Drawing on critical disability and universal design perspectives within occupational therapy

Abstract

Background

Critical perspectives which focus on socio-political influences on occupation have gained increased attention within the occupational therapy profession. Critical disability studies (CDS) question prevailing assumptions about disability and how disabling ideologies and practices are perpetuated in society. Universal Design (UD) is a design approach that aims to operationalise issues of inclusion and justice.

Aim

To identify and discuss how the tenets of CDS and UD can contribute to occupational therapy practice and research.

Methods and Results

Drawing on the writings of leading scholars within CDS, UD and occupational therapy, we demonstrate the intertwined barriers faced by disabled children, youth, and adults who have participated in our studies and provide ideas on how practice can be guided by the tenets of CDS and UD to promote social equity.

Conclusions

Incorporating CDS and UD perspectives in occupational therapy practice and research requires a change in mindset and ways of working. Occupational therapy knowledge needs to be expanded to scrutinise disabling hindrances hidden within social and structural spaces, and implemented in services. We recommend working with disability communities to raise awareness and combat disabling barriers at various level of society, as mandated by policy.

Keywords:

• Critical perspectives
• ableism
• equity
• usability
• policy

Introduction

In the last two decades critical perspectives which question conventional practices and value judgments and contemplate the effects of social structures, norms, and policies on people’s opportunities for participation have gained attention within occupational therapy and science research [1–13]. As part of this endeavour drawing on critical disability studies scholarship and an alignment with disability communities’ priorities has been emphasised [10,14–16]. Disability studies is a scholarly field that emphasises the dignity, worth and equal rights of all people and draws attention to the discriminating barriers faced by disabled people [17–20]. The ascendance of critical disability studies (CDS) as the preferred nomenclature reflects an opening up to the diversity of critical social and cultural theorising [21–23] to understand and rethink the marginalisation of disabled people in society. Inspired by CDS the aim of this paper is to discuss and identify ways in which CDS can contribute to occupational therapy practice and research. Furthermore, the concept of universal design (UD) will be discussed and applied as it emphasises meeting human diversity, people with different qualities, abilities and limitations [24].

It should be noted that CDS and UD are of a different order. Despite its political underpinnings, UD is first and foremost a design approach that aims to operationalise issues of inclusion and justice, whereas CDS is a theory about social justice. Although UD is primarily discussed here in relation to disability,¹ we recognise that it has a broader appeal that encompasses social and cultural diversity.

We draw on the writings of leading scholars within CDS [21–23,25–28] and UD [29–36]. Critical work within occupational therapy and science, which has focussed on social change and socio-political influences on occupation [1,7,9–12,37–39]; and the power relations in sustaining or challenging barriers experienced by disabled people [2,40–42] has also been an inspiration to this paper. Empirical examples from our own research are used to demonstrate the interplay of contextual factors that affect disabled people’s possibilities for participation and the effects of their encounters with inaccessible environments. To better understand and act on the complex and marginalised position of disabled people we provide ideas on how occupational therapy interventions and research can be guided by the tenets of CDS and UD to promote social equity [43] and participation in occupations.

A critical disability studies perspective

Pioneers within disability studies criticised the bio-medical and normative understanding that consider disability as being, first and foremost, located within the person. They claimed that impairments and disability were distinct phenomena and that people were disabled by barriers within society, not by their differences [17,19,44]. Later, relational approaches that focussed on the interplay between disabled people and their societal surroundings became the centre of attention [20,45]. Such relational understanding of disability resonates in the Convention on the rights of persons with disabilities [CRPD] (2007), a human rights treaty that reframed disability with respect to human rights and established the norm of disabled people’s participation in society on an equal basis with others. In the preamble, disability is described as ‘the result of the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’. By signing and ratifying the CRPD, authorities world-wide recognised the importance of their obligations to prevent discrimination and provide opportunities for disabled people to be active members of society [24].

