual experiences and social processes. For this study, we performed an in-depth sub-analysis of data focused on a secondary research question related to stakeholders’ perspectives regarding the relationship between visibility of a disability and employment outcomes. Thematic analysis of one theme area from a broader study is commonly used “to provide a more detailed and nuanced account of one particular theme...within the data” (Braun & Clarke, 2006, p. 83). In this case, the topic related to visibility of disability emerged within the larger grounded theory, but was not given in-depth attention within the broader analysis. All authors participated in the original research team for the larger study, although the lead author was more distant from the original data. As such, we were aware that the data fit well with this secondary research question, yet could mitigate the risks associated with being too close or distant from the data (Whiteside, Mills & McCalman, 2012). All components of this study were done in accord with the ethical standards of the Research Ethics Board at the University of Alberta and University of Calgary.

2.1 Participants in the larger study

Participants from two Canadian provinces, Ontario and Alberta, were recruited through electronic newsletters of ASD and DD service providers and advocacy agencies. Additionally, recruitment posters were posted at targeted service providers and advocacy agencies, and snowball sampling was also encouraged (e.g., participants informing others they knew about the study). A total of N = 74 people, including n = 34 employment support persons, n = 14 caregivers (i.e., parent/step-parent), and n = 26 adults with DD participated in the larger study. Table 1 summarizes demographic characteristics of these participants.

Table 1
Participant demographics for the original study and sub-analysis sample

Stakeholder Group Original Study Sub-Analysis Sample

Employment Sample Size n 34 24

Support Sex (female) n (%) 28 (82) 19 (79)

Professionals Age Mean (SD), Range 43.20 (9.97), 24–71 43.33 (9.93), 24–71

Identified cultural background Canadian (n) 33 23

Central American (n) 1 1

Employment supports experience (years) Mean (SD), Range 14.20 (10.63), 0.5–53 15.13 (13.32), 0.5–53

Persons with DD Sample Size (n) n 26 14

Sex: Female n (%) 9 (35) 5 (36)

Age Mean (SD), Range 32.14 (9.66), 17–52 36.5 (9.64), 21–54

Diagnosis n (%)

ASD 12 (46) 10 (71)

Down Syndrome 4 15) 1 (7)

Intellectual Disability (ID) 9 (35) 2 (14)

ID + Epilepsy 1 (4) 1 (7)

Highest educational attainment n (%)

Did not complete high school 1 (4) −

High school (specialized program) 9 (35) 4 (28)

High school (did not specify program) 6 (23) 3 (21)

College diploma 2 (8) 2 (14)

University degree 5 (19) 4 (28)

Graduate degree 3 (12) 1 (7)

Income n (%)

Disability income support (< $20,000/year) 19 (73) 10 (71)

Competitive income < $20,000/year 2 (8) 1 (7)

Competitive income $20,000–$30,000/year 2 (8) 2 (14)

Competitive income > $100,000/year 1 (4) 1 (7)

Did not indicate 2 (8) −

Caregivers Sample Size n 14 8

Sex (female) n (%) 12 (86) 7 (88)

Age Mean (SD), Range 54.23 (7.43), 43–67 53.63 (9.09), 43–67

Highest educational attainment n (%)

High school (some university courses) 1 (7) 1 (13)

College diploma 9 (64) 4 (50)

University degree 3 (21) 2 (25)

Graduate degree 1 (7) 1 (13)

Diagnosis of child with DD n (%)

ASD 4 (29) 1 (13)

Down Syndrome 1 (7) 1 (13)

Intellectual Disability 9 (64) 6 (85)

