Introduction
You must move over to an examination table that is way too high, and it’s not possible even if I have a sliding mat with me. But I still have to have like two people lift me up. And they are not particularly accommodating either. And it happens almost every time I move to an examination table.
This article explores how people with disabilities encounter and navigate uncertainty within the Swedish healthcare sector. Previous research has highlighted that individuals with various forms of disability often interact with healthcare professionals who lack specific knowledge about their conditions (Colorafi et al. 2021; Matin et al. 2021). These limitations have been characterized as a form of medical paternalism, where the professional’s knowledge is emphasized over the patient’s knowledge (Matin et al. 2021). Within disability research, this displacement can be viewed as part of the medical model’s objectification of the individual patient (e.g., Shildrick 2009; Shildrick 2012; Thomas 2007). However, what is often overlooked in this analysis is the understanding of barriers not as isolated entities but as interwoven material and immaterial objects, elucidated through a sociomaterial perspective (e.g., Goodley et al. 2021).
In this context, uncertainty refers not only to the unpredictability of healthcare outcomes or access but also to the patient’s experience of navigating unclear procedures, inconsistent support, and sometimes fragmented systems. It manifests through both tangible infrastructures, such as examination tables that are too high or barriers in public transport, and intangible dimensions. The latter can include anxiety and ambiguity regarding the healthcare visit. Therefore, recognizing uncertainty allows for a more nuanced analysis of how people with disabilities encounter and negotiate inaccessibility when seeking care.
By examining the opening quote from one of the women interviewed in a research project on societal accessibility shortcomings for individuals with disabilities, we can, from this sociomaterial perspective, observe that both material (e.g., examination table) and immaterial (e.g., emotions) relations are central to understanding how accessibility is perceived in this context. In addition, they are likely interwoven in this context and cannot be understood separately. In this article, I will relate these findings to a critical disability perspective, strongly influenced by a sociomaterial approach, to develop an analytical lens for exploring barriers within healthcare interactions between people with disabilities and healthcare environments, encompassing both healthcare professionals and material aspects such as the examination table mentioned in the opening quote.
I use a critical disability perspective to better understand the uncertainty experienced by individuals, such as the woman interviewed, when seeking care. Concurrently, this form of materiality has become central to the development of critical disability studies in recent years (Feely 2016; Flynn 2017; Goodley et al. 2019; Goodley et al. 2021; Hansson 2022). Therefore, I argue that critical disability studies can utilize the sociomaterial perspective to focus more on these infrastructures within hospitals, which, when related to healthcare professionals who lack specific knowledge about disabilities, generate uncertainty and inaccessibility through barriers. The general lack of consideration for sociomaterial aspects within critical disability perspectives is problematic for several reasons, which will be elaborated upon in the following sections. This article examines a critical disability perspective based on interviews conducted with 15 people living with disabilities and their experiences of seeking care in the healthcare sector, aiming to answer the following questions:
What kind of embodied experiences of liminality do people with disabilities encounter in relation to healthcare?
What barriers do people with disabilities face in healthcare?
How do they navigate these barriers and other health inequalities within various healthcare spaces?
In what ways do these barriers create uncertainties in everyday life for people living with disabilities?
These questions align with international agreements that form the foundation of the field of disability and health equity. In an international comparison, the World Health Organization (WHO) highlights that health inequities are significant among persons with disabilities, who face twice the risk of developing conditions such as depression, stroke, or poor oral health, and have a shortened lifespan compared to other groups in society (World Health Organization n.d.; see also Gréaux et al. 2023; Wolbring and Deloria 2024). Similar observations were made during a hearing held by the European Economic and Social Committee (EESC) on March 7, 2023. This stark reality undermines the ambition of reaching the Sustainable Development Goals and global health priorities aimed at ensuring health for everyone.
These identified barriers are not merely abstract challenges. In the context of this study, they serve as critical entry points for understanding how systematic barriers are reproduced in everyday healthcare encounters. Recognizing the significance of these barriers is essential for better understanding how people with disabilities manage uncertainty and thus sheds light on the lived realities behind statistical disparities.
