Geographies, mobilities and politics for disabled people: power-assisted device practice

ABSTRACT

In this paper, key findings are presented from an Australian Research Council (ARC) Linkage project that investigated the geographies, mobilities and politics for disabled people who roll powered assisted devices (wheelchairs and mobility scooters). We offer a spatial framework to think about the politics of exclusion/inclusion from public space along three dimensions: as a distributed institutional decision-making process, as personal, and as an event/journey. We recruited 68 disabled people to collaborate in a multi-stage, mixed-method qualitative project from 2020–2022. Four themes emerged from our thematic analysis of everyday power-assisted device practices that offer insights to what enables or constrains access to public space: the desire for social connections and independence, normative assumptions of standing design, the built form when going places (steps, gutters and stairs) alongside the interdependencies of various care and transport networks. We point to the implications for policy, planning and future research.

KEYWORDS:

• Geographies
• mobilities
• disability
• politics
• mobility devices
• accessibility

1. Introduction

In Australia, accessibility is a key policy objective for disabled people (Australian Disability Strategy 2021–2031; Australian Local Government Association 2016). The production of unjust mobilities for disabled people requires ongoing concentrated efforts for social change. This project came about through a collaboration between the authors and Assistive Technology Suppliers Australia. The project aim was to investigate accessibility inequalities and provide support for positive social change to those who roll¹ powered mobility devices (wheelchairs and mobility scooters). Our research question asked: what can we learn to facilitate equitable spatial access from the experiences of disabled people who rely on powered mobility devices?

This article aims to work towards a richer spatial conceptual framework of disabled people’s unequal mobility that thinks across the social, embodied, and affective approaches to disability. Our theoretical approach weaves together three complementary strands of thinking within disability geography. First, the social model of disability is telling for its concern with how ableism operates to silence and exclude disabled people from public space through considering the planning process. Second, feminist geographical thought on the body facilitates engagement with the personal and how disability emerges in and through the recursive relationships that comprise spaces and subjects. Third, assemblage thinking focusses on how disability, mobility and accessibility become implicated in the senses and sensibilities of the unfolding journey itself. Attention turns to the sensations, or affective force, of situated social and material relations that comprise routes. Specifically, how the affective force increases or decreases the bodily capacity to act and sense. Truly understanding the unequal mobilities of disabled people relates not only to an ableist planning regime, equally important are the sensations of the socio-material relations, rhythms and speeds of everyday journeys themselves that are conceived to co-constitute a sense of self, place and mobility.

The paper is structured as follows. In the next section we give an outline of our conceptual framework to augment understanding of the intersection between mobilities, geographies and disability politics. Then we explain the context, research design and methodology. We present four key findings from our thematic analysis. In the discussion and conclusion, we point to the value of this conceptual framework for extending mobile disability politics and the implications for research and practice.

2. Conceptual framework: geographies, mobilities and politics for disabled people

Three complementary strands of theory are key to advancing the field and inform our thinking about how disability access to public space is wrapped up in various mobilities, geographies and politics. First, a social model of disability gives attention to how discourses of ableism operate to silence, exclude and disable people within decision-making processes (Laws 1994; Kitchin 1998). This brings to light the taken-for-granted norms in various institutions where ‘mobility and movement are defined through discourses which serve to alienate impaired bodies and to prioritise the movement of what Imrie (2004, 1642) terms “the mobile body”’. This effectively excludes disabled people from accessing public space through how regulatory processes are shaped by a welfare agenda rather than through consideration of human rights (Oliver 1990; Gleeson 1996, 1999; Imrie 1996; 2000). The work of Murray (2004), Tregaskis (2004) and Oliver (2004) advocate for the social disability model to understand the mechanisms that work to disable and marginalise people in public spaces and how ableism is embedded into policy, procedure and built environment – including standing design, gutters and heavy doors. Yet, as feminist scholars noted, the social disability model tended to overlook the specificities and materiality of the body itself by operating along the biological/social divide (Chouinard 1997; Butler and Parr 1999; Moss and Dyck 2002).