Stakeholder Group			Original Study	Sub-Analysis Sample
Employment	Sample Size	n	34	24
Support	Sex (female)	n (%)	28 (82)	19 (79)
Professionals	Age	Mean (SD), Range	43.20 (9.97), 24–71	43.33 (9.93), 24–71
	Identified cultural background	Canadian (n)	33	23
		Central American (n)	1	1
	Employment supports experience (years)	Mean (SD), Range	14.20 (10.63), 0.5–53	15.13 (13.32), 0.5–53
Persons with DD	Sample Size (n)	n	26	14
	Sex: Female	n (%)	9 (35)	5 (36)
	Age	Mean (SD), Range	32.14 (9.66), 17–52	36.5 (9.64), 21–54
	Diagnosis	n (%)
		ASD	12 (46)	10 (71)
		Down Syndrome	4 15)	1 (7)
		Intellectual Disability (ID)	9 (35)	2 (14)
		ID + Epilepsy	1 (4)	1 (7)
	Highest educational attainment	n (%)
		Did not complete high school	1 (4)	−
		High school (specialized program)	9 (35)	4 (28)
		High school (did not specify program)	6 (23)	3 (21)
		College diploma	2 (8)	2 (14)
		University degree	5 (19)	4 (28)
		Graduate degree	3 (12)	1 (7)
	Income	n (%)
		Disability income support (< $20,000/year)	19 (73)	10 (71)
		Competitive income < $20,000/year	2 (8)	1 (7)
		Competitive income $20,000–$30,000/year	2 (8)	2 (14)
		Competitive income > $100,000/year	1 (4)	1 (7)
		Did not indicate	2 (8)	−
Caregivers	Sample Size	n	14	8
	Sex (female)	n (%)	12 (86)	7 (88)
	Age	Mean (SD), Range	54.23 (7.43), 43–67	53.63 (9.09), 43–67
	Highest educational attainment	n (%)
		High school (some university courses)	1 (7)	1 (13)
		College diploma	9 (64)	4 (50)
		University degree	3 (21)	2 (25)
		Graduate degree	1 (7)	1 (13)
	Diagnosis of child with DD	n (%)
		ASD	4 (29)	1 (13)
		Down Syndrome	1 (7)	1 (13)
		Intellectual Disability	9 (64)	6 (85)

2.2 Participants in the sub-analysis

We did not originally include a question about visibility of disability on the original interview guide. Data collection and analysis are iterative processes in grounded theory, and, as this topic emerged within our memos and initial coding, we added a specific question to our interview guide. Therefore, the data set for this analysis was drawn from all interviews that took place once the question was added (n = 24 employment support professionals; n = 6 caregivers; n = 9 persons with DD), plus all interviews prior to adding the specific question that included data on this topic (n = 2 caregivers; n = 5 persons with DD). Therefore, the data set for this study comprised a total of N = 46, including n = 24 employment support professionals, n = 8 caregivers, and n = 14 persons with DD. Table 1 also summarizes demographic characteristics of these participants.

2.3 Data collection

The original study used individual, semi-structured interviews with persons with DD and caregivers, and a combination of individual and group interviews with employment support professionals to gather data. Interviews took place between January 2016 and January 2017. Caregivers were asked about their adult child’s experience of finding and maintaining employment as well as how their child’s employment experiences impacted them. Adults with DD were asked about their experience of seeking, finding and maintaining meaningful employment. Employment support personnel were asked about their experiences of helping adults with DD find meaningful employment. As indicated, part way through the study, a question was added to the interview guide for all stakeholder groups related to if and how the participants thought the visibility of a disability influenced employment outcomes for adults with DD. However, as indicated previously, some data relevant to this research question was obtained from the data corpus, including beyond answers to this targeted question.

Members of the research team who had significant experience with qualitative research methods as well as years of experiencing working with persons with DD and their caregivers conducted interviews. An additional occupational therapy student conducted interviews, under the training, mentorship and supervision of other team members. Interviews and focus groups lasted approximately one hour and took place in the homes of the participants, at employment support agencies, and on a university campus. Interview and focus group data were audio-recorded and transcribed verbatim with identifiers removed.

2.4 Data analysis

The thematic analysis was guided by Braun and Clarke’s (2006) framework, which involves six recursive steps: (1) becoming familiar with the data; (2) generating codes; (3) searching for themes; (4) reviewing themes; (5) naming themes; and (6) writing the report.

First, transcripts were read and re-read in their entirety by one team member to promote familiarization of the data. All data relevant to visibility of disability and employment was extracted, with bordering data for context, into a summary table. This summary table encompassed the raw interview data, transcript name, participant code, and population group (i.e., adult with DD, caregiver, or employment support professionals). As such, the data set for this study comprised all data pertaining to the visibility of a disability and employment. Second, text-highlighting was used to extract salient statements from participants, which were then coded and placed into data tables. Multiple copies of the data were available, as data could be collated into more than one code. Two team members sorted codes into themes using mind mapping, a process that uses diagrams to explore and understand relationships between ideas (Davies, 2011). The iterative process of revising mind maps continued over a series of four analysis meetings until both team members were comfortable and confident that our themes adequately and comprehensively integrated and represented the data. Triangulation of data obtained from the multiple stakeholder groups revealed remarkable consistency in perspectives across themes. Lastly, themes and sub-themes were reviewed by all team members and revised until they were determined to clearly represent the narrative experiences of caregivers, adults with DD, and employment support professionals.

