Between Social Involvement and Working for a Living: Activism and Work in the Narratives of Female Activists with Disabilities in Poland

Kamila Albin^*

University of Warsaw, Poland

Między zaangażowaniem społecznym a pracą zawodową – aktywizm i praca w narracjach aktywistek z niepełnosprawnością w Polsce

Introduction

In capitalist societies, the key to autonomy is paid work and wages. Work, however, is not merely an economic practice. It is a social convention and disciplinary apparatus. It is treated as a basic obligation of citizenship (Weeks, 2011). Wage labor is also regarded as an important factor contributing to the identity formation of an individual as an adult and able-bodied person (Turner, Bohata, Thompson, 2017). Disability studies scholars claim that free market economy – by imposing the paradigms of efficiency and competitiveness – has largely contributed to the marginalization of persons with disabilities in the labor market (Barnes, 2000).

Persons with disabilities are more exposed to unemployment and, consequently, are vulnerable to poverty and dependency (Barnes, 2012). From this vantage point, disability emerges as “part of the ‘central contradiction of capitalism’” (Russell, Malhotra, 2002: 212). This contradiction is sharpened by the fact that in many countries disability is defined as incapacity to work (Rose, 2015).

Scholars stress that despite their disadvantaged position in the labor market, many persons with disabilities embrace the capitalist ethos of fierce competition and high productivity at work. Paid work is an important factor for their identity-building (Galer, 2012; 2018). Simultaneously, some of them engage in social activism. In this paper, I define the concept of ‘activism’ as actions whose aim is to overcome all kinds of barriers, including in mentalities, communities, and communication, as well as institutional, etc., preventing persons with disabilities from enjoying human rights on an equal basis with other citizens (Chataika et al., 2019).^[1]

Activists with disabilities who simultaneously work for the community and have a paid work are realizing their right to a meaningful and socially useful work. However, they also fit into the neoliberal agenda which considers labor market participation as a civil responsibility (Baeken, Forrier, De Cuyper, 2025). Balancing these two – often conflicting – goals requires the development of individual strategies for combining paid work with activism in the community of persons with disabilities. In practice, activists with disabilities combine paid work with volunteer work, are on flexible forms of employment, or have full-time jobs, for example in non-governmental organizations (NGOs) that are active in the field of disability. However, the scholarly literature has not considered such practices systematically at the micro level.

In this article, I pose the following question: are activism and work separated into mutually exclusive spheres or are the borders between them blurred and fluid? The paper addresses these topics through the analysis of autobiographical narratives of women with disabilities.

Members of this group are subject to multiple forms of discrimination at the intersection of disability and gender in various fields and spheres of social life. Research suggests that both gender and disability have a negative impact on the economic status. Women with disabilities are much more vulnerable to unemployment and low wages, which results in higher rates of poverty (Schur, 2003). If only for this reason, it is important to study the perspective of female activists with disabilities when discussing the relationship between work and activism. In the theoretical section of the paper, I address the connections between activism, work, and identity. This discussion is framed within the broader context of contemporary understandings of wage labor, e.g., as non-material work that includes, among other things, emotional work (Hochschild, 2012). Another important idea is the process of positive identity-building of a person with disability. A positive identification with a community represents a point of departure for involvement in advocacy work.

I begin the empirical part by examining the tensions that emerge between activism and paid work. Then, based on my analysis, I identify four ideal types of activists: the precarian activist, the full-time activist, the manager activist, and the leisure time activist. The four ideal types correspond with four strategies for managing activism and its relation to paid work.

Activism and paid work

The relationship between paid work and activism is an under-explored area in academic research. The subject literature focuses on the impact of the professionalization process (the bureaucratization, rationalization, and marketization of voluntary organizations and social movements) on activism and activists (Staggenborg, 1988; Martens, 2006; Shiv, McAllum, 2012; Roth, 2016). Another field of research is activist engagement in social change in educational, social, and community work, including explaining how professionals – e.g., researchers, teachers, lawyers, public health workers, or social workers – use their profession as a lever to achieve political and social change (Greenslade, McAuliffe, Chenoweth, 2015; Blenner, Lang, Prelip, 2017; Costa, Vaz, Menezes, 2021).

