ALTER, European Journal of Disability Research 9 (2015) 144–156
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Research paper
Turning disability experience into expertise in assessing building accessibility: A contribution to articulating disability epistemology Transformer l’expérience du handicap en une expertise dans l’évaluation de l’accessibilité du bâti : une contribution à l’élaboration d’une épistémologie du handicap Greg Nijs , Ann Heylighen ∗ KU Leuven, Department of Architecture, Research[x]Design, Kasteelpark Arenberg 1, box 2431, 3001 Heverlee, Leuven, Belgium
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Article history: Received 12 September 2012 Accepted 26 November 2014 Available online 31 March 2015 Keywords: Disability Disability epistemology Experience Expertise STS
a b s t r a c t In this article, the authors elaborate on the issue of turning disability experience into expertise, and that of the development of disability epistemology. They do so by applying an approach transposed from the field of science and technology studies (STS). As a field and approach that departs from more traditional understandings of epistemology, STS could well serve the articulation of a proper disability epistemology, and as such it could inform the wider field of disability studies. To this end, the article focuses on a European city’s Accessibility Advisory Committee (AAC), led by and (largely) composed of volunteering citizens living with an impairment. In order to influence the city’s built environment, the AAC has to develop tools to translate its experience into something usable for the professionals (planners, architects, city council and city administrations) involved in the decisionmaking process. One tool the AAC uses is a move-through building assessment. The authors follow the devising and realization
∗ Corresponding author. E-mail addresses:
[email protected] (G. Nijs),
[email protected] (A. Heylighen). http://dx.doi.org/10.1016/j.alter.2014.12.001 1875-0672/© 2015 Published by Elsevier Masson SAS on behalf of Association ALTER.
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of such a move-through assessment organised by the AAC where people with different impairments together with nondisabled participants visit a recently finished building to assess its accessibility based on their proper experience. The empirical material comes from observations obtained through participant observation of the assessment, its preparation and the collective discussions afterwards. The analysis of the ethnographic material of this movethrough assessment provides a rich understanding of how citizens with an impairment can impact their city’s built environment and vice versa. Three strands are explored: How is the tool devised? How is it put into practice? How does it affect the participating actors? © 2015 Published by Elsevier Masson SAS on behalf of Association ALTER.
r é s u m é Mots clés : Handicap Épistémologie du handicap Expérience Expertise STS
Cet article questionne la transformation de l’expérience du handicap en expertise. L’approche choisie par les auteurs est transposée du champ des Science and Technology Studies (STS). Dans la mesure où le champ et l’approche des STS s’écartent d’une conception traditionnelle de l’épistémologie, les STS se prêtent particulièrement bien à l’étude d’une épistémologie propre au handicap, elle-même susceptible d’apporter une contribution originale aux Disability Studies. En suivant cette perspective, l’article se concentre sur une expérience menée par le comité consultatif sur l’accessibilité (CCA) d’une ville européenne, dirigé par et (largement) constitué de citoyens bénévoles qui vivent avec un handicap. Pour parvenir à exercer une influence sur l’environnement bâti de la ville, le CCA est appelé à développer des outils permettant de traduire leur expérience dans une forme utilisable par des professionnels (planificateurs, architectes, les différentes administrations urbaines concernées) impliqués dans les processus de décision. Un des outils qu’utilise le CCA est une évaluation de l’usage des bâtiments réalisée en les parcourant. Les auteurs ont suivi le travail d’élaboration et la réalisation d’une évaluation organisée par le CCA. Cette évaluation consiste en une visite, par des personnes qui vivent avec un handicap et des personnes valides, d’un bâtiment qui vient d’être achevé afin d’en tester l’accessibilité. Les données empiriques ont été collectées lors d’observations participantes réalisées au cours de l’évaluation, de sa préparation et des discussions collectives qui suivent l’évaluation. L’analyse du matériel ethnographique permet de comprendre la manière dont des citoyens vivant avec un handicap peuvent influer sur l’environnement bâti de leur ville et inversement. Trois dimensions de l’expérience sont explorées : comment l’outil d’évaluation est-il construit ? Comment est-il mis en pratique ? Comment affecte-t-il les acteurs qui participent à l’expérience ? © 2015 Publie´ par Elsevier Masson SAS pour l’Association ALTER.
