Ableism technology and (de)construction of stigma

by Rebecca Maskos, University of Applied Sciences, Bremen, Germany

Abstract

The wheelchair is a classic stigma-symbol. My contribution tries to extend an individualised, psychological perspective of wheelchair acceptance to a perspective of societal critique, by drawing upon Critical Dis/Ability Studies. I look at the paradox arena in which subjects adopt technology and model their (re)constructions of dis/ability. As an enabling and yet stigmatising tool, the wheelchair has an empowering and devaluating effect at the same time. I draw on preliminary results of my qualitative Ph.D. study and identify five potentials of wheelchair use.

Unlike many full-time wheelchair users like myself,  people who come to use a wheelchair throughout the course of their life can be resistant. Sometimes it is adopted only after years of social isolation and cumbersome mobility – turning ambivalence into enthusiasm about the flexibility and liberation. I would argue that unlike the concept of ‘wheelchair acceptance’ (Barker et.al., 2004) pushed by Rehabilitation Sciences, there are additional societal elements of ableism and stigmatisation that should be considered. 

My PhD project therefore looks at the wheelchair as a ‘stigma symbol.’ Drawing upon the work of Goffman (1967) alongside the concepts of ableism (Campbell, 2009; Goodley, 2014) and ‘psycho-emotional ableism’ (Reeve, 2012), I consider the wheelchair as an object that is able to control and disclose information about disabled people (Goffman, 1967). Throughout the project, I have engaged with the  social meanings and lived experiences of part-time wheelchair users and sought their reflections upon the relationship between their own journey of wheelchair adoption with stigma and an ableist society (Maskos, 2018). I conducted eight semi-structured narrative ‘Problem Centered’ interviews (Witzel, 2000) using Cathy Charmaz‘ (2014) ‘Constructive’ Grounded Theory for my analysis. The sample has a variety of physical disabilities and half of the group identifies as female, the other half as male. The personal information and the interviewees’ names are anonymised. 

Among the many different structures and categories I found I was able to identify five potentials of wheelchair use: stigmatising, identifying, disciplining, empowering and normalising.

Stigmatising potential

‘It gets really bad when I put a warm blanket over in winter, to cover my legs. I hate to do that, because it’s a sign for me of (…) old man.  Grandpa. With a blanket over my knees, uh, finally arriving at the end of life. To be totally helpless little man.’ (Martin)

Presented in the extract above, the strong symbolic nature of the wheelchair at times seems to completely overshadow any personal features of the wheelchair user. In my interviews I found frequent stories of objectification, unwanted help, and exclusion that seemed to limit social and adult status as well as gender roles. The wheelchair is perceived to signal helplessness and incompetence which forms part of a wider narrative of passivity, immobility and social death.

Identifying potential

‘At first, people look like: Oh God, did something happen to you? (… ) There is complete irritation. (…) Is she still the same? So, can we talk to her as we usually do? (Gabriele)

Many participants reflected upon the confusion that arises when meeting people that they would usually encounter whilst not using their wheelchair. Participants described feeling like a ‘new person’ as they are no longer recognisable when using their wheelchair. In this way, the wheelchair seems to be an all-encompassing feature of social identity. 

Disciplining potential

“This wheelchair –  I was ashamed for a long time. I thought about what the neighbours would think and that they think I just fake it. I‘d say when I would now be out of the house and I had a huge hole in my body, and there would be blood all over, then they would be worried and say, Margarete, what‘s wrong with you. But now, when I really try hard to be mobile, nobody sees how exhausting this is. They just say‚ well, she could lose some weight.” (Margarete)

Some participants used the wheelchair as a flexible mobility tool. For example, the wheelchair might be used for alternately sitting down and walking, pushing the wheelchair themselves. Yet, many shared stories of having this practice policed and sanctioned by others, with some also being accused of being ‘fakers.’ Part-time wheelchair use is therefore suggested to violate the social imperative of being either disabled or a non-disabled person. A flexible use of the wheelchair breaches the alleged unambiguous social order around wheelchair use. 

The wheelchair also showed another disciplining moment, especially when my participants talked about why they avoided or delayed using it.  So it seems that you have to have a legitimate reason for being in a wheelchair that is accepted by other members of society. If not, assumptions of being lazy or a burden on others can emerge.  