Following convention in qualitative research, rigor was demonstrated by established methods of trustworthiness and authenticity, including reflexive journaling, writing memos throughout the analysis process, dialogue/consensus between team members, prolonged engagement by team members immersed in DD research and qualitative methods, and clarification probes, hence referential adequacy, throughout interviews (e.g., “I’m hearing that … Is that what you meant?”).

3 Results

Three main themes emerged regarding the relationship between visibility of disability and employment: (i) Dispelling Myths: Assumptions Related to Disability; (ii) Rock and a Hard Place: Disclosing ‘Invisible’ Disability; (iii) Finders-Keepers: Easier to find, but not keep, a job with invisible DD. Comprising each main theme were several sub-themes, which are indicated in Table 2 and italicized within each theme section below. These are discussed below, including participant quotes to illustrate the contributing content to each theme.

Table 2
Summary of themes and subthemes

Theme Theme Description Sub-Themes Sub-Theme Description

Dispelling Myths: Assumptions Related to Disability Misconceptions about disability affect employment outcomes for adults with DD. “You don’t look disabled” Employers and co-workers make assumptions about the capabilities of adults with invisible DDs based on their physical appearance.

Visible DDs fit better as special needs Visible DDs are better understood. People are more patient and compassionate toward employees with visible disabilities.

A lack of understanding of invisible DDs is associated with negative and fearful attitudes.

There is a need to educate others to dispel myths Disability-specific, strengths-based education in the workplace is needed to challenge misconceptions about disabilities and improve employment outcomes for adults with DDs.

Rock and a Hard Place: Disclosing ‘Invisible’ Disability Deciding to disclose an invisible disability in the workplaces is challenging for adults with DD. Increased pressure to disclose There is increased pressure for adults with invisible DDs to disclose their disability to gain formal workplace supports and ensure their employer is aware of their strengths and challenges as an employee.

Challenges around non-disclosure Risk of job loss and increased tension with co-workers are challenges associated with non-disclosure.

Factors that make disclosure easier Accepting attitudes and having an advocate or employment support worker disclose on the employee’s behalf makes the disclosure process more comfortable for adults with invisible DDs.

Finders-Keepers: Easier to find, but not keep, a job with invisible DD Finding a job is easier for adults with invisible DDs, but maintaining long-term employment is harder. Visible DDs: Barriers to finding a job Inaccessibility of workplaces and employer reluctance to hire employees who are not “visually pleasing” makes finding a job hard for adults with visible DDs.

Outwardly ‘normal’ appearance Employers are more willing to hire employees who “look ‘normal.”’

Difficulty navigating co-worker relationships Adults with invisible DDs felt socially excluded and treated unequally by their co-workers. Strained co-worker relationships made keeping a job hard.

Lack of workplace accommodations Adults with invisible DDs have greater difficulty accessing and maintaining workplace accommodations, which makes keeping a job hard.

Theme	Theme Description	Sub-Themes	Sub-Theme Description
Dispelling Myths: Assumptions Related to Disability	Misconceptions about disability affect employment outcomes for adults with DD.	“You don’t look disabled”	Employers and co-workers make assumptions about the capabilities of adults with invisible DDs based on their physical appearance.
		Visible DDs fit better as special needs	Visible DDs are better understood. People are more patient and compassionate toward employees with visible disabilities.
			A lack of understanding of invisible DDs is associated with negative and fearful attitudes.
		There is a need to educate others to dispel myths	Disability-specific, strengths-based education in the workplace is needed to challenge misconceptions about disabilities and improve employment outcomes for adults with DDs.
Rock and a Hard Place: Disclosing ‘Invisible’ Disability	Deciding to disclose an invisible disability in the workplaces is challenging for adults with DD.	Increased pressure to disclose	There is increased pressure for adults with invisible DDs to disclose their disability to gain formal workplace supports and ensure their employer is aware of their strengths and challenges as an employee.
		Challenges around non-disclosure	Risk of job loss and increased tension with co-workers are challenges associated with non-disclosure.
		Factors that make disclosure easier	Accepting attitudes and having an advocate or employment support worker disclose on the employee’s behalf makes the disclosure process more comfortable for adults with invisible DDs.
Finders-Keepers: Easier to find, but not keep, a job with invisible DD	Finding a job is easier for adults with invisible DDs, but maintaining long-term employment is harder.	Visible DDs: Barriers to finding a job	Inaccessibility of workplaces and employer reluctance to hire employees who are not “visually pleasing” makes finding a job hard for adults with visible DDs.
		Outwardly ‘normal’ appearance	Employers are more willing to hire employees who “look ‘normal.”’
		Difficulty navigating co-worker relationships	Adults with invisible DDs felt socially excluded and treated unequally by their co-workers. Strained co-worker relationships made keeping a job hard.
	Lack of workplace accommodations	Adults with invisible DDs have greater difficulty accessing and maintaining workplace accommodations, which makes keeping a job hard.

