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Self-Employment for People with Disabilities: Barriers to and (Im)possibilities in Starting and Running Their Own Business

Authors:

Maria Norstedt ,

Dep. of Social Work, SE
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Per Germundsson

Dep. of Social Work, SE
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Abstract

Little is known about self-employment among people with disabilities in Sweden. The present article contributes knowledge about barriers and opportunities experienced by self-employed people with disabilities and discusses how these affect the labor market inclusion of people with disabilities.

The article draws on qualitative, in-depth interviews with 10 self-employed participants with disabilities and one group interview with six participants who were self-employed and had visual impairments.

The analysis shows that the participants see self-employment as an opportunity for a more flexible working life. However, the economic redistribution on which they often depend to run their business is conditioned in a way that does not take into consideration their everyday life. Consequently, despite political goals of inclusion and social justice, people with disabilities come to be excluded from yet another arena, that is, self-employment.

How to Cite: Norstedt, M. and Germundsson, P., 2022. Self-Employment for People with Disabilities: Barriers to and (Im)possibilities in Starting and Running Their Own Business. Scandinavian Journal of Disability Research, 24(1), pp.239–252. DOI: http://doi.org/10.16993/sjdr.909
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  Published on 04 Oct 2022
 Accepted on 31 Aug 2022            Submitted on 18 Feb 2022

Introduction

Although the right to work among people with disabilities is established in different national and international political contexts (UN 2007: article 27), worldwide this group continues to be positioned far from the labor market and has poorer economic and living conditions compared with people without disabilities (Saleh & Bruyère 2018). For some people with disabilities, self-employment can be a good alternative for supporting themselves because it provides the flexibility that may be necessary to handle their impairment. For others, self-employment may be a last resort in order to enter an exclusionary labor market—a strategy reflected in increased self-employment within marginalized groups worldwide (Wood, Davidson & Fielden 2012).

When it comes to self-employed people with disabilities, however, the prevalence varies among different national contexts. In the United States and Australia, self-employment is more common among people with disabilities compared to people without disabilities (Maritz & Laferriere 2016; US Bureau of Labor Statistics 2020). It generally looks like this in Europe as well, but with great differences between countries (Pagán 2009). In southern Europe, it is more common for people with disabilities to be self-employed compared to northern and eastern Europe (OECD 2014). In Sweden, the context in this article, the view of self-employment is generally positive. Despite this, 96 percent of businesses in Sweden are small, with fewer than ten employees (Swedish Agency for Economic and Regional Growth 2021). The proportion of self-employed among people with disabilities is slightly smaller than in the rest of the population Sweden’s population, at 5 and 9 percent, respectively. This is the case even though the group of people with disabilities involving reduced work ability had a lower employment rate in 2020, about 52 percent, compared to about 77 percent in the rest of the population, and even though the proportion of unemployed in 2020 was 17 percent compared to 9 percent in the rest of the population (Statistics Sweden 2021). In the Swedish statistics, respondents self-report whether their disability reduces their ability to work. The concept of work ability is complex and problematic because it involves different understandings depending on who uses it. Swedish authorities, such as the Swedish Social Insurance Agency, use standardized methods to measure work ability that are often based on medical assessments, explaining work ability as an individual characteristic. In other cases, work ability is understood as contextual and dependent on the work environment (Tengland 2011). When we use ‘work ability’ in this article, we use it in the same sense as Statistics Sweden; that is, we refer to the participants’ own estimation of their work ability.

In political guidelines from the UN and the EU, self-employment among people with disabilities is referred to as a form of employment that should be encouraged (UN 2007: article 27; EU 2010). However, self-employment is not mentioned in Swedish labor market or social policy guidelines concerning people with disabilities. Nor have special investments been made in projects focusing on this group in a way corresponding to approaches to increasing the proportion of self-employed women and immigrants (OECD 2019).

