Abstract
Purpose
The overall aim of this study was to describe experiences of discrimination due to inaccessibility among people using mobility devices.
Material and methods
We conducted a thematic qualitative analysis of 88 complaints about wheeled mobility device use, inaccessibility, and discrimination submitted to the Swedish Equality Ombudsman (DO) during 2015 and 2016.
Results
The analysis resulted in three themes: instigating change by invoking laws and regulations and highlighting lack of compliance; demanding to be recognised, understood, and listened to; and struggling for equal access and social participation. Regulations and treaties were invoked as the basis for complaints by people using mobility devices regarding their lack of access to physical environments and impediments to their enjoyment of their full right to participate in and contribute to society. The complaints described feelings of discrimination, the disadvantages and exclusion due to physical inaccessibility, and experiences of being prevented from living one’s life as others do.
Conclusions
Complaints filed by people using mobility devices showed that they were denied access to a wide range of contexts, including offices, theatres, restaurants, schools, and public transportation, though they desired to live an active and social life outside their homes. Filing a complaint was a way to take action, highlight present inaccessibility, and express a hope for change.
Difficulties experienced by people using wheeled mobility devices can reveal knowledge important for revising existing design and renovation standards for housing and public buildings.
Documenting facilitators and barriers in different environments is important for giving voice to the needs of wheeled mobility device users and revealing standards that need to be strongly enforced or revised.
People using wheeled mobility devices should be supported in finding solutions in inaccessible environments, both to fulfil their wishes and to enable their participation in society.
IMPLICATIONS FOR REHABILITATION
Introduction
This study addresses discrimination due to physical inaccessibility reported to the Swedish Equality Ombudsman (DO) in Sweden and describes the experiences of people using mobility devices. Ensuring that society is accessible to all is a national and international goal. From the perspective of disability rights, people with mobility-related disabilities who use mobility devices must have equal opportunity to participate in and contribute to society [Citation1]. Mobility, to move around independently in society and at home, is crucial for participation [Citation2–4]. Accessible environments are necessary to enable people using different mobility devices to move around. Further, the ability to move around in the community is an important part of participating in leisure, social, and other activities, and is necessary for health and wellbeing [Citation5]. Physical and social environments can also constitute external circumstances that prevent meaningful activities [Citation5]. Thus, being able to move around and participate in activities and environments in accordance with a person’s needs and wishes is crucial, and includes the integration of the mobility device into the user’s environment. According to the Canadian Model of Occupational Performance and Engagement (CMOP-E) [Citation6], focussing specifically on the components of people, environment, and activity that interact in a dynamic relationship, self-care, productivity, and leisure activities are important for health and wellbeing. It follows that optimal mobility device use in different environments is important for enabling participation, activity balance, and justice [Citation5,Citation6].
Knowledge of the experiences people have of accessibility and participation while using mobility devices is essential. Previous research has shown that using mobility devices, such as a wheelchair, positively influences everyday activities [Citation7], participation [Citation7,Citation8], and quality of life [Citation7–9]. However, a recently published systematic review [Citation10] showed that many people using mobility devices experience accessibility problems. Environmental characteristics have been suggested as a possible contributing factor to being able to participate in activities [Citation9,Citation11]. Another recently published review [Citation12] that focussed on older adults using mobility devices found indoor and outdoor built environments presented challenges to mobility due to inaccessibility, with social environments also presenting challenges such as attitudinal barriers. Bonehill et al. [Citation13] described the emotional work it takes to adapt to inaccessible features of mobility systems, and the frustration, stress, and anxiety it creates. They argue “that the material environment that mediates participants’ mobility experience cannot be separated from social stigma, marginalisation and the politics of power in that the environment is both a product of, and a catalyst for, this inequality”.
In accordance with the UN Convention on the Rights of Persons with Disabilities (CRPD) [Citation1], public buildings and places must be accessible to people using mobility devices. Regarding accessibility and the environment, safety is an important aspect of mobility device use [Citation14,Citation15]. A recent study highlighted a three-fold increase in the number of accidents in Sweden, related to powered wheelchairs and powered scooters, that were reported to the Swedish Traffic Accident Data Acquisition (STRADA) during the period 2007–2016 [Citation16]. Different levels on a surface that a mobility device has to traverse and uneven surfaces were among the most common factors that caused single accidents among people using such mobility devices, a finding that is in line with those from an international project [Citation17].