3.1 Theme 1 – Dispelling Myths: Assumptions related to disability

Adults with DD, employment support professionals, and caregivers unanimously agreed that myths and assumptions related to disability affect employment outcomes for adults with DD. The first sub-theme, “You don’t look disabled” reflects the myth that the outwardly ‘normal’ appearance of adults with invisible DD renders the image of being ‘less disabled’ than adults with visible DD. Participants reported that employers, co-workers, and some employment support professionals made assumptions about the abilities of adults with invisible DD based on their physical appearance and did not as fully acknowledge or accommodate for the employment-related challenges they may experience. As a result, employees with hidden DD were often held to a higher standard than adults with visible DD. One adult with an invisible DD offered an explanation for the difference in expectations among employees with visible versus invisible DD. She stated:

“I think it’s because people with a physical disability, there’s not much they could have done about it. Like, it happens and now you’ve got to relearn things. So, people are like, well, you know … ‘Hey, you used to be able to walk. Now, you’re in a wheelchair. I get it. Take your time. Be angry or maybe don’t be angry, whatever.’ But, if you have a mental disability then it’s seen as less because people assume you should already know all these things. ”

Higher expectations for adults with invisible DD were consistently paired with perceptions of being “harshly judged” by employers, supervisors, and co-workers. For adults with invisible DD, errors in the workplace were viewed as personal failures, resulting from carelessness, whereas mistakes made by adults with visible DD were associated with the employee’s disability and thus “judged less harshly”.

The discrepancy in expectations for employees with visible and invisible DD is best summarized by the second sub-theme: Visible DDs fit better as special needs. Most participants believed that the visibility of a disability led employers, co-workers, and customers to be more compassionate and patient toward employees with DD. One caregiver of a person with an invisible DD expressed that visible DDs are better understood and more accepted because they are “what most people think of when they think of employment of special needs people.” A second caregiver of an adult with a visible DD echoed the first caregiver’s statement. She said:

“I’m lucky it’s Down syndrome, you can see it’s Down syndrome. I would never want her eyes fixed because people are compassionate and kind … When she was little, we’d go to the grocery store, I mean I’ve had a man give her a toy and just people are kind because they see that she has a disability. But if she didn’t … like, I work in a school system and these poor little buggers that have tics and autism and where they look normal and for the most part they are in so many ways but they have these difficulties and it’s like … people [are] like ‘what’s wrong with them?’ Well, with [daughter], it’s like ‘Oh, she’s got Down syndrome.”’

Rather than acceptance and understanding, invisible DD was commonly associated with negative misconceptions and fearful attitudes. Employment support professionals suggested that there was greater variability among invisible disabilities, which contributed to a lack of understanding and therefore increased myths and stereotypes in the workplace. Several participants described how these assumptions influenced the “like-ability” of adults with visible and invisible DD. There was consensus that adults with invisible DD, such as intellectual or psychiatric disabilities, are perceived as “scary” or “bizarre”, whereas adults with visible DD, such as Down Syndrome, are viewed as “cute”.

The myths and misconceptions that were derived from a lack of understanding regarding DD underpinned the third sub-theme: A need to educate others to dispel myths. Most adults with an invisible DD had some experience educating their employer, supervisor, or co-workers about their disability to dispel misconceptions. One adult with ASD discussed his experience being initially stereotyped and educating others to challenge assumptions about invisible DD by stating: “We do carry that stigma with us … You can tell some people you are autistic and they still are like, ‘really?’ or ‘you are not autistic’ … So, yeah, sometimes I have to educate them.”