The precarious aspects of self-employment are repeatedly highlighted in the Swedish public debate, for example difficulties that arise when self-employed people need to take sick leave or parental leave. The compensation paid out in these cases is calculated by the Swedish Social Insurance Agency based on their estimate of how the sickness benefit-qualifying income would have developed. Thus, self-employed people with reduced work ability or high sick leave risk being hit harder than other self-employed people. To help people with disabilities with reduced work ability access, obtain, and maintain a position on the labor market, different forms of support are offered to this group: personal assistants, sign language interpreter, technical and assistive aids, and disability benefits, the last of which entails financial compensation for the cost of such technical and assistive aids. The support is administrated and applied for at different welfare organizations such as the Swedish Social Insurance Agency and the Swedish Public Employment Service. To support unemployed people in general who want to start a business, ‘support for starting one’s own business’ can be granted by the Swedish Employment Service. The purpose of this support is to guarantee supply during a start-up phase of up to six months. People with disabilities entailing reduced work ability are prioritized for this support; this is also the only group that can apply for a grant to cover costs up to 60,000 Swedish crowns for equipment, computers, and more in the start-up process (Swedish Public Employment Service 2022).

Research on self-employment among people with disabilities is still relatively sparse compared with that on labor market policy strategies targeting other marginalized groups (Wood et al. 2012), but a scoping review indicates an increase in studies in recent years (Norstedt & Germundsson 2021). In Sweden, however, current research on self-employment among people with disabilities is still largely lacking. In addition, the only two studies that have been conducted point in different directions: Whereas the first (Larsson 2006) shows that company survival was good after two years and emphasizes the possibilities of entrepreneurship and self-employment for people with disabilities, the second emphasizes the barriers, showing that there is a need for increased security in the social insurance systems (Swedish Agency for Public Management 2010).

The purpose of our article is to contribute current knowledge about both barriers and opportunities experienced by self-employed people with disabilities in Sweden. Further, our aim with the article is to understand how such barriers and opportunities affect the labor market inclusion of self-employed people with disabilities. People with disabilities comprise a diverse group, but they have in common that they are, more than others, denied access to the labor market. We argue that inclusion and participation in working life are matters of social justice as they relate to issues such as the state’s responsibility to allocate resources, the protection of human dignity, and equal opportunities for all. To understand how the identified barriers and opportunities affect the labor market inclusion of self-employed people with disabilities, we draw on Nancy Fraser’s theory on social justice and her concepts of redistribution and recognition.

Studies on Self-Employment and Disability

Here, we are mainly interested in self-employment as a form of earning one’s livelihood, but because earlier studies often use ‘entrepreneurship’ as an overlapping concept, we also refer to research on entrepreneurship. Nevertheless, an important distinction can be drawn between the two concepts. We find Parker Harris, Caldwell, and Renko’s (2014) distinction useful:

Self-employment is defined as performing work for personal profit rather than for wages paid by others (Le 1999). It is, first and foremost, an alternative strategy to salaried employment.… However, entrepreneurship refers to bringing something new and innovative to the market. (Parker Harris et al. 2014: 318)

Studies focusing on self-employed people with disabilities have identified how self-employment can contribute to participation in the general economy, economic growth, changes in attitudes, improved quality of life, independence, autonomy, and empowerment (Parker Harris et al. 2014). Obstructive factors identified in previous studies include finance and economics, negative attitudes, low expectations from the environment, and poor conditions regarding education, technical aids, and business development (Parker Harris et al. 2014). In addition, withdrawals, or reductions in welfare initiatives due to increased income, have been identified as a hindering factor when people with disabilities try to start their own business (Drakopoulou-Dodd 2015).

The opportunities identified by earlier studies show that self-employment is underutilized in work-oriented rehabilitation (Larsson 2006). In some of these studies, self-employment and entrepreneurship are highlighted as tools for increasing independence and empowerment in people with disabilities through, for example, labor market policy measures (Parker Harris et al. 2014).

Several international studies have also examined the motives behind why people with disabilities started their own business. A scoping review of research on establishment motives among this group identified four motives: economic motives, flexibility and self-determination, avoiding discrimination, and personal development and the opportunity to contribute something (Norstedt & Germundsson 2021).