Contemporary definitions of work significantly broaden its conceptual framework, going beyond the dichotomy between publicly performed (paid) work and privately performed (unpaid) work that was once present in traditional social theory (Taylor, 2004). At present, the concept of work extends far beyond physical effort or manufacturing goods. Both the tools employed in wage labor and its outcomes increasingly become immaterial (Weeks, 2007). A growing number of professions require employees to draw upon their knowledge, affects, and communication skills (Hardt, Negri, 2000). Emotional work is an example of such immaterial tools. As noted by Arlie Russell Hochschild (2012), emotional work has defined value and can be traded on the labor market: “This kind of labor calls for a coordination of mind and feeling, and it sometimes draws on a source of self that we honor as deep and integral to our individuality” (Hochschild, 2012: 7). I understand the aforementioned ‘source of self’ as an identity of an individual which – as will be shown in the subsequent parts of this paper – can be a tool with which they work.

By doing so, work colonizes new spheres of life (Weeks, 2007). Kathi Weeks (2007) questions the existence of clear boundaries between life and work. She argues that labor constitutes the process of subjectivity formation. As she explains, “It is not only that work and life cannot be confined to particular sites, from the perspective of the production of subjectivity, work and life are thoroughly interpenetrated” (Weeks, 2007: 246). As she further notes, “The subjectivities shaped at work do not remain at work but inhabit all the spaces and times of nonwork and vice-versa” (Weeks, 2007: 246). If we assume this to be true, then we need to recognize the relationship between activism and wage labor.

Activism is based on a deeply rooted sense of the purposefulness and importance of actions. It can be understood as (often unpaid) actions, often carried out in leisure time, and aiming at achieving political transformations as well as defending values or ideas that are important to an activist. Activism is often associated with mission-driven activities. However, many forms of challenging the status quo require the use of various resources, including financial ones. For activists with disabilities, the latter include primarily the costs of personal assistance and accessible transportation, especially in places with poor public transport (Petri, Beadle-Brown, Bradshaw, 2021).

Activism and paid work are not mutually exclusive. Similarly to paid work, activism requires the dedication of time, mental and/or physical effort, and, in addition, as explained in the subsequent part of this paper, it requires emotional work. Activists usually receive much lower remunerations and endure much more precarious working conditions compared with those doing conventional jobs (Martin, 2007). Therefore, it seems that purely financial considerations are not the driver for activism. Among the main motivations, Bert Klandermans (2002) enumerates identity. This is one of the key concepts in this micro-level analysis. As a biographical construct, identity is formed through the biographical work performed by the subject (Golczyńska-Grondas, 2014). Identity consists of a constant, conscious, and critical interpretation, ordering and giving meaning to various actions and events that take place in human life (Strauss, 2017). At the individual level, biographical work consists of the subject that dialogs with herself/himself, with her/his experiences and thoughts. This individual level, however, is embedded in the social context, as significant others and reference groups – e.g., family, teachers, friends – can contribute to biographical processes (Golczyńska-Grondas, 2014). Scholars point out that he incorporation of disability as an element of individual self-definition is an important milestone in the identity development of a person with disability. The key to this is presence in the community of persons with disabilities, which contributes to disability pride and the recognition of discrimination as the common experience within the group (Gill, 1997; Putnam, 2005; Nario-Redmond, Noel, Fern, 2012; Jackson et al., 2025).

It seems that the disability-related identity of an individual often becomes a key asset employed in self-advocacy. That is why an activist work involves a major personal and emotional commitment.^[2] The identity is transformed into a tool with which activists work, organize self-advocacy, raise awareness, and counteract stigmatization (Męcińska, 2018). Activist work goes far beyond doing a regular job. Ewa Furgał – an experienced activist and the founder and president of the ‘Girls on the Spectrum’ (Pol. ‘Dziewczyny w Spektrum’) Foundation – draws attention to this aspect. She explains that activism “is an activity that defines me, a point of reference in life, a space to do what I love in a way that develops me, my safe place” (Furgał, 2022: 142).

Notwithstanding, framing activism as work, albeit unpaid in most cases, helps to acknowledge such problems as working conditions and working time or the right to rest that are indispensable for ensuring occupational health and safety as well as the well-being of an activist (Trawińska, 2019).