Disabling environments is frequently the basis for discrimination complaints submitted to the DO. Since January 2015, people with disabilities have been able to report discrimination due to physical inaccessibility to the DO under the Discrimination Act [Citation18]:
[A] person who has a disability is disadvantaged by an establishment’s—for example, workplace, school, or business—failure to take reasonable accessibility measures to put the person in a comparable situation to someone who does not have the disability in question [Citation19].
Given that the stricter version of the Discrimination Act has only recently come into force, knowledge about this form of discrimination is still insufficient. To learn more about how people using mobility devices experience discrimination due to inaccessibility, it is important to evaluate complaints related to the Discrimination Act received by the DO [Citation18]. It is vital to acknowledge the characteristics and requirements of mobility device use [Citation10] and physical accessibility problems to optimise the use of such devices in society, including the complex relationships between participation, physical inaccessibility, and dependence [Citation8].
Paying attention to peoples’ lived perspectives has often been cited as crucial to understanding how inclusion and exclusion play out in real life [Citation20]. A more accessible world depends on the extent of our knowledge, as well as the politics of knowing-making [Citation20]. Clearly, physical accessibility could be highlighted and improved in the development of public buildings and in society at large, where people using mobility devices work together with professional actors, such as occupational therapists, urban planners and architects [Citation21]. Documentation of facilitators and barriers in different environments is essential to articulate the needs of mobility device users and advocate for the recognition of those needs [Citation17]. The complaints of people using mobility devices submitted to the DO could provide insight and help clarify the requirements for accessibility, the consequences of insufficient accessibility and participation difficulties, and ways to prevent discrimination. To the best of our knowledge, there is scant research about people using mobility devices both reporting their experiences of being discriminated due to inaccessibility in the physical environment and describing the consequences of that inaccessibility. There is clearly a need for more studies.
It is vital to gain new knowledge regarding the consequences in terms of exclusion and not being able to participate in and perform everyday activities due to inaccessible environments. The overall aim of this study was to highlight and critically discuss the experiences of discrimination due to inaccessibility among people using mobility devices, by analysing reports submitted to the DO during 2015 and 2016.
The specific research questions were as follows:
What motivates people using mobility devices to complain to the DO about discrimination due to inaccessibility?
How do mobility device users describe discrimination and participation restrictions, and what are the consequences of inaccessibility?
Materials and methods
Design
Applying a qualitative descriptive approach [Citation22], this cross-sectional study was based on incoming complaints of discrimination due to inaccessibility received by the DO in Sweden; in 2015 and 2016, which were the first two years it was possible to report discrimination due to inaccessibility to the DO. These incoming complaints (documents) granted us access to descriptions of a large number of situations related to inaccessibility by a large number of people, who were motivated to send a complaint to DO. Qualitative document analysis, described by Bowen [Citation23] as “a systematic procedure for reviewing or evaluating documents,” was used to capture the participants’ experiences of inaccessibility and discrimination described in the complaints.
Data collection
Procedure
The first author (AU1) contacted the DO with information about the study and to obtain complaints on discrimination and inaccessibility received by the DO in 2015 and 2016. Complaints to the DO are public documents, but the DO always performs confidential control before making them available. If the DO determines that a complaint contains sensitive information, the complaint will not be distributed. For this study, the DO reported that no incoming complaints in 2015 and 2016 were assessed as sensitive. AU1 removed all names, addresses, and personal identification numbers in the complaints. People who decide to send a complaint to the Independent Living Institute (ILI) at the DO can use an application form but do not have to. The ILI is a policy development centre specialising in consumer-driven policies for the self-determination, self-respect and dignity of people with disabilities. On the form, a complainant can provide information about the disability, type of mobility device, accessibility problems, and experience of discrimination.