Previous Research: Barriers in Healthcare
Previous research has highlighted various barriers in healthcare for people living with a disability (Colorafi et al. 2021; Kirschner, Breslin and Iezzoni 2007; Lagu et al. 2022; Matin et al. 2021; Yee and Breslin 2010). In relation to this research within the disability field, a barrier refers to any physical, structural, communicative, or attitudinal obstacle that limits or prevents equitable access to healthcare services for persons with disabilities. In a review study aimed at examining barriers to accessing healthcare services for women with disabilities, researchers identify three types of barriers (Matin et al. 2021): sociocultural, financial, and structural. The first type, sociocultural, includes the person being subjected to negative attitudes, being ignored, impoliteness, abuse, violence, among others. The second is financial and includes aspects such as poverty and high transportation costs. The last type, structural, includes, for example, inaccessible equipment and transportation facilities and a lack of knowledge about life with disabilities. To establish a comprehensive understanding, these need to be viewed as interlinked. In a UK study focusing on access to healthcare for men and women with disabilities, transportation, additional costs (such as exorbitant treatment costs), and long waiting lists were identified as the most problematic barriers (Sakellariou and Rotarou 2017). Other studies have highlighted issues such as the lack of safe methods for transferring patients to examination tables (Lagu, Griffin and Lindenauer 2015), as exemplified in the introductory quote.
These barriers risk creating health inequities, and WHO identifies four contributing factors: (1) structural factors such as ableism, stigma, and discrimination; (2) social determinants of health such as poverty; (3) public health interventions, such as those aimed at increasing physical activity and reducing alcohol consumption, which do not always include people with disabilities; and (4) barriers within the health system. Regarding the latter, WHO notes:
For example, a lack of knowledge, negative attitudes and discriminatory practices among healthcare workers; inaccessible health facilities and information; and lack of information or data collection and analysis on disability, all contribute to health inequities faced by this group (World Health Organization n.d.).
In addition, a 2023 EESC report lists the following barriers when a person with disabilities needs healthcare: high treatment costs, limited access to transportation and healthcare services, widespread stigma, and a healthcare workforce often not adequately trained to address disability-related needs.
What emerges from these WHO and EESC studies is that barriers vary greatly, which could be related to how different countries organize their healthcare systems. For instance, studies conducted in the United States (e.g. Kirschner, Breslin and Iezzoni 2007; Yee and Breslin 2010) often emphasize financial barriers. In contrast, research from countries with universal healthcare systems, such as Sweden, tends to highlight organizational and attitudinal barriers (e.g. Lagu et al. 2022; Matin et al. 2021). Although previous studies have advanced our understanding of inequalities in healthcare access for people with disabilities, it is important to highlight the gap that remains regarding material and immaterial relations. These relations encompass not only factors such as infrastructure, policy frameworks, and economic resources but also elements like social norms and professional attitudes.
Considering the diversity of experiences among individuals with varying disabilities and intersecting identities is essential. While physical barriers, such as inaccessible examination tables, can hinder access for some (Lagu, Griffin and Lindenauer 2015), others may face communicative or attitudinal obstacles. The concept of intersecting identities is particularly important, as research highlights that women with disabilities are at increased risk of experiencing impoliteness, abuse, and violence (Matin et al. 2021). Moreover, individuals who belong to racialized or socioeconomically marginalized groups may encounter additional disadvantages. An intersectional approach (considering factors such as disability, gender, race, class, and age) is central for understanding the complex and varied barriers faced by a diverse disabled population.
Theory: A Sociomaterial Perspective
Regardless of what specifically are considered the most significant barriers in different countries, it is important to recognize that the amalgamation of various barriers ultimately creates a lack of accessibility to healthcare. Multiple barriers may be at play in specific healthcare encounters, such as when a patient is transferred from a wheelchair to an examination table. These barriers can include a lack of practical knowledge on how to safely perform the transfer or negative attitudes from professionals who may view the task as ‘dirty work’ or ‘unskilled work’ (Ashforth et al. 2007). This negative bias in attitudes and expectations has been documented in earlier research worldwide (Berrol 1984; Brillhart, Jay and Wyers 1990; Kritsotakis et al. 2017; Wright 1988). In addition, barriers can arise from inaccessible or missing equipment. In the example provided at the beginning of this article, the specific issue may vary; for instance, it could involve the absence of a transfer lift. However, it might also be a combination of all these factors: a complex interplay between different types of relations, both material and immaterial. As mentioned, one way to understand and critically examine this amalgamation is to adopt a sociomaterial perspective—sometimes referred to as a new materialism perspective—within a critical disability studies framework to investigate inequalities in accessing and utilizing healthcare services (Feely 2016; Flynn 2017; Gibson 2006; Goodley et al. 2021; Monforte 2018).
As Goodley et al. (2021) explain, with the support of Thomas (2007), disability studies have become critical through the influence of both feminist and poststructuralist ideas. Thomas (2007) adopts a clear feminist approach in her studies, while others have developed more poststructuralist perspectives (Shildrick 2009; Shildrick 2012). However, in their article, Goodley et al. argue for the development of critical disability studies from a sociomaterial perspective, which connects to Thomas:
This approach conceptualises those political and material conditions of what Thomas (2007) terms disablism (the institutionalised rejection of disabled people) by attending to material (e.g. body and environment) and immaterial (e.g. emotions and virtual environments) relations in the lives of disabled people that constitute their place in the world (2007, 31).