Research methodology

The empirical material presented in this paper was collected as part of a research project on female activists with disabilities, which was carried out from 2022 to 2024. During this time, I conducted 28 narrative interviews with women aged 20 to 51 working in the NGO sector, informal collectives, or unaffiliated, who self-identified as women with disabilities, mainly physical or sensory. I conducted the interviews at a location chosen by the interviewee, usually at her home. The interviews lasted between 1.5 and 3.5 hours. Recruitment was carried out using the snowball sampling (Babbie, 2006) with the support of disability organizations and female leaders in the disability community.

In such research, there are multiple ethical considerations that need to be addressed. The experience of disability is shared by the author of this paper and was surely an asset in the research process, from its recruitment phase to the interview itself. As a scholar with disability and an NGO activist myself, I am well aware that women with disabilities are a vulnerable group subject to discrimination (Liamputtong, 2007). This is reflected in the interviews. Narratives on becoming an activist often tell a story of difficult, even traumatic, experiences, as well as of abuse suffered from early years within families, at school, at work, at medical facilities – perpetrated by both the closest relatives and random people on the street. That is why, in line with the ethics committee recommendations, I decided to fully anonymize the data. This became a major challenge due to the unique nature of the biographical narratives and the presence of many of these activists in the social and mainstream media.

The main objective of the research was to learn about the individual, subjective perception of activist experiences of the women as well as the meanings attributed to them by the interviewees. For this reason, I adopted the interpretive sociology paradigm (Adorjan, Kelly, 2017), using narrative interviewing (Kvale, 2012). First, I asked each interviewee to tell her story of becoming an activist. Then, by asking questions and probing about specific parts of the narrative, I organized it and clarified elements that were unclear to me (Kvale, 2012). In addition to questions concerning family and social relationships, as well as activities in various organizations, the interview guide included posing questions about paid work and its possible links to activism. I also asked about ways of reconciling these two spheres of life.

I used thematic analysis to develop the topic addressed in this paper and to describe the categories that emerged. According to Braun and Clarke (2006: 2), “It offers an accessible and theoretically-flexible approach to analysing qualitative data”. It allows for the identification, description, and interpretation of thematic patterns (Braun, Clarke, 2006). The process of data analysis ran parallel to conducting the interviews (Hammersley, Atkinson, 2019). It began at the time of the interview, when – during the phase in which specific issues are discussed in-depth – I shared my initial interpretations with the interviewees so that they could discuss them with me, agreeing or disagreeing (Kvale, 2012). By reading transcribed narratives multiple times and tracing the evolution of the biographies of the interviewees, I was able to isolate differences between individual narratives about activism and work, which inspired me to ask further questions. I also identified similarities that enabled me to draw generalizations regarding, for example, the ways in which categories of work and activism manifest themselves in the biographies. I was also interested in the process of a redefinition of the meanings of these categories (and changing attitudes toward them), in time shaped by various, sometimes difficult, events (Kvale, Brinkmann, 2009). I am well aware of the fact that due to the qualitative nature of the data, the categorization suggested in the analytical part of this paper may not cover all the potential ways in which activism intersects with work.

Work and activism in the narratives of women with disabilities

In most of the analyzed narratives, the interviewed women frame their activism as work, emphasizing its identity-related dimension, which they refer to as ‘working with their own history’ or ‘work on identity’. It occurs when the activist’s own identity is the basis of their activism, and they take action to protect or expand the rights of the group to which they themselves belong (Jędrzejewska, Grabowski, Możański, 2022). In their activism, individuals often draw on their personal experiences as members of the group they represent. The activist’s identity thus becomes a tool used at work. The interviewees employ it in educational activities such as disability awareness training in schools, at universities, in cultural institutions, etc.

One of the respondents – a veteran activist for the rights of women with disabilities as well as an anti-discrimination trainer and performer – puts it in the following way:

I also want to charge money for my activism, because it is a very hard work. I have to prepare a presentation. It’s not just telling your story. The work of an activist involves working on your story, from which other people benefit, and they learn from me. Every such meeting is also exhausting. So I also want to get some benefit from it. I feel that we just have to value ourselves and teach other people and institutions, that we should be paid for our work. (Hanna, 46)^[3]

In her activist work, Hanna’s identity of a disabled person becomes an example to illustrate or describe the broader issue or the peculiar situation of the group that she belongs to. She thus becomes a representative of the entire group of people to which she belongs. This can cause various tensions at the intersection of activism and work. Hanna points out that being an activist is not always a pleasant experience. Any failure or success can be finger-pointed by others and the constant exposure to the judgements of others, and the need to confront them, can be emotionally exhausting (Edú-Valsania, Laguía, Moriano, 2022). This is particularly difficult when an individual belongs to and acts on behalf of a group that is vulnerable to prejudice, social stigmatization, and, as a result, various forms of discrimination. The over-exploitation of identity in the long run can be emotionally draining and cause burnout (Furgał, 2022). It can also be associated with the so-called ‘advocacy fatigue’, defined as “the increased strain on emotional, physical, material, social, and wellness resources that comes from continued exposure to systemic inequities and inequalities” (Basas, 2015).