To address this gap, feminist disability studies have given attention to the sensual body conceived through a reciprocal relationship with space (Moss and Dyck 2002; Parr 2006; Morrison et al. 2020). This strand of disability scholarship draws on feminist scholars’ long-standing interest in the political as personal, and specifically the role of the senses and sensations in the politics of everyday life (Grosz 1994, 2008; Probyn 1996; Longhurst 2001). A key contention of this scholarship is the connection between macro level politics or decision-making processes and the micro level or personal (Davidson and Bondi 2004; Thien 2005). For example, Garland Thomson’s (2011) work on ‘fitting’ or ‘misfitting’ as a framework makes clear the importance of a relational understanding of space to interpret how disability comes to be felt through how bodies ‘rub up against’ the socio-material world. Highlighted are how the sensuous relationships between objects and people related to dwelling and travelling may be felt as disabling. The utility of ideas about how we are embodied in, dwell and move through diverse spaces is always underpinned by how mobile practices are reinforced by ideologies. The labour of feminist scholars challenged the idea of a fixed disabled identity and places preconfigured as accessible or not.

Feminist disability research draws on notions of performativity and embodiment. The notion of performativity underscores the importance of thinking about mobility as always a relational achievement, configured at the intersection between disability, gender, class, sexuality and race/ethnicity (Chouinard 1997). Feminist disability research through the conceptual lens of embodiment investigates what emotions do, rather than debate what emotions are. For instance, embodied accounts of disability include care that occurs within the home (Yantzi and Rosenberg 2008; Giesbrecht et al. 2019; Morrison 2021). Our framework builds upon this work by foregrounding the emotional labour of journeying by powered mobility device. Disabled people journeying alone by powered mobility devices are very aware of their dependency on infrastructure and all the possibilities of things that may go wrong, including uneven footpaths, speeding traffic and broken lifts. The anxiety surrounding the loss of a sense of self as independent may translate into a mode of carefulness that restricts movement in public space.

The third concerns the affective politics of events/journeys, that is concerned with agency, embodiment and the sensuous properties of routes. Hall and Wilton (2017) invoked Deleuze and Guattari’s assemblage thinking to advance disability geography by better understanding the affective relations of events that are driven by desire for connections and engagements with other bodies. Assemblages are conceived as provisional working socio-material arrangements or ‘home’ territories that enhance a person’s ability to make sense of themselves and the world around them. The centrality of the emplaced, relational, unfolding, and sensuous body in this work goes beyond the political and collective concern of the feminist and social model of disability by attending to how the sense and sensibilities of everyday movement – including speed, rhythms and spacings – may reproduce or reconfigure taken-for-granted mobility social and spatial hierarchies and norms. Assemblage thinking takes up Cresswell’s (2010, 17) call ‘for a more finely developed politics of mobility’ that attends to such things as ‘motive force, speed, rhythm, route, experience and friction’.

To help think about how disability is felt through the sense and sensibilities of unfolding repetitive routines of a journey we consider Bissell’s (2016) and Waitt et al.’s (2021) thoughts on Deleuze and Parnet’s (2007) notions of how ‘home territories’ are conceived as comprised of molar and molecular lines. Molar lines are understood as affective intensities or forces that follow and reproduce regulatory frameworks and unwritten rules, alongside social norms and hierarchies. Molar lines are understood as enabling a process of reterritorialisation of ‘home territories’ where the bodily alignment with the social is taken-for-granted and felt as comfort or safety. In political terms, molar lines are considered to reinforce the status quo. In contrast, molecular lines are affective intensities or forces, generated by moments of the journey itself. Molecular lines may work with molar lines to sustain the status quo (reterritorialisation). Alternatively, molecular lines may offer the potential for change through how living without a ‘home’ territory is felt as becoming vulnerable, uneasy and/or disabled (deterritorialisation). For example, Waitt and Harada (2022) discuss how disability may be felt by disruption to rolling a powered mobility device through interactions with pedestrians, traffic, ramps, curbs, uneven surfaces and parking. The effects of rolling without a ‘home’ territory are conceived as paradoxical, impacting on the choice of where, when and whether to roll a powered mobility device. On the one hand, felt disability may mobilise political advocacy. On the other hand, rolling without a protective ‘home’ territory and becoming disabled may diminish affective capacities to roll specific routes at specific times.