Data selection
Data selection was performed iteratively. First, all complaints received by the DO during 2015 (n = 297) and 2016 (n = 162) were read through and compiled by AU1. This step generated the first text, consisting of 459 complaints. Next, in accordance with the aim of the study, AU1 selected 88 complaints describing inaccessibility and use of wheeled mobility devices. In this study, “mobility device” refers to the wheeled mobility devices most commonly appearing in the complaints: rollators, manual wheelchairs, powered wheelchairs, and powered scooters. Complaints were submitted by the person themself, a relative such as a son or daughter, parents (the discrimination concerned the child), or a proxy.
Analysis
According to Bowen [Citation23], it is important to check the documents for aspects such as completeness and detail of descriptions. Therefore, to obtain an overall picture of the complaints focussed on mobility device use, AU1 gathered the following information in the complaints: gender, type of mobility device, location of the incident, type of business reported, description of the experience of inaccessibility and discrimination, reference to the law, and what the discrimination was associated with (see ).
Table 1. Information in the complaints 2015–2016: type of wheeled mobility device, gender, who reported, place and establishment where the acitivity occured, used the DO form.
The complaints to the DO regarding discrimination due to inaccessibility analysed in this study described various experiences of inaccessibility. Accessibility is as defined in the Discrimination Act [Citation18] and serves as the basis for our findings. However, Persson et al. [Citation24] argue that accessibility is used in many different contexts and that understandings and definitions of accessibility may differ. As a consequence, different definitions of this concept may cause difficulties knowing when inaccessibility is leading to discrimination.
Applying a descriptive approach [Citation22,Citation25], a thematic analysis was used for pattern recognition [Citation22] of the complaints. In the first step, multiple documents were read several times for an overall sense of the data. AU1 then identified, coded by hand, and categorised sections of the complaints relevant to the aim of the study. In this step, the data were still raw and in context; that is, they remained close to the text in the complaints. The preliminary codings were discussed and validated several times by AU1 and AU3, and thereafter by AU2, until a consensus was reached on the themes and sub-themes. AU1 and AU2 provide occupational therapy perspectives and AU3 a perspective from the design sciences; these differences sometimes led to different interpretation of the data, but they also afforded an in-depth analysis. All authors were involved throughout the analysis process to increase the reliability of the findings, an approach that facilitated the attainment of intercoder agreement [Citation26]. Further, all the different steps of the analyses were carefully documented to enhance credibility and dependability [Citation26].
Ethics
The guidelines of research ethics issued by the Swedish Research Council were followed. The Regional Ethical Review Board in Lund, Sweden, approved the study, number 2017/427.
Findings
The data analysis resulted in three overarching themes: instigating change by invoking laws and regulations and highlighting lack of compliance; demanding to be recognised, understood, and listened to; and struggling for equal access and social participation. The themes comprised two sub-themes each ().
Table 2. Themes and sub-themes.
Instigating change by invoking laws and regulations and highlighting lack of compliance
The first theme includes the following two sub-themes: citing regulations to strengthen the complaint; and questioning if the authorities follow the laws and regulations. Complaints related to inaccessibility under this theme referred to a number of different laws and regulations.
Citing regulations to strengthen the complaint
The complaints cited a number of different regulations and treaties requiring people with disabilities to be able to access the same physical environments as people without disabilities. They also demanded compensation for damages arising from a violation of their rights and from the discrimination they encountered. They stated their belief that asking for compensation would help ensure that their complaint was taken seriously. The complainants referred to the Swedish government’s ratification of the CRPD and the unacceptability of inaccessibility according to this convention. Both Swedish law and EU regulations were cited. The Americans with Disabilities Act (ADA) was also referred to, which has been suggested as a model for Sweden, especially its requirement of reserved parking places for people using wheelchairs. The complaints described problems with public transit companies, referring to current Swedish legislation on accessibility in public transport. Complaints also described unmet demands for equal mobility in the school environment, citing mobility for all students as a human right.
Questioning if the authorities follow the laws and regulations
People using mobility devices questioned if public authorities followed the laws and wanted the DO to judge whether their experiences could be considered discrimination. The complaints named the local traffic authorities and the responsible politicians and demanded interventions to prevent continued discrimination. The complaints described easily removed barriers that municipal officials did not know about and that had not been approved by municipal officials. For example, one complaint described the municipality’s online invitation to people to communicate their concerns, yet technical officials did not listen to citizen’s proposals and the complainant continued to have difficulty influencing the physical environment. People also said it was important to file a complaint to see what the municipality was paying attention to and what concerns it was willing to address. They also mentioned that ramps and relief surfaces were built before laws and regulations were updated, resulting in a need for modifications.