Another interviewee – an influencer and activist for the accessibility of culture for visually impaired people – talks emphatically about emotional exhaustion:

It was a bit mentally killing me, that every time you have to explain to these people that you are not a camel. What I mean is that not being able to see is not a tragedy – that you can live a normal life, graduate from university, live independently, and know how to wipe your ass. Well, really. You seemingly know all this, but when the fiftieth person in a day comes to you and asks: “Who prepares you breakfast?” or ”And who combs your hair?” It makes you sad that people see you that way. Of course you’re able to separate from that, but you’re not able to separate completely, no? (Daria, 33)

The participant emphasize that visual impairment does not prevent leading an independent and “normal” life, including completing higher education and managing everyday self-care activities, stating that “not being able to see is not a tragedy.”

Another tension manifests itself at the intersection of activism and expertise. In the analyzed narratives, activism often means being an advocate for an oppressed group. An internal sense of mission is strengthened by a sense of duty to educate and to raise disability awareness and knowledge about accessibility. On the other hand, this kind of activism requires many competencies and skills. This is pointed out by Daria, who collaborates with cultural institutions as a consultant of accessibility solutions for persons with visual impairments:

It is a form of activism aimed at developing awareness among cultural institution workers – and people in general – that consulting people with disabilities on accessibility solutions (such as audio description or subtitles) is expert work and should be paid for. Usually people think that a blind person, simply because of being blind, can consult audio-description or conduct training. I, too, had to learn a lot. And also I had to read many of these audio descriptions. And I had to participate in many trainings. There are certain rules you have to follow. I had to learn all this and so on. So it’s not going to be done by just any person off the street. (Daria, 33)

One of the activist tasks taken up by Daria is raising awareness among employees of cultural institutions on the expert nature of advice given by people with disabilities as well as the need for financial compensation for such work. She notes that giving expert advice requires the investment of time and money in continuous development, for example by participating in training courses or postgraduate studies. Due to the growing professionalization of access services – which is manifested by the adoption of legal regulations4 or the resulting appointment of accessibility coordinators in public institutions – such activities increasingly require very specialized knowledge, e.g., legal, technical, or linguistic. At the same time, Daria emphatically points out that the very fact of living with a disability does not automatically make her an expert.

Strategies for managing activism and work

In this section, I examine how the activism of the interviewed women with disabilities, undertaken for the benefit of the wider community, intersects with their professional pathways. I focus on the ways in which these two spheres – activism and work – are connected, on how their relationship evolves over time, and on how the women negotiate and manage these dynamics.

From the outset of this research, I was particularly interested in whether and how the interviewees distinguish between activism, social engagement, and paid work, as well as in the forms of overlap and interaction between them. Alongside the centrality of activism in their life stories, the narratives also provide profound insights into the narrators’ quest for professional opportunities and aspirations for career development.

As mentioned in the introduction, I identified four ideal types of activists: the precarian activist, the full-time activist, the manager activist, and the leisure time activist. Each employs specific strategies to integrate or separate activism and paid work.

The precarian activist

A precarian activist carries out her activities in cooperation with various organizations: universities, associations, foundations. Often these activities are carried out as part of the projects implemented by these organizations. She is usually employed on short-term contracts, or on paid internships by organizations active in the field of accessibility, working as an accessibility expert, an auditor, a consultant, or a trainer. This is illustrated by the case of Emilia. She holds several degrees. Since her time at the university, she has been active in the field of access to culture for the visually impaired.