3. Research design and methods

From 2020–2022, we conducted research in three field sites in New South Wales (NSW), Australia: South-Western Sydney, Wollongong and Ballina. The selection of field sites is characterised by their shared relatively higher number of powered mobility device sales, alongside differences in the built infrastructure and the cultural politics of accessibility within metropolitan, regional and rural contexts. Ethics approval was secured prior to starting the fieldwork.

The research design goal was to position disabled people as co-researchers and experts in their own lives. Embracing a participatory ethnographic approach, disabled people were involved throughout the research, from design to fieldwork and analysis. During the design phase, a disabled person who was reliant upon wheelchair mobility was employed as a research assistant to advise on modes and methods of communication and recruitment. The research design combined semi-structured interviews with photographic/video-diaries and follow-up conversations. This combination of methods allowed people who gave their consent to lead conversations about the role of mobility aids in their life, their experience of everyday routines, routes and places they felt they could access, or not, by their powered mobility device.

Sixty-eight disabled people (34 women, 34 men), aged between 20 and 85 years, and three carers consented to participate. Selection criteria included being aged over 18, using a motorised mobility device for at least 6 months, and living in one of the field sites. People who consented were from a range of different socio-economic backgrounds and cultural ancestries. Each was given the choice of selecting a pseudonym.

Before commencing the fieldwork, people who consented were positioned as co-researchers rather than research subjects. In practice, this meant encouraging co-researchers to select methods which provided flexibility and creativity for communicating mobility aid life narratives alongside the embodied knowledge of movement (Fincham, McGuinness, and Murray 2010; Büscher, Urry, and Witchger 2010; Merriman 2014). For our co-researchers, this meant a choice to convey experiences through spoken or written words, photography, videography, or artistic expression (e.g. paintings, drawings) alongside a conventional semi-structured interview. The collaborative research design was to help advance a research agenda with rather than on disabled people, conduct a study that offered some practical benefits, address the unequal power relationships within the research process and acknowledge our position as non-disabled geographers. Relationships with co-researchers were built and strengthened over time through sharing disabling experiences, informal meetings and check-ins by phone, text, email, project updates and art exhibitions. Conversations lasted between 60–120 min, were audio recorded and transcribed verbatim.

The thematic analysis combined deductive (theory-driven) and inductive (data-driven) reasoning. We began by familiarising ourselves with the full range of empirical data, collected using audio and visual data to compare and contrast with themes uncovered in the interviews, which were independently coded by the research team. To ensure credibility and enhance trustworthiness of emerging themes about accessibility, we worked together to review the codes through a process of comparison, resolving any discrepancies that arose and seeking clarification through consulting with our co-researchers (Guba 1990). The analysis process was enriched by providing opportunities for our co-researchers to confirm or challenge the findings of the research team to better represent the lived experiences of powered mobility devices across a diverse socio-economic group.

4. Interpretation

We provide a summary of the findings by way of an illustrative diagram divided into four quadrants (Figure 1). As depicted, there are four key research themes that frame disability experience on-the-move: the desire for social connections and independence; normative assumptions of standing design; the built form when going places (steps, gutters and stairs): and the interdependencies of various care and transport networks. In the following sections we explore each quadrant and provide examples that illustrate how powered mobility device mobility works to both connect and constrain disabled people in a range of ways that are not always evenly experienced.

Figure 1. Four emergent themes that cut across life narratives of co-researchers and which are related to the key focus of the research project-geographies, mobilities and politics for people who roll powered mobility devices.

4.1. The desire for social relations and making connections

Co-researchers told us about the importance of powered mobility devices to establish and maintain social relations regardless of age or physical impairment, from ageing, illness, injury or long-term medical conditions. This confirms previous research drawing on assemblage thinking that considers the relationship between mobility and wellbeing (Kwan and Schwanen 2016). Co-researchers aligned the desire to roll powered mobility devices with discourses of independence; to go to work and to have a degree of autonomy over when and where they went, without having to constantly rely on others. As explained by Brittany, 29 years old, living with juvenile rheumatoid arthritis for almost 20 years, and who lives in a suburb of Western Sydney:

I wouldn't have a life if I didn't have this chair. I would be confined to my bed or confined to a manual wheelchair. Then I wouldn't have any freedom of my own. No independence whatsoever. So, the chair gives me everything.