Empowering potential

“When I first tried it out on the street, I had a totally queasy feeling like this: Oah, now everyone is watching. But somehow also …  such a pride, such as: So, now I‘m coming out. Um, it was like this, I finally put on a sign, saying I‘m disabled by the way” (Pete)

The empowering potential is based to some extent upon the value of identification that can occur.  As described above, the wheelchair creates unambiguity, which can be a problem if you want to use it in an ambiguous or flexible way. But the unambiguity can also be a relief – the start of wheelchair use seems to be a threshold that promotes clarity about social and ego identity. The use of a wheelchair turns an, at times, private impairment into a public disability – with an empowering momentum of ‘coming out.’ 

Normalizing potential

“And then I quickly realized that I had both hands free and that I was doing my housekeeping a lot faster than before. And, uh, that I can travel a lot further. And then I really appreciate the independence” (Andrea)

Another rather emancipatory aspect of wheelchair use is its enabling potential, as a flexible and liberating ‘tool.’ My participants told me about the freedom of movement they had gained from wheelchair use, compared to their limited walking distances without the wheelchair and many other new ways of bodily function. Use of the wheelchair is adaptive to the user, and therefore promotes ‘normal’ functioning. 

Conclusion

Technology, whether it is an assistive device or any other form of technology, is always ambivalent. It is ambivalent as it can offer, as well as withdraw, one’s sense of agency. It gives agency in the sense that it enhances an individual‘s performance and adaptation to society, but it can also withdraw agency through the  stigmatizing effects that create new forms of difference (Moser, 2006, p.383). 

Wheelchairs are especially precarious stigma symbols, as they become  a focal point in an arena of ‘ability trouble,’ in a society guided by ‘compulsory ablebodiedness’ (McRuer, 2006). The notion of compulsory ablebodiedness details our continuing, strenuous struggle with normative ideals of performance, beauty and gender standards. Ideals that, whilst nobody can fulfil, everybody aspires to. In an ableist, capitalist and heteronormative society, those ideals are imperatives for every individual (Goodley, 2014). If subjects refuse to conform with those ideals, they risk losing their status of an autonomous subject (Meißner, 2015) and instead are positioned as ‘other,’ a subject position that upholds constructions of abledness (Campbell, 2009). 

I would claim that this can make the adoption of wheelchairs in our society a problematic and risky endeavor. To assume being the antagonist part of the normative subject can feel like a rebellious battle of resistance against norms. I think this is why, for many wheelchair users, it can take a long time until they opt for wheelchair use. Being ‘the other’ is a position that is not easy to embrace, but one that also holds a lot of emancipatory and liberating potential.

Reference List

Barker, D., Reid, D. & Cott, C. (2004) Acceptance and Meanings of Wheelchair Use in Senior Stroke Survivors. American Journal of Occupational Therapy. 58(2), 221-230.

Campbell, F.K. (2009) Contours of Ableism. The Production of Disability and Abledness. New York/London: Palgrave.

Charmaz, K. (2014) Constructing Grounded Theory. London: Sage.

Goffman, E. (1967) Stigma. Über Techniken der Bewältigung beschädigter Identität“. Frankfurt/M: Suhrkamp.

Goodley, D. (2014) Dis/Ability Studies. Theorising disablism and ableism. Abingdon: Routledge.

Maskos, R. (2018) „‘Und dann hab’ ich gemerkt, wie viel Spaß das auch macht‘. Rekonstruktionen von Behinderung und Nichtbehinderung am Beispiel der Rollstuhlnutzung. Vorläufige Ergebnisse einer qualitativen Interviewstudie mit gehbeeinträchtigten Menschen“. Journal für Psychologie, 26(2), 50–74

Ableism – Für ein Vorstellungsvermögen jenseits des individuellen autonomen Subjekts”, in: Zeitschrift für Inklusion (2). https://www.inklusion-online.net/index.php/inklusion-online/article/view/276

McRuer, R. (2006) Crip Theory. Cultural Signs of Queerness and Disability. New York, NY: New York University Press.

Reeve, D. (2012) Psycho-Emotional Disablism: The Missing Link? In: Watson, A., Roulstone, A. & Thomas, C. (Eds.) (2012) Routledge Handbook of Disability Studies. London: Routledge, pp. 78-92.

Moser, I. (2006) Disability and the promises of technology: technology, subjectivity and embodiment within an order of the normal. Information, Communication & Society. 9(3) pp. 373-395.

Witzel, A. (2000) „Das problemzentrierte Interview“. Forum Qualitative
Sozialforschung / Forum: Qualitative Social Research, 1 (1), Art. 22, http://www.qualitative-research.net/index.php/fqs/article/view/%201132/2519