Like other critical approaches, CDS questions the status quo and seeks to make social values and assumptions visible. Knowledge is viewed as socially situated and power and knowledge as linked [23,46,47]. CDS questions many of the prevailing assumptions about disability and allows for identifying the ways in which power is exercised and disabling ideologies and practices are perpetuated. Ableism is a central concept in CDS [48], defined as systematic prejudice and inequality against disabled people, which feeds into the idea that disability is negative and undesirable. This is reflected by society that is first and foremost organised around and built to serve nondisabled people, thereby marginalising, excluding, and even dehumanising disabled people [28,48,49]. One of the aspects that make ableism so dangerous and insidious is that it often presents as ‘common sense’, not the least within health care where routine aspects of many disabled people’s daily life, such as the use of respirators or feeding-tubes, are considered indicators of an unacceptably life quality [50].

Campbell (2012, p. 212) stated: ‘We all live and breathe ableist logic’. The effects of living in an ableist society are described by Hammell as ‘toxic assumptions’ and that, good intentions overruled, unlearning ableism, is a ‘constant struggle’ ([10]p.9). Our theoretical stance based on CDS [23] has methodological implications, as it demands reconsidering of conventional assumptions and a commitment to self-reflexivity. We, the authors, are both privileged western, non-disabled scholars and thus do not have first-hand experience with the topic. Although we have strived to be aware of our preconceptions and positions, the assumptions we have absorbed from living in an ableist society should be acknowledged.

Today, CDS is characterised by lively interdisciplinary debate that has produced a vast body of knowledge about the complex intersection of social, cultural, and structural factors that shape the lives of disabled people of all ages [21–23,51,52]. An example of such intersection is the intertwined effects of barriers within different environmental dimensions, such as when disabled people feel unwelcome and stigmatised in an inaccessible environment or when it requires extreme effort, time or energy to move around and act [53–56]. The special way in which disabled people are often treated has been emphasised [48], and that attention is focussed on their impairments [6,57,58] while other aspects of their lives are given limited weight. By centring on disability rights and involvement of disabled people [23] CDS seeks out disabled people’s input as experts in addressing the marginalisation and exclusion they encounter in society.

A growing publication of studies within occupational therapy or science focus on the experiences of disabled people using an occupational lens and CDS perspective [2,5,42,59–61]; address policy aspects related to disability [6,41,62–64] or ableism directly [10,65–68]. Still, this emphasis needs to transform better into practice as emphasised by the authors.

The tenets of universal design

The concept of UD developed in the United States as human rights movements emphasised the importance of making the environment more accessible, thus promoting more equal opportunities for people [69]. The term is traced to the architect and product designer Ronald Mace [70], who was a wheelchair user. He and his team outlined seven main principles: ensuring equality and fairness, flexibility in use, simple and intuitive use, available and perceptible information, tolerance for error, low physical effort, and consideration to size and space. The main idea entailed creating environments that are universally accessible to include individuals with different abilities and limitations [71]. Furthermore, UD recognised the value of all people and their right to freedom, independence and human dignity [72]. For a long time, UD was primarily directed at the constructed environment, such as urban planning, architecture and object design [31] but increasingly, aspects of the social environment are also being considered, such as perspectives, policies and practices [24,35,73].

The term UD holds significant importance in the CRPD and in article 2 UD is defined as ‘the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialised design’ [74]. In the World report on disability [75] UD is described as a process that promotes usability, safety, health and social inclusion through the design and organisation of the environment, equipment and systems to address human diversity and competence. In the new Global report on health equity for persons with disabilities key policy and programmatic actions are outlined along with recommendations to reduce these health inequities such as through UD [43].

Undoubtedly, UD may be called a utopian concept because designing the environment to benefit all people is difficult due to conflicting needs and preferences [33]. Disabled people, for example, are by no means a homogenous group. Still, it is essential to focus on the inclusive goal of UD and to ensure that society is heading towards that goal [76]. Similarly, although usability, or the fit between individuals, their occupations and their environment, is the preferred outcome [30] the UD discourse has often focussed unilaterally on the person and the physical environment while the occupations carried out in the environments and the interactions between these domains are not referred to in much detail [77].