The affective experience of independence was articulated in how power assisted mobility became a primary desire; people literally and figuratively ‘couldn’t live without it’. We propose that the affective experiences that arise from the pleasures of mobility reinforce how people understand themselves and place. Here, the embodied affect of wanting a powered mobility device reinforces molar lines of the neoliberal individual that values self-reliance, independence and freedom (Fritsch 2013).

Co-researchers were attuned to the double-bind of powered mobility devices that simultaneously sustained life through the promise of accessibility and threatened their existence. Berlant’s (2010) term ‘cruel optimism’ is helpful to understand this double-bind. For instance, tangled up with these positive affects were other molar lines that produce disability through difference, pity or disgust. For example, discriminatory practices that exclude people who roll mobility scooters from public spaces are informed by these ideas and acceptance becomes an ongoing struggle. As Ashley, who is 56 years of age, resides in Wollongong, with Duchenne muscular dystrophy and rolls a mobility scooter, explains:

We are invisible. We may be in a big vehicle [mobility scooter] as I would say, and it’s surprising how people can't see you, or people can see you and they love to stare. I'm like, I'm still dealing with people staring. But for me, I just think, ‘Holy hell!’ You should be able to see us. You need to understand, we have feelings as well, so if you say something stupid with me, you're going to get an eye roll or a mouthful.

Ashley points to the ways in which some power assisted device-bodies are judged as ‘invisible’ or unfamiliar and therefore ‘out of place’. Ashley is attuned to how she is judged as out of place rolling her mobility scooter in public spaces by stares that interpellated her as not conforming to the molar line of recognisable markers of either ability or disability. As Ashley illustrates, these judgements inflected by ableism may be fleeting but generate heightened affective intensities through how some bodies are judged as more authentically disabled than others.

The joy of inclusion and accessibility made possible by mobility devices does not always extend to other facilities designed to improve and enhance accessibility, like lifts, ramps and large bathroom stalls. Despite being designed for accessibility, often people reported feeling their disability in particular ways that highlight the relational nature of bodies and places. For example, Elizabeth, who is 61 years of age, rolls both a scooter and wheelchair, with spina bifida and resides in Sydney, explains:

So, you can go into the lift and then face forward. But if people let you go in first then they’ll clamour in behind you and you are staring at the wall. And then you have to say ‘could you press floor three … ’ and then they will do that. And then you can’t see. And then you go ‘could you tell me … ’ you feel really disabled. It feels really awful.

Like Elizabeth, most co-researchers told us about their longing to move unremarkably. Yet, even in accessible spaces, like the lift, they could feel their disability as embodied.

4.2. Normative assumptions of standing design

In Australia, the default design of most buildings (entrances, doorways, passageways), infrastructure (roads, footpaths, lifts, trains), and public space (parks, beaches, pools) predates the 2014 accessibility standards that promote the circulation and flow of seated rolling bodies. The taken-for-granted qualities of the standing and walking body are the molar lines of mobility embedded in decision-making processes, making rolling-bodies feel out of place. This was narrated most frequently in rural and outer suburban stories about meeting gutters and kerbs, road crossings and footpaths and through their interactions with traffic, bicycles and pedestrians. Co-researchers conveyed the sense of exclusion viscerally. For example, Jim, who is 85 years of age, resides in an outer Sydney suburb with multiple sclerosis and rolls a scooter, explains,

I feel unsafe when I've got to cross the intersection at the highway and the road. It's a very large crossing and I put the scooter on fast to get over there as quickly as I can but I really don't feel safe.

For some co-researchers, these moments of unease, that may be conceived as rolling without a ‘home’ territory, often resulted in resentment at becoming a second-class citizen and mobilised political advocacy. For example, as Harold, who is 71 years of age, from Sydney with epilepsy and rolls a chin-controlled wheelchair, explained:

We tried to start a wheelchair group, it didn't last, it was just too difficult for people to be there, and to access where we had to access … They build all these modern shops, and they had all of these … you've probably seen it yourself, all the elevated tables. So, you sit high up, but they had no tables where you could actually sit at that (wheelchair) level … and the counters that you go to in a coffee shop, they're all too high. They're not at your level, there needs to be some thought put into having different levels of counters … I think the thing that really is getting to me just now, is this inequity. The inequity is just so incredible.