I got an internship at the Foundation [working for the blind – K.A.]. Well, and there were non-stop accessible events, non-stop action against exclusion, a million workshops that were just fantastic. Unfortunately I was there only for three months, but then I joined a project that really opened my head. From this project I got a million orders and people who just want to do accessibility at all possible levels. So that’s where I started going, visiting cultural institutions. Fantastic work, it’s a pity it’s over now. In the meantime, I also worked in the office in the cultural department. Well, and there I was also active in accessibility, consulting audio description, auditing websites, adapting texts in Braille. (Emilia, 31)

Emilia is passionate and enthusiastic about her work. She takes on many satisfying jobs, usually involving activities that benefit the entire community. She is always ready to take on new, ambitious tasks. However, a sense of constant uncertainty and regret caused by the fleeting nature of successive small jobs creeps into the enthusiastic narrative, as these jobs do not guarantee stable employment, financial stability, or economic security.

A similar career pathway can be observed in the case of Weronika, who is an activist for the deaf-blind community:

During these 10 years, I was constantly doing something, either conducting training for various social groups or working with and supporting deaf-blind, blind, and wheelchair users. Then I did an internship at the ‘Society for the Support of Deaf-blind’ [Pol. ‘Towarzystwo Pomocy Głuchoniewidomym’ – K.A.], where I applied for grants and organized various kinds of additional meetings, like club meetings, and I was a kind of liaison person between the disabled and those without disability. A community leader, something like that. And so it all went on, these individual training sessions, I didn’t have an employment contract for them, just contracts of mandate, sometimes it was a one-off training session, sometimes it was a series of training sessions, and that’s how I earned extra money. I conducted training sessions in integration schools for students, so that they know how they could help such a person, for teachers as well. (Weronika, 40)

The quotes above suggest that this activist work can be conceived as precarious work (Standing, 2011). Emilia’s and Weronika’s work is occasional, temporary, and uncertain; if formalized at all, it is usually carried out on civil law – a junk contract – within a specific project. For this reason, their remuneration is irregular, both in terms of frequency and amount, and access to social protection is severely limited (Mrozowicki et al., 2020).

The full-time activist

A full-time activist has a full-time job in a foundation or association that works for the community, e.g., in the field of the accessibility of culture, education, anti-discrimination, etc. Such a person is an employee rather than a founder or a leader of such an organization. She carries out the statutory mission of the organization with which she identifies and which she considers important and necessary for the broader community. However, she does not make key decisions about the organization. The narration of Żaneta offers a case in point. She was born deaf. She uses Polish Sign Language (PSL) as her mother tongue. Żaneta works for an organization advocating for people with sensory disabilities: blind, deaf, and deaf-blind. She had previously worked for a company that taught PSL. Both her work and her activism consist mainly in producing accessible contents for the deaf community, including vlogs in PSL. These are invitations to cultural events such as exhibitions, workshops, trainings, and webinars.

In the foundation, I’m also working more on making information available in sign language, including these vlogs. I also work here to encourage women to participate in these events. (Żaneta, 33)

In addition, Żaneta is active in the collective of deaf and hard-of-hearing women, which was established alongside the foundation. Żaneta’s narration shows how much life and work intertwine and how difficult it is to draw boundaries between them (Weeks, 2007). The activist does paid work for the community which, in turn, shapes her identity. Her narrative suggests that this does not have any negative consequences for her life and work. In her activities, Żaneta maintains the so-called “activism-work-life balance.” This concept refers to the reconciliation of activism with other spheres of life, such as leisure time, family, and paid work (Roth, 2016: 36).

It’s a bit related, because our foundation activities… Yes, this is my main job, but also at the same time what I do, I also like to do it. And at the same time, many of the women who make up our group also combine this with the activities of the Foundation, so that’s how it sometimes intermingles a little, you could say. It is understood, however, that work comes first, after all. (Żaneta, 33)

For Żaneta, undoubtedly, her full-time job offers more security and stability, as she enjoys all its benefits, such as paid annual leave, health insurance, and payment of pension contributions. Unfortunately, this form of employment is rare (Charycka, Gumkowska, Arczewska, 2020).

Activists claim to be satisfied with their work, whether they take on numerous short-term commitments or are employed full-time. Nonetheless, the economic aspect is also important to them, as being involved in wage labor is considered to be the way to achieve financial independence (Galer, 2012).

