Disability and cycling rarely appear in the same sentence and there is very little research about cyclists with physical disabilities. Nor, indeed, is there any acknowledgement of the experiences and needs of disabled cyclists in policy, practice or the public imagination. Nonetheless, cycling is a key form of mobility for people with disabilities, and cycling facilitates autonomy and independence of movement for many disabled people, as well as providing health-promoting physical activity. Drawing from qualitative interviews, this paper explores this gap in the context of the deficit model of disability and its impacts upon people with physical disabilities who cycle, many of whom who use their cycle as their main form of transport and mobility. It highlights the barriers that disabled cyclists face in terms of mobility, accessing cycling and the perceptions and attitudes which impede their everyday activities and underpin exclusionary policy, practice and infrastructure. Rejecting the deficit model of disability and recognising cycling as a key strength/ability for people with physical disabilities will lead to greater equality and improve the lives and experiences of disabled people.
In this paper I draw on qualitative interviews to explore the experiences of people with physical disabilities who cycle 1. There is currently very little knowledge or research about disabled people who cycle, and as such, they remain invisible and excluded from public policy, debates and infrastructure (Andrews et al., 2018; Calyton et al., 2017). Thus, despite cycling forming a key aspect of mobility and health promotion for disabled people, it remains absent from both cycling policy generally, and disability-specific policy regarding mobility, health and exercise. The deficit in knowledge and information has significant impacts in terms of barriers and access to cycling and mobility which were experienced by the research participants. My own personal experience is also testament to these impacts. Thus, notwithstanding that I consider myself to be fairly politically active and critically attuned, it was nonetheless only through a chance meeting a disability conference that I discovered that other people with physical disabilities cycled and used cycling as a means of mobility and, moreover, that there was an organisation local to me set up to facilitate this. Until then, even though I had always found cycling much easier than walking, and for many years I relied on my bicycle as my primary means of mobility, I had only ever considered this experience to be an anomaly rather than a common characteristic of disabled people. This chance discovery of other disabled cyclists was not only important in terms of empowering me to make rights claims about my use of a bicycle as a mobility aid, but it was also key to me being able to continue cycling (a handcycle) when I became a full-time wheelchair-user. For the majority of the participants in this research, cycling was also a chance discovery, and yet it was their main form of mobility and transport. Cycling allowed the participants to undertake a range of day-to-day activities which would otherwise be very difficult or impossible for them.
The contrast between public knowledge/policy and the experiences of people with disabilities is stark. There is virtually no policy or infrastructure which recognises or facilitates disabled people cycling, despite cycling being crucial to mobility. In this paper I explore this contrast in the context of the deficit model of disability, which positions physical disability and physical activity – especially cycling – as binary opposites. The deficit model is also entrenched in perceptions of disability, sport and exercise more broadly, and I highlight this in a critical analysis of the culture and impact of the Paralympic Games. Ultimately, the deficit model prevents cycling being acknowledged as a means of mobility for disabled people and cycles being recognised as mobility aids. It impedes access to cycling for disabled people, whose opportunities to discover and experience cycling are curtailed, and it feeds attitudinal and perceptual barriers which not only have significant impacts on the emotional well-being of disabled people, but also result in wider barriers in policy, infrastructure and practice.
A bicycle is a two wheeled vehicle for one person which is peddled with the feet; it is often referred to as a bike. A cycle may have two or more wheels and may be peddled with the hands or feet and transport one or more persons (see Clayton et al., 2017; Hickman, 2015; Wheels for Wellbeing 2017 for more detailed descriptions and imagery of non-standard cycles). A "cycle" is, therefore, an inclusive term which incorporates all forms of cycle and types of cyclist, while a bike or bicycle only refers to a more limited proportion of machines and the cycling population. Inclusive cycling refers to adapted or non-standard cycles/events which are accessible to people with disabilities. Throughout this paper I use the terms accordingly; however, some participants use the term "bike" to refer to a non-standard cycle.
Disability is not a neutral term nor a straightforward description of a human being – no one is entirely disabled, nor is anyone one hundred percent "able". Yet in medical practice, social policy and everyday culture, the term disability circulates as if it were such a simplistic binary. The dominant perception of disability emerges from a deficit approach, which emphasises "deficiency and intrinsic flaws" in the individual and focuses on what they "cannot do" (D'Amato et al., 2005, 98). The notions of ability and deficiency which underpin the deficit model of disability are formed entirely from an able-bodied perspective – a perspective which cannot imagine or account for the abilities of the disabled body: "the complexity of disabled ability does not fit into able-bodied notions of ability" (Inahara, 2009, 56). This creates a binary in which ability and disability are positioned as opposite and unequal, and thus, to be disabled is to be defined as entirely without ability. For example, speaking with the mouth is considered an ability, but speaking with the hands (Sign Language) is considered a deficit. Consequently, in Donaldson et al.'s (2017) university, American Sign Language was located in the Department of Speech and Language Pathologies (i.e. as a deficit), rather than in the Department of World Languages (an ability). Similarly, in the deficit model, people with a physical disability are construed as entirely physically incapacitated, and physical activity/ability (including cycling) is positioned as the binary opposite of physical disability. This is highlighted by public perceptions of people with physical disabilities as incapable, dependent and unable to participate in physical activities or sports (Brittain, 2004) – beliefs which are often internalised by disabled people when they have no access to alternative information/resources. This approach also underpins social security provision so that disabled people often avoid physical activity (and therefore incur health complications) because they risk losing disability benefits if they are physically active (Brown & Pappous, 2018). The impacts of the deficit model are particularly significant for the disabled cyclists in my research who were constrained by the binary positioning of cycling and physical disability and the lack of alternative information or resources to facilitate cycling for disabled people (see also Andrews et al., 2018; Clayton et al., 2017).