It is through complex relations that the body is always relational, where material and discursive properties cannot be separated (Goodley et al. 2019). This approach addresses the criticism of critical disability studies for being overly focused on discourse and social constructions (Vehmas and Watson 2013).
This analytical approach gives promise to those seeking healthcare. Many of the aforementioned barriers to accessing healthcare services clearly involve material relations, such as inaccessible equipment, transportation facilities, and the transfer to an examination table. These material relations, I argue, are central to understanding health inequities. Simultaneously, immaterial relations also arise. For instance, revisiting the quote from the beginning, we can discern strong emotions in the statement, ‘And they are not particularly accommodating either’. What Goodley et al. (2021) would interpret as both material and immaterial relations negatively and stereotypically affecting individuals with disabilities.
The sociomaterial perspective seeks to move beyond the poststructuralist notion that there is nothing outside of the discourse, instead focusing on what Rhys Price-Robertson and Cameron Duff describe as those things that ‘lie outside of discourse’ (Price-Robertson and Duff 2016, 61). They argue that we should concentrate on the relations between heterogeneous parts, rather than, for example, individual personalities. To understand the emotions generated around professionals who ‘are not particularly accommodating’, we must also recognize that the examination table is a heterogeneous part that influences these relations, as does the hospital environment itself. From this sociomaterial perspective, the analytical focus is on the infrastructure of both the obvious elements in the sentence and those that are not immediately apparent. Flynn emphasizes ‘that the consequences of disability lie also in the everyday and the mundane’ (Flynn 2017, 154). Returning to the initial example, the situation may be considered ‘mundane’, as in, something healthcare professionals do daily without necessarily reflecting on it. However, it is also a situation where health inequities emerge due to barriers. Although the sociomaterial perspective is theoretical, the analysis must address the actual challenges that people with disabilities face when they visit healthcare facilities (e.g., Shakespeare 2014; Vehmas and Watson 2013).
Many within sociomaterialism have been inspired by assemblage theory, and I will also connect to this theory with the help of DeLanda (2008, 2016). This theory approaches the world as a type of sociomaterial network consisting of people and things, where agency emerges from the network rather than solely from the individual. The agency to lift a person in the hospital context is not only derived from the professionals but also from the many relations that constitute healthcare. The network then needs to be examined from two dimensions: its components and how it can either determine or destabilize situations.
Returning to the example, we can see that the examination table is, of course, a component. However, for it to function as intended, it also requires other components, such as the two people lifting the patient and the patient themselves. Without the two actors, the examination table would be a ‘dead object’, but without the examination table, the two people would not be able to perform their actions. We can also identify other components, such as a sliding mat, to understand both the actions in the situations and the barriers to these actions. Despite this, the process is perceived as unsafe by the women. From this theoretical perspective, the network does not determine the situation and make it safe for the women interviewed. Instead, the network is destabilized. By understanding what creates these destabilized relations in the situation, we can explain how uncertainty in healthcare is maintained for individuals with disabilities and how this perpetuates health inequities in society.
Method and Data
The article forms part of the research project ‘Resistance to accessibility’, investigating how societal and institutional resistance to change continues to obstruct accessibility for persons with disabilities, despite the existence of inclusion-oriented policies. It critically examines everyday interactions, cultural norms, and systemic barriers that sustain exclusion (Hansson 2019; Hansson 2021; Hansson 2022). The southern part of Sweden serves as a central case study, illustrating how emerging technologies and evolving social arenas simultaneously challenge and reshape accessibility efforts. As part of the project, a general overview was conducted to identify problem areas in accessibility, and healthcare emerged as a significant area of concern. Therefore, when creating the interview list, it was essential to include questions about accessibility in healthcare and the experiences of individuals. Many of the interviewees had personal experiences with accessibility issues encountered during their interactions with healthcare services, and this article is based on their interview responses. In addition, when access to healthcare is discussed, for example, in relation to politics, it often concerns other groups and other issues (Colorafi et al. 2021). Therefore, it is essential to give a voice to people living with disabilities, as they often have frequent and sustained contact with healthcare services.
The interview questions covered a variety of themes, but one specifically addressed healthcare: What experiences regarding accessibility (positive or negative) have you had in your interactions with healthcare? This open-ended question generated a wide variety of responses, allowing for follow-up questions based on the individuals’ experiences. The interviews were digitally recorded and transcribed afterwards.