Social (In)justice: Redistribution and (Mis)recognition

Different theories on justice have been discussed in relation to disability (for an overview, see Putnam et al. 2019). Nancy Fraser’s work on social justice has inspired several disability researchers, even though she herself has not explicitly discussed disability (Danermark & Coniavitis Gellerstedt 2004; Hugemark & Roman 2007; Jerlinder 2010; Mladenov 2017). One of Fraser’s central thoughts is that ‘processes and practices that systematically disadvantage groups of people vis-à-vis others’ lead to socioeconomic and cultural injustices and discrimination (Fraser 1995: 72) and that ‘justice requires social arrangements that permit all (adult) members of society to interact with one another as peers’ (Fraser 2013: 164). The solutions to social injustice are often based on two contradictory arguments: Demands for recognition presuppose a view in which the group’s distinction is emphasized and valued, whereas demands for economic redistribution rest upon arguments involving leveling out differences between groups. Fraser refers to this contradiction as the recognition-redistribution dilemma. Fraser claims that both material resources and social recognition are required in order to live up to the ideal of participation on equal terms. Her point is that economics and recognition are interlinked but can be analytically separated. By economic redistribution, she refers to various forms of political-economic restructuring of income, redistribution of labor, or transformation of economic structures in society (Fraser 1995). Meanwhile, recognition refers to whether individuals are seen as full partners in social interactions.

To avoid the dilemma of recognition and redistribution, and to not end up at the individual level, Fraser claims that misrecognition and injustice should be understood from a sociological perspective whereby we focus on the social structures that lead to members of a group being systematically denied access to certain situations (Jerlinder 2010). Based on her argumentation, people with disabilities are not to be understood as a group that shares a specific cultural identity. The group is heterogeneous, with great differences within it. In contrast, people with disabilities can be understood as a group that is systematically denied access to several arenas, including the labor market. In addition, they are met by barriers both in the surrounding environment and in the norms and attitudes created by an ableist, nondisabled majority society. With its focus on social structures, Fraser’s theory on social justice is helpful to understand how barriers and opportunities affect the labor market inclusion of self-employed people with disabilities.

Methods

The empirical data in this article consist of semistructured, in-depth interviews with ten self-employed individuals with disabilities, as well as a group interview with six members of a network for blind and visually impaired self-employed people. To avoid bias in the empirical sample, a representation across age, gender, branch, education, and disability was strived for. Disabilities were narrowed down to represent four of the most common disabilities in Sweden (i.e., visual impairments, deafness and hearing impairments, motor function impairments, and neuropsychiatric impairments). In addition, participants with chronic migraines were included to represent neurological impairments. The participants were aged 20–70 years. Two participants who are deaf were interviewed. These individuals did not identify as people with disabilities but rather as belonging to a language minority. However, because they need a sign language interpreter and are categorized by the Swedish Social Insurance Agency as having reduced work ability, we included them in the study. Further, two participants with autism and ADHD were interviewed, as were four participants with mobile impairments and two with chronic migraines. In addition to those in the group interview who were blind or had visual impairments, one more participant who was blind was interviewed individually.

Some of the participants worked full-time in their own business, and others worked part-time in combination with sickness compensation or combined their own business with being employed. The participant who had run his own business for the longest period had done so since 1967. One participant had just started. Two participants had decided to close their business. Professionally, most of the participants worked within the education, trade, and service industries. One participant was active in the agricultural industry. In terms of highest level of education, there was also a wide range among the participants, some did not have a post-secondary education, but some had a university degree.

The participants were recruited through contact with various disability organizations that distributed information about the study on their Facebook pages or via their e-mail lists. To emphasize that participation in the study was voluntary, those who were interested in participating were asked to contact one of the researchers via e-mail or telephone. The interviewed participants often thought of other self-employed individuals with disabilities whom they knew. To avoid exclusively including participants involved in disability interest groups, this snowball sampling technique was used. In a couple of cases, the participants who contacted the researchers had read about the study at Malmö University’s website. The focus group with blind and visually impaired people was included because there was already a network for self-employed people in a national disability interest organization for blind and visually impaired people. When a network meeting was planned, one of the researchers was invited to present the study and conduct the focus group interview with the members who volunteered. Most of the interviews were conducted at a place chosen by the interviewee. The interviews were audio-recorded and then transcribed. Both researchers conducted interviews and followed a semistructured interview guide.

Ethics

In the interviews, some of the participants talked about experiences of discrimination and situations that may be perceived as sensitive. In addition, the interview guide concerned topics about the participants’ body, health, and ability. For example, one interview question addressed what kind of impairment the participants had, and another addressed how they would say their impairment affected their work ability. The semistructured form of the interviews gave the participants the opportunity to problematize concepts such as ‘impairment’ or ‘work ability.’ Because the topics of health and ability should be regarded as sensitive personal data, certain steps have been taken to adhere to the Swedish law on ethical review (the act concerning the ethical review of research involving humans; SFS 2003: 460). Prior to the interview, the researchers informed the participants about the purpose of the study and stated that their participation was voluntary, that they could cancel their participation at any time, and that their names or details that might help identify them would be omitted in the presentation of results. This information was given in writing before the interview as well as verbally at the time of the interview. In the interview situation, the researchers paid attention to whether the participants seemed to hesitate, become agitated, or clearly avoid a question. Such reactions affected how the interview proceeded, and the researchers were prepared to stop the interview if needed.