In contrast to the lack of knowledge and awareness about the abilities of disabled people, the deficit model (often also conflated with/referred to as the medical model) produces multitudes of "expert" professionals who measure, classify and define the "deficiencies" of the individual, rather than considering their strengths and abilities or the environmental factors that constrain them (D'Amato et al., 2005). In recent decades the social model of disability has had some traction in terms of challenging the environmental, material and social barriers which curtail the lives of disabled people (e.g. Barnes et al., 2003; Oliver, 2013). But the social model has been less effective in facilitating a strengths-based (or abilities) approach to disability. This is because the social model of disability, despite being positioned as the political and ideological antithesis of the medical model, nonetheless uncritically adheres to the medical concept of impairment. I have argued that the incorporation of "impairment" within the social model of disability is problematic in a number of ways (Inckle, 2015a), not least of which is that it reiterates ableist notions of the disabled body/capacity as lacking and flawed, and it positions impairment as an essential (rather than constructed) characteristic of disabled people. To me, the concept of impairment is not a value-free description of the disabled body/capacity but, rather, it operates in precisely the same ways as "deficit" or "deficient" 2. As such, the "able" body remains the norm against which disabled bodies are measured as impaired, lacking or deficient, and their abilities and capacities remain hidden. This perspective underpins many of the barriers faced by disabled cyclists, whereby it is inconceivable that as someone who has a physical disability and cannot (or struggles to) walk, is physically capable of cycling. However, this conceptualisation is not limited to disabled cyclists, and disabled people attempting to access a range of sport and/or physical activities experience many of the same barriers and prejudices. Thus, these two facets of the deficit model of disability: the binary conceptualisation of disability as an all-encompassing lack of (any) ability, and the dominance of impairment, are integral to disability sport, physical activity and cycling.
The binary positioning between disability and ability is nowhere more apparent than in the Paralympic Games. It may, at first glance, appear paradoxical to suggest that a sports event for (some) people with (specific) disabilities reinforces a binary deficit model of disability. However, the deficit approach is evident in a number of practices. Firstly, only athletes with certain disabilities can participate – those with "severe disabilities" or conditions such as Cerebral Palsy are deemed unable to produce a suitably "aesthetically pleasing" display of athletic prowess and are ineligible to compete (Howe & Jones, 2006; Peers, 2012a; Purdue & Howe, 2012; 2013). Thus a binary is created between the "able" disabled who conform to ableist views of worthy and desirable bodily displays (super-crips), and those who cannot – the deficient. The display of only certain types of disability and physical performance is integral to the commercial interests of the International Paralympic Committee (IPC) who market the Paralympics as an elite sports event rather than a disability event (Howe & Silva, 2018; Jones & Howe, 2005; Purdue & Howe, 2013). Thus, Paralympic athletes are represented in ways which also shore up binary perceptions of disability. Paralympians are depicted as "inspiring", "heroic" individuals who have "overcome" their disability (Howe & Silva, 2012; Purdue & Howe, 2013; Braye et al., 2013a) – stereotypes which do little to reflect the lived reality of the majority of disabled people and, "feed the illusion that human life can be controlled by human agency. … The complexity of disability experiences is ignored when one assumes disabilities can be overcome by individual effort alone" (Silva & Howe, 2012, p. 191). These stereotypes also fail to acknowledge the elite, privileged status of Paralympians in regards to accessing resources, support, equipment and opportunities which are beyond the reach of most disabled people – what Bray et al. (2013a, p. 994) refer to as "a class division in Paralympic sport".
The depiction of the heroic Paralympian/super-crip is particularly concerning in terms of perpetuating neo-liberal individualistic ideology, especially in the context of austerity in Britain. During the last decade, government policy has increasingly targeted the welfare system for sick and disabled people (Ryan, 2019; Stewart, 2016; Thomas & Knight, 2018). This has been shored up by rhetoric which has focused on individuals' responsibility to maintain health, independence and employment; such rhetoric also positions disadvantage as the result of individual moral failings, rather than the social-structural barriers (Thomas & Knight, 2018). This view of individual moral failings has legitimated punitive approaches to disabled (and ill) people who "fail" to "overcome" their disability, including benefit sanctions and benefit withdrawal, which in many cases have resulted in death (Stewart, 2016). The impacts of these "reforms" have, according to the UN Special Rapporteur, created "grave or systematic violations of the rights of persons with disabilities" (UN, 2016, p. 20). As such, rather than the Paralympics providing "a vehicle for a more equitable society" (IPC 2010 in Bray 2103b, p. 1) they reinforce a binary deficit model of disability, whereby worthy disabled people overcome their disabilities in inspiring and heroic ways, and those who do not are deficient and subject to punishment.
Paralympians themselves directly reinforce this binary deficit model: they actively position themselves as distinct from regular "gimpy" disabled people (Peers, 2012a), with many Paralympians not identifying as disabled at all (Purdue & Howe, 2012). Consequently, Paralympians do not regard themselves as disability activists, nor do they view the Paralympics as a vehicle to draw attention to disability issues (Braye, 2016; Purdue & Howe, 2012). Instead, they view themselves as elite sports people (Purdue & Howe, 2012) and, indeed, they are. They have access to resources, facilities and activities which are beyond the reach of the majority of disabled people who increasingly live in impoverished conditions, dependent on foodbanks and facing growing levels of hostility and hate crime (EHRC, 2017; Stewart, 2016; Ryan, 2019)
Nonetheless, despite the Paralympics positioning itself as an elite sports competition rather than a disability event (Purdue & Howe, 2012), impairment remains dominant throughout. Impairment is central to the classification of athletes, the aesthetics of the event (see the discussion above), and media representations of it. Following the medical model of disability, participation in the Paralympics is dependent on having a particular type of disability, which is assessed through a highly medicalised "functional" classification system, which is administered by a panel of experts (Howe & Jones, 2016; Jones & Howe, 2005; Peers, 2012a). This system is based on an essentialist conception of impairment, rather than a social-structural or comparative perspective, and results in athletes with entirely different disabilities competing against each other, rather than, for example, events being organised in relation to shared disability experiences (see Peers, 2012a). The classification system also means that media reporting of Paralympic events focus on the classification and the bodily impairment of each competitor, and produces a "spectacle" that Peers (2012b) views as akin to a "freak show", or, "novel entertainment", or "a sporting circus full of curious bodies" (Purdue & Howe 2012, p. 201).