The persons with a disability recruited for this study are all members of a neurology association. The sampling strategy aimed to include participants with lived experience of neurological conditions and frequent interaction with healthcare services. Recruitment was conducted through personal advertisements distributed within the neurology association, through which interested individuals initiated contact and consented to participate in the study. They reached out to me and agreed to be interviewed. This method of voluntary self-selection facilitated the inclusion of participants who were motivated to share their experiences in depth. Although this approach may limit the generalizability of the findings, it was appropriate for the study’s qualitative and exploratory design, which prioritizes the richness and contextual nuance of the data.
The participants chose the location for their interviews, with most taking place in the participants’ homes, while a few were conducted in my office or at a café. Due to the COVID-19 pandemic, some interviews were conducted over the phone. One interview was conducted together with the participant’s next-of-kin. All conversations were held in Swedish and later translated into English by the author.
Fifteen people contacted me and expressed their interest in participating in the study. They all lived in cities or near cities. The participants had different neurological disorders, such as cerebral palsy, stroke, and multiple sclerosis, and used different types of assistive devices: some used wheelchairs, others used mobility aids, and some could walk short distances. All interviewees were adults, with the youngest in her thirties and the oldest nearing seventy. Some participants had their disabilities from birth, while others acquired them later in life. In addition, some of the neurological disorders were progressive. All participants had extensive experience with various forms of healthcare.
An inductive thematic analysis was used to examine the interview data (Braun and Clarke 2006). The 15 transcribed interviews were initially reviewed to identify sections specifically addressing participants’ contact with the healthcare system. These segments were read multiple times to ensure familiarity with the data and to begin the process of generating initial codes. A preliminary thematic structure was conducted and presented at an international conference. Based on the feedback received at the conference, further refinements were made to the thematization. In parallel, a brief literature review was also conducted to contextualize the emerging themes within existing research. This review identified several relevant studies that provided theoretical and empirical grounding for the analysis. For instance, one study offered insights into the impact of negative attitudes and structural barriers faced by persons with disabilities in healthcare settings (Matin et al. 2021). Another central topic identified was problems with transportation to healthcare (Sakellariou and Rotarou 2017). The final thematic framework comprises five distinct themes that highlight different aspects of inaccessibility within healthcare services, capturing the multifaceted nature of the barriers encountered by individuals with neurological disabilities.
The research project has been reviewed and approved by the Swedish Ethical Review Authority (Registration No. 2018/145) and complies with the ethical principles for research involving human participants, as established in Sweden. In alignment with best practices, all participants were provided with written information about the study before the initial meeting. This information was also repeated verbally prior to the start of the interviews. Sufficient time was given for participants to ask questions regarding the study, its aims, and the data collection procedures. Informed consent was obtained from all participants through both written and verbal confirmation prior to any data collection, ensuring that their participation was fully voluntary and based on a clear understanding of the research. All participants have been anonymized in the article to uphold confidentiality and privacy.
Results
Although the main focus is on inaccessibility, some positive voices about the Swedish healthcare system emerged. An elderly man in his sixties who had a stroke sees both problems and opportunities within the healthcare system, but then elaborates on the positive aspects:
A year ago I got bleeding in one eye, and I came to the healthcare the next day. I got a lot of attention for it. I can’t complain. And the stroke, I really can’t complain. I can only praise them. […] I received fantastic care. On the other hand, you can talk about the opposite.
In this article, the primary focus is on the latter interpretation, to ‘talk about the opposite’. This approach provides insight into the conditions that people with disabilities encounter when accessing healthcare. With this in mind, the following themes emerged from the data: Navigating the healthcare network, Material environments and architectural barriers, Relational encounters with healthcare professionals, and Compensatory labor and fractured agency.
Navigating the healthcare network
A central aspect of hospital access is transportation, which is sometimes overlooked in healthcare studies. When patients do not arrive urgently by ambulance, they must rely on private or public transport. For many interviewees, living far from the hospital meant complicated journeys. For example, some needed to use public transport to get to the hospital. Numerous studies have highlighted general shortcomings in public transport for people living with disabilities (Hansson 2021; Stjernborg 2019; Stjernborg 2021), which also complicates transport to the hospital (Martin et al. 2021; Sakellariou and Rotarou 2017). Therefore, transport becomes a complex component in the sociomaterial network that connects the patient with the hospital.