In fact, when I was like twenty-one years old, I decided that even though I was studying, well, I also had to work. Because at that time I was obsessed with the idea that I must save up toward my retirement. All in all, well quite, forward-looking. Plus I also just wanted to support the house and have some money of my own. Well, and I started looking for a job. I worked as an info-broker, that is, I searched for information, uploaded, you know, databases, advertisements, this is our community’s hell job. But it was cool. It brought me some satisfaction and money, small, yes, but still. (Emilia, 31)

One activist points out that paid work can act as a safeguard against possible economic violence:

[…] and fortunately, I hope that because of these skills that I have managed to develop or that I am still acquiring, I will be able to avoid, let’s hope I never experience it, experiencing any economic violence. (Anna, 30)

Women with disabilities are particularly vulnerable to abuse, including economic violence (European Disability Forum, 2021).

Apart from its economic aspect, the women emphasize that the work gives them the opportunity to be involved in what they consider important and necessary, which can potentially benefit the community (Galer, 2012). This is well explained by Anna, who, like Żaneta, is involved in designing information material, e.g., on reduced fees applicable to people with various disabilities:

[…] indeed, I do invest a lot in my development, right? First, I love the job. Second, the job is connected with a topic that is huge for me. […] And it turns out that my work can benefit other people. As they can learn about the information that is useful for them, because they know how to come around getting a rehabilitation spa trip or reduced fees. Or what’s going on in the government and why. The information [the respondent deals with – K.A.] is varied. (Anna, 30)

Here, it is important to acknowledge this work as a form of investment in self-development. Even if working in an organization involves a lack of – or limited opportunities for – promotion, which, as research shows, is one of the significant problems of NGOs (Charycka, Gumkowska, Arczewska, 2020), the interviewees point to the opportunity to broaden their knowledge about disability issues and present expert knowledge in the field of accessibility:

For the fifth or sixth year I am still in the same job. Well, but by virtue of the fact that I started to work in this field, because I was terribly excited about it and I felt that it was a cool job, well, every day looking through different news stories made me acquire this knowledge and I started to see what the problems are, who is who in our community, who has what intentions or needs. (Anna, 30)

Finally, working in NGOs allows the interviewees to build a network of professional contacts, which can be useful at later stages of their career. As Daria explains:

The period of work at the foundation was nice insofar as I made a lot of contacts for myself, and now I can act a bit as a freelancer. I mean, I don’t advertise anywhere that ‘listen, I’m doing this and that’, but it’s just that the institutions I used to work with are already approaching me directly rather than the foundation, to do something there for them. It’s not like I have three assignments every month, no? And I get a second salary from that. It’s more like that every month there are, let’s say, some couple of hundred [of zlotys – K.A.], and even then not every month. Well, but it’s always there for something extra, right? (Daria, 33)

As suggested by the quotes above, the work of a full-time activist in an NGO often goes far beyond paid work, intermingling with other spheres of life. Apart from providing a means of subsistence, it offers valuable relations, friendships, professional contacts, and a sense of belonging to a group (Jędrzejewska, Grabowski, Możański, 2022). The separation of these two spheres is virtually impossible.

The manager activist

A manager activist is a person who sets up her own organization, for example a company, a social enterprise, a social cooperative, a foundation, or an association. Setting up her own entity can be a promising alternative to short-term, precarious forms of employment and/or underemployment (NIK, 2022).

Alicja, together with her husband, decided to set up a foundation. For years they had wanted to do more for the community. An impulse to do that came from a year-long scholarship abroad where they learned about activities of self-advocacy organizations. In addition, Alicja works at their foundation:

And that’s when I started thinking, and my husband thought the same, as he was also longing for such project [laughter], that we want to do it right now and we don’t want to wait until we retire, rather we want to do it here and now. First, we kicked off our activities and then we decided to systematize them, to set up a foundation for me to have a stable point of reference and a place where I would be employed. So this is how it looked like. And we wanted to use the experiences of self-advocacy we have learnt, so we decided to focus on advocacy and lobbing, to push through the priorities that we want to be implemented. (Alicja, 36)

Being a manager creates a space that will give opportunities to fulfil the mission guiding a manager activist, i.e., to carry out advocacy and educational and informational activities; to offer services such as audits or training; and to create jobs, including for other people with disabilities. One example is the work of Justyna, who is the founder and president of a foundation that has been supporting people with visual impairments for many years:

I’m like a visionary. That is, there are things related to blind people that I want to change. And I often have an idea on how to change them. So I strive to achieve these goals, despite the fact that from time to time, or even very often, some people put stumbling blocks on my path. And so the foundation that I set up is a place that I use to carry out projects that are very important to me. (Justyna, 51)