Notwithstanding the IPC's attempt to position the Paralympics as an elite sports event, much of the rhetoric which surrounds it regards its role in (allegedly) promoting sports participation and improving social perceptions for disabled people more broadly (Braye et al., 2013a; 2013b; Howe & Silva, 2018; Purdue & Howe, 2013). However, there is little evidence of these impacts (Braye et al, 2013a; 2013b), and disabled peoples' sports participation actually decreased in the UK following the 2012 London Paralympic Games (Brown & Pappous, 2018). As such, disabled people continue to face significant barriers to exercise and sports participation, including the costs of specialist equipment (such as basketball, rugby or racing wheelchairs) (Braye et al., 2013a; Sparkes et al., 2018), lack of accessible sports and exercise facilities, and attitudinal barriers from staff and/or customers (DePauw & Gavron, 2005; Richardson et al., 2017; Rolf et al., 2012). There are also gendered dynamics to these barriers, whereby gender and disability intersect to increase barriers for disabled women for whom both their gender and their disability position them as the antithesis of the ideal sporting body (Hardin & Hardin, 2005). However, in this context, women who participated in sports prior to becoming disabled experience less difficulty in overriding these perceptions than men (Rolf et al., 2012). Men with acquired disabilities face increased self-perception barriers to accessing the gym/exercise facilities because of the association of very specific (male) body-types and performances with successful masculinity (Richardson et al., 2017). Finally, in the UK, austerity measures have also led to cuts in funding for bodies and schemes that provide access to sport and physical activity for disabled people (Brown & Pappous, 2018). Overall then, despite (or because of) the spectacle of the Paralympic Games, regular (non-elite) disabled people continue to face significant barriers to sports and physical activity.
In my research, cycling was the primary form of physical activity for most participants, and while some participated in organised cycling events, none of the participants described their cycling as "sport" per se. For my participants, cycling is better positioned as a form of functional exercise participation, such as "active travel" (PHE, 2016), "participatory" or "recreational" sport (Hardin & Hardin, 2005). Nonetheless, the participants faced many of the same barriers to cycling as those outlined above. However, because cycling is essential to the participants' mobility and day-to-day activities, such as getting to work, the barriers they encounter may have significantly higher consequences than for those pursuing elite and/or competitive sport.
Overall then, this paper explores the impacts of the deficit model of disability for people with physical disabilities who cycle, many of whom use their cycle as their main form of transport and mobility. It highlights the barriers that disabled cyclists face in terms of their mobility, accessing cycling and the perceptions and attitudes that underpin exclusionary policy, practice and infrastructure. Rejecting the deficit model of disability and recognising cycling as a key strength/ability for people with physical disabilities – rather than focusing on impairment – will lead to greater equality and improve the lives and experiences of disabled people.
This paper draws from a small-scale, qualitative, interview-based research project, which explores the health, identity and social impacts of cycling for people with physical disabilities. I designed this study in conjunction with a user-led inclusive cycling organisation, Wheels for Wellbeing (WfW). WfW facilitated the recruitment of the research participants through their online newsletter, Twitter feed, and the Inclusive Cycling Forum (of which I am a member). All participants were provided with a detailed information form and a combined consent and commitment form which allowed participants to stipulate any further boundaries or conditions that were specific to them (Inckle, 2007; 2015b). The research proposal underwent ethical review at the London School of Economics where I was working at the time. As a member of the British Sociological Association (BSA), I am also bound by the BSA Statement of Ethical Practice (BSA, 2017). Perhaps more importantly, however, as a disabled researcher, I am also committed to the ethics and politics of disability research. This means that the research aims and outcomes must benefit disabled people; the research itself must be egalitarian and it must not involve any form of exploitation or objectification of people with disabilities; and disabled people must be involved throughout the process (Barnes, 2003; Kitchin, 2000; Payne et al., 2016).
In total, I interviewed seven participants for this paper; two were recruited through the Inclusive Cycling Forum, two through the newsletter, one from a women's cycling event in which WfW participated, and one through Twitter – this participant also recruited one of her work colleagues. I also kept a research journal for the first three months after I obtained my handcycle, which is included in the dataset for this paper. In total, including me, four participants were male and four female; ages ranged from thirty-one to sixty-four years and all except one person had been, or currently were, employed in white collar jobs. This age and gender profile reflects the wider population of disabled cyclists who tend to have higher levels of female participation and to be, on average, older than able bodied cyclists (Aldred et al., 2016; Arnet et al., 2016; WfW, 2017). In order to participate in the project, individuals needed to self-identify as having a physical disability, impairment or mobility impairment, and they had to have the capacity to give consent 3. Beyond this, I did not ask for specific details about each person's disability, as to do so would violate the ethics and politics of disability research and would risk recreating the Paralympic spectacle. Rosemarie Garland Thompson describes the constant demand for disabled people to account for their individual difference/disability as "the stare and tell ritual" (2000, p. 325), by which disabled people are made Other, objectified and diminished. This "ritual" is rehearsed in daily interactions as well as media representations of disability, and is integral to maintaining disability inequality. Reflecting on my own experiences, I know that I become closed, angry and uncomfortable when I am asked to "explain" my body/disability. As such, interrogating disability in this way is not only politically problematic, but it is also antithetical to the conditions for a qualitative interview. Nonetheless, some participants voluntarily disclosed information about their disability during the interview, which I have included where it is relevant to their wider narrative. Overall, five participants had their disability from birth/infancy (four women, one man), and three had acquired disabilities in adulthood (three men). The nature of people's disability had an impact on the kind of cycle that they rode: four participants exclusively rode non-standard cycles (recumbent, trike, handcycle), three rode standard bicycles, and one rode a combination of standard and non-standard cycles (recumbent, family cycle, folding bicycle).
Five of the interviews were conducted face-to-face, three in my university office, one in a quiet hotel lounge chosen by the participant, and one in the participant's workplace (also on their request). Two interviews were conducted using Skype, one without the video according to the preference of the participant. The interviews lasted between thirty-eight and seventy-eight minutes, with the Skype interviews being the shortest (thirty-eight and forty-one minutes). All interviews were digitally recorded and transcribed verbatim with anonymization taking place during the transcription process 4. Participants could choose their pseudonym and also elect to receive copies of the interview transcript as well as outputs from the project – all seven have received a copy of this paper. Where participants did not elect a pseudonym I chose one which I felt was demographically appropriate.