Harold highlights the value for disabled people of social interactions. Yet, his experience of the disabling power structures of the built environment, including table heights, worked against possibilities to create an inclusive wheelchair disability space. These difficulties of negotiating the heights of tables and shop counters may seem trivial. However, again the affective force of these meetings has the potential to accumulate over time and may produce exclusionary affects by reducing the capacity of disabled people to take part in everyday life.

4.3. The built form when going places

Co-researchers showed us through visual methods (photographs, videos) the places that they regularly visited. In interviews and follow-up conversations each narrated stories of improved access to public transport systems, retail shops and retrofitted public buildings for increased accessibility. Yet, the political will to generate disability space was often narrated as less in some rural than urban contexts and access to leisure facilities including pools, beaches or parks. Furthermore, co-researchers spoke of fleeting moments of becoming disabled when out and about in public spaces encountering a step when visiting places pitched as ‘accessible’ or how ableism remains embedded in the decision-making process. As Carrie, who is 45 years of age, rolls a mobility scooter and has systemic exertion intolerance disease, from Northern NSW explained:

There was an event once a month called Queer Stories. Various queer people would present and tell a story. They asked me to present a story at the next event. I checked with the venue whether it was wheelchair-accessible, and they said it was accessible. So, we go ahead. Next, we find out that the stage is not wheelchair-accessible. Because people who own the venue assume that the person with disability will consume, not provide.

Echoing the work of Morrison et al. (2020), Carrie highlights the problem that disability spaces are often not fully inclusive of disabled people. The socio-material relations that intersect to comprise this venue worked to include her as an audience member but not as a performer. Molar lines of the built environment are reproduced through how the role of disabled bodies is conceived as passive, while able-bodies are facilitated to be productive.

Again, the unease of becoming disabled by relations that comprise the built environment and rolling without a ‘home territory’ may result in political advocacy. For example, Chantelle, who is 54 years of age, from Sydney, with transverse myelitis and rolls a powered wheelchair, told us that:

If it's something I'm going to use very often, then I will pursue it for a number of years. The same with me trying to access into my kid’s school, was extremely difficult, and it took me three years of fighting with the education department until we got the ramp in.

Chantelle campaigned to have accessibility ramps installed in her daughter’s school so that she could attend concerts and performances. This example illustrates the concept of molar and molecular lines. Molar lines are physically expressed in the built environment and in turn reproduce abled-bodied identities. Molecular lines are the exclusionary affective intensities felt by Chantelle. For Chantelle, the molecular lines strengthen her resolve to undertake the work of advocacy for disabled people. While for others, their accumulated affective experiences may mean that they adopt different forms of resistance, or work within molar lines by planning journey times to accommodate privilege abled bodies.

4.4. Inter-dependencies of distributed care and transport networks

Until 2014, the default position of standing design meant that transport infrastructure aimed to promote the free flow of standing and walking bodies through public spaces. To enhance disability access, since 2014, Transport NSW (2017) has adopted a social approach to disability that locates the ‘problem’ with the built environment that then required infrastructure solutions, like designated disability spaces, lifts and ramps.

Instead, co-researchers pointed to the distributed networks of transport infrastructure that enabled a sense of self as independent. Each journey is a highly embodied and emotionally charged experience that required co-researchers to take care to avoid becoming disabled. Co-researchers spoke of the emotional work of planning journeys that often became a complex scheduling operation. Planning included accessing online information about accessible services to finding ways to utilise their own mobility aids within existing infrastructure. For example, Fred, who is 53 years of age, from Sydney, with quadriplegia as the result of an accident and rolls a powered wheelchair, said:

You can't be as spontaneous as you'd like to be but … So, I think it just comes with having a disability … there can be an effort and a rigmarole sometimes when you do want to organise things, you've got to organise your transport. So, that requires tools. You've got to think about where you're going, is it going to be accessible.