Demanding to be recognised, understood, and listened to
In the second theme, the two sub-themes that emerged are: others’ attitudes and treatment and not being listened to; and others’ lack of understanding of even basic needs. The complainants described being treated in an undesirable and unsafe manner, and they asked why people with disabilities should be treated differently from those without disabilities.
Others’ attitudes and treatment and not being listened to
People using mobility devices felt that they were treated differently and that they were not welcome when visiting restaurants and other businesses. Wheelchair users described how they had to drive around buildings to loading zones and pass dustbins to reach a lift. For instance, one complaint recounted occasions on which people using wheelchairs and rollators asked restaurant staff to move a bench so they could be seated but were told to sit outside, in zones where alcoholic beverages could not be served. Complaints also described staff not speaking directly to the person using the wheelchair, instead, addressing their assistant on where to sit. With regard to transit, people using wheelchairs experienced bus drivers not helping with a non-functional ramp, instead telling the complainant to wait for the next bus. Complaints also described bus seats reserved for people with disabilities that people using rollators were ordered to give up when customers with strollers boarded.
Other peoplés lack of understanding of basic needs
The complaints described how others did not understand the needs of people with mobility devices. For example, a problem occurred when people who used rollators visited a museum and needed to sit down to put on their outerwear, but the museum forbade sitting on the chairs in the entrance hall. Instead, the people were offered an unstable and unsafe collapsible pallet. Staff responsible for accessibility on trains did not understand the problem of bringing rollators onto the train, instead, telling the person to place the rollator in the luggage space, even though there was no room for it. Other complainants were advised by the train company to use other types of transportation because they could not bring wheelchairs onboard. The complaints told of not being able to visit the theatre with a powered wheelchair, even though they had asked for information about accessibility ahead of the visit. The complainants explained that theatre staff usually carried manual wheelchair users down the stairs, which the people using the wheelchairs experienced as offensive, with insufficient accessibility provided by the theatre.
Struggling for equal access and social participation
In the third theme, the two sub-themes that emerged are: making comparisons with those who are not disabled; and having equal access to the same places to which others go. The complaints highlighted the way people who used mobility devices compared their access with the access of those without disabilities and felt discriminated against because of inaccessibility that excluded them and made them unable to live their lives as others did.
Making comparisons with those who are not disabled
This subtheme revealed that accessibility in society was problematic. For example, a bank was not accessible to people using wheelchairs due to stairs and the lack of a lift. The complainants compared their experience to that of people not disabled: they had to ring the bell, wait for staff to come, and conduct their banking in the street, something they described as strange and utterly violating. Some complaints described people using wheelchairs trying to attend events and having to sit at a stairway outside the entrance, unable to enter as other people did, and feeling discriminated against. Narrow staircases, heavy entrance doors without automatic openings, and no bells to call staff for assistance made it impossible for people using wheelchairs to pick up packages. The suggestion that they instead get packages delivered was described as unfair and discriminatory. Some complaints reported people using wheelchairs being placed in a train wagon together with prams and bicycles, rather than with passengers, with their families placed at the other end of the train. Trains lacking wheelchair lifts were described, with the people being told to take another train leaving earlier or later. Other complaints described being contacted by the school and told to keep the child using a wheelchair home from a field day that was a planned study visit. The children had to be able to walk and there was a risk that the child using a wheelchair could not get around because there were no resources to provide help to the child.
Having equal accessibility to public spaces to which others go
Complaints described experiences of discrimination and its consequences. People using powered wheelchairs could not use public transportation due to problems with weight limits for the wheelchair. Difficulties were also encountered boarding buses because drivers did not lower the bus floor or did not drive close enough to the sidewalk at the bus stop. Private transportation was found to be frustrating for people using wheelchairs, as the pillar with the card reader was on a high base, making it impossible for them to pay for the fare. Further, parking lots were located on corners and at emergency exits, with insufficient space for people to lift themselves into and out of their wheelchairs. Lifts not having enough space for manoeuvring a large powered wheelchair were perceived as discriminatory.