Part way through the interviews, I conducted a trial analysis on the first three transcripts. In doing so, I developed codes from the initial themes of the project which were drawn from policy and literature around disability and cycling. However, this proved very unsatisfactory; the codes were ineffective in capturing key content of the transcripts and produced unwieldy and overlapping themes. On completion of the interviews, I experimented with creative analytic practice, I-Poems, (Inckle, forthcoming) in order to re-engage with the transcripts and then, reinvigorated, developed a new set of purely in-vivo codes. These codes were much more effective in analysing the data and producing a set of codes which could then be grouped and sorted into themes. The themes emerged from the codes as clear patterns of interrelation became apparent in the data (Rubin and Rubin, 2005; Sanders and Wilkins, 2010; Spencer et al., 2014). The themes that are explored in this paper are cycling as mobility, access to cycling, and barriers to cycling and their impacts. Another clear grouping emerged around themes of mental and physical health, autonomy, exercise, and health policy and professionals, which are explored in a separate paper. In all of these themes the voices and experiences of the participants remain the central focus, enabling their experiences to be heard on their own terms and to shape the analysis and recommendations. This focus rooted in "nothing about us without us" is crucial, not only as a political/ethical end in itself, but also in highlighting how listening to the voices and experiences of people with disabilities confounds the limited, simplistic and binary perspectives (e.g. the deficit model) that circumscribe the lives of people with disabilities.
Cycling is commonly depicted as an elite sport or the exclusive preserve of MAMILs (middle aged [white] men in Lycra) (Andrews et al. 2018; Aldred et al. 2016). This gives the impression that cycling is a specialist activity that requires specific bodily forms and prowess, rather than something that is possible for the majority of people. Cycling is easier than walking or wheelchair propulsion for people with physical disabilities (Andrews et al., 2018; Arnet et al., 2016; van Drongelen et al., 2009; WfW, 2016) and a recent Transport for London (TFL) survey found that 70% of disabled people living in London said that they were able to cycle (although only 6% actually did so on a regular basis (TFL, 2012) – see barriers, below). Cycling has a significant impact on mobility and, therefore, independence and autonomy. For example, Paul and Rob described how, despite being limited in terms of the distance they could walk, which for Rob also caused significant pain, they were both able to cycle almost unlimited distances. Just days prior to the interview Rob had completed a one hundred and eleven kilometre bike ride, and Paul regularly cycled to and from his workplace which was ten miles away.
I just find it easier to get around because I am limited in the distance that I can walk, but I don't really think I am limited in the distance I can cycle: I've never found my legs getting tired it's more my bum getting sore! [both laugh] (Paul).
I do a lot of cycling, actually, despite the fact that I have real problems walking any distance. I do cycle a lot and I cycle quite long distances … So I have no problems with cycling as such, so I just love cycling, it's a fantastic way for me to get around; otherwise, I wouldn't be able to (Rob).
Nasia, Eric and Michael all highlighted that cycling is easier than walking and that it is their main form of mobility and exercise.
The other thing, with this stroke I'm not able to walk far at all, and I'm very slow walking, so there is no exercise there, and the thing is, they say to people if you are not getting enough exercise it makes you worse and worse and worse. What the trike has done is it as actually given me freedom. I remember I had to re-learn to walk, I couldn't get across my kitchen, and you forget that – it's three years now – you put a lot of work into things. And a cargo trike is, I don't think I would, I live about half or three quarters of a mile from the shops, that's too far to walk, and I probably wouldn't go out that much without the cargo trike (Eric).
Cycling is also easier than wheelchair propulsion. This was particularly significant for Hélen, who found wheelchair propulsion "laborious" and so, prior to discovering cycling, simply drove herself everywhere.
I would never by choice wheel somewhere unless it's literally round the corner because that is not a pleasant situation to be in, because pavements are so rubbish, lack of cut kerbs, all of that rubbish and because I have got the car I am not going to even think about pushing (Hélen).
She described cycling as akin to "growing a pair of wings", which was not only important in terms of her mobility, but also for her health and the wider impact on the environment.
In theory I'm pretty green, but I actually never really cared about how much driving I did because it was the only way of getting about. Whereas now I am much more aware of the negative impacts of driving, not only on me because I am just sitting there again doing no exercise, but also on the environment, on other people around me, it's completely sort of, I'm realising how isolating driving is, which I had never even realised only because cycling is so open to other people (Hélen).
Cycling has always been easier than walking for me, and it was only a short time (two weeks) into my life with a handcycle that I discovered that cycling was infinitely preferable to wheelchair propulsion and much less taxing to tired arms.
Really experienced that cycling is easier than pushing: I had a core class after work, but I got back to Stratford in time to call home before class. A very windy day and achy arms, and the thought of pushing [to class] very unattractive, but cycling very easy now and positive (Kay).
Not only is cycling easier to do, it is also much less detrimental to the body than wheelchair propulsion which, in the long term, can have negative impacts on shoulder joints and mobility (Arnet et al., 2016; van Drongelen et al., 2009). Cycling was also a safer option for participants who had some capacity to walk, but nonetheless, experienced significant risks when doing so. Rosie, who having previously fallen and broken her leg when walking (for which she uses crutches), described cycling a trike/recumbent as a much less risky activity.
Crutches I would be more anxious about moving around, I'm worried I'll fall or something and then on the bike you don't really [worry] because you know you are not going to fall – unless you do something really silly – yeah, I dunno [thinks] and obviously you go much faster so that feels good (Rosie).
Rosie also described having shoulder problems as a result of relying on crutches – for which she had received medical treatment the day of our interview. Nasia also described cycling as safer than walking, especially in winter weather.
I cycle in the snow and people think I'm completely mad [smiling]. Erm, but actually, I can't walk on ice and I actually find it easier to cycle on the road where they have cleared the road; they don't necessarily ever clear the pavement. So the roads are clear and I can cycle, so I find it easier to cycle because the roads have been cleared, but the pavements they just let them ice and I can't walk on it, and I'd rather not. Knowing me, knowing my luck I'd fall over on the pavement before I would on the road. So I cycle all weathers (Nasia).
Overall then, cycling is a key element of mobility for people with disabilities and it is much easier – and safer – than walking and wheelchair propulsion. However, because the deficit model of disability creates a dualism between physical activity (e.g. cycling) and physical disability, few people with disabilities can access knowledge or experiences of cycling. The primary means to access cycling for disabled people is via specialist rehabilitation programmes, which are primarily available to ex-military personnel or those with spinal cord injury (see Block et al., 2005; 2010; Springer, 2013). And, while being of individual benefit for those involved, such programmes – much like the Paralympics – often do little more than reinforce ableist notions of the "non-impaired, impaired" supercrips who have "overcome" their disability (Snyder & Mitchell, 2010, p. 117). For people with congenital disabilities or disabilities acquired in alternative contexts, there are rarely opportunities to discover cycling. Indeed, for my research participants it was experiences of cycling as children and/or chance encounters (with people or information) which led them to (re)discover cycling as disabled adults. This is despite the fact the Public Health England (PHE) has a policy to promote and facilitate cycling (and walking) throughout the population (PHE, 2016).