It should be noted that the UD concept has been critiqued for potentially disregarding the diversity this approach is attempting to meet [25,77]. Imrie [29] points out that the term ‘universal’ refers directly and indirectly to the notion of a general human being and Winance [78] claims that the concept may reduce diversity to the general and universal. Even when considering the diversity of people and accessibility for all, the universal in the UD context may risk being interpreted based on what is considered typical. We also believe that the emphasis on construction, function and aesthetics typically related to ‘design’ can steer the discussion unilaterally and potentially disregard crucial aspects of the social environment. Nevertheless, many UD scholars have indeed focussed on human diversity and the importance of context [26,32,34,35,72,73,77,79] rather than reducing the concept to a ‘one size fits all’ strategy. The valuable expertise and knowledge of disabled people as users in relation to UD have been emphasised [26,35,36,43] and the concept has been embraced within disability communities as a means to promote social justice and human rights.

Empirical examples

As aforementioned, many of the barriers faced by disabled people are rooted in a complex interplay between material, social, cultural, and political structures and systems [6,7,65,80]. Disabled people’s accounts often reveal painful experiences of inaccessible physical and social environments, discriminatory attitudes, lack of expectations, limited choices, and inadequate supports [81–83]. Similar accounts have surfaced in our research, and below, we provide examples that elucidate some of the effects of disabling environments for the disabled children, youth, and adults who participated in our studies. Information about the larger studies these examples are derived from are thoroughly described in our earlier publications. The studies were conducted in Iceland which is a high-income country and maintains a Nordic social welfare system [84] where disabled people are entitled to special services and supports (Laws on services for disabled people with long-term needs for support, 2018). In 2016 Iceland ratified the CRPD.

Table 1. Example questions for occupational therapists to embrace CDS and UD perspectives in practice and research.

Level	Example questions
Macro	What is the content and requirements of the CRPD? What are the rights of disabled people according to local legislations? Do current legislations/policies reflect the fundamental human rights of disabled people? Do policies and legal texts reflect a relational understanding of disability? Are principles of equality and non-discrimination visible and valued in local policy context?
Meso	Do methods, assessments, and overall implementation of services/research reflect the needs and preferences of disabled people? Is the service/research and attitudes of service providers/researchers non-discriminatory and in line with the CRPD? Is the research/service/technology/product inclusive, accessible and usable by disabled people?
Micro	Are the priorities and experiences of disabled people valued and in focus in the service/research? Do disabled people’s priorities and experiences guide service implementation or research approach? Are disabled people actively involved in decision making regarding the services/research and in monitoring and evaluating outcomes?

Example 1: Growing up with disability

The first example is based on a research project focussed on the life quality and participation of disabled children and young people in Iceland (www.life-dcy.is). As part of the project, qualitative case studies were conducted with children and focus groups with young people with various types of impairments. The study design, methodology, methods and ethics are thoroughly described in other publications [57,85,86]. The examples used here come from one of the case studies and focus group discussions about environmental influences on wellbeing.

Saga was in the 6th grade of primary school when the LIFE-DCY study was conducted. Saga was a talented student and had good friends at school. She had a neuromuscular disease that limited her ability to move around. She used a manual wheelchair and a walker to travel indoors and an electric wheelchair outside. From a young age, Saga had received occupational therapy services intermittently which focussed first and foremost on providing assistive devices. According to her parents and teachers there had been limited collaboration with her home and school.

Adjustments had been made to accommodate Saga’s needs for travel within school, many of which required her to travel in other spaces than the rest of her class. Due to a lack of space in the main building, most related subjects were taught in portable classrooms on the school grounds. During the harsh Icelandic winter, Saga often had difficulty getting between the main building and these classrooms. When data collection took place, the school administration had made plans to locate Saga’s class in one of the portable classrooms the following winter in line with established practice for her age grade. Although Saga and her parents objected loudly, it seemed impossible to accommodate their wishes due to school tradition.