1. Introduction Questions of citizen participation and involvement of new stakeholders in decision-making processes of municipal policies often go hand in hand with new issues being made public. These can be
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raised by groups of people who are confronted in their day-to-day experience with a situation they want to question. An issue that has been drawn attention to over the last decades, on various policy levels, is accessibility to disabled persons. In order to be heard, local disability groups must put their everyday experience into practice, so as to formalize experience and turn it into expertise on the issue raised. The latter relates to questions of epistemology, i.e., questions about theories of knowledge. For long, these have been equated with science, investigating the foundations of certain knowledge. The general tenet of traditional epistemology implies purifying science “from the many biases that could potentially invalidate its knowledge” (Jensen, 2004: 235). These biases, still according to traditional epistemology, can come from inadequacies of the body (vis-à-vis the abstract capabilities of the mind), interaction with and potential inference of material devices used in knowledge production, and possible contamination of knowledge-claims by knowledge producers’ partisanship (Jensen, 2004). For disability groups’ project of knowledge production, this enumeration may raise problems, as the knowledge they want to produce actually resides in their bodies, it being embodied knowledge. Moreover, this knowledge production is not devoid of partisanship, since it aims at addressing and advancing the particular situation of disabled people. Hence, the tools and protocols they develop to conduct research on accessibility become pivotal in establishing legitimacy vis-à-vis the scientifically inclined technical and professional knowledge of other actors involved. In a traditional epistemological understanding, disability groups cannot make any claim to producing valid knowledge. In more recent years, traditional epistemology has been problematized, both in disability studies as in science and technology studies (STS), a social scientific research field that studies knowledge production in various domains. In disability studies, the objective, value-free production of knowledge has been contested. Claiming that “the process of knowledge production is surrounded by issues of authority and legitimacy”, blind sociologist Rod Michalko (2002: 175) deplores the subjugation of knowledges stemming from blind experience, which are even actively fought because they are “not only irrelevant, but are detrimental to the acquisition of objective (real) knowledges, knowledges that come from within sight” Michalko (2002: 182; emphasis in original). Therefore, he advocates for recognizing the situated knowledges emerging from disability experience. In this view, disability becomes a critical category of analysis. However, as disability studies scholar Simi Linton (1998: 120) emphasizes, if we want to introduce disability as a critical category of analysis, we need to reinforce its epistemological base: “A goal right now for this field [disability studies] is to formulate the epistemological foundation for viewing disability as a critical category of analysis, the absence of which weakens the knowledge base”. STS have contested traditional epistemology because of its lack of attention for the involvement of practical and material effects in knowledge production. This has led to problematizing virtually all key distinctions and relations in epistemology, “notably, between knowledge and power and between (scientific) ideas and their (technical) concretisations. By doing so [STS studies] have ineluctably challenged the central epistemological ambition to guarantee the possibility of formulating true (in the sense of reliably decontextualized) statements about the world” (Jensen, 2004: 236–7). Related to this challenge is STS researchers’ proposition that any epistemology is a political epistemology (Latour, 2004: 221). In light of these questions of epistemology, this article describes and analyses how a local disability group engages in producing knowledge on the experience of accessibility, i.e., how their everyday disability experience is put into practice, translated into an assessment tool, and how this subsequently helps transforming experience into expertise. 2. Context In 1997, a European city finished the reconstruction of the Great Market Square. Many people were unsatisfied with the result, however: wheelchair users had difficulty to cross the bumpy paving; visually impaired people had difficulty to orient due to the lack of guiding lines. A number of people thereupon decided to contact the public works department. The working group on accessibility of the public domain was born. One year later, the city council appointed the city’s Equal Opportunities Consultant (EOC) as the group’s regular contact person. Since then, the Accessibility Advisory Committee