Despite how important cycling is for the mobility of people with physical disabilities, very little information or opportunities exist for disabled people to experience cycling. At the same time, cycling is widely promoted and made accessible to able bodied people in the UK through government policy and schemes, such as the Cycle to Work Scheme (Department for Transport (DfT), 2011) and the Active Travel scheme (PHE, 2016). None of my research participants had any formal support to access cycling, despite many of them having been in hospital-based rehabilitation or physiotherapy programmes. All but one of them, however, had cycled as children, and this was significant in their continuing to cycle either after becoming disabled as adults or in maintaining it in their adult life. The only participant who didn't cycle as a child was Hélen, and this was because her family were not aware of cycling possibilities beyond the standard bike, which she was unable to ride.
Cycling a bicycle: what my parents and me then thought of as, you know, cycling. Which was, I can still visualise it, a lovely shiny white bike, bicycle, which they got me when I was, I think, ten or something and I tried it for, not that long, and it didn't take long before we realised I wasn't going to be able to balance and my feet weren't even going to be able to stay on the pedals, so I gave it up as a bad job. So I wasn't at all imagining I would cycle because I was left with still that thought that cycling was to do with a bicycle and that wasn't something I could do (Hélen).
Rosie had cycled a bike as a young child, but a series of operations meant that this became impossible, leaving her, similar to Hélen, with the impression that cycling was no longer a possibility.
I just thought I would never be able to get on a bike again. So when I found out about it [i.e. inclusive cycling], I actually had a broken leg at the time, and then I had to have surgery on it, so it still took a long while until I could do it, and I couldn't wait to go and do it. It was like one of my end goals after having that the surgery, to go and do that. Cos I thought I would never be able to get on a bike, cos obviously I can't get on a normal bike cos I would just fall off [laughs], dompf [mimes tipping over], obviously, and I couldn't take any more brakes (Rosie).
Hélen and Rosie both discovered cycling – for Hélen a handcycle and Rosie a three wheeled recumbent and a trike – by chance, despite both of them having attended physiotherapy where their exercises included using static cycle machines. Michael and Eric also turned to three wheel cycles – a recumbent (Michael) and a cargo trike (Eric) – after becoming disabled in adult life. Again, for both of these participants it was a process of self-discovery. Michael, who had been a life-long cycling enthusiast with an interest in cycle engineering, figured out for himself that a recumbent might be an option for him – and was lucky enough to find one for sale at low-cost on Ebay: "I just love stuff. So the mechanics of it, the engineering of it, the style of it, the story of it as well, so I have a huge collection of bikes as well". His physiotherapist – who was also a keen cyclist – never suggested cycling as part of his rehabilitation, even though using the recumbent improved his overall mobility and eventually enabled him to return to riding a family cycle and a folding bike: "I find it gives me the independence but it also gives me the opportunity to work it [cycling] into every day as well, because if I don't keep things moving I am going to struggle very quickly".
Eric attempted to ride a standard two wheel bicycle after his stroke but, like Rosie and Hélen, soon realised that this was not viable for him.
Just after I had had my stroke I had actually tried cycling an ordinary bicycle and I managed it – I made myself – because it's not difficult to cycle in a straight line cos they balance themselves. Major issues occur as soon as I stop, [smiling] try and turn a corner, or do something else apart from going in a straight line: I fall over! So bicycles quite obviously don't work for me although I would have liked it to … I could see this isn't going to work if I need to turn a corner or something or stop. Cos you have got to put your feet down when you are stopping and my feet don't move as rapidly as you'd want them to (Eric).
On his own initiative Eric experimented with other forms of cycle and found that a cargo trike was ideal for him; nonetheless, the transition to a non-standard cycle wasn't immediate: "it took some learning how to do it". Learning how to cycle a non-standard cycle was also something that I noted in my journal in the first few days of trying out my new handcycle in the Olympic Park: "Felt quite heavy and [the] handling takes some getting used to. Did a circuit of the Velodrome!" This highlights one of the advantages of cycling schemes for people with disabilities, which provide a safe, off-road environment to experiment with different forms of cycle and to find which best suits the individual. Rosie and I were the only participants who discovered non-standard cycling at such schemes via chance encounters. Previously, we had both only ridden and known about standard bicycles.
Nasia, Rob and Paul all cycled standard bicycles as children and adults, and their childhood/youth experiences provided them with the knowledge and confidence to cycle even when walking is particularly difficult. Nasia continued to cycle following operations and despite having one leg in a plaster cast or medical boot:
I had training wheels on my bike until I was about six, I suppose, six or seven, and then I could go onto two [wheels]. And I cycled with a plaster on [chuckles], I've cycled with a boot [cuckles] and I have cycled with – I have got a lift in my shoe – and I've cycled with the lift, so I managed to do it so, yeah, I have cycled since then.
Cycling in adulthood has become increasingly important for both Nasia and Rob.
The last operation has just been a bit [pause] I've had to learn to walk again. So I think that is the big issue, so after thirty years I had to learn to walk again, erm, differently, so I'm much slower than I was and my gait is much shorter as well… Since I've had this op I can't walk as far as I used to, I'm much slower so I thought, "Well I'll just use the bike now" (Nasia).
Rob also relies on his bike as his main form of transport and mobility:
I've always had a bike I think, and in terms of being necessary, I think that started, possibly, after, it was a few years after I was a graduate. When I was a student I had a bike but I didn't use it every day, I didn't need it in the same way, I could walk longer distances then…I think over the last maybe ten years I've been using bicycles as my main form of transport, really. So it's almost necessary, really. I can't walk more than fifty meters, basically, it's so painful (Rob).
Early knowledge of cycling was important for Paul in terms of regaining both his mobility and his sense of well-being after becoming an amputee.
What I found the most liberating thing after having the accident, obviously, I was very apprehensive after I lost my leg that I wouldn't be able to do what I could do before, like going for long walks and cycling, and I found that I was able to get back on my bike and actually – well [laughs] it was just like riding a bike! [both laugh] … And what I found was that cycling was better for getting around for me than walking, because obviously when you are walking your weight is on your artificial leg and the stump and everything, whereas on a bike part of it is through the bike so I found it easier to cycle than I did to walk and that's still the case.
