Iina Järvinen¹, Minni Teerikangas², Mervi Issakainen³ and Kaijus Ervasti⁴

1 Introduction

As inequality and polarisation intensify, it becomes particularly important to focus on the realisation of rights, especially for individuals who may face an increased risk of vulnerability due to personal characteristics or life circumstances (Saari 2024, 172–205; Kawecki 2022). The risk of vulnerability refers to an increased risk of harm, exclusion, or violation of rights. It underscores the importance of rights because vulnerability often creates greater barriers to their realisation (Andorno 2016; Berg et al. 2025; Boenigk et al. 2021).

This article examines the barriers faced by people with epilepsy in Finland by combining empirical data and fundamental rights research. Epilepsy, a neurological disorder characterized by seizures, may impose certain limitations on daily life, yet it generally allows for a meaningful life. Therefore, epilepsy itself does not constitute a persistent problem, but it can have indirect impacts on an individual’s life. People with epilepsy are less satisfied with their lives than those without epilepsy, particularly people who experience seizures (Jacoby and Baker 2008). Additionally, people with epilepsy are often subjected to prejudice and stigmatising attitudes, which may, for example, hinder their opportunities for employment (Bishop and Allen 2001).

More specifically, epilepsy is a chronic neurological disorder caused by disturbances in the brain’s electrical activity. It is characterised by an enduring predisposition to generate epileptic seizures, which can vary significantly in duration, frequency, and symptoms. Cramps and swoons are the most well-known types of seizures, but absence or focal seizures, as well as visual or auditory symptoms, may also occur. In addition to epileptic seizures, the disease may include neurological, cognitive, psychological, or social problems of operating capability. Furthermore, the treatment may cause side effects. In Finland, approximately 0.5 percent of children and nearly 1 percent of adults suffer from epilepsy. In terms of prevalence and variety of symptoms, epilepsy can be compared to autism, which also manifests as an individual spectrum of symptoms and affects approximately 1 percent of the population (Fisher et al. 2014; Kälviäinen et al. 2020; Atula 2023; Metsähonkala 2025; Kamel and Cook 2009). Whereas the public debate on the autism spectrum has been lively in recent years, there has been no comparable discussion on epilepsy (Socada 2024).

The effects of epilepsy can be seen in various aspects of a person’s life and, consequently, living with epilepsy becomes multidimensionally linked to the legal system. The Constitution of Finland (CoF, 731/1999) guarantees fundamental rights that belong equally to everyone (Lavapuro, Ojanen and Scheinin 2011; Ojanen and Salminen 2019, 376–381). The fundamental rights system underpins the realisation of substantive equality, and it can be regarded as one of the welfare state’s most crucial institutional frameworks. It is not sufficient for individuals to formally possess equal rights; these rights must also be effectively realised (Cappelletti and Garth 1978; Loenen 2025, 38–74; Obstbaum et al. 2025). The realisation of fundamental rights is safeguarded both by ordinary legislation and by practical implementation, that is, by real‑world practices. In this article, the primary focus is on identifying the barriers that individuals living with epilepsy encounter in the realisation of their rights in everyday life.

In legal research, epilepsy has received comparatively little attention, both internationally and in Finland, with existing studies focusing primarily on the right to drive (Beran 2002; Beran 2008; Beran, Devereaux and Buchanan 2020; Devlin et al. 2012; Kass and Rose 2019; Ervasti et al. 2023). In social sciences, research on epilepsy has concentrated on issues such as stigma and prejudice faced by people with epilepsy (Baker et al. 1999; Lang et al. 2022; Scambler 2009, 33–43; Thomas and Nair 2011). A pilot study concerning the everyday lives of people with epilepsy has identified problems in, for instance, health care services and employment. As a result, various gaps in access to justice were revealed. (Issakainen et al. 2024.) Still, previous research has paid little attention to the legal context of the subject and, additionally, it has focused on a quantitative approach that does not capture the lived experience of people with epilepsy. This article builds on the pilot study employing quantitative methods (Issakainen et al. 2024) by adopting a qualitative, experience-based, and legally oriented approach to epilepsy.

According to Axel Honneth, prevailing forms of humiliation create barriers in individuals’ lives. Therefore, everyday experiences of injustice must be taken into account, and the existing structural deficiencies need to be critically analysed. On this basis, we pose the following question: What socio-legal barriers to recognition do people with epilepsy face? Furthermore, Honneth argues that social structures are always compromises, formed and transformed through struggles and disputes. Beyond exposing these barriers, it is crucial to identify possibilities for overcoming them. (Honneth 2004; Laitinen 2019, 173–176). Thus, we explore ways of overcoming the barriers from a pro-fundamental rights perspective. In this way, the research fills the gap concerning the rights of people with epilepsy and the realisation of those rights in practice. The objective of the research is, therefore, twofold: 1) to increase and structure understanding of the socio-legal barriers in the lives of people with epilepsy, and 2) to develop proposals to strengthen their fundamental rights.

2 Legal and Theoretical Framework

The theoretical framework of this article is grounded in Axel Honneth’s concept of recognition. It extends beyond mere identification; rather, it constitutes three distinct forms. First, recognition refers to the experience of care and affection within intimate relationships (love). Second, it encompasses acknowledgment of an individual’s contribution and significance within a social context, for instance, as an employee (social esteem). Third, recognition entails respect for individuals as citizens and rights-holders, emerging from the principle of equality (legal equality). Accordingly, recognition is mediated by various agents, including individuals, social groups, and institutional structures. (Honneth 2004; Laitinen 2019, 180–182).