Initially, Saga found the assistance she received within school stigmatising and intrusive. ‘They just mess with everything [and some have] an attitude’, she said. She described how once she had asked the teacher assistant to leave because she was good with the task at hand. The assistant then replied gruffly, ‘All right, if you do not want to accept my help, I’m just doing my job!’ During the later stages of the research, Saga got personal assistance and was much more in control over where, when, and how she was provided assistance, which she appreciated.

Numerous incidents were noted where accessibility issues were not adequately addressed in connection with school field trips. One afternoon, Saga’s mother was asked to keep the girl at home the next day when an exciting outing was to occur, due to lack of access at the destination. Another time, a local bus was to be used on a field trip. When it arrived, it was not wheelchair accessible, so Saga and her assistant had to wait for 20 min for the next bus while her classmates and teacher went ahead. In another instance, the bus driver demanded that Saga sat in her wheelchair on the bus instead of with her friends. This became quite a scene, and Saga found it difficult to get so much negative attention. Saga’s experiences reflect exclusion and marginalisation based on ableist views although this was undoubtedly never the intention of those involved.

Similarly, the young people with different impairment types (mobility, sensory, psychosocial and mild intellectual), who participated in the LIFE-DCY focus groups [57,58,85] described how they found inaccessible environments created by and for non-disabled people physically and emotionally challenging. Participants’ accounts also echoed the oppression of organisations and systems that maintained negative stereotypes about disability as unnatural and undesirable, leaving them feeling inadequate and/or flawed from an early age. Tinna age 25 said: ‘I once overheard my elementery school teacher saying to another teacher in the hallway, they didn’t see me: ‘I find it strange that Tinna has never told me how bad she feels about her disability’. That they just assumed that I must feel bad’.

Access to social spaces, activities, and opportunities typical for young people was often restricted or simply denied [58,87]. Fighting prejudice, stigma, and exclusion manifested in anxiety, depression, and isolation by some focus group participants as the years went by [57]. These narratives elucidated how structural arrangements may join with subjective and bodily experiences, affecting health and wellbeing. Occupational therapists and other health professionals thus need to acknowledge the impact of society’s and their own ableist thinking, which greatly affects the way that services are designed and delivered [10,58,88].

Example 2: Community mobility and participation in society

The second example is based on a research project on community mobility of people with mobility impairments in Iceland [89]. In this study, the second author conducted a policy review and focus group interviews with people with mobility impairments and individuals who worked closely with them. The approach to this research project is described in former publications [53,90].

Multiple issues were identified in the study that limit disabled people’s opportunities to move around, do what is important to them, and partake in society on an equal basis as others. Many hindrances were rooted in policy and service implementation, attitudes or ignorance of disabled people’s situation. These included limited and inflexible transportation services and thoughtlessness such as when sidewalks are only partially cleared of snow, or obstacles are planted on top of ramps making them unusable for people with mobility impairments [53]. While Icelandic policies, such as the CRPD, legislations and action plans, emphasise UD, this emphasis was often not reflected in the policy documents [89,90]. In particular, the policy review uncovered insufficient involvement of disabled people at the policy level, limiting their power to shape policies and services that directly impact their lives. Even when services intended for disabled people were evaluated, users were not asked about their usability, such as if they could actually utilise public transportation [89].

Little clarity and ableist perspective in Icelandic policy documents has resulted in vague open-to-interpretation statements that can lead to restricted services for disabled people. For example, although these documents declare equal rights for everyone to use public transportation, denial of access may still be permissible if the design of the vehicle physically prevents disabled person from boarding [91,92]. Rather than promoting UD and inclusion for all people, these policies serve to discriminate and violate the fundamental human rights of disabled people. In addition, it was almost impossible to find information about whether official transportation services were accessible. For example, by reading the minutes of meeting the second author figured out by chance that public buses in the municipality are considered accessible but nothing on the official transportation service websites indicated such accessibility [89]. Prioritisation of transportation services for disabled people also significantly diminishes the usability of the service as they are mainly provided for work and healthcare appointments, effectively limiting access to leisure activities or impromptu outings such as going to the movies or visiting friends. As a result, disabled people’s opportunities to participate in valued occupations are severely restricted [53,90].