However, transportation is not only a material issue but also one that involves immaterial dimensions such as feelings of uncertainty and dependence, and these aspects emerged in the interviews. For example, in one of the interviews, a middle-aged woman with multiple sclerosis reflects on her journey to the hospital. She lives in a larger city and regularly goes for check-ups at the hospital. From her reasoning, we can understand that there are many parameters to consider:
I go for checks there every now and then. There is a bit of a shortage of parking spaces at the hospital, both wheelchair-accessible places and regular spaces. Specially outside the main entrance. There is a parking lot a little further away, but for me it’s a bit difficult to get there. But I actually almost always take the bus or the tram to the hospital, because it’s just cumbersome to take the car.
Different options are available for the woman to travel to the hospital. Given that she owns a car, this is one possibility. However, she often chooses not to drive. Even though the car provides accessibility, she is presented with barriers related to parking spaces when traveling to the hospital: wheelchair-accessible spots are frequently occupied, and the parking lot is often too far from the entrance. For individuals with neurological disorders, such as multiple sclerosis, this distance can become physically and cognitively demanding. Therefore, the issue of parking spaces destabilizes the possibility of using the car as an option for this woman. Car parking may be perceived as a mundane aspect of everyday life (Flynn 2017); however, within the healthcare network, it becomes a central component for an accessible hospital. In this way, the material barrier (distance to parking) intersects with immaterial barriers such as anxiety and fatigue. The issue of parking was also a recurring theme in the other interviews.
The woman reasons that it is better to take the bus or tram. In the Swedish context, buses and trams are planned to be close to hospitals, and large hospitals often have so-called transport nodes. This means that it is possible to reach the hospital by public transport from different parts of the city. However, a consistent theme among most of the people I interviewed is the numerous barriers that exist when using public transport, such as issues with staff treatment, bus and train technology, platform accessibility, and so on (Hansson 2021). Therefore, even though public transport is a central component of what can be considered access to the hospital network, it is a network with its own barriers. Transportation facilities, as barriers to accessing healthcare (Matin et al. 2021; Sakellariou and Rotarou 2017), need to be seen as factors that can generate uncertainty even before the hospital visit begins. This uncertainty may manifest through questions such as whether the bus will arrive on time, whether the vehicle will be accessible, and whether the journey will be too physically and emotionally exhausting.
Material environments and architectural barriers
This topic concerns the buildings where healthcare services are provided. Previous research highlights buildings as problematic and often contributing to inaccessibility (Lagu, Griffin and Lindenauer 2015). However, categorizing buildings as a single entity is a rather simplistic analysis, given that hospitals vary greatly and are complex structures. Instead, we need to examine the more intricate relations within the context where patients and hospitals interact. This is particularly crucial for individuals with neurological conditions, as their experiences may involve fluctuating mobility, balance impairments, and sensory sensitivities. The complexity of these interactions was clearly illustrated in one of the interviews conducted for the project, where the interviewee spoke about the documented obstacles of health centers in a municipality, highlighting all the existing barriers:
There is an accessibility group in the city that is part of the patient organization. They did a documentation tour here in the fall about actual physical obstacles that exist in the care centers in the city. It was about curbs that you can’t drive over if you come with a wheelchair and handrails that are missing and so on.
The document makes it clear that the barriers were recurring. Physical obstacles can become components that hinder a person’s agency to become part of the network, in this case, the care center. A missing handrail can destabilize the accessibility of space and transform the care center into a place where one feels uncertain about visiting. In this way, the handrail intersects with immaterial relations such as the fear of falling, anxiety about independence, or emotional discomfort.
In the following quote, we can understand that a handrail can be crucial when transitioning from a scooter to the waiting room. The woman is in her sixties and uses a scooter. She has multiple sclerosis but can walk shorter distances, especially if she has support to hold onto. When she visits her care center on the second floor of a larger building, she needs to leave the scooter in the lobby because it does not fit in the lift. She explains:
Then they have an elevator that my scooter—now that it has been extended—does not go into it. If I’m going to get to the second floor, where most of the nurses are, I have to put the scooter down in the lobby and go into the elevator. And then you have to walk a little bit to where you shall be, which is too far to me.
Here, many components do not function properly. Due to the relatively large size of her scooter, the previously available lift mentioned in the quote has destabilized the situation for the woman. Therefore, she is forced to walk, but the distance is too far for her.
Moreover, the discussion is not limited to barriers to entering buildings. Another issue that arises is the small size of doctors’ consultation rooms. One of the younger women interviewed compared it to a closet. She uses a larger electric wheelchair that requires ample space, and she pointed out that the door to the room can also be too narrow. Another woman also discussed the problems with small rooms when undergoing surgery, including issues with storing the wheelchair and accessing the toilet. She explains, ‘You end up in a room and then it’s a long way to a toilet that works and so on. Small rooms where you may not be able to have your wheelchair, so you have to call to summon staff who can help you with the wheelchair’. This creates a dependency on the healthcare staff and increases the risk that one does not feel that the healthcare environment is adapted to their needs. Here, the material limitations of space intersect with immaterial experiences of dependence, loss of privacy, or diminished autonomy.