The phenomenon of recognition is significant both in the everyday life of individuals and in relation to social structures and societal agency. Recognition fosters a sense of belonging that can only be experienced within social relationships. Experiences of being acknowledged, respected, and esteemed reinforce an individual’s positive self-conception and capacity to act within the social world. The various forms of recognition are interwoven: equal participation in groups and communities is closely connected to one’s status as an equal citizen and a full member of society, that is, legal recognition (Honneth 1995, 95–130).

In this article, legal recognition is studied from the perspective of fundamental rights. Fundamental rights refer to the rights guaranteed by the Constitution of Finland. Fundamental rights belong equally to everyone from birth until death. In many respects, they overlap and are congruent with the human rights provided in international human rights treaties. However, national fundamental rights are, in some respects, broader; that is, they ensure more rights compared to international human rights (Ojanen and Salminen 2019, 376–379).

Fundamental rights lie at the core of normative recognition. In addition to equality and non-discrimination (CoF § 6), they include, for instance, the right to receive indispensable subsistence and care (§ 19.1), the promotion of everyone’s right to housing (§ 19.4), the right to education (§ 16), and the right work (§ 18). Their implementation requires active measures from public authorities (Lavapuro, Ojanen and Scheinin 2011, 530). Therefore, some fundamental rights include reservation clauses requiring that the implementation of rights shall be provided in more detail by an Act (Neuvonen and Rautiainen 2015). Our research data consists of interviewees living in Finland, and we consistently focus on national fundamental rights. The fact that ordinary legislation plays a central role in the realisation of rights is acknowledged, yet the focus lies on individuals’ experiences and on examining these experiences in relation to the realisation of their rights.

The Constitution and its fundamental rights are at the top of the hierarchy of norms. Accordingly, each legal norm must be in accordance with the Constitution. A pro-fundamental rights interpretation of the law also extends to the practices of reality. (Lavapuro, Ojanen and Scheinin 2011). Reservation clauses highlight that the legal system not only establishes rights for individuals but also imposes obligations for their realisation. Thus, the question of recognition in relation to people with epilepsy becomes an interesting one. According to Axel Honneth, rights are not merely normative constructs but evolve through human practices. Therefore, it is essential to examine how individuals and communities create the conditions under which rights are either fulfilled or remain unrealised. (Järvinen, Neuvonen and Rautiainen 2020, 89).

3 Data and Methods

The empirical data consist of semi-structured, thematic interviews with people with epilepsy (N = 26). The data were collected in collaboration with the Finnish Epilepsy Association, through which the interview invitation was disseminated on their website, magazine and at events. The project leader conducted the interviews as face-to-face individual interviews between May 2023 and December 2023 across Finland. The interviews were mainly conducted at the interviewees’ homes, but some were conducted at university premises, at a restaurant, or in a park. The study has been approved by the Committee on Research Ethics of the University of Eastern Finland (statement 17/2023).

The interviewees formed a heterogeneous group in terms of place of residence and range of symptoms. The study involved 20 women and 6 men, aged between 16 and 70 years. Interviews provide information about individuals’ lives and experiences, which can be linked to legal dimensions. Studying the realisation of rights requires extending the analysis beyond sources of law. However, legislation is applied in the analysis to highlight its role in guaranteeing rights, rather than to conduct a provision‑specific analysis. Although the study includes insights from the few legal cases available on the topic, interviews constitute its primary data. Considering the research question and the objectives, the study applies qualitative analysis based on interviews (Liamputtong 2009). Therefore, doctrinal legal analysis falls outside the scope of the research task (cf. Revillard 2018).

Typically, interviews began with an open-ended question inviting participants to talk about themselves and their lives. Subsequently, participants were asked to describe their symptom profile and the perceived impact of epilepsy on their daily lives. This was followed by more specific questions concerning potential challenges and difficulties they had encountered in their everyday lives across different areas. In more detail, participants were asked about their everyday life: accessing services, education, employment, and mobility, as well as their ability to influence decisions affecting their lives. Questions also addressed experiences of prejudice or discrimination and their impact on identity and opportunities. Additionally, topics included factors affecting quality of life and meaningfulness, everyday support and social relationships, and the societal position of people with epilepsy. Finally, participants were invited to informally share their thoughts and to reflect on their experience of the interview.

The data were analysed using a combination of content analysis and a fundamental rights perspective. Initially, the data were reviewed to generate codes related to various forms of barriers to recognition, including engagement with social and health care services, mobility, and social interaction. Particular attention was given to barriers in social contexts and from a fundamental rights perspective. For example, if an interviewee described challenges in finding employment due to the disease, this was treated as a barrier in the analysis. The coded data were then categorised according to the legal dimensions of these barriers (see Liamputtong, 2009). Overall, the analysis is characterised by an interplay between empirical data and the legal and theoretical framework.

4 Results

4.1 Getting a Diagnosis and Identifying Needs for Support

In Finland, public authorities, that is the state, wellbeing services counties, and municipalities, are obliged to ensure adequate social and health care services for everyone (CoF § 19.3). Hence, legal recognition demonstrates considerable normative strength, ensuring equality. Legal norms generate expectations concerning equal access to services; nevertheless, the interviewees reported divergent experiences in this regard.