Analysis

The empirical data have been thematically analyzed. First, the interviews were transcribed verbatim and read through. In the next step, meaningful units concerning experiences of barriers and possibilities in starting and running one’s own business were extracted. This part of the analysis was conducted without any specific theory in mind. For example, in one interview, the following meaningful units were extracted:

‘You’re pretty alone as someone who’s self-employed.’

‘They met in taverns and restaurants with stairs outside, so I didn’t go in.’

‘It wasn’t obvious that I would get into all their events.’

Meaningful units were then coded by the researchers. For example, the meaningful units mentioned above were coded as networks for people with disabilities, inaccessibility, and exclusion.

The next step shifted focus ‘from the interpretation of individual data items within the dataset, to the interpretation of aggregated meaning and meaningfulness across the dataset’ (Byrne 2021: 13); that is, the researchers constructed themes. For example, the code networks for people with disabilities was also found in other interviews, and the researchers placed it, along with other related codes, in the theme networks. In this way, four themes were constructed: conditions of the group, inflexible and contradictory regulations, financial risk-taking, and networks.

To gain a deeper understanding of how the barriers and opportunities experienced by self-employed people with disabilities affect their integration into the labor market, the analysis required a focus on social structures. Fraser’s theory helped us connect the individual experiences to practices, rules, and regulations at a structural level. To our knowledge, her theory has not been applied in understanding the inclusion of self-employed people with disabilities on the labor market, and we argue that it adds to new perspectives on this matter. A weakness in using Fraser’s theory is that it leaves no room for explanations of face-to-face interactions. Nor does the theory capture the complexity of all mechanisms affecting the possibilities to run one’s own business if one has a disability.

The described analytical process has influenced the article’s disposition: First the identified barriers and opportunities are presented under the different themes, followed by a discussion of how these barriers and opportunities should be understood as a question of recognition and redistribution.

Findings

The conditions of the group

The participants included in this study have widely different types of disabilities. They work in different industries, have different educational backgrounds, and have differing lengths of time they have been self-employed. This heterogeneity affects their experiences. In the analysis, the type of disability proved to be important both for the type of support they needed or were entitled/not entitled to, as well as for the adjustments they said they needed to make in order to handle the consequences of their impairment. Likewise, age proved to be important because participants who were older described changes that had taken place over time in terms of the design of the welfare support. Regardless of these differences, the participants have in common that, due to their disability, they need to invest a great deal of time and effort to make their everyday life function. This includes administrative work, such as applying for support or reporting needs for support and adaptation. It also involves many meetings and contacts with professionals from different organizations, such as the Swedish Public Employment Service, the Swedish Social Insurance Agency, and the health services, as well as, in some cases, with personal assistants or sign language interpreting services.

We have so much going on in our private lives. That is, contacts we have to make, stuff we have to apply for, as well as certificates that have to be obtained. So much different stuff that it almost becomes a job in itself. And this can create stress and take a lot of energy from a work situation. (Interview 7)

A common concern among the participants is their need for flexibility in, among other things, the possibility to replan their days and their work depending on how they are feeling on a given day. This can involve, for instance, being able to rest certain days or having the flexibility to choose which tasks they perform on certain days. All of the participants, except the two participants who were deaf, reported that the consequences of their impairment entailed certain conditions and limitations involving their ability to work. However, as can be seen in the following quote, it is not always possible to distinguish whether one’s ability to work is affected by internal or external factors:

I’m blind because I have a rheumatic disease that I got as a child. And really, I’d say that the combination between them means that I don’t have the strength all the time. And my rheumatism is the problem more than my visual impairment, really [laughs]. It’s about me having bad days and having to lie in bed and rest sometimes. And the thing about not seeing anything, the problem there many times, when it comes to work and stuff, is the accessibility issue. And that there are people who have prejudices and think that you can’t do certain jobs. (Interview 1)

This quote shows that the participant’s ability to work is impaired not only by her rheumatism but also by the disabilities that arise when an environment is not accessible, or due to prejudices.