In addition to educating employers, supervisors, and co-workers about invisible DD, participants expressed a need for disability-specific (diagnostic-specific) education to reduce myths and improve awareness of both invisible and visible DD. A combination of formal and informal education methods were suggested by participants, including conferences, PowerPoint presentations, and private conversations with the employer. However, there was variability in the preferred delivery method. Some adults with DD expressed a desire to be involved in the education process, while others preferred that an advocate or employment support professional provide the education on their behalf.

3.2 Theme 2 – Rock and a Hard Place: Disclosing ‘invisible’ disability

Deciding to disclose an invisible disability was challenging for adults with invisible DD. Most adults with invisible DD felt pressure to disclose (sub-theme 1). Several adults with DD stated that because hidden disabilities are not visually identifiable, there was an onus on the adult with an invisible disability to disclose, whereas for adults with visible DD the onus is on the employer to address the disability. They felt that when the employer could see the disability it was up to their discretion whether they wanted to discuss how the person’s disability may, or may not, impact the employee’s work performance.

The second sub-theme, challenges with non-disclosure, which related to challenges such as the potential loss of employment and tensions with co-workers, further exacerbated the pressure for adults with invisible DD to disclose their disability. Tensions with co-workers were most frequently cited as a challenge related to non-disclosure. Strained co-worker relationships were thought to result from misunderstandings and assumptions, which could lead to feelings of frustration and/or contempt between co-workers and employees with invisible DD. One employment support professional discussed working with an adult with an invisible DD who choose to disclose to his employer, but not his co-workers. She stated:

“ … it caused a lot of problems … ongoing problems to the point where he quit because he felt he was being bullied, but the reason was because people saw him getting special treatment because he looks like everybody else; they didn’t realize he lived with Asperger’s … they didn’t realize that if he saw something … that needed to be done that was super obvious to everyone else, he didn’t process the same and so they saw him as lazy … or just even his you know, kind of social interaction, you know. Someone would say ‘I need you to do this’ and he’d say ‘no, because so and so told me to do this’…so, they’re like, ‘he’s hard to get along with, he’s not doing anything, he’s lazy.’ And there wasn’t a lot I could do.”

Another employment support professional discussed a similar experience:

“ … they don’t [disclose] and then they get hired and they get ‘oh my God.’ All of the labels I just talked about. They’re lazy, they’re weird, something’s off about that guy. That guy’s creepy, that’s … like those are the labels they get and they’re worse.”

Although this employment support professional recognized the challenges associated with non-disclosure, she also acknowledged potential negative consequences of disability disclosure. She noted that disclosure could be a barrier to obtaining employment due to stigma that stems from a lack of understanding about DD in the workplace. She therefore stressed the importance of “doing a good job [of disclosing],” which underpinned the third sub-theme: factors that make disclosure easier.

Having an accepting and understanding employer was perceived as a prerequisite for disclosure among adults with invisible DD. Adults with invisible DD expressed a desire for assurance, prior to disclosure, that they would not face discrimination from their employer and co-workers at the time of, or after, disclosure. Moreover, adults with DD often indicated a preference for an employment support professional to disclose on their behalf. All participant groups emphasized the importance of using a strengths-based perspective when disclosing to reduce negative misconceptions and ensure that employers understood the capabilities of persons with DD.

3.3 Theme 3 – Finders-Keepers: Easier to find, but not keep, a job with invisible DD

The final theme reflects perceptions that finding a job was (relatively) easier, but maintaining employment was harder, for adults with invisible DD. The first sub-theme: barriers to finding a job with visible DD represents the challenges experienced by adults with visible disabilities in obtaining employment, including inaccessibility and negative employer attitudes. One adult with a DD described how his friend, a wheelchair user, was denied a job opportunity after inquiring about building accessibility. He stated:

“ … they asked him to come [in] and he said ‘I have a wheelchair. Is the building wheelchair accessible?’ The person pretty much said we don’t want you coming in anymore … He just ended the interview and asked him not to come in.”

Participants also believed that adults with visible DD were less likely to be hired due to employer attitudes about visible disabilities. One employment support professional spoke about an employer’s discriminatory reaction toward adults with visible DD. She stated:

“ … they have had an ad in the paper for [company name] here for probably 3 months and we have 4 individuals that would be fantastic at this job. But, unfortunately, they have disabilities and the owner of [company name] has flat out said … and this is extremely discriminatory … that they are not visually pleasing to the customers and they’re ‘off-putting’, so he does not want to employ them.”