The initial step—or barrier—is the identification and diagnosis of epilepsy. Participants described varied experiences in the diagnostic process. For some, the diagnosis was straightforward and made promptly, whereas for others, it took a long time, for example, due to the diversity of symptoms:

“They always told me I had a panic disorder. … But no one ever said anything about epilepsy.” (P11)

Based on the data, the challenges in diagnosing appear to be linked to the fact that healthcare professionals do not necessarily possess sufficient knowledge or experience of the spectrum of epilepsy. Living without a diagnosis entails a wide range of challenges, both in managing the disease and in everyday life. The disease cannot be controlled without treatment (Kamel and Cook 2009, 9–16), and seizures affect everyday life holistically. In terms of acceptance, the interviewees’ accounts indicate that individuals diagnosed with epilepsy in adolescence tend to accept the diagnosis more readily than those diagnosed later in life. Acceptance of the diagnosis should be distinguished from quality of life, as previous research has shown that patients with a longer duration of epilepsy experience a lower quality of life (Edefonti et al. 2022). In any case, once diagnosed, the situation changes significantly.

After the diagnosis, people with epilepsy who participated in the study spoke quite positively about the healthcare services and the treatment of epilepsy they have received. The disease was monitored and the symptoms of epilepsy were treated. Despite the diversity of symptoms, health care services appear to focus mostly on treating the physical symptoms of epilepsy. In contrast, the potential impacts on mental and social well-being are often insufficiently recognised (cf. Allotey and Reidpath 2009, 118–122; Fiest et al. 2013). Some participants reported that epilepsy affects their mental health, and for some, this is accompanied by depression. These interviewees emphasised the importance of mental health treatment alongside epilepsy treatment.

“Cause that’s what happens… the person who’s sick gets all down about it, and then they just end up staying home, like what happened to me the first time.” (P14)

On the other hand, there are also contrasting experiences, for example, a neurologist suggested a consultation with a psychiatrist, but a person with epilepsy does not consider it necessary. Essentially, it is about recognising the patient's needs and preferences within the scope of the available services (cf. Honneth 2004, 361).

Services should be understood broadly as measures that support everyday functioning and thereby enhance quality of life. For instance, the Supreme Administrative Court of Finland (KHO) has held that an air‑source heat pump is a necessary device for a child with severe, difficult‑to‑treat epilepsy (KHO 2024:56). However, the cases examined by the Supreme Administrative Court have concerned individuals with severe disabilities who also have epilepsy (KHO 2006:66; KHO 2019:87). This highlights the fact that disability influences service needs and the scope of entitlements.

Obtaining a diagnosis and identifying needs highlight that legal recognition alone is insufficient. Practical recognition of both symptoms and individual needs is also required. Altogether, multiple barriers may hinder access to services. People with epilepsy need to be aware of the services that they are entitled to, and, after that, they must be able to apply for services. Still, according to the interviewees, it is not self-evident that the services will be granted, and complaining about a rejection requires competence as well. The quotations below illustrate the need for people with epilepsy to receive information about their rights.

“Cause half the time you don’t even know what services you could get, or what you’ve actually got the right to.” (P14)

“… they just don’t give enough info, like, if you need to know what kind of services or support are actually available, what you could get help with, no one really tells you. So you’re kind of left there feeling like you don’t know anything.” (P14)

Adequate social and health care services—and awareness of the rights related to accessing them—for people with epilepsy primarily refers to obtaining a diagnosis, followed by receiving the necessary and appropriate treatment and services, which may include both social and healthcare services. However, in this data, social services play a smaller role than health services, although people with epilepsy might have several service needs. For example, access to social services, such as a social counsellor, a personal assistant, or transportation services, can enable individuals to maintain an ordinary life.

4.2 Mobility and Driving Ban

The ability to move from one location to another—whether by car, bicycle, or public transportation—often encompasses more than the mere act of transportation, as it reflects broader dimensions of autonomy, accessibility, and social inclusion. It is a fundamental prerequisite for everyday life and restricting it may create barriers to numerous other activities and, at the same time, to the realisation of several fundamental rights. Still, there are barriers to moving from one place to another for a significant number of people with epilepsy. They face barriers in public transportation, cycling, walking, and, especially, driving bans that complicate many lives:

“And when I have a bad day, when it feels like nothing’s working out at all, like, I can’t do this, I can’t get around on my own. … It’s not impossible, but it just makes a lot of things harder.” (P7)

The need for mobility support services is widely recognised as significant but, nevertheless, entitlement to such services cannot be taken for granted. There is no separate regulation on mobility support services for people with epilepsy; instead, eligibility is determined according to the Disability Services Act (675/2023). To be entitled to the services covered by the Act, one needs to suffer from severe epilepsy, comorbidities, or other injuries or diseases that make mobility difficult. Consequently, people with epilepsy face difficulties in applying for and obtaining mobility support services. (cf. KHO 2018:64.) For example, an interviewee living in an area without public transportation received a negative decision regarding transport services based on the assumption that the person is expected to use public transport.