While the CRPD is officially adopted as government policy in Iceland, the policies and service implementation must align more closely with its principles. The current policy implementation effectively limits the opportunities of individuals with mobility impairments, and perpetuates a system of oppression, discrimination and marginalisation created at the policy level. Thus, professionals, including occupational therapists, must ask critical questions such as if services are usable and enable disabled people to pursue occupations that align with their needs and aspirations. Furthermore, they should reflect on whether and how ableist perspectives may be influencing policy and service decisions.

Occupational therapy interventions guided by the tenets of CDS and UD

Lid [32,34,35] describes how UD relates to different layers of society along with the knowledge and approach that needs to be considered and applied at each level. Below we elaborate on her ideas [32], which intersect the human rights approach of the CRPD [24] with UD in order to clarify the emphasis and decisions to be made at each level. We also draw on CDS in order to critically question taken-for-granted assumptions that may affect decisions at different levels and their potential effects when they underpin and are enacted in practice.

At the macro level, legislation and policies based on the CRPD [24] are the guiding framework. The overall message is that disabled people of all ages should be treated as equal citizens with the same rights as others. Their fundamental human rights must be guaranteed and translated into policies and legislation that direct services and supports, guided by the principles of UD. As an example following the ratification of the CRPD, the legal framework has started to integrate the relational understanding of disability, along with the goals and requirements outlined in the Convention [93] in Iceland. It is important that occupational therapists familiarise themselves with the CRPD and related legislation [16,80] and adhere to the principles of equality and non-discrimination which are in focus in the Convention. In contrast, in a recent Icelandic study occupational therapists and other professionals who worked with disabled children and their families were unfamiliar with the content and requirements of the CRPD and thus not aware of the radical changes it entails regarding the view on disability and the provision of services [94].

The policies from the macro level guide the implementation of services that occur at the meso level, where UD can be used as a guideline and implemented in technical standards and specifications. At this level, decisions may involve ensuring that choice and utilisation of measures in rehabilitation settings reflect the needs and preferences of disabled people instead of focussing solely on their underlying impairments; that organisation of transportation services is in line with the CRPD to give disabled people options for where, when and how they travel [24]; and the establishment of guidelines and standards for IT products to guarantee accessibility and equal use by people with intellectual disabilities and elderly people who may experience difficulties in utilising information technologies [95].

By applying a critical lens, occupational therapists should contemplate and question whether conventional representations of priorities and problems in policies at the macro-level and their implementation at the meso-level may in fact maintain oppressive structures and ideologies and steer the emphasis unilaterally towards what is considered typical alas desirable or possible. For example, policies that prioritise work over other aspects of people’s lives [7,90,96] or reflect the ‘typical’ (i.e. ableist) life course trajectory that does not allow for different ways of being and doing [6,64]. The value that occupational therapists have placed on independence in self-care activities throughout the years arguably reflects an ableist view. Thus critical reflections are important to explicate and scrutinise policies, implementation of standards and specifications and other socio-cultural-material barriers which maintain the marginalisation of disabled people [62,97,98] and limit their participation in occupations.

At the micro level, UD is about usability and feasibility based on the experiences of disabled individuals. Practical knowledge and attitudes are tested in an interdisciplinary context where the UD ideology guides solutions to specific contextual challenges they may face, such as regarding access to the built environment, information and technology. Decisions and implementations must centre the will and experience of the disabled person or group regarding the contextual factors that shape their occupations, and their involvement in decision making must be ensured. Unfortunately, this is not always the case, as evidenced by an audit checklist for new buildings in Iceland that places more emphasis on the number and availability of accessible washrooms rather than on their actual usefulness to disabled users [90]. In this context, it may be beneficial to employ a collectivist approach, such as by working with groups of disabled scholars, activists and organisations to raise awareness on discriminatory practices, advocate for prioritisation of disability inclusion, mediate priorities and plans, strategize available resources, support inclusive implementation and evaluation of outcomes and thus create systems and processes that ensure equal participation of disabled people [43,99] (Table 1).