In contrast, participants thought an outwardly ‘normal’ appearance (sub-theme 2) made finding a job easier for adults with invisible DD. Because the disability was ‘hidden,’ they assumed that employers would be more accepting initially. Over time however, participants recognized that the invisibility of a disability led to challenges maintaining meaningful employment.

Difficulty navigating co-worker relationships (sub-theme 3), also made keeping a job hard for adults with invisible DD, particularly those with a diagnosis of ASD, even if they had disclosed their diagnosis. Many adults with invisible DD reported they were treated unequally in the workplace and expressed feeling socially excluded by their co-workers. One adult with ASD stated: “I have worked lots of jobs … never lasted more than three years at a place, most of the time I have ever lost a job was due to simply not fitting in”. A second adult with ASD described:

“I think people with social or cognitive issues, co-workers are a little bit more likely to paternalize them or talk to them like children and not really include them as an equal with peers … It was more so working with my co-staff members I had a hard time [with] because I appeared physically awkward, they sort of talked down to me … I sort of had a lot of little tiffs with my co-workers.”

A lack of workplace accommodations and supports (sub-theme 4) made keeping a job hard for adults with invisible DD. Due to the erroneous belief that adults with invisible DD are ‘less disabled’ than adults with visible DD, adults with invisible DD had significant challenges accessing employment supports, which made it difficult to consistently meet their employer’s expectations. One caregiver expressed her frustration with the lack of supports available to adults with invisible DD. She stated: “You know if you were blind, oh my lord I’d love that, he would get (a) million dollars in support. But, because it’s not immediately visible, he gets ignored.”

In some instances, adults with invisible DD were able to initially obtain workplace supports, but they had difficulty maintaining these supports. Participants suggested that, because invisible DDs were more likely to be ignored or ‘forgotten’ than visible DDs, retaining workplace supports was more difficult. One employment support professional therefore emphasized the need for ongoing conversations between employers, employment support professionals, and adults with invisible DD to ensure that the benefits of workplace supports for persons with invisible DD are recognized and the supports remain in place as long as they are needed.

4 Discussion

This study is the first to examine the relationship between visibility of a disability and employment from the perspective of adults with DD, caregivers, and employment support professionals. Our findings showed that adults with visible and invisible DD experience significant challenges obtaining and maintaining employment due to assumptions about disability. Similar to Martz (2003), we found that stereotypes and misconceptions about disability made gaining employment more difficult for adults with visible DD. Furthermore, our findings suggest that, due to assumptions and myths about disability, adults with invisible DD experienced pressure to disclose their diagnosis, and struggled with difficulties accessing employment supports, navigating workplace relationships, and maintaining employment. Although research on visibility of a disability is scarce, our finding that assumptions about disability contribute to differences in the disclosure process for adults with visible and invisible DD aligns with current literature. Studies suggest disclosing invisible DD is more challenging because it causes the individual to move from a non-stigmatized to stigmatized identity, whereas disclosure of a visible disability lessens stigma, which increases the willingness of adults with visible disabilities to reveal their diagnosis (Jans, Kaye, & Jones, 2012; Olney & Brockleman, 2005). Despite the heightened stigma associated with disability disclosure for adults with invisible DD, many participants in the present study chose to disclose in an effort to overcome challenges associated with non-disclosure, such as a lack of workplace supports and accommodations. However, our findings showed that disability disclosure did not improve the likelihood or capacity of adults with invisible DD to access and maintain employment supports. Instead, disclosure was associated with continued resistance and disbelief about, and perhaps greater stigma associated with, the employee’s disability.