When it comes to driving, minimum standards of physical and mental fitness for driving a power-driven vehicle are defined in Annex III of Directive 2006/126/EC of the European Parliament and of the Council on Driving Licences. In Finnish legislation, the Directive on Driving Licences is implemented by the Driving Licence Act (386/2011), which requires the licence to be withdrawn if the conditions for issuing it are no longer met (§ 15). The Driving Health Assessment Guidelines, issued by the Finnish Transport and Communications Agency (Traficom), specify the driving ban. In many cases, the driving licence can be issued after a 12-month seizure-free period. (Traficom 2021, 29–30).

National legislation may be stricter than the Directive. In a case decided by the Supreme Administrative Court, an individual was issued a driving ban without further clarification. However, the person fulfilled the health requirements set out in the Directive, and the Supreme Administrative Court annulled the driving ban. (KHO 2019:17). The Supreme Administrative Court has also stated that the transitional provisions and health requirements of the Driving Licence Act are subject to interpretation (KHO 2021:164).

Based on the interviews, driving bans affect people with epilepsy in different ways. If a driver's licence has never been issued, it is easier to accept its absence. In contrast, prohibiting the right to drive is perceived as a tough and unjust, freedom-limiting act. When one receives a diagnosis in adulthood, a driving ban can be more shocking than the diagnosis itself. According to the principal rule, the driving ban is valid for one year at a time, regardless of whether there are seizures or not. Thus, the Driving Licence Act and the assessment guidelines established to support the Act’s application are also quite inflexible and do not recognise the characteristics of epilepsy:

“Well, one more thing I wanna say is that when they take your license away for a year because of something like that—and now they’re saying that if I have another seizure, the clock resets. … I just can’t take it anymore. I think it’s wrong to punish someone for that. There should be some kind of compromise.” (P11)

In other words, driver's licences can be banned under the Driving Licence Act even if epilepsy is not severe (cf. KHO 2012:135). Furthermore, if a person has no other diseases or is not disabled, they are not entitled to mobility support services under the Disability Services Act. Thus, a person with epilepsy falls into a gap between the Driving Licence Act and the Disability Services Act, being left to rely on informal support and personal arrangements. This is problematic for the realisation of fundamental rights, such as educational rights and the right to work.

Several participants described that a driving ban can complicate possibilities for studying and working. First, it completely excludes some trades. Secondly, it may completely preclude going to work or study. Either there is no public transport, or its use excessively prolongs the journey, or the time spent. Third, a driving ban may limit the types of work tasks that can be performed. Particularly, the first two also extend earning opportunities, and thus to more areas of life. Finally, difficulties in transportation also affect leisure time, social relations, and family life (Beran 2009, 103–104).

In addition to driving a car, epilepsy can also make it difficult to cycle and to use public transport. In these cases, symptoms of epilepsy and the place of residence play a crucial role. Cycling is a meaningful way for some interviewees to move from one place to another. For some people, cycling is not an option because of long-lasting absence seizures. In remote areas, distances may be unreasonably long for cycling. Accessibility of public transport depends on the symptoms of epilepsy, and availability depends on the place of residence. Even if public transport is available, symptoms may restrict access to it. If the seizures are severe and repetitive, the threshold for using public transport increases. In smaller and more remote locations, public transport services may be entirely absent. Freedom of movement includes the freedom to choose where to live (CoF § 9.1). Accordingly, it is not justified to expect that a person with epilepsy will move to a place with good connections to public transport because of the disease. Nevertheless, for some, dependence on public transport can influence choosing a place of residence:

“what really gets to me is that I don’t wanna be tied to public transport, but since I don’t have many options, I kinda have to live in the city.” (19)

It thus appears that, in terms of mobility, people with epilepsy lack legal recognition. If they have a driving ban and are not entitled to transport support, people fall into a gap created by legislation. This has adverse implications for the realisation of fundamental rights.

4.3 Discrimination and Unfair Treatment in Education

Epilepsy’s effects on the ability to study are highly individual. If epilepsy is frequent and severe, some fields of education may be excluded. However, it is not a legal issue if certain fields of education are excluded due to epilepsy itself. If, on the other hand, epilepsy indirectly causes barriers to education, the matter becomes a legal one. Nevertheless, legal norms guarantee educational rights for everyone. Educational equity is promoted, for example, by providing learning support within compulsory education.

First, everyone has the right and obligation to basic education (CoF § 16.1). Compulsory education lasts until the age of 18 and, therefore, vocational education and upper secondary school are also part of compulsory education until the age of majority. After compulsory education ends, everyone has the right to education in accordance with their abilities and special needs (CoF § 16.2). The right extends to the upper secondary education as well as higher education. Abilities and special needs must be interpreted in terms of substantive equality (Kalenius, Rautiainen, and Järvinen 2022, 84–90). Hence, there is a need for active measures to place everyone on an equal footing and to realise educational rights regardless of, for example, health status. To ensure the realisation of the educational rights of people with epilepsy, appropriate support mechanisms are required. When something initially appears unfeasible, legal norms not only provide guidance but also impose an obligation to explore how it might be made feasible.