Parents described inaccessibility problems at school, such as lifts too narrow for wheelchairs with attendant control, and lifts that could not be used in the case of fire, and no evacuation route for wheelchair users. There were missing door handles, preventing people using wheelchairs from entering the school by themselves. There were also inaccessible toilets.
Discussion
The present study investigated the consequences of inaccessibility in terms of discrimination and participation for people using mobility devices. The experiences recounted in the analysed complaints illustrated that discrimination still exists, confirming that by evaluating complaints related to the Discrimination Act filed with the DO we can learn more about how people using mobility devices experience discrimination due to inaccessibility [Citation18]. What emerged during this study was that the complaints to DO allowed people using mobility devices to describe accessibility problems they experienced, consequences of such problems, and discrimination. People hoped that submitting complaints would lead to more accessible environments in society. It is a struggle that takes many forms and happens on several levels. A struggle for enjoying one’s fundamental rights, for recognition, for access, and for participation. A struggle for oneself but also for other people’s rights to access, and ultimately for the society one desires.
The findings show that different regulations and treaties serve as the basis for raising complaints about both a lack of access to physical environments and impediments to peoples’ enjoyment of their full rights to participate in and contribute to society. Complaints referred to the Swedish government’s ratification of the CRPD [Citation1]. People used the terms of the treaty to describe their experiences of discrimination due to physical inaccessibility and to detail environmental problems along with the interventions needed. People described the consequences of inaccessibility for social participation and everyday activities, which provides critical information for people involved in planning for accessibility in society. Paying attention to the experiences of people using mobility devices would enhance our understanding of the consequences of inaccessibility, a point that is in line with Labbé et al. [Citation17], who stated that documentation of facilitators and barriers in different environments is important for articulating the needs of mobility device users.
The findings also show that people using mobility devices refer to the Swedish Planning and Building Act [Citation27], suggesting that municipal officials lacked knowledge about environmental barriers, that it was difficult to influence the physical environment, and that technical officials did not listen to citizens’ suggestions. This finding is noteworthy because, since 2001, municipalities in Sweden have been required to modify high thresholds, heavy doors, and other impediments within public buildings. According to legislation passed by the Swedish Parliament in 2010 [Citation27], public buildings must be accessible in accordance with the CRPD [Citation1], which states that public buildings and places must be made accessible for people with mobility disabilities. Therefore, when designing and renovating housing and public buildings, it is important to involve people using mobility devices with experience of difficulties in different environments, as others have also recommended [Citation8,Citation21,Citation28,Citation29].
The findings of this study show that people using wheelchairs, in particular, feel discriminated against, disadvantaged, excluded, and prevented from living their lives as others do due to inaccessibility issues permeating the transport system [Citation30]. People trying to use powered wheelchairs in the transport system experienced additional accessibility problems with ramps and elevators. Since this problem leads to their not being able to use trains and busses, their social life is affected and they are excluded from participating in everyday activities [Citation31]. Social inclusion is important for activity justice, also highlighted related to mobility device use [Citation32]. Staff in public spaces and services seem to have insufficient knowledge about the specific accessibility needs of people using mobility devices. This lack demonstrates the importance of providing staff and actors in various services with information and education about the consequences of inaccessibility for people using mobility devices, which in turn will enhance understanding of how to serve and enable accessible environments.
An important finding of this study is the effort that people using mobility devices put into living an active and social life outside the home. They expressed their wish to visit the same places as those who did not use mobility devices and described how accessibility problems made them feel excluded from everyday participation and from engaging in everyday activities. They are required to make compromises and find solutions to enable their participation in society. These challenges might lead to their not being able to meet friends or manage everyday activities in accordance with their wishes, a finding that is consistent with previous research [Citation10,Citation12,Citation28]. This illustrate consequences of environmental barriers, and that the environment must be designed to assist participation in activities, as described in the CMOP-E [Citation6]. Thus, since activities are important for health and wellbeing [Citation6] and enabling activities allows people to experience a meaningful everyday life [Citation7], the consequences of inaccessibility for people using mobility devices is made clear. The International Classification of Functioning, Disability and Health (ICF) [Citation33] has been used in studies about participation and mobility device use [Citation34–39]. However, in a recent published scoping review [Citation40], the authors stated that “there is no gold standard to address accessibility issues,” and that activity performance must be related to the environmental barriers and accessibility. According to the ICF, participation is defined as involvement in a life situation. Hence, the ICF does not focus on perceived participation [Citation41,Citation42]. Further, an enhanced understanding is needed of the different personal and environmental aspects that influence participation in the community [Citation43–45]. Moreover, research is needed about features of buildings that cause accessibility problems as experienced by people visiting public buildings [Citation40]. In addition, documentation of experiences among people using assistive technology is required [Citation46]. Based on this, our findings contribute to a better understanding and deepened knowledge on environmental barriers, inaccessibility and discrimination documented and experienced by wheeled mobility device users.