All of the participants discovered cycling only because of previous experiences and/or, in the case of Rosie and myself, chance meetings with people connected an inclusive cycling organisation 5. Disability and cycling do not go together in the public imagination – or, therefore, in policy and practice – largely because of the deficit model of disability. As such, there is a need for improved information and access to cycling for people with disabilities, as well as greater awareness among the wider public and policy makers. This should include increased facilities for disabled people to experiment with cycling options and types of cycle. Otherwise, disabled people will continue to be excluded from a key element of mobility and independence, and will continue to face discrimination in public policy, infrastructure and attitudes.
All of the participants encountered barriers to cycling (see also: Andrews et al., 2018; Block et al., 2010; Clayton et al., 2017), some of which are common to sports participation more broadly, and others which are specific to cycling. These include infrastructure, such as cycle paths and facilities not being accessible to non-standard cycles, as well as problems with general roadways, such as potholes, camber and cycle parking facilities which posed specific problems for disabled cyclists who used non-standard cycles. Participants also highlighted the cost of cycles, especially non-standard cycles, and even those who were easily able to afford a good quality bicycle noted that they were fortunate in this regard. Storage and access to public transport were also highlighted as issues, alongside the increasing pedestrianisation and banning of cycles from town centres. However, here I will focus on the attitudinal and perceptual barriers, as these have roots in the deficit model of disability and underpin the wider barriers that disabled cyclists encounter.
The attitudinal barriers faced by disabled cyclists varied depending on the visibility of their disability and the kind of cycle that they used, but in all cases the barriers emerged from the deficit model of disability and the binary positioning of disability and cycling. Participants who rode standard bicycles were mostly invisible as disabled people and were, therefore, often confronted with refusals to accept that a person could have a disability which prevented them from walking and yet use a bicycle as a mobility aid. In simple terms, if someone is "really" disabled and not able to walk, then they would not be able to ride a bike. In day-to-day encounters, this attitude was conveyed in quite hostile ways and participants often experienced direct confrontation and/or exclusion when trying to access a range of public places and activities. Rob was not only prohibited from riding his bike in a number of parks and public spaces, he was also prevented from wheeling it alongside himself to aid his walking.
People just see a bicycle, and that's all that they see, despite the fact that they can obviously see that I have problems walking, they will still ask me to get off and walk with it in various places, or they won't allow me into, for example, parks. There are a couple of parks here in [name] where you're not allowed in with bikes, and I just want to go in and enjoy the park, and I can't. I can't walk in without the bike, I find it very difficult, so I want to use it, I actually use it like a bit of a rolling walking stick you just roll along with it, and that would be great if I could take it in, but they just say, "No, no, it's a bicycle you're not allowed in, that's what it says, 'No bikes', that's the sign" (Rob).
This refusal was commonplace, despite Rob possessing an official government-issued card 6 which confirms that he has a disability and requires mobility aids.
One of the good things now I've got a little card here in Spain, which says that I've got a disability, so it has the rate of disability on it, 36%, and that I pass what they call the baremo de movilidad [mobility scale], which means that I need mobility aids, so it says that on the card. So I can actually show that to people and say, "Look, I am disabled and I do need this [bike]". And sometimes, well I've not really done that very much, I must admit, so, I have shown it to people and they have still said, "Well no, sorry, the rule is that you have got to walk in here, you can't cycle" or, "You can't bring your bike in". So it doesn't seem to make that much difference, but at least I have got something to show (Rob).
Nasia encountered similar difficulties both when she was riding her bike and when she was scooting along with it as, unlike Rob, she found walking with her bicycle quite difficult.
I don't get off the bike, I just scoot, I just use one leg and I'm on a pedestrian area and everyone just looks at you like, "Get off your bike" and I'm [thinking] like, "Well it's actually easier for me to just do that rather than to get off the bike and push it". You do get people looking at you going, "Why are you doing that?", you know, you just take it, if people say something I just say "I can't walk" or "I find it difficult to walk", and just carry on (Nasia).
Nasia, like Rob, also had experiences of security guards insisting that she dismount from her bicycle in public places.
I've had that where they have said, "No, no, no, you can't do that" and I've had to say, "Look, I can't walk through there". I can't remember what it was, but it wasn't majorly [difficult], but you just get security or security people saying you can't cycle (Nasia).
Rob also encountered barriers from the wider public and the police when using his bicycle as a mobility aid.
I'm often being asked to dismount and walk. I get a similar issue here on the pavements, cos when I'm with [name], my partner, and she's walking and I'm cycling alongside her, even though the pavements are quite wide, I do get quite a few negative comments from people, but also I have been asked to not cycle on the pavement as well by the police when they have seen it. You know, even though I am cycling at walking pace next to my partner still some people don't like it (Rob).
A similar attitude is also expressed in encounters which, like the depictions of the Paralympian or super-crip, may, in the first instance, appear more positive and less discriminatory, but which nonetheless reinforce the deficit model of disability. For example, Nasia and Paul both described the surprise they encountered at different points in their life when their peers saw that even though they had a disability they were cycling a bicycle. "When I cycled when I was younger they were surprised that I could cycle" (Nasia);
I remember when I first got on my bike and my children were small and I cycled round to collect them soon after the accident, as soon as I was able to cycle, and some of the other people who were there said, "Oh my goodness you are cycling!" As if they couldn't believe it: because I'd had this accident I wouldn't be able to do it, and they were really surprised by that (Paul).
In this context, disability and cycling are still positioned as opposites, but cycling is positioned as a credit to the disabled person. Therefore, despite these interactions reflecting "positively" (from an ableist perspective) on the disabled person who has managed to "overcome" their disability and cycle, they still originate in and reinforce the deficit model of disability. Nasia and Paul described further experiences where this attitude is distilled to the point that, similar to Paralympians, they are no longer recognised as disabled because they can cycle.
I actually said to my friend the other day that I was coming here [e.g. to do the interview about disabled people's experiences of cycling] and she said, "I've never actually seen you as [disabled], I don't regard you as having a disability." So I suppose because I am doing an everyday thing that everybody does, I think that is part of that I suppose (Nasia).
I think that people that I interact with at work and socially don't really think of me as being disabled unless something causes me a problem and then I might have to sit down or something…And I think that's the perception, as you say, about disability, that they think that a person has a disability so therefore they can't do X and I think that in my case, because I just get on with it, then it's not a problem for me, but I think there is that there…I do so well that I think that most people are surprised when they find out that I have got a part of my limb missing (Paul).