Another issue raised by the younger woman is the difficulty of being transferred from her wheelchair to an examination table. She highlights the lack of rooms equipped with elevators or lifts that can assist her. As a result, she has missed necessary examinations. She states, ‘It means that I have to skip examinations that I might have needed to do because the environment is so lacking that I cannot be examined’. This problem is also a recurring theme in the interviews.
This second theme can be summarized by viewing care centers and hospitals as networks composed of buildings, people, interiors, and other elements. Frequently, these components create obstacles that prevent individuals from becoming part of this network. By understanding this network of people and things and recognizing that agency arises within it, we can see how barriers lead to a lack of agency.
Relational encounters with healthcare professionals
Previous research also identifies the treatment by healthcare personnel as barriers to healthcare (Kritsotakis et al. 2017; Matin et al. 2021). At the most extreme end, examples include abuse and violence; however, these issues did not arise in the interviews conducted for this study. Nevertheless, barriers can also take the form of negative attitudes, being ignored, or impoliteness from the personnel. These more subtle forms of exclusion are often harder to detect; at the same time, they shape the person’s relation to care. This also makes it hard to differentiate between ableist attitudes, systemic and identity-based forms of prejudice, and more negative emotional responses that stem from, for example, stress or lack of training.
Returning to the quote in the introduction, we can interpret this as the person experiencing some kind of impoliteness or being ignored: ‘And they are not particularly accommodating either’. This shows that a warmer reception that showed appreciation was desired.
This theme can become more diffuse: while abuse and violence are often visible, being ignored is more difficult to interpret. Perhaps the staff were simply having a stressful day when they had to help the woman onto the examination table, or their personality traits made them seem impolite. Nonetheless, it is crucial to include these aspects in the analysis if we aim to understand and critically examine sociocultural barriers to uncover the subtle yet pervasive issues that contribute to the marginalization of individuals with disabilities within the healthcare system. At the same time, it can be hard to define this as ableism because of its diffuseness. However, in practice and for the individual, different forms of exclusion often overlap, contributing to their uncertainty of being welcome or valued in healthcare.
The interviews also revealed these barriers in the form of ignorance or an unreflective approach to the individuals seeking care. An elderly man with multiple sclerosis who uses a wheelchair highlighted this in a humorous manner when he described how the doctor asked him to lie down on an examination table. The problem was that he could not get out of the wheelchair on his own to lie down on the table. The interviewee mimics the doctor: ‘Yes, you can lie down on the bench there’, and then he responds as himself, ‘Yeah? How do I get there?’ He explained that he eventually received help: ‘I can’t stand up and move over, but then I got help’. This situation did not become a physical barrier in the end, because he received assistance; however, it initially categorized the man in a way that can be interpreted as a form of ignorance or impoliteness.
These examples illustrate that persons with disabilities do ‘not always call attention to their needs for care, and are therefore a vulnerable group in our society’ (Lagu, Iezzoni and Lindenauer 2014). Another closely related issue is how well prepared the doctor is for the patient meeting. The same man mentioned earlier clarified this problem in his interview: ‘If the doctor had taken the time to read a little before the visit, the visit will be much more effective. Now it takes a lot of time to tell the story of one’s life’. Most of those interviewed for this study had long medical histories, leading to similar experiences. The man expressed his frustration with always having to ‘tell the story of one’s life’ and feeling ignored by the doctor. This becomes a barrier when the doctor, for various reasons, initially needs to ask many questions.
To understand these networks, we must also comprehend the numerous relationships between people with disabilities and healthcare professionals. These relationships are central to identifying the various barriers within healthcare. However, these barriers should not be viewed solely as interpersonal issues. The doctor’s actions may not stem from ignorance but from systemic issues, such as the employer not providing sufficient time for each patient. Or it may be that there are high turnover rates among doctors, resulting in the patient having to see a new doctor at each visit. Understanding the network requires considering the entire system, including the politics that govern, the management of hospitals, the laws in place within a country, and so forth. Acknowledging these systemic dimensions is essential for a nuanced understanding of how relational barriers emerge within healthcare. They are not isolated incidents but rather sociomaterial arrangements.