This study revealed inaccessibility and discrimination for children in school environments, highlighting that the school environment also impinges on children using mobility devices in limiting ways. Possibility to move around and participate in for example the gymnastic activities and other school activities is crucial for the normal development of the children. Also, to be able to join activities in accordance with the child’s needs and wishes with friends in their own age in everyday life, is highly important. The UN Convention on the Rights of the Child [Citation47] contains these words: “Considering that the child should be fully prepared to live an individual life in society and brought up in the spirit of the ideals proclaimed in the Charter of the United Nations, and in particular in the spirit of peace, dignity, tolerance, freedom, equality and solidarity”. In accordance with Article 49, these words imply that children using mobility devices should have the same possibilities and equalities as their schoolmates. How well people can participate in activities depends on the dynamic people–activity–environment interaction [Citation6]. People using mobility devices have their own wishes about which activities are important to them, for example, visiting green spaces. They have stated the importance of visiting such spaces for a good quality of life, and have also described the feeling of exclusion when natural environments were inaccessible [Citation28].
Methodological considerations
Our study originated from a unique source—the accounts of discrimination due to physical inaccessibility that were reported to the DO by mobility device users. All complaints to the DO during 2015 and 2016 regarding people using mobility device and their experience of inaccessibility and discrimination were analysed. The DO reported that no incoming complaints during this period were assessed as sensitive and therefore not able to be sent to us. Our findings contribute to an increased understanding of the consequences of physical inaccessibility and the experience of discrimination. However, because qualitative research does not aim to create generalisable findings [Citation22], our findings should not be generalised to all people using mobility devices. In most analysed complaints, the contexts and reasons for discrimination were given. However, some complaints were less informative, and some were submitted by parents or personal assistants. Since we assessed the documents’ quality for different aspects in accordance with the aim of the study, we believe that our findings are based on documents of high quality. Having high quality documents is in agreement with the views of Bowen [Citation23], who argues that the quality rather than the quantity of documents is important.
A limitation of the study may be that no citations from the complaints were presented in the findings. Even though the DO maintains confidential control over the complaints, we decided to further protect the anonymity of the persons who submitted them by not directly quoting them. Instead, given the many concrete and illustrative narratives presented in the complaints, our report of the findings is close to the complainants’ own words. The prior experience of the researchers involved in the study must be taken into consideration when interpreting the findings. It is highly likely that other facets of the users’ experiences could have been revealed had the researchers represented professions or disciplines other than occupational therapy and the design sciences. The complaints described the consequences of inaccessibility for people using mobility devices. However, more research is needed on specific physical accessibility requirements depending on the type of mobility device used, since the devices were not described in detail in the complaints. There is also a need for continued research on the rights of all people to access the products, services, and environments of society.
Conclusion
Based on the complaints of people using mobility devices submitted to the DO, this study explored their experience of inaccessibility and discrimination, and thereby generating important knowledge. Article 19 of the CRPD is about everybody’s right to a life that is self-determined regardless of functionality (CRPD). This study contributes insight regarding the ongoing struggle for access and recognition. Exclusion affects all people, not only those who experience discrimination. When people are hindered from participating and contributing to what is considered an everyday activity, the whole of society suffers, on all levels. In our study, people using mobility devices were denied access to offices, theatres, restaurants, schools, and public transportation—contexts that constitute large parts of life. Clearly, there is more to learn, and more to do regarding enabling accessibility and a society for all.
Appendix_1.docx
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We would like to thank the DO for providing us with complaints and answering our questions.
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