Fred illustrates the emotional labour of transport planning. Often discussed were the intense frustrations at the challenges of navigating a disabling transport system. Journeys to, and from, a destination became felt as disabling because of broken paths, lifts that were out of order or support staff that did not turn up. Co-researchers narrated stories of journeying forward and backwards, finding alternative routes, changing between buses and trains or using accessible taxis to get where they wanted to go. For example, Chantelle explained:

Has it got a train station that's got a lift? Are the lifts working? And so, wherever you go, you've got to plan if the lift is working or not working. Sometimes you can go somewhere and the lifts work in the morning, and then will not be working when you're going back again. and that can mean instead of going forward on your journey you have to go backwards on your journey to another accessible station, get out, change trains, get back on the train … So, you've got to do this convoluted exercise to get from woe to go.

Chantelle illustrates how planning journeys evokes an anxious feeling. Chantelle is very aware of everything that can go wrong. Again, her anxiety may be conceived as the possibility of rolling without a ‘home territory’. This mode of carefulness may generate a heightened self-reflection of becoming disabled that works towards restricted mobility within public space or advocacy.

5. Discussion and conclusion

This article is an attempt to work towards a richer spatial conceptual framework of unequal mobility of disabled people that draws together the social, embodied and affective approaches to disability. Our conceptual approach demands an interpretation of how disabled people make sense of themselves, routes and mobility while on the move. Our methods enabled us to gather insights about our co-researchers’ mobility life narratives, alongside how unfolding journey events generate moments of frustration that might not only test but mobilise advocacy. Our analysis suggested the existence of four themes that enable, or constrain, access to public space: the desire for social connections and independence, normative assumptions of standing design, the built form when going places (steps, gutters and stairs) and the interdependencies of various care and transport networks.

Our analysis suggests that the regulation of spaces by municipal authorities requires thinking not only about urban design for power assisted devices. Equally important is challenging the binary thinking implicit in ideas about ability and disability. Co-researchers’ narratives of being hailed into existence as disabled are highly context dependent. We illustrated how the emotional labour of planning journeys is an anxious process. This mode of carefulness may deter powered assisted device-bodies going certain places because of concerns about becoming disabled. It is therefore important to unsettle how disability is constituted in different social contexts. Consideration must be given to disabled people’s experience of lengthy, complex network-wide trips that enable possibilities to form and reform affirmative social relationships. We recognise the increased reliance on communication technologies but note the lack of detailed accessibility information that is vital to facilitate planning and journeying (Rachelle et al., 2019).

Our work points to the importance of valuing the body and its capacity to act and sense. We noted the importance of paying attention to the unfolding affective intensities of journeys themselves, alongside how bodies are placed within enabling and disabling transport and urban decision-making structures. We argue that moments of frustration may be conceived as rolling without a ‘home’ territory, within the socio-material relations that configure co-researchers’ sense of self as independent and capable. Such moments may trigger advocacy, despair or something else.

There is a need for greater attention to the geographies, mobility and politics of powered mobility devices to improve access to public space for disabled people. Mobility justice should not be an ‘add-on’ to existing systems, rather there is a need to consult disabled people on projects and policy changes to ensure meaningful input which can include a range of diverse disabilities (Rachele et al. 2019; van Holstein, Wiesel, and Legacy 2022). Our conclusion resonates with that of Jerome et al. (2019) that disabled people’s mobility experiences offer an important starting point to learn how to move with, and care for, disabled people to help enable their everyday journeys.

Acknowledgments

The authors wish to acknowledge the support from Linkage Partner Assistive Technology Services Australia (ATSA).

Disclosure statement

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

Additional information

Funding

This work was supported by the Australian Research Council under Grant LP180100913.

Notes on contributors

Theresa Harada

Theresa Harada is an Associate Research Fellow at the Faculty of Arts, Social Sciences and Humanities, School of Geography and Sustainable Communities at the University of Wollongong.

Gordon Waitt

Gordon Waitt is a Senior Professor at the Faculty of Arts, Social Sciences and Humanities, School of Geography and Sustainable Communities at the University of Wollongong.

Notes

1 Movement is conceived as pivotal to the making, remaking and unmaking of self and place. We employ the term ‘roll’ to indicate the movement of assistive wheeled devices described by participants – although they are variously referred to as rolling, wheeling and driving. That said, we note the differentiated experience of rolling by manual wheelchairs, power assisted wheelchairs and mobility scooters.