Compensatory labor and fractured agency
Linking to the aforementioned experiences regarding ignorance, the interviews also highlight that contact with healthcare requires significant commitment and an ongoing responsibility from individuals with disabilities. What might be a single phone call or one visit at the healthcare center for other patients becomes a fragmented and labor-intensive process that is often repeated regularly for people with a disability.
This theme connects to the other themes discussed. For instance, it may involve investigating the hospital’s accessibility before a visit. If someone has previously encountered inaccessibility, they might want to ensure that their next visit will be smoother. In addition, transportation to the hospital may need to be arranged, especially if it is a new facility for the person. This can take extra time. What is central is that these preparatory actions are not optional; they are necessary to compensate for infrastructural and relational gaps in healthcare.
Having a disability often involves numerous interactions with various healthcare agencies, each requiring its own time and waiting period for responses. Having a neurological diagnosis can also require complex care routines and frequent coordination with multiple providers within healthcare. From this perspective, it also means that time is needed to retrieve various goods. In one interview, a younger woman with a muscular disease who uses an electric wheelchair highlighted that it takes a considerable amount of time to wait for and retrieve consumables:
We are often dependent on materials from the healthcare system as well. And how much you get and how often you get to collect and what you get to collect—it depends entirely on which contacts you have. And how much you are prepared to work hard to get what you really think you need. And it feels quite unsafe. For me who has a gastrostomy, I can’t even get the materials delivered to my home. If I had incontinence problems, you could get them delivered to my home, but not if you have a gastrostomy. That way, you can’t get it. So, I’m left [relying on] my relatives, who all work full time, to ask them to collect my materials.
For this young woman, it means not only worry but also additional time to ensure she has the correct amount of supplies at home. As she points out, she needs ‘to work hard’ for this. In addition, she must involve her loved ones, as she cannot pick up the packages herself or have them delivered. In other words, it is a redistribution of labor from institutions to individuals and their informal networks. This situation presents barriers both in terms of the cost of obtaining the necessary products and the healthcare system’s lack of understanding of her needs (or they just wanted to save money?) (Matin et al. 2021). All the extra work involved can shed light on what these existing barriers are. It is labor that is invisible, unpaid, and often unrecognized by healthcare institutions. Another time-consuming task is that she must go to the health center to order supplies, as she cannot do it over the phone or online. She explains:
It’s even so inaccessible that it’s not possible to order this material online. I was fortunately allowed to email my order but otherwise they wanted me to physically come and leave an order list and then just say, “Yes, it will take me five minutes to leave it for you, but it still won’t be right.”
Here, we can glimpse another time-consuming task: persuading healthcare providers to allow her to order via email. Even if she manages to place an order online and receive the goods, things can still go wrong: ‘And then I hope it’s been done right, which in 85% of cases it usually hasn’t been. I get the wrong stuff. I’m just like: “But I didn’t order this”’. This also takes time, causing the woman to wait even longer to receive the correct supplies.
Having to manage many tasks independently can be understood as a sign that the sociomaterial network of people and things within healthcare is not functioning effectively. The agency within healthcare, which should ensure the smooth delivery of goods, fails to do so, placing most of the burden on the individual. This requires both time and energy—time and energy the woman would prefer to spend on other activities, and the quotes reveal her frustration. In addition, her neurological diagnosis causes her to become tired quickly, which is a common issue among those I interviewed. A sociomaterial perspective can thus highlight how the networks surrounding the individual fail, exacerbating their vulnerability and creating additional burdens and a chronic sense of uncertainty. Rather than being the recipient of a responsive and supportive system, they risk becoming managers of their own care.
Discussion
It is essential to engage more explicitly with the concept of uncertainty, not merely as a subjective emotion but also as a condition that emerges through the sociomaterial arrangements of healthcare encountered by people with disabilities. This article seeks to elucidate such uncertainty through two key analytical dimensions. First, it responds to the critique directed at critical disability studies for its predominant focus on social constructions (Vehmas and Watson 2013). Although it is evident that health inequities among individuals with disabilities are not merely social constructs, it remains imperative for disability studies to maintain a critical perspective to comprehend these disparities. Second, the article argues that specific aspects of these inequities are intrinsically linked to the understanding of healthcare as encompassing both material and immaterial relations, relations that adversely and stereotypically affect individuals with disabilities (Goodley et al. 2021).