Although self-employment offers an opportunity for flexibility, the empirical data also show that it can involve a more vulnerable position on the labor market because the responsibility for delivering and producing, so as not to lose customers, lies entirely with the self-employed individual. Such conditions apply to all self-employed people. However, if the individual has a disability that entails reduced work ability and sickness compensation, self-employment becomes an even more precarious situation because the compensation does not cover self-employed people in the same way as it does employees. In the event of a disability, this precarious situation can constitute a barrier to running one’s own company:

Well, if I hadn’t had my disability, I might’ve been able to book four or five meetings a day. I might’ve done more assignments a day. I might’ve been able to work much harder, much longer. Maybe I wouldn’t have been as tired. And as an employee I could’ve gotten help with that, but I can’t in my own business. (Interview 9)

One of the most prominent topics in the interviews is how access to support and assistive aids is handled by various actors in the bureaucratic welfare system, and how the lack of cooperation between them acts as a barrier. This becomes extra clear when something unexpected happens:

If my assistive aids break now, I can’t just call directly to this company that can fix them … No, first I have to check with the Social Insurance Agency that they can pay that cost. And then it has to be administrated, so this can be an incredible process. This means that I might just solve it in some other way or pay for it myself. (Interview 1)

In addition to the fact that it takes time to send assistive aids abroad for repair before they can be used again, one may also have to wait for feedback and decisions. To get access to assistive aids, support, or accommodations, the individual needs to be categorized as having reduced work ability or as having a disability.

Inflexible and contradictory regulations

To receive support, accommodations, assistive aids, or additional cost compensation, an individual needs to be included in a category that makes them entitled to such support. When individuals are simultaneously categorized as self-employed, as people with disabilities, and as having reduced work ability, they become part of several different systems and categories with colliding rules. For one of the participants, getting a sign language interpreter for his own company was not possible because he already had one in his other job, where he worked part-time. Another example mentioned in the interviews involved how wage subsidies cannot be used in self-employment. Yet another barrier is the regulations regarding personal assistants. The following quote shows that the need for support can vary greatly over time, but this reality does not correspond with how the use of support is to be reported:

There’s no consistency in anything. At times I need more help with some things, and at other times other things. This means I buy services here and there. Then one month can pass when I need almost nothing, and then there are months when I need twice as much. And that’s where the difficulty lies. (Focus group interview)

As a self-employed individual with a disability, one is forced to accept being categorized, opt out of parts of the support, or go without the support completely. The participant who has chosen to go without the support of the Swedish Social Insurance Agency and the Swedish Public Employment Service did not address the problem of being categorized, but he experienced other financial barriers. Despite severely reduced work ability several days a week, this participant has had financial opportunities that allow him to stand outside the welfare system. However, the consequence for this participant, just like for other self-employed participants in our study and previous ones (Ostrow et al. 2019), is that he works fewer hours and earns less than other self-employed people without disabilities in the same industry. Thus, in many cases the flexibility one can achieve through self-employment has a financial downside.

As we see from the participants’ experiences, assessments by the Swedish Social Insurance Agency and the Swedish Public Employment Service have hardened:

Now when I apply for personal assistant money I’m afraid I won’t get it. It used to be a lot easier. Then, you hardly needed to fill in anything. It was kind of just saying ‘I run a business,’ and they checked that you did, and you got the money. Now they want to know every hour exactly and what everyone earns and what they do. It’s much more controlled now, so you’re so scared it’ll go wrong somewhere. (Focus group interview)

Administrators’ practices are experienced as controlling and questioning rather than supportive, and the participants worry about losing the support that enables them to continue running their businesses:

Then there’s the Social Insurance Office when it comes to assistive aids. And it was the same thing there: I got new assistive aids, it was two years ago. And there was a horrible administrator who called me and questioned me. Unfortunately, it was like it is with a lot of things today—you’re questioned so much, and they twist and turn everything around and read every single paragraph. It doesn’t feel like they’re there to help; rather, that they’re there to save money. (Interview 1)

Although control is a recurring theme in the interviews, participants also have positive experiences of the administrators’ treatment. Especially in the focus group interview with blind and visually impaired self-employed participants, such positive experiences of the interactions with administrators emerged when one of the participants disagreed with the others, saying that he did not recognize himself in the stories of others. This participant works in a well-paid, traditional profession with a permanent workplace, where his co-owners also work. These factors might explain his positive experiences. Another influencing factor may be that his disability does not change from day to day, and thus the support and assistive aids he needs in his work do not change.