Overall, our study revealed that social barriers such as assumptions, stigma, and lack of knowledge about disability, contributed to employment challenges, which in turn prevented adults with visible DD from obtaining employment and adults with invisible DD from maintaining a job. These findings differ from current vocational rehabilitation practices and much of the disability and employment literature that generally focuses on individualized vocational skill training and workplace accommodations as means of improving employment outcomes for adults with disabilities (Bond, Drake, & Campbell, 2016; Dutta, Gervey, Chan, Chou, & Ditchman, 2008; Yamamoto, Unruh, & Bullis, 2012). Yet, our study suggests that stigma and lack of disability awareness are among the most significant barriers to finding and maintaining employment for adults with visible and invisible disabilities. Although a lack of accommodations and workplace supports were cited as barriers to obtaining and maintaining employment for adults with DD, the need for accommodations were rarely due to a vocational skill deficit. Rather, adults with visible DD identified a need for accommodations related to building accessibility, such as wheelchair accessibility. Similarly, accommodations for employees with invisible DD included preferences for environmental modifications, such as dimmed lighting and quiet office space. Furthermore, the need for employment supports among adults with invisible DD stemmed from a desire to educate employers and overcome challenges around disability disclosure, which were underpinned by internalized and externalized stigma.

While we do not discount that individualized employment supports are a critically important ‘piece of the puzzle’ that can be beneficial and effective, our findings suggest there is a need for more research, support and programming that focuses on the social barriers influencing employment outcomes for adults with disabilities, such as stigma and lack of disability knowledge, particularly when a disability isn’t outwardly obvious. Research has shown that disability-specific education programs can be highly effective at increasing disability awareness and reducing stigma (Michaels et al., 2014; Obeid, Daou, DeNigris, Shane-Simpson, Brooks, & Gillespie-Lynch, 2015; Stuart, 2003). However, our data suggests that these efforts are not occurring, or are not sufficient at overcoming existing issues of stigma, discrimination, and exclusion. Thus, to enhance employment outcomes for adults with disabilities, service providers should be encouraged to consistently employ vocational approaches that target social barriers to employment, such as disability education for employers, in addition to individual skill-based and self advocacy-focused interventions. Moreover, we suggest policy makers consider developing and adapting current supportive employment initiatives for adults with disabilities to reflect the same. However, broader community- and society-based awareness and education campaigns may also be warranted, in particular to avoid the assumptions that individuals should and will disclose their own invisible disability.

4.1 Limitations and implications for future research

This study provided valuable information about the relationship between visibility of disability and employment. Nonetheless, there were limitations. Our sample included the direct perspective of an overrepresentation of adults with invisible DD, specifically adults with ASD, which may have influenced the generalizability of the findings. However, it is worth noting that the sample of caregivers included parents of adult children with multiple diagnostic labels, representing visible and invisible disabilities. Moreover, the narrative from the larger sample of caregivers and employment support professionals provided rich detail about the experiences of adults with visible DD, which likely balanced the description of employment experiences among adults with visible and invisible DD. Despite this, we suggest future research on visibility of a disability and employment strive to incorporate a more heterogeneous sample of adults with disabilities to ensure the data more accurately reflects the diverse lived experiences of this population. We also suggest that future research incorporates the perspective of employers and colleagues, to both raise their awareness and provide input on the mechanisms of education to which they would be most responsive. Future research, with larger samples, could also address potential differences in perspectives across stakeholder groups.

As with all qualitative research, there is a degree of subjectivity in the analysis. However, we enacted multiple means of rigor within the analysis. The nuance of qualitative data also means that there may be some overlap in sub-themes. We grappled with the sub-themes at length, but chose to include all because the core function of each sub-theme is distinct. For example, we found that non-disclosure contributed to tensions among co-workers as did some of the core characteristics of invisible disabilities, regardless of disclosure (subtheme: difficulties navigating co-worker relationships), both of which affected the ability of adults with invisible DD to maintain employment. Thus, while both sub-themes are related to challenges with co-workers, their individual purpose and relationship with the main themes differ.

5 Conclusion

To our knowledge, this study is the first to explore the relationship between visibility of disability and employment experiences and outcomes from the perspective of adults with DD, caregivers, and employment support professionals. The findings revealed that stigma and assumptions about disabilities contribute to a variety of employment-related challenges for adults with visible and invisible DD, above and beyond skills, deficits, or abilities related to one’s disability. Our research highlights the need for employment initiatives and future research that goes beyond individual skill-based training to target social barriers of employment, such as stigma and lack of disability knowledge.

Conflict of interest

None to report.

Funding

This study was funded by the Ontario Ministry of Community and Social Services Developmental Services Grant (2015-MCSS-DS006; Co-PIs D.B. Nicholas & S. Hodgetts). S. Hodgetts was funded through a PolicyWise Early Career Transition Award.

K. Teindl was supported by a graduate student award through the Department of Occupational Therapy, University of Alberta.

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