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(AAC) has come a long way. It got officially recognized as the city advisory committee that advises on the (re)development of public spaces and buildings. Being an official participant in local policy development, the AAC has developed a policy vision.1 It advances a specific policy model to frame its expertise and participation: they “consider [their] knowledge on accessibility as complementary to the knowledge of the other actors. Those other actors are agencies or persons that have the professional and technical knowledge on building and accessibility, the city council, and the city administration”. Following the latter, the AAC employs a “partnership model” in which “equivalence is a policy principle. The city council decides which public space or building is to be (re)built. The city administration executes these plans. The advisory committee delivers its advice concerning accessibility based on «expertise by experience». The professionals take into account the advice of the advisory committee during the execution of the plans”. The AAC’s policy vision also touches on the problematic addressed in this article. On the one hand, the AAC recognizes the knowledge on accessibility of other actors involved in city planning and building projects, which is regarded as professional and technical. On the other hand, under the guise of an equivalence principle, the AAC advances a complementary knowledge that in its turn needs to be recognised and accounted for by administrative, technical, and professional actors, which is knowledge on accessibility based on ‘expertise by experience’. It is the experiential knowledge of the members of the AAC that becomes their currency of expertise. This does not mean that the AAC knowledge production is unfettered by the exigencies of technical and professional knowledge, however. If they are to propose alternative, complementary knowledge, based on a disability epistemology, they need to develop their own apparatus of inquiry through which disability epistemology is articulated. Following these observations, this article subsequently addresses three questions: how does the AAC devise tools to transform their experience regarding accessibility of public buildings into something usable for professionals? How is the tool devised put into practice? And what are the effects for the participating actors? In discussing and analysing these questions, we elaborate on the issue of turning disability experience into expertise, and of articulating a disability epistemology. Of the tools the AAC has developed to assess a place’s accessibility to disabled people, we study one tool in particular: a move-through building assessment. It implies that a group of AAC members and any possible volunteers pass through a site, public place or building. In general, the AAC performs the assessment in one group, with an ad-hoc composition (depending on participants’ availability), most often with a mixture of people with different impairments. Based on the discussions emerging during the assessment, somebody takes notes to make a brief report of all the remarks uttered. This report is then handed over to the city administration and any architects or planners involved in the building project under discussion. 3. Research approach As part of an ongoing transdisciplinary research project exploring dialogues between disability and architectural design (Nijs, Vermeersch, Devlieger, & Heylighen, 2010; Vermeersch, Nijs, & Heylighen, 2011; Heylighen & Nijs, 2014), we conducted a longer-term ethnographic study of the AAC’s practices. This article describes and analyses a subset of the gathered ethnographic material. The analysis covers different moments spanning over several months, in the development and execution of the move-through building assessment. For this part of the study, the ethnographic material comes from participant observation during the move-through assessment of one building – the City Office, and its preparations. The authors were present and participated in all stages of development and execution. The observations were recorded in field notes, photographs, and audio recordings. Additional material was obtained from presentations about the AAC by the EOC and the AAC president, and from documents about and written by the AAC. The following sections describe the setup of the move-through assessment of the City Office, as devised by the AAC and EOC, as put into practice, and as affecting the participating actors.
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The policy vision is cited from the year report of 2009, presented by the AAC.