A manager consistently implements her goals. She mobilizes all possible resources, “whether unpaid labor, real estate, financial resources, media attention or political support” (Roth, 2016: 41). Justyna continues:

Then I stopped working in this wonderful Labor Office, I still worked a little bit on contracts in [another organization – K.A.], but I found that on my own, and I also met a friend, and we came to the conclusion that you have to, you know, invest time in this, because otherwise you can’t get it going. […] So generally with money it was so that I, for the first few years, for accounting, for various things, for the premises, I just paid from my own resources. (Justyna, 51)

Ewa, on the other hand, after years of looking for a job or being employed at minimum wage, decided to set up her own business, where she provides accessibility and disability-related training:

Now, starting in 2020, I have my own business and this is how I have been working. And this company is also related to disability, as I do workshops, trainings and such stuff. […] And so I do think that my company is strongly rooted in activism, because I organize workshops with children, and with adults, about disability. (Ewa, 37)

For Ewa, having her own company is not only a way to maintain herself, but also a space for self-actualization and advocacy for persons with disabilities. Her company combines economic and educational (raising awareness about disability) aspects, demonstrating again how borders between activism and work can blur.

The leisure time activist

A leisure time activist places a very clear boundary between activism and work. Her activism is completely separated from her paid work. Although, if offered, she may be paid for her actions, she is not financially dependent on it, as her main source of income is work that is unrelated to activism:

For example, most of the projects I did, the coolest projects, were completely unpaid. Nobody made a penny out of it. Simply put, that’s a disadvantage too, right? After all, how much can you do for free. I have to get by too, right? So either I temporarily dial down my activities, because I have to earn my bread, especially now, with the situation the way it is, everyone just thinks about earning more, because prices go up, right? Anyway, here’s the issue, project-based salaries… You know that in two years this project will be gone, then what will happen to the employee after these two years? Will they have to look for a job all over again? And there’s this financial barrier, it’s difficult. (Sabina, 43)

Sabina is an example of an activist whose choice of becoming a leisure time activist resulted from the biographical work (Golczyńska-Grondas, 2014; Strauss, 2017) she had to do after experiencing mobbing. During her high school years, she was involved in developing an online community for persons with sensory disabilities. Then, during her university studies, she co-founded an association supporting education of persons with disabilities. Initially, she worked there for free. Over time, she took up a full-time job in the field, where she experienced mobbing from her supervisor.

And so I accepted being a victim, because I took him at his word that he was right. So he started treating me not so much from above, but really bullying. He would say: ‘prepare this report for me’. OK, I’m sending the report. ‘What is this?’ [prolonged silence] Or… [the respondent would say – K.A.] ‘Well, we’ve messed up, what can we do to remedy it?’. ‘Well, I need my windows cleaned, spring has come and my windows are dirty. If you clean my windows, then maybe we can turn a blind eye to this and move on together.’ Then he took advantage of every stumble we had. (Sabina, 43)

The behavior of the superior quoted above fulfils the definition of mobbing in the Polish Labor Code: humiliation, intimidation, persistent and prolonged harassment (Labour Code, Art. 94(2).OJ, 2023, item no. 1465). In this activist’s biography, mobbing at work was a watershed experience that impacted her perception of activism and led to its strict separation from paid work.

Mobbing certainly affected my life later on. As I approach such decisions in a different way now. I mean, as I would also go to a psychologist [to seek therapy – K.A.] later on to work through the whole situation. So… I sort of decided that I need to work out my own defence mechanism, so that if a similar situation happened to me in the future, I would know how to react. And I also think that I continue to sort of live in this process, that I’m an activist, that I’m just really certain of what I want and what I’m doing. As this whole submissiveness through this therapy has been… worked through, so to speak. (Sabina, 43)

There is a contradiction in this narrative. On the one hand, paid work is perceived as a gateway to financial independence. It is also perceived as a safeguard against potential abuse. As research suggests, dependence on the perpetrator – including economic dependence – is one of the major factors that increase women’s vulnerability to violence (Chirwa et al., 2020; Meyer et al., 2022). On the other hand, Sabina’s narrative shows that work can also lead to abuse from those in positions of power.