This binary positioning of cycling and disability has a number of significant impacts for people with disabilities. In some contexts it can deflect some of the association with disability in ways which may initially appear more positive and less stigmatising to those individuals – albeit, while reinforcing a deficit approach towards other disabled people. More significantly, however, the binary positioning of disability and cycling results in attitudes, policy, practice and infrastructure which prevent disabled people from using their primary means of mobility and from accessing a range of public spaces and facilities. Recognising that disabled people can cycle and that they often use bicycles as mobility aids is essential to ensuring that public spaces including shopping precincts, parks and nature reserves are accessible to people with disabilities. Otherwise, disabled people are excluded from participating in social life and public spaces.
Disabled people who use non-standard cycles face a different set of perceptual issues and attitudinal barriers which arise from being visibly "different", even if this "difference" is not always immediately associated with disability. Nonetheless, this difference elicits attention and interactions which can be both positive and negative. The most extreme form of negative behaviour was experienced by Michael whilst riding his recumbent:
I have had cause to speak to the police just once about getting shouted at by some builders. And the reason I went and spoke to the police is I don't want my kids to have to put up with this or see this kind of behaviour, because obviously it is a very different looking thing.
I asked Michael what the builders were shouting at him, trying to ascertain if it was just the "difference" of the recumbent cycle that was their target, or if it was him as a disabled person. He confirmed that it was specifically disablist "abuse", which he found "astonishing in this day and age", and it was "the first time I have encountered that, I guess because I don't necessarily look disabled".
I [sigh] so I rode past, I was, I was just incredulous, and there is a police station on, near, my route so I went and called in and I just said, "Look I'm not sure what to do about this, but this has just happened and is there any way of just having a chat with them and just saying 'Look, you know, keep your opinions to yourself', sort of thing?" And it was really awkward because the guy I spoke to on the desk, he was incandescent with rage [K: Really?] and he wanted to go round and arrest them all, and I was like, [worried], "Oh jeez", cos I'm going to ride past this building site again [both chuckle] … So, to be honest, it was kind of his, what I might call, over-reaction that made me say actually, "No, it's all right, don't bother, don't worry about it". But I did ring the building company and say, "Look, you know, I appreciate you've got lads working there, but just tell them to keep their opinions to themselves and I don't really care". And then my window got put through (Michael).
Most participants did not report anything like this level of problem as a result of their visibility as "different" or disabled cyclists. However, they still often experienced uncertainty about the kind of attention that such visibility brings. Rosie described her experiences during an inclusive cycling session in a local park:
There was a guy actually in the park, in the park where we did it the other day, who was just like shouting over at me and I was like [concerned], "Oh what does he want?" And he was like, "Is that from WfW, that bike?" and I was like, "Yes" and he was like [excited], "They're brilliant!" And he was just there walking his dog so [laughs] that was good. And then another guy, this Monday just gone, who was just like [mimes a long slow stare following a wide arc] in the park and he was just really confused cos obviously someone was on a handbike and I was on a trike and he was just like, "What?!"
In my first days with my handcycle I was also quite wary of the kind of attention I would attract and nervous about encountering hostility. Here, my journal recounts one of the first mornings that I took my handcycle to work on the tube (not in rush-hour) and then cycled the eight-mile journey home that evening.
I was quite nervous on the tube on the way in to work, I keep expecting hostility, challenges and/or aggression from people – I guess that is what I was used to when I was using a bike as a mobility aid, and because this [handcycle] is so much bigger I expect it to attract more negativity. But there is none. And on the road people are very courteous, cars let me pull out, they pass with loads of room around me, buses hang back rather than squeezing me into the gutter and other cyclists say "Thank you" if I make sure they can still pass inside a vehicle that I cannot. Also people seem more courteous on public transport when I am on the cycle than when I am in the [wheel]chair or scooter (Kay) 7
However, even positive attention can become intrusive, and for those of us who use non-standard cycles it is never an anonymous experience as I noted later in my journal: "Have quite a few comments and looks – there's not really any privacy/anonymity going out on a handcycle". In the context of this kind of attention Eric specifically chose his model of cargo trike so that, although it is unusual as a type of cycle, it didn't, in his words, appear "disably". As such, he was more likely to be interpreted as a "a workman/person" and attract a curious rather an ableist, gaze.
I'm not being labelled, I'm not being categorised, erm, it's amazing actually when you look at it the amount of people who smile when they see you, so yeah, it's quite interesting, what happens is you smile back at them and people can be quite nice, or whatever, when you watch out for it, it's good (Eric).
Eric's ambivalence about being identified as a disabled person was connected to his desire to avoid being labelled in the simplistic binary terms of the deficit model of disability.
There is continually a message "disabled people don't cycle". Erm, I am the duckbill-platypus here: what am I? Am I mammal or a reptile; am I disabled person or a cyclist? It's both. And it's getting used to that, and getting to accept that people don't fit into those categories, and it's good not to fit into a box (Eric).
As a wheelchair-user Hélen is always visible as a disabled person: "I don't have the option of people not knowing I am disabled", but when she uses her handcycle this visibility is a positive experience.
People's reactions are just so different when I am cycling to when I am doing anything else really. So, yeah, it transforms the look in people's eyes, [it] is a completely different one when they look at me cycling by to how they look at me wheeling by on the wheelchair … The best things is the kids who say, "Oh mum can I have one of those?" Which nobody has ever said when I have wheeled along on my wheelchair, "Oh that's cool!", "Look", but in a positive way…I didn't know until I was cycling that teenagers use the word sick in a positive way, and it just cracks me up every time I hear it because of course disabled people are often considered as sick and poorly and unwell and all that. And then I am suddenly being called sick i.e. it's really positive. It's fab you know, it's just brilliant, so all of that is completely radically different (Hélen).
Disabled cyclists who are made visible by the type of cycle they use face a different set of barriers compared to disabled people who ride standard bicycles and who are, while doing so, less visibly "different" or disabled. However, for all participants these attitudinal and perceptual barriers added a number of personal burdens to the infrastructural, policy and practical barriers that they already endured. Rob described the impact of being constantly prevented from accessing public spaces because of attitudes towards disability and cycling: "I just get frustrated and angry and I just wish that people could understand a little bit more and be a little bit more aware". He described how the constant interpersonal challenges he encountered impacted his sense of himself and his experiences of public spaces.