Constitutional educational rights are broadly safeguarded by ordinary legislation. At the basic and upper-secondary levels, which fall under compulsory education, learning support is regulated by law. The Basic Education Act (628/1998) stipulates provisions concerning both support for learning and support for school attendance (Chapter 4a). The right to support measures arises when a pupil encounters difficulties in participating in teaching or completing their studies (§ 20a, subsection 1). Group-based support measures, such as remedial teaching and instruction provided by a special education teacher, constitute primary forms of support (§ 20a, subsection 2; § 20b). If these are deemed insufficient, the pupil becomes entitled to individual support measures based on their specific needs (§ 20a, subsection 4; § 20c). The right and obligation to basic education presuppose that the conditions for participating in teaching are guaranteed (cf. KHO 2021:130). As a last resort, deviations may be made from the scope of basic education or from the objectives set in the curriculum (§ 20h).

At the upper-secondary level, the forms of support are more limited. In vocational education, the right to special support arises due to verified learning difficulties, a disability, an illness, or another comparable reason (Act on Vocational Education and Training 531/2017, § 64). The Act also includes provisions on intensive special support, for example in situations where a pupil has significant learning difficulties or a severe disability (§ 65). The Act on General Upper Secondary Education (714/2018) likewise provides for the right to learning support (§ 28). Due to learning difficulties or another comparable reason, a student is also entitled to special education (§ 28a, subsection 1). At the higher education level, there are no measures for learning support regulated by law (see Universities Act 558/2009; Universities of Applied Sciences Act 932/2014).

The data indicate that, despite the existing regulation, people with epilepsy encounter discrimination and inappropriate treatment in educational settings. However, this does not necessarily relate to the need for learning support but rather to the attitudes and actions of individuals. In this context, education providers and individual teachers hold significant power and responsibility. Thus, the focus shifts from legal recognition to social recognition and responsibility. However, some people with epilepsy have experienced discriminatory and unfair treatment by teachers:

“So yeah, I had to redo a whole course from the beginning just ’cause I had a seizure during class, and they had to take me to the hospital in an ambulance.” (P22)

“And then when I started vocational school, the teachers were like, yeah, you can’t do this or that if you’re alone, and you’ll need a personal assistant. I was like, can I even breathe on my own?” (P26)

The data show that students with epilepsy may encounter inappropriate behaviour. As stated, according to section 16.2 of the Constitution and the legislation through which it is implemented, individual needs must be considered in education. This provision should be interpreted to mean that, for example, diseases create individual needs. These needs must be acknowledged appropriately when planning, implementing, and assessing studies. Based on the interviewees’ experiences, epilepsy has various impacts on their studies: in addition to seizures, doctor visits, for example, lead to absences.

The situation becomes unreasonably difficult for a person with epilepsy if they face discrimination from both teachers and students. Bullying and discrimination do not occur only in the relationships between student and teacher but also among students themselves. Other students might adopt a sceptical attitude toward a person with epilepsy. Such attitudes manifest, for instance, as avoidance and exclusion: “… school was tough. A lot of the time I got left out.” (P6). Other students may fear seizures or hold the misconception that epilepsy is contagious.

Additionally, studying may involve internships, and for students with epilepsy, securing an internship position can require more effort due to discriminatory practices. Based on the data, people with epilepsy often need to consider whether studying is worthwhile, as they are aware of employers’ attitudes. Personal motivation and enthusiasm for studies and work can be undermined by external factors, which are especially evident in working life.

Attitudes toward discriminatory practices vary individually. Some seem to accept them as an inevitable part of life, while others seek to explain and talk about their condition in order to be understood. The discrepancy between lived reality and legal norms highlights the differences between forms of recognition. Educational rights and the legislation implementing them do not guarantee equal opportunities, but their realisation requires recognition also in everyday groups and communities.

4.4 Finding Employment and Working

People with epilepsy face barriers to entering and remaining in working life. This finding aligns with previous research, which shows that employers' attitudes constitute barriers to employment for people with epilepsy (Jacoby et al. 2005; Bishop et al. 2007; Smeets et al. 2007). According to our study, people with epilepsy have sometimes faced bullying, such as vituperation and criticism, in working life. Legally, everyone has the right to a livelihood through employment, occupation, or commercial activity of one’s own choice, and the public authorities shall promote employment and work toward guaranteeing everyone the right to work. Equal treatment and non-discrimination apply to recruitment, employment, and dismissal. Thus, the requirement for equal treatment must be upheld continuously, starting from recruitment. (CoF § 18; HE 309/1993, 67-69; cf. Karjalainen and Ylhäinen 2021).

However, the first barrier may already be encountered when applying for a job. For some interviewees, access to work is blocked at this stage. Interviewees have spoken openly about their condition, and sometimes they have felt that this openness has had a negative impact:

“… I started to realise that employers’ attitudes might actually affect my future after all.” (P5)

“The latest thing was that I was told… well, not even directly to me, but they told my supervisor that they’re not taking me back because of the seizures.” (P6)

It has also been difficult for some individuals to find a job corresponding to their education because of employers’ attitudes. Again, the barrier lies at the social level. Difficulties in getting a job cause constant feelings of frustration and disappointment. They can even make people feel as though they are being forced to retire:

“The last time I worked was before Christmas. And yeah, it really messes with your head—like, am I just completely useless?” (P12)

“I’ve now sent in a disability pension application. I don’t wanna have to apply for 3–4 jobs a month and just get disappointed every time.” (P6)

Based on the experiences of the participants, employers do not necessarily mention epilepsy directly as a reason for not getting a job or being dismissed. It seems typical for an employer to provide an ostensibly acceptable reason for not hiring someone with epilepsy. Such situations often occur invisibly, leaving the person with epilepsy to deal with them alone. Conversely, recruitment-related discrimination may also occur in a direct and immediate manner as illustrated by the quotation below.