To further illustrate these points, I refer to Matin et al.’s (2021) systematic review, ‘Barriers in access to healthcare for women with disabilities’. It is evident that themes identified in other research projects are also present in this article (see Summary Table). The first type of barrier pertains to sociocultural barriers, which are discussed in the interviews in terms of treatment by healthcare personnel. This primarily involves previous experiences of being ignored, encountering negative attitudes, or various forms of impoliteness. The second type of barrier is financial. Although Sweden’s welfare system aims to make healthcare affordable, poverty does not emerge as a financial barrier in the interviews. However, in relation to the theme ‘Compensatory labor and fractured agency’, it is apparent that individuals with disabilities must exert more effort than others to obtain the healthcare they are entitled to. This also manifests as a financial issue, where individuals may rely on relatives for assistance, make personal purchases when the healthcare system fails to deliver on its promises, and so forth. Taken together, these barriers generate a persistent uncertainty regarding whether healthcare will be accessible for people with disabilities. In the long term, the uncertainty itself risks becoming a barrier.
Summary Table
Thematic Findings and Sociomaterial Networks in Healthcare Access.
| THEME | MATERIAL | IMMATERIAL |
|---|---|---|
| ‘Navigating the healthcare network’ |
|
|
| ‘Material environments and architectural barriers’ |
|
|
| ‘Relational encounters with healthcare professionals’ |
|
|
| ‘Compensatory labor and fractured agency’ |
|
|
The most prominent topic in the interviews is structural barriers, which aligns with Matin et al.’s (2021) findings. Structural barriers encompass issues such as transportation to the hospital, the inaccessibility of hospital buildings and medical equipment, and the attitudes of healthcare personnel. When healthcare personnel lack adequate knowledge to respond appropriately to patients, this constitutes a structural barrier. Often, this results in the individual having to manage everything independently. While this could be seen as empowering, where individuals become specialists in their own disabilities and articulate their needs, it is more likely indicative of being compelled to be proactive to secure their right to care. This scenario risks individuals spending excessive time resolving hospital-related issues, relying on their own expertise (which not everyone possesses), and depending on relatives for assistance (which not everyone has).
This issue is further underscored by Article 25 of the Convention on the Rights of Persons with Disabilities, which states, ‘Persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability’. In relation to the three aforementioned topics and the analysis conducted in this study, I argue that individuals with disabilities do not receive the ‘highest attainable standard’ of healthcare. This argument is grounded in the definition provided in point (a) of Article 25, which stipulates, ‘Provide persons with disabilities with the same range, quality and standard of free or affordable healthcare and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes’. The barriers identified in the analysis appear to limit or directly hinder the provision of ‘the same range, quality, and standard’ of healthcare. In addition, the interviews reveal that it is not one single barrier that emerges but rather a multitude of complex, intertwined barriers. Consequently, it is not feasible to conduct a singular analysis of the necessary changes; instead, it is essential to consider the entire network of factors extending beyond healthcare. I want to argue that there is a need for greater responsibility within healthcare for individuals with disabilities (Gibson and Mykitiuk 2012; Strömberg and Westman 2001).
A central and important method for making these barriers visible within healthcare and for ultimately changing them is ‘to give voice to the lived experiences of people with disabilities as they navigate’ (Colorafi et al. 2021) the healthcare system. These lived experiences can be considered as disability narratives that give voice to the suffering and healing of people (Kleinman 1988). Through these narratives, it becomes possible to analyze not only how individuals manage uncertainty when seeking care but also how these lived experiences of uncertainty reveal barriers within healthcare.
At the same time, these narratives must be understood within their sociomaterial context. Therefore, to advance critical disability studies from a sociomaterial perspective, it is crucial to consider both the political and material conditions that create barriers within healthcare (Goodley et al. 2021; Thomas 2007). This discussion highlights the urgency of understanding and changing these conditions, as it not only risks determining individuals’ place within the healthcare system but also contributes to health inequities. Therefore, rather than seeing uncertainty as purely an emotional response, it should be understood as a structural and relational phenomenon.
Conclusion
This article is based on interviews conducted with 15 individuals living with neurological disabilities in Sweden and their experiences of seeking care within the healthcare sector. Although the sample size is relatively small and geographically concentrated, it identifies barriers in healthcare that individuals with disabilities encounter. These barriers risk contributing to health inequalities and creating uncertainty for the individual when seeking care. By foregrounding lived experiences of uncertainty and applying a sociomaterial perspective, this study contributes to current research by demonstrating that health inequities are not only socially constructed but also materially and relationally produced. Future research could benefit from triangulating these findings with healthcare provider interviews, policy analysis, and longitudinal data on health outcomes.
Acknowledgements
The author would like to acknowledge the 15 individuals who volunteered to be interviewed. I also extend my gratitude to the theme editors Richard Gäddman Johansson, Radu-Harald Dinu and Josefine Wälivaara, and the two anonymous reviewers for their valuable feedback on earlier versions of this article.
Competing Interests
The author has no competing interests to declare.