It is essential to consider all three levels – macro, meso, and micro – in occupational therapy research and practise. However, the constructed and local environment as well as technical aspects often appear to gain more attention than disabling structural arrangements, values, and attitudes that restrict people’s participation in valued occupations [100] Reportedly, Saga’s occupational therapists first and foremost focussed on providing assistive devices and in two other Icelandic studies, apart from physical accessibility environmental hindrances were hardly addressed by occupational therapists who worked with disabled children and their families. Overall, the services were dominated by medical notions and financial and practical considerations, and due to restrictive policies, heavy workloads, and professional traditions, the therapists had difficulties moving away from the prevalent medical view and ways of working [86,94]. As aforementioned, normative ableist expectations and other implicit social biases that people may be unconscious of affect their ways of thinking and working. Thus occupational therapists need to critically reflect on how such taken-for-granted assumptions may influence and guide their actions [6].

While the challenges of changing established working practices should not be downplayed, it is important to maintain a positive outlook, as the adage ‘where there is a will, there is a way’ suggests. Inspired by the goal of a just and equitable society, Laliberte Rudman [12] claims that occupational therapists need to stop thinking that they cannot change things. Instead, they should be optimistic about the possibilities for improving situations to challenge the status quo to create more equitable societies in collaboration with marginalised groups. Occupational therapists can advocate for such change by collaborating with groups or communities of disabled people to change policies and services to be more equitable and usable and raise awareness of the effects of ableism. As stated by disabled scholar Heidi Janz [50]: ‘Only if and when health care providers, educators and students are routinely and meaningfully exposed to the perspectives of people with disabilities can they develop a consistent proficiency in diagnosing and treating ableism, in their profession generally as well as in their own practice’.

Drawing on values and knowledge of the interaction between individuals, context, and occupation, occupational therapists can shape policies and practices. Such advocacy can be at the governmental level (macro), the community level, or within their workplaces (meso) in collaboration with disabled people (micro). Utilising CDS and UD perspectives enables occupational therapists to better acknowledge and act on the multiple contextual factors that shape occupational opportunities for disabled people, including those created by power dynamics, prejudice, and ableism.

Concluding remarks

In this article, the importance of incorporating CDS and UD perspectives into occupational therapy practice and research has been highlighted. Although these perspectives have received increased attention within the profession [2,15,77,101] they need to be better translated to practice. We urge occupational therapy practitioners and researchers to align with CDS scholars and act on the concerns and priorities of disability communities who call for a more just society and that their human rights as put forward in the CRPD be respected. To achieve this, the complex web of structural and socio-material arrangements that constrain disabled peoples’ choices and sustain their marginalised position within society need to be better acknowledged and addressed. As aforementioned we emphasise the importance of collaborating with disabled people and ensure that they are involved in decision-making throughout the process and when evaluating outcomes.

Incorporating CDS and UD perspectives more effectively in occupational therapy practice and research requires a change in mindset and ways of working. Nevertheless, the interplay of different environmental factors that affect people’s possibilities for participation is already ingrained in occupational therapy professional ideology, such as in the Person-Environment-Occupation Model [102], the Canadian Model of Occupational Performance and Engagement [103], the Model of Human Occupation [104,105] as well as the new Canadian Model of Occupational Participation [13]. This knowledge needs to be expanded by better scrutinising hindrances that may be hidden within social and structural spaces, transferred to systems and policies, and implemented in services. By recognising and understanding these hindrances and proactively working to dismantle them we can pave the way for more equitable and just service delivery, as mandated by policy [24,43].

Acknowledgements

The authors thank the participants of our studies. The LIFE-DCY study was funded by the Icelandic Research Fund (grant number: 174299-051) and the University of Iceland Research Fund.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 In line with our theoretical standpoint, the term disabled people is used throughout this article to signify that disability arises in the interaction between people with impairments and their environments. Although people with impairments may be disabled in many situations they do not ‘have’ disabilities.