“… So they handed me the job contract, put it on the table for me to sign, and when I mentioned my disease, they just pulled the paper right out from under my nose.” (P1)

On the other hand, not all people with epilepsy are able to work. In such situations, participants described experiences of being subjected to unfair treatment. People with epilepsy may be considered lazy or unwilling to work because they are unemployed. Paradoxically, they also encounter criticism when they are employed:

“But yeah, I’ve even gotten comments while working in healthcare like, ‘Why are you even working?’ … Like, just because I have epilepsy, I’m supposed to stay at home.” (P23)

In some cases, various rehabilitation services may be relevant for people with epilepsy. These services are regulated by several laws; for instance, the Act on the Social Insurance Institution of Finland’s Rehabilitation Benefits and Rehabilitation Allowance Benefits (566/2005) contains provisions on vocational rehabilitation. Its purpose is to support and improve a person’s capacity for work and earning when they have an illness that impairs their ability to work or study (§ 6.1). However, as in the case of education, discrimination and inappropriate treatment appear to be the main barriers to employment. That is, barriers that impede access to working life seem to be connected to human behaviour and attitudes. Ultimately, these barriers also affect people with epilepsy on a personal level, potentially leading to feelings of discouragement, frustration, and sadness when encountered repeatedly. One interviewee described this as follows:

“I just wanna be honest and say I’ve been diagnosed with epilepsy, and we’re still trying to figure out the right meds. Then it’s like, ‘Thanks for your interest.’ And I totally get it. Even though there’s a huge staff shortage in healthcare. But that kinda makes it hit even harder. It’s frustrating, like I’m not good for anything anymore. Like, that’s it. And it makes me sad.” (P12)

In this way, social barriers can transform into emotional barriers, illustrating the interdependence of various forms of recognition. Legal norms are not helpful if one has no sense of being acknowledged and respected. The results confirm Honneth’s notion that the recognition given by individuals and groups is essential not only for self-esteem but also for the realisation of fundamental rights.

4.5 Discriminatory Practices as a Cross-Cutting Theme

The results reinforce Honneth’s observation that the issue is not merely about eliminating inequality. It is essential to recognize rights and to ensure that the rights of individuals in vulnerable positions are effectively realized (Laitinen 2019, 180). In Honneth’s words, it is about avoiding humiliation and disrespect and moving toward dignity and respect (Honneth 2004). This occurs in relationships and social contexts, while legislation creates the normative framework.

The results show that, despite regulation, the lack of social recognition constitutes a major problem in the lives of people with epilepsy. A negative or suspicious attitude can lead to bullying or exclusion, that is, discrimination. In many cases, a lack of knowledge underlies discriminatory practices and prejudices. Based on the data, people with epilepsy constantly face a lack of understanding of their disease. Prejudices persist across various domains, including education, employment, and broader social life. Exclusion also occurs in relationships: siblings or friends can exclude a person with epilepsy, reduce communication, or even terminate the relationship. Such exclusion does not only happen in relationships but also within health care services. The spectrum of epilepsy might be poorly understood, and it is considered a ‘falling sickness’ causing tonic, atonic, or clonic seizures. In fact, it seems that a lack of knowledge, incomprehension and discriminatory practices are intertwined, causing multiple barriers for people with epilepsy.

The barriers form a kind of obstacle course: as one overcomes a barrier, another appears along the way. For instance, if one is not allowed to drive a car or to get mobility support services, it can make working impossible. Despite the barriers, it is legally indisputable that no one shall be treated differently from other people on the grounds related to the person, such as health status (CoF § 6.2). The Non-Discrimination Act (1325/2014) clarifies and specifies the content of the fundamental right to equality (CoF § 6). Its purpose is to promote equality and to prevent discrimination (§ 1). As with the fundamental right to equality, it includes a prohibition of discrimination based on health status, disability, or other personal characteristics (§ 8.1). Discrimination can be direct (§ 10) or indirect (§ 13) and, additionally, harassment and denial of reasonable adjustments constitute forms of discrimination (§ 8.2). Reasonable adjustments refer to active measures that ensure equality for a person with disabilities. Furthermore, authorities, education providers, employers, and providers of goods and services all need to ensure equal access to education, work, and generally available goods and services, as well as to manage their work tasks and to advance their career (§ 15). The Non-Discrimination Act allows positive measures, that is, a proportionate differential treatment, aiming to promote substantive equality or to prevent or remove the disadvantages attributable to discrimination (§ 9).

According to the Act, education providers and educational institutions shall evaluate the implementation of equality in their activities and take necessary measures to promote equality (§ 6.1). Employers are also obliged to act in accordance with equality regulations, regardless of whether they operate in the public, private, or third sector. Employers must also assess the implementation of equality in the workplace and consider the requirement of non-discrimination, both in recruitment and in the workplace (§ 7.1). Additionally, some people with epilepsy may be covered by the Disability Services Act and, therefore, entitled to mobility support services. Similarly, reasonable adjustments could also safeguard the equal status of people with epilepsy.