In the same focus group interview, it appeared that several of the participants had positive experiences with regard to a representative of the County Labor Board and the support they had received from the board, which no longer exists:

He traveled around then, and only met visually impaired people who worked. I was employed at the time. He asked … did I need anything, was there anything he could help me with that would work better, should he talk to the employer about something? (Focus group interview)

The positive aspects of this kind of support were that it involved personal contact with an official who knew their entire situation, and that this was a regularly and recurring contact.

The support for starting one’s own business available through the Swedish Public Employment Service was perceived by those who applied for it as relatively easy to obtain, and it can be seen as another possibility. However, several of the participants had started their business without this support; what they wanted was support once their company was launched, because this was when they encountered the most barriers.

Financial risk-taking

The risk-taking that the participants experience is mainly financial. To manage such risks, one of the participants chose to start a limited company so as not to risk personal bankruptcy. Another participant maintains a financial buffer in case the assignments stop coming; if or when the buffer runs out, the business will have to close down. It is not only regulations within welfare state organizations that make it difficult. The financial risks that self-employed people face can be counteracted to some extent by certain policies with private insurance companies. However, insurance policies that replace lost income in the event of injury or illness are not available to people with certain congenital impairments. Thus, many self-employed people with disabilities face higher financial risks in comparison with self-employed people without disabilities.

Several of the participants chose not to use the grant for start-up costs when starting a business. The grant is meant to pay for furnishings, equipment, and more. The reason these participants have not used it is that if a grant recipient’s company has to close within three years, they are obligated to repay the money:

Now you have support when it comes to purchases of equipment and stuff like that, which is also a pretty big risk if you’re not able to keep up your company, as you become liable for repayment. I don’t really see why one would need help with furnishings. A bigger problem is finding a cheap venue that’s also accessible. (Interview 9)

This quote shows how financial risk-taking is avoided and how self-employed people with disabilities, despite available support, may be forced to take greater financial risks than self-employed people without disabilities and thus end up in a position that is doubly vulnerable.

Another example of financial risk-taking concerns the hiring of staff. Most of this study’s participants had no employees. For some, this was a conscious choice to maintain their self-determination and flexibility. One participant who has several employees said she wished that the company had not grown so large with so many employees, because this had complicated her work and placed greater demands on her. At the same time, hiring staff had offered an opportunity to ‘buy herself free’ from tasks that she experienced as otherwise stressful and made her impairment worse. If there are no employees who can perform different tasks, the chances are lower that the business will expand, turn over more money, and be regarded as successful.

Networks

To manage financial risks as well as a lack of financial capital and financial redistribution, some of the participants have accepted the support of friends and family. One of the participants had made friends with people from a disability interest group, who later came to be her business partners. In the following quote, we can see how they supported her in several ways:

Two of my friends that I got to know through [mentions the name of a disability interest organization] said that sole proprietorship was not a good idea since there’s a risk of personal bankruptcy and so on. They said, ‘You should have a limited company. Fine, but I have no capital after all my sick leave and several years on sick pay. They said, ‘But we believe in this, and we think it’s very important. We can give or loan you the money.’ So now there are three of us with [mentions their diagnosis] who have started our limited company together. (Interview 2)

Networks of disability organizations or friends can offer support not only financially but also through other forms of capital, such as workforce or knowledge about accounting, thereby reducing some of the risks that self-employed people might face.

The participants had different experiences of more formal networks for the self-employed. The focus group interview with blind and visually impaired participants was carried out at a network meeting that has been held for several years. Meetings are arranged with invited guests, for example from the Swedish Public Employment Service or companies that provide assistive aids for blind or visually impaired people. Another participant is active in a newly started network that mainly operates via social media. Members of this network use it to develop each other’s skills, ask questions, advise each other, and collaborate:

Say I need a photographer for an text I’m writing. In that case, I’d rather give that assignment to someone in our network who has a disability. You benefit from and promote each other a bit. (Interview 1)

However, most of the study’s participants did not know of any networks for self-employed people with disabilities. Instead, some of them had turned to existing local business associations but had experienced various forms of exclusion from these networks:

I joined because I thought you’re pretty alone as someone who’s self-employed. But then they had … I was at a lecture with them, and then they had a lot of after work get-togethers and meetings … And they met in taverns and restaurants with stairs outside, so I didn’t go in. So I tried to quarrel with them a little bit, saying, ‘You have to choose [other] premises.’ But it wasn’t so natural to just change restaurants, because the venue where they were having these meetings was probably a restaurant [run by] one of the members. That’s why they ate there most of the time. It wasn’t obvious that I would get into all their events. And then that became a thing too, that my image … It’s wrong if I have to crawl up the stairs to be part of that association. Even paying the membership fee to that association if they exclude me from various activities is wrong to me. (Interview 12)

This quote illustrates how self-employed people with disabilities are excluded physically from premises that are not accessible, as well as socially when habitual patterns and norms are not changed.

Another important aspect in the quote is how this exclusion has consequences on this participant’s ‘image’ – crawling up the stairs makes it impossible for him to live up to existing norms regarding autonomy in general and self-employment and entrepreneurship in particular.

Discussion

Despite their many differences in terms of industry affiliation, type of disability, age, gender, and geographical location within Sweden, the self-employed participants with disabilities in our study have common experiences in terms of their opportunities to start and run their own business and the barriers they face in this process. Using Fraser’s concepts, we will now discuss how these barriers and opportunities can be understood in terms of social justice because they affect the opportunities to be self-employed on terms equal to those of others.

In the capacity of being categorized as having a disability involving reduced work ability, individuals can receive certain types of support. All of the self-employed participants in this study, except one who has chosen to be excluded, were categorized as people on part-time sick leave; people with partially reduced work capacity; and/or people in need of adaptations, support, or assistive aids. With Fraser’s concept in mind, these different forms of support can be understood as economic redistributions intended to contribute to overcoming the barriers that people with disabilities encounter in their environment.

One identified barrier in the empirical data is the colliding and rigid regulations governing what support they can receive from the Swedish Public Employment Service and the Swedish Social Insurance Agency. For example, many participants have chosen not to use the grant for start-up costs when starting a business. The reason for this is the rules stipulating that the grant must be repaid if the company does not survive three years (Swedish Public Employment Service 2022). Due to the financial risks, they choose to refrain from taking advantage of some of the financial redistributions available.

When financial resources are to be reallocated, they must go to individuals who are entitled to them. One consequence of this for the participants is that they begin to be monitored and controlled, generating more work for them. The analysis of the interviews also shows that several of the older interviewees have experienced changes over time and that new, higher demands are now placed on them in order to get the support, adaptations, and assistive aids they need in order to do their work. Reporting and applying for things take time and energy away from their work tasks. Moreover, they experience that they are treated with suspicion in such assessments. With Fraser’s focus on the institutional level, we can avoid placing the ‘blame’ on individual administrators or reading the participants’ experiences as merely individual experiences (Danermark & Coniavitis Gellerstedt 2004). Instead, an institutional paradox becomes visible: The economic redistribution in the form of support, meant to strengthen and enable the inclusion of people with disabilities on the labor market in combination with self-employment, becomes a barrier.

A possibility identified in the analysis concerned continuity and collaboration between organizations and actors working to support people with disabilities in achieving successful establishment on the labor market. Earlier studies have also emphasized this as a central factor (Germundsson, Hillborg & Danermark 2011; Porter, Lexén & Bejerholm 2018). However, our results show that such continuity has diminished.

Barriers and opportunities also affect the participants’ chances of recognition as self-employed people. The results show that self-employment offers a possibility for flexibility. Whereas employment is not flexible enough for the participants, becoming self-employed has meant a chance to participate in working life—a participation that entails recognition and social inclusion. However, there are also barriers to recognition, because the existing networks and supporting functions for self-employed people lack knowledge of and perspectives on disability. Other identified barriers include having difficulties networking with other entrepreneurs, a physical inaccessibility of the environment, and prevailing norms regarding entrepreneurship based on notions of ‘a proud and independent (white, male) hero achieving something outstanding’ (Csillag, Gyori, & Svastics 2019: 44). Not belonging to established networks or fitting into the cultural representations of self-employment due to disability obstructs the cultural recognition of people with disabilities, which can lead to their social exclusion.