There is that sense all the time that you're thinking, "How are people looking at me here?" Cos I'm quite sensitive, I like to think that I'm not irritating people, but I think I find that quite often I am when I'm on my bike because of their expectations and their preconceptions of what I should be doing. Yeah it is, it's waring, it is quite waring to have to think about this every time I go out (Rob).
Michael also had additional burdens to consider every time he went out with his recumbent cycle. These resulted from his double vulnerability in terms of his physical invisibility as a road-user and his heightened visibility as a disabled cyclist. Recumbent cycles are usually long, low machines, making them less visible to drivers than bicycles.
There aren't many segregated places I can ride on the recumbent…any paths that I would have ridden on my mountain bike are pretty much inaccessible to the width of the recumbent: sort of things like gates, which I understand that people put up to stop like motor crosses and things like that, but it means that I can't actually get the recumbent to those closed paths, so all of my recumbent cycling is exclusively on the road, which is very, very scary.
Hyper-aware of his visual vulnerability Michael made a number of adaptions to his cycle to increase his visibility to other road-users.
I'm super low, so what I have done is, erm, I actually ride with a trailer, it's an empty trailer, but it's a bright yellow trailer and both the recumbent and the trailer have the flags and I've also got some of these superbike flashing lights and I've also wrapped some of the recumbent in high-vis, erm, it's as much as I can do, I'm painfully aware of getting squashed.
However, while increasing his safety in terms of road traffic, his heightened visibility also increases his vulnerability to negative attention such as the incident he described above. Michael described how he attempted to circumvent this attention by adding Union Jack and English flags (St. George's cross) to his cycle when he found them on the road. He described this aesthetic as fundamentally "not me", but a means to divert the type of attention that he received from "white van man" from something that was potentially negative/threatening, to something more jovial/comradery, even though he did not identify with it.
Eric's invisibility as a disabled person when using his cargo trike spared him from the ableist gaze, but also meant that he had to engage in lengthy negotiations in order to access public spaces using his trike. Despite describing himself as fairly confident in such contexts and being able to draw on knowledge and experience from his former employment, he still experienced these interactions as a burden and something that he would prefer not to have to engage in: "I don't want to, I do it reluctantly because it has to be done, you know?"
You don't want to have them, I don't want to have to go round being a preacher or trying to convert people, you don't want it, you are hoping for some kind of basic standard there of civilisation that that's how you do things, but that's right, it isn't there (Eric).
Nasia also described the interactions and confrontations that her cycling provoked as an additional burden which she coped with because of her character and life experiences: "I'm pig-headed, yeah [both laugh]. I think you have to be! And, you know, I'm in my mid-forties now so you just carry on". Nonetheless, it still had an emotional impact on her.
I sort of get annoyed and sort of think about it for a while, and I think, "Well, actually, no I can, I will just carry on". You get angry, you know, when anyone says it that you can't do something, you explain it to them that this what I'm going to do, but I just carry on. I do carry on, but you think about it, that's what I do, I think about it more than I should (Nasia).
Of all the participants Paul reported being the least affected by barriers which he felt resulted from the high quality cycling facilities in his locale along with him being able to ride a standard bicycle and also to walk if necessary. Nonetheless, the fact that cycles are not recognised as mobility aids still impacted him, as he prioritised the needs/rights of pedestrians over his own mobility.
Well, I do feel that pedestrians should have their space and cyclists should have their space and I don't think it's a good thing to do that [e.g. cycle in pedestrian areas] I feel a bit bad about doing it, so I feel that they are entitled to be put out that I am cycling through a pedestrian area. So, as I say, I try and avoid it (Paul).
Paul's focus on the rights of pedestrians meant that when he did need to cycle through pedestrianised areas, he did so with a sense of discomfort.
Very occasionally I do cycle do down the main street which is pedestrianised, you're not supposed to, otherwise I would have to walk all that way. So, I do, but I take it very carefully and I try not to do it when it's crowded and stuff like that…sometimes people look at me a bit funny or say, "You shouldn't be cycling in here", that's about it really. But obviously, they can't see that I have only got one leg so—but not really, no, cos I don't do it very often, I try and avoid doing that it's only very occasionally that I have to (Paul).
People with disabilities should be able to access and move through public spaces without being prevented, challenged or emotionally burdened because of attitudes, policy and practice which emerge from the deficit model of disability. Yet this model dominates the experiences of disabled cyclists in terms of material, social, attitudinal and policy barriers to mobility.
Overall then, the deficit model of disability, which locates physical activity (cycling) and physical disability as binary opposites has a number of negative implications for disabled cyclists. These include the failure to recognise cycles as mobility aids, resulting in policy, practice, infrastructure and attitudes which prevent people with disabilities from accessing public spaces and facilities. The constant challenge to disabled people as they try to go about their daily life with their cycles produces an emotional/psychological burden and adds to the inequalities that people with disabilities experience.
This paper has demonstrated that cycling is a key form of mobility for people with physical disabilities, and yet, there is little public or policy recognition that disabled people can cycle. This lack of knowledge and awareness impedes people with disabilities from discovering and utilising cycling, creating a barrier to mobility (and health) – especially for those using non-standard cycles. It also creates significant barriers for disabled people who use their bicycle as a mobility aid from accessing public spaces and facilities. All of these barriers produce significant emotional and interpersonal burdens for disabled people when they attempt to use their cycle. I have argued that one of the key causes of these burdens and barriers is the deficit model of disability, which positions physical disability and cycling as incompatible binary opposites. This model continues to shape public policy and practice; even when cycling is being encouraged as a means to health promotion for the overall population, further entrenching barriers and inequalities. These barriers are also reinforced in disability sport and exercise more broadly, both in terms of access to exercise participation and in the elite positioning of the Paralympic Games. Nonetheless, very recently, and in response to the campaign work of organisations such as Wheels for Wellbeing, there have been some significant local policy developments. These include the development of The London Cycling Design Standards, which uses the dimensions and capacities of a non-standard, three-wheeled cycle as the basis around which to develop cycle infrastructure and policy (see Andrews et al., 2018). However, this approach remains a minority rather than the norm, and there is much work to be done and much change needed before disabled people achieve equal rights to mobility, physical activity and access public spaces and facilities. The following recommendations will facilitate greater inclusion, equality and access for disabled cyclists.