When section 6 of the Constitution is interpreted together with section 22, the public authorities are required to guarantee the realisation of equality. This is further supported through a number of statutory provisions in ordinary legislation. For instance, the public authorities are obliged to assess and promote equality under the Non-Discrimination Act (§ 5). Public services, such as social and health care services, education, and decisions made by the authorities, must strive for practices and solutions that promote equality and fulfil fundamental rights as completely as possible. Nevertheless, fundamental rights regulation does not extend to relations between individuals. Still, the public authorities must guarantee the protection of private life, which includes the right to establish and maintain relations with other people without the interference of public authorities (CoF § 10.1). Overall, it is not sufficient to merely refrain from violating rights; these rights need to be realised.

5 Realisation of Recognition in the Lives of People with Epilepsy

We have previously concluded that discrimination and a lack of knowledge and understanding of epilepsy are intertwined. They also tend to exclude a person from various social circles, education and work, thus serving as examples of a lack of recognition. Despite this, people with epilepsy also have positive experiences that strengthen their sense of recognition. Interviewees’ positive experiences are significantly shaped by acceptance and the fulfilment of individual needs (Honneth 2004, 361).

According to participants, the Finnish Epilepsy Association and its local epilepsy associations are perceived as generous and valuable in multiple ways. However, the interviewees were recruited with the help of the association, so it can be assumed that they are among its more active members. It should be noted that public funding is a prerequisite for the functioning of the Finnish Epilepsy Association, and it constitutes one way of fulfilling responsibilities of public authorities. In 2025, the funding of the Finnish Epilepsy Association consisted of a grant awarded by the Funding Centre for Social Welfare and Health Organisations (STEA) (88%) and the organisation’s own fundraising (12%). During the current government term, however, substantial cuts have been made to STEA funding. Consequently, the grant allocated to the Finnish Epilepsy Association was reduced by a total of 16 percent between 2024 and 2025 (Epilepsialiitto 2025; 2026).

Public funding makes it possible for associations to engage in activities that contribute to the formation and maintenance of social relationships and serve as a means of social influence:

“Otherwise, yeah, this whole association stuff, and even the union’s activities, offer a ton of these social circles. And then, on the other hand, I’ve gotten to know a bunch of other organisations here in the city; and if I wanted to, I could probably get myself into quite a few more influencer-type roles through them too.” (P5)

“… since I got involved, I’ve felt that any new researched info that could be even a little bit useful for society, well, that kind of knowledge needs to be shared somehow.” (P4)

Associational activities provide opportunities for people with epilepsy to connect with peers, receive peer support, and access experiential knowledge shared by others with similar experiences. Furthermore, many individuals actively engage in volunteer activities within the association, for example as peer-to-peer instructors:

“It’s really generous. You don’t get paid for it. You do it voluntarily. Like, if someone has epilepsy, and I talk with them about it, both of us get something out of it… That person, they might feel better. Like, they can keep going with their life, ’cause they hear from me that yeah, you can live a good life with epilepsy.” (P2)

Alongside public financial support, volunteer work is essential for the functioning of third-sector organisations. Currently, the dissemination of information—and thereby the promotion of understanding and equality—still appears to rely largely on the initiative and activity of individuals with epilepsy themselves. As this is connected to the freedom of expression, including the right to express, disseminate, and receive information and opinions (CoF § 12.1), it implies that ensuring the realisation of fundamental rights often demands active effort from those living with epilepsy. This, in turn, is intertwined with the willingness to be active and to influence the development of better services for people with epilepsy in the future:

“No one else is gonna lift our tail but us. And we’ve gotta try to share that knowledge with people who don’t really understand us.” (P1)

“… if it helps someday, I don’t care if it’s in a year or five or ten, as long as someone else can get help from it, that’s what matters most to me.” (P21)

Some interviewees seek to influence public perceptions by disseminating information, thereby aiming to improve the societal status of people with epilepsy. They express a desire for greater visibility of epilepsy and those affected by it—not only to enhance awareness but also to ensure their own safety. Furthermore, they hope for more respectful and equal treatment of people with epilepsy, both within the healthcare system as patients and in society as individuals.

In addition, members of the associations receive an epilepsy-related periodical, which is regarded as an important channel for information dissemination. Thus, the associations play a dual role in both receiving and distributing information. Participation in this communicative process can also foster a sense of meaningfulness among members.

“Even though I felt tired, I was still glad I got to be the one who passed the information along.” (P4)

Taken together, associational activities express perceived acknowledgement and esteem—that is, recognition. The role of social recognition is highlighted, but it is also closely related to fundamental rights. The Constitution of Finland safeguards associational activities by guaranteeing both the freedom of association and the freedom of assembly as fundamental rights (CoF § 13). Everyone has the freedom of association, which entails the right to form an association without a permit, to be a member or not to be a member of an association and to participate in associational activities (CoF § 13.2). In addition, associations are regulated in more detail by law, particularly in the Associations Act (503/1989). Furthermore, these issues concern not only the freedom of association but also the educational rights and freedom of expression. The right to access information is a part of educational rights and, more specifically, part of the right to self-improvement (CoF § 16.2; Järvinen 2023). The right to access information and freedom of association are further linked to freedom of expression (CoF § 12.1). This demonstrates the importance of each form of recognition.