Maria’s narrative represents another case of a leisure time activist. She works at a transport company. In her leisure time, she is active in the social media and she writes a blog. She is also an ambassador in projects implemented by a foundation that supports people with mobility impairments in their rehabilitation process. This is how she describes her activism:

This is not my work, but some people believe it’s my work. I mean, professional work, that I praise them because they pay me for that. No, not at all. I simply don’t have to pay for what they offer me [disability-related services – K.A.]. I have money to support myself, because I earn it myself in a separate job, which is not related to social activities at all. If I were to work strictly in an NGO, believe me I would go crazy. It would mean for me to close myself in this bubble of disability. I very much dreamed of being on the open labor market. Despite the fact that I can’t leave the house, I work remotely and I’m fine with it. I don’t see myself as an employee of an NGO. I need no orders to see sense in it, I have to do it because I want to do it, not that it’s my daily bread and, for example, I go and the employer tells me to do something. (Maria, 28)

For Maria, her full-time job unrelated to activism is the result of the need to get outside the ‘disability bubble.’ She fears that work centered around mission will hijack her private life, which would destroy her ‘activism-work-life balance’ (Roth, 2016), depriving her of the joy of activism.

It seems that maintaining this balance in NGOs is a major challenge, mainly due to the fact that unlimited working time is ubiquitous among activists. As Ewa Furgał (2022: 135–136) notes, “Not only is there often more work to do than in the average company or public office, but also the involvement on weekends or more than full-time hours is usually taken as evidence of being a ‘genuine’ activist.”

Both Sabina and Maria note that being a leisure time activist is associated with the privilege of having a regular job that meets the needs of an individual and provides security and financial stability.

Conclusions

The aim of this paper was to study how activism and paid work are intertwined in biographies of female activists with disabilities and what strategies they use to combine or separate these two spheres of life.

The narratives surrounding activism suggest that for the interviewed women activism is treated as work, with financial issues not being a decisive factor for their activism, nor the main motivation to act. Their activism provides them with, first, a vast opportunity for further development – e.g., the development of social competencies and soft skills, such as assertiveness, leadership, advocacy, and organisational skills – as well as, second, social capital, including the development of a network of contacts with educational institutions, associations, and foundations.

The activism of the interviewees is strongly linked to the identity of a person with disability. Disability and identity often become a tool for activist work. Therefore, when doing educational activities, disability awareness trainings, or accessibility trainings, women act as self-advocates, often working on their own stories, and as experts.

Analyzing the collection of narratives, I identified four types of activists. Representatives of each of these types slightly differently approach “activism-work-life balance” (Roth, 2016: 36). As for the precarian activist, the full-time activist, and the manager activists, the boundaries between activism and paid work are fluid and blurred. The precarian activist takes on a lot of small jobs that – despite giving her a sense of meaningfulness and the opportunity to develop – do not provide a sense of security and financial stability, which prompts her to keep looking for more jobs. In such cases, precarious work can overshadow activism. In contrast, full-time activism within an NGO often extends well beyond the boundaries of paid employment, permeating various aspects of personal life. This form of engagement is not limited to professional duties, but is deeply intertwined with meaningful interpersonal relationships and a strong sense of community and belonging (Jędrzejewska, Grabowski, Możański, 2022). As a result, maintaining a clear distinction between work and private life becomes nearly impossible. The manager activist experiences the same dynamics. For her, acting for the good of the community is first and foremost a mission – often a major life project requiring the mobilization of resources, including financial ones.

Regardless of the adapted strategy, maintaining activism-work-life balance (Roth, 2016: 36) is a major challenge. A sharp boundary between activism and paid work, with the latter being the main source of income, is drawn by the leisure time activist. In such cases, the roles of an activist and an employee are clearly separated. Attitudes toward activism and work can evolve and change over the course of a lifetime. A person taking up a precarious job or a full-time job in an organization can decide to pursue her own project by setting up a company or establishing a foundation. Conversely, she may – e.g., due to difficult circumstances – stop doing activism and work at the same time. The women’s narratives clearly show transitions and turning points in biographies of activists.

In further research, it would be important to study the impact of other variables (such as the level of education, age, and the place of residence) on the strategies for combining activism and work, and see if these differ between men and women. Such studies would have to employ quantitative methods with standardized research tools (such as surveys), as it can be challenging to capture these relationships through interviews.

Acknowledgements

I would like to express my gratitude to Dr. Wojciech Figiel for translating this text from Polish into English.