Although several of the results presented earlier focus mainly on economic redistribution, we believe that they correspond with the central thought of Fraser’s theory: Economic redistribution and recognition are connected. In summary, we suggest that people with disabilities do not receive recognition as either employees or self-employed people in the global capitalist economy with its high demands on productivity and financial returns. The economic redistribution aiming to include people with disabilities on the labor market does not take into consideration the specific conditions and needs that self-employment involves, thus placing them in an institutional paradox in which self-employment is difficult to combine with support and accommodations for disability. For people with disabilities, these barriers taken together lead to a lack of social justice, because this means they will be excluded from yet another arena despite political goals to include people with disabilities on the labor market and in society at large.

Methodological considerations

Due to this study’s relatively small number of participants and the limitation to the Swedish context, there is a risk of bias. However, the results are largely consistent with those of previous international studies, which gives this study higher credibility. As always in a qualitative analysis of empirical material, the results depend on the researchers’ pre-understanding and interpretation. Two researchers (the authors of this article) have individually analyzed the empirical data, and a comparison showed a high degree of agreement. Even though the study cannot lead to overly far-reaching generalizations, these conditions, along with the use of the theoretical framework, lay a foundation for transferring the results to other contexts to some extent. It should also be noted that the study’s participants are heterogeneous and that there are individual differences.

Conclusion

The barriers that people with disabilities face need to be addressed when it comes to the support, assistive aids, and benefits that enable inclusion on the labor market. This process can be understood as a policy of redistribution (Fraser 1995). In this article, we have shown that the economic redistribution is conditioned in such a way that the everyday life and needs of self-employed people with disabilities are not taken into account. What ought to be an opportunity to participate on the same terms as others instead becomes a barrier, placing the group in an institutional paradox. This knowledge is central to politicians, practitioners, and other stakeholders if they are to develop new ways to support people with disabilities in gaining access to work to the same extent as those without disabilities can.

If people with disabilities are to be included on the labor market, self-employed people with disabilities must become visible on the Swedish labor market and disability policy agenda in the same manner as in both UN and EU policies, in which labor market policy initiatives aim to ‘ensure that all people, regardless of their personal characteristics and background, have an opportunity to start and run their own businesses’ (OECD 2021). This endeavor is increasingly referred to in research and politics as inclusive entrepreneurship. The goal of inclusive entrepreneurship is that groups that are underrepresented as entrepreneurs are to overcome social and economic barriers (Pilková, Jančovičová & Kovačičová 2016). Unlike other groups of underrepresented entrepreneurs, such as women and immigrants, in Sweden no investments are made for people with disabilities. Therefore, people with disabilities are not covered by either the financial redistributions or the recognition that such initiatives can be regarded as. In other words, both the group itself and the issues concerning self-employment for people with disabilities are virtually invisible in the Swedish context.

We should, however, be careful about turning to self-employment as a universal solution for the labor market marginalization of certain groups. An evaluation of the grant for start-up costs when starting a business shows that self-employed people are at great risk of ending up in debt and that it often takes several years before they can support themselves on the income from their company (Swedish National Audit Office 2019). Therefore, we wish to emphasize that efforts are still needed to support those who want a place in working life as employees.

Parts of the interviews with the participants were conducted during the COVID-19 pandemic. Because working life in general has been forced to change due to this crisis, new conditions have arisen that have led to, among other things, increased flexibility. One participant spoke about his hopes that the crisis would lead to increased acceptance of employees working from home. Another consequence of the pandemic, mentioned by other participants, was that the digital development had accelerated and opened up for teleworking to a greater extent. The question remains as to what extent such changes during the pandemic will affect the organization of working life in the future, and what consequences this will have for people with disabilities with reduced work ability. Future studies on this are needed.

Ethics and Consent

The study has been reviewed and approved by the Swedish Ethical Review Authority, reference number: 2019-02989.

Acknowledgements

This study was financed by Forte, Swedish Research Council for Health, Working Life and Welfare project-ID: 2018-01754.

Competing Interests

The authors have no competing interests to declare.

Author Contributions

Both authors contributed equally to this article. In collaboration, they designed the research project, gathered and analyzed the empirical data, and wrote the initial draft of the manuscript. Furthermore, they have cooperated in the editing and rewriting of the manuscript. Both authors have read the final manuscript and approved it for publication.

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