6 Concluding Discussion: Reinforcing Recognition

The article highlights the tension between legal norms and lived reality and, consequently, underscores the importance of different forms of recognition. When examining the findings, it is important to bear in mind that the study focused primarily on barriers. Based on the results, there appears to be a lack of recognition, especially at the level of social relations. Those at risk of vulnerability often face discrimination, which may ultimately result in exclusion and become a barrier to inclusion (Anderson and Honneth 2005). The lack of recognition is therefore problematic, as it diminishes individuals’ sense of agency and participation, which are crucial to positive self-conception and the ability to act in society. However, forms of recognition can be improved and, from a legal perspective, even ought to be improved.

The article demonstrates that the heterogeneity of epilepsy has legal significance. For example, whether a person falls within the scope of the Disability Services Act determines which services they are entitled to. At the same time, however, even being covered by the Act does not necessarily guarantee the realisation of one’s rights, as the case law of the Supreme Administrative Court shows. Nevertheless, according to the results, legal recognition is in relatively good standing. In Finland, fundamental rights broadly safeguard, among other things, rights related to education and employment. Equality legislation aims to ensure that the rights of those in vulnerable positions are upheld. One of the most significant issues identified in this article concerns mobility, as it is not comprehensively guaranteed by law. As Honneth emphasises, rights must also be realised in practice. The barriers faced by individuals with epilepsy are therefore more closely connected to real-life circumstances—that is, the fact that these rights are not always fully realised.

Our finding that people with epilepsy may face challenges in gaining recognition across multiple dimensions is consistent with previous research findings (Issakainen et al. 2024). Such challenges may emerge as early as the point of diagnosis, and are often followed by insufficient access to social and health care services. In terms of mobility, the driving ban constitutes a major barrier, compounded by the lack of mobility support services. Furthermore, people with epilepsy may face discrimination in both educational and employment contexts. The article demonstrates that even though legislation safeguards equality and its preconditions, it is ultimately the actual practices of, for example, education providers and employers that determine how the regulatory framework is realised in practice.

Our analysis indicates that recognition of people with epilepsy is largely enabled through the freedom of association. Currently, the role of associations in promoting citizens’ well-being is increasingly topical. As a result of cuts in public funding for social and health care services, as well as other welfare services, civil society’s role in guaranteeing subsistence and care is expanding (Soste 2025). At the same time, the third sector is also facing funding cuts and, consequently, the conditions for association activities are increasingly under threat.

According to the interaction model for fundamental rights, positive developments in one domain often generate beneficial effects in others. For instance, mobility can significantly enhance the realisation of other fundamental rights, such as the rights to education and employment. Furthermore, employment provides a workplace community, and thus a social reference group, as well as a livelihood. Economic resources, on the other hand, enable a decent standard of living, leisure time, and family life. Similarly, if one is excluded from one area, such as a hobby, it is more likely to be excluded from others. This emphasises the importance of interaction between fundamental rights (cf. Järvinen 2023, 220–221, 346–347.) The public authorities shall incessantly guarantee fundamental rights (CoF § 22). Alongside the responsibility of public authorities, the private sector has an obligation to act, at the very least, without violating fundamental rights.

This obligation tends to create a tension between law and lived reality when rights are not, in fact, completely realised. For recognition to be fully achieved, legal recognition must be complemented by recognition within social relations, as emphasised by Honneth’s theory of recognition. The article demonstrates that discriminatory practices permeate all barriers. In other words, recognition may not materialise at the level of social interaction. The mere existence of rights is not sufficient, just as it is insufficient when fundamental rights remain only partially fulfilled.

We concur with Honneth that social recognition plays a crucial role in shaping inclusion and participation. Failure to effectively enforce rights may result in social exclusion and experiences of non-participation. In terms of reinforcing recognition, four key findings can be identified: the importance of (1) understanding the spectrum of epilepsy, (2) recognition on a personal, social, and legal level, (3) identifying needs for support and (4) providing support based on points 2 and 3, so that the barriers do not emerge in the first place.

Based on the study, we present proposals to strengthen the recognition of people with epilepsy from a pro-fundamental rights perspective. Most importantly, discriminatory practices need to be replaced with more inclusive practices to ensure better alignment between fundamental rights, legislation, and real‑world practices. First, it would be reasonable to consider extending mobility support services to people with epilepsy who are not covered by the Disability Services Act. Second, individualised and needs-based reasonable adjustments are essential in both education and working life. Third, facilitating access to personal assistance services is important to ensure, for example, the opportunity to engage in meaningful leisure activities. To implement the previous proposals, stakeholders across various systems must be informed about both epilepsy and fundamental rights, including the obligation to guarantee fundamental rights. Comprehensive knowledge and awareness of epilepsy are crucial for ensuring equal treatment. Moreover, emphasis should be placed on recognising opportunities rather than focusing solely on limitations.

The previous proposals contribute to narrowing the gap between legal norms and lived reality and, as a result, foster participation. They show that the reinforcement of recognition operates across multiple dimensions. To conclude, the article confirms Honneth’s notion that forms of recognition are intertwined: equal participation in groups and communities is connected to legal recognition and to the status of being an equal citizen and a fully entitled member of society. Recognising opportunities and identifying support needs often requires the involvement of the public authorities and various communities, while the fundamental rights framework both guides and obligates efforts to promote equality. Ultimately, it is up to the personal and community aspects to act in an inclusive manner.

Funding

The research has been funded by The Strategic Research Council (OBaMa, grant number 365730), established within the Research Council of Finland, and Oikeutta potilaille säätiö sr.

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