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These descriptions alternate with analytical and theoretical considerations drawn from actornetwork theory (ANT), a particular approach within the broader STS field. For over three decades, STS has informed a wide range disciplines, domains, and issues of study. Starting out with (ethnographic) studies of science and technology, and their role in co-constructing society – mostly laboratory studies (Latour & Woolgar, 1986; Star, 1983) – more recent STS/ANT-inspired research moved to other sites of study, including the knowledge practices of professional designers in engineering (e.g., Henderson, 1991) and architecture (e.g., Yaneva, 2009). Moreover, various STS researchers have successfully applied an ANT approach to disability (Moser, 2005, 2006, 2009; Winance, 2001, 2006; Galis, 2006, 2011), some of whom have presented the possible valuable contribution of STS to disability studies (see notably Galis, 2011). Although the larger field of disability studies does not seem eager to adopt an STS approach2 , this article demonstrates how an STS/ANT approach can be useful to study disability expertise and epistemology. 4. The move-through as devised The first question we address has to do with one of the AAC’s major challenges: how does the AAC devise a tool to transform their experience regarding accessibility into expertise that is usable for professionals? The move-through assessment tool and, by extension, the AAC’s activities of enquiry into accessibility, could be considered as part of the so-called research in the wild tradition (Callon & Rabeharisoa, 2003). The latter refers to knowledge production by lay people with an eye on collaborating with or influencing experts in a given knowledge domain. Its rise has been noted by STS writers and disability organization specialists Callon and Rabeharisoa (2003), who observed that relations between experts and lay people have shifted in recent years, thanks to shifts in how political decisions are being made – by including lay people through consultation, participation, and public debate. Callon and Rabeharisoa (2003) warn against a double pitfall in addressing the relationships between professional and technical experts and lay people – the maxim of lay people ignorance versus the argument of the superiority of lay expertise in terms of its greater realism – and propose to adopt a symmetrical posture instead. Read through a symmetrical lens, the knowledge of professional and technical experts and that of lay people “are not contradictory but complementary”, they are a “mutual enrichment” instead of competition or substitution (Callon & Rabeharisoa, 2003: 196). What is more, in a symmetrical reading, it cannot be assumed that lay and professional and technical knowledge intrinsically differ: “It would, for example, be wrong to say that the former [professional/scientific knowledge] are explicit and codified while the latter [lay knowledge] are tacit, or that the former are formalized while the latter are informal. Everything depends on the equipment used on both sides” (Callon & Rabeharisoa, 2003: 196). In light of this observation, we consider in this section the AAC’s investigative endeavour and how, through devising the move-through assessment tool, it aims at producing knowledge that is explicit and formal. 4.1. Devising the move-through assessment tool After the City Office was ‘finished’ and in use, the EOC and the AAC wanted to assess the building in order to allow for a follow-up evaluation of its accessibility to disabled people. The idea was to conduct a move-through assessment. Usually these assessments are done in one small group (five to ten people), yet this time it was going to be somewhat different. In an effort to take the tool a step further, the EOC and AAC board members decided to invite many more people than usual, and to conduct a more comprehensive and elaborate assessment. Subsequently, the tool’s setup had to be revised to get more elaborate, too. The setup was devised such that there were to be four different groups, each made up of a ‘specific’ impairment: a group of wheelchair users, blind and visually impaired, deaf and hearing impaired, and one of people with an intellectual disability. Based on the AAC’s earlier experiences, this choice
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For some possible reasons why, see (Galis, 2011).
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seemed more workable for both practical and logistical reasons according to the EOC and the AAC vicepresident. Because of the size of the group to be invited, it would be a problem if the group moved all at once; not only physically – with the visited spaces sometimes being too small for the whole group – but also in terms of interaction between participants. As the EOC stated, during AAC assessments some people raise their voice more than others. Working with different impairment groups would give everybody a chance to have their say. The setup also contained an itinerary per group. Each group would start at a different place in or around the building, and work its way through an itinerary so that everybody would have completed the same tour in the end. The itineraries were parcelled according to different building functions or uses: typical episodes such as wayfinding around and getting in a building, or taking an elevator; or site-specific sequences like finding information, waiting for service, queuing, or taking place in a ‘service cubicle’. Together, the parcels of itineraries made up a use scenario of the building. After having completed the whole scenario, the participants should have passed through all the ‘significant’ spaces of the City Office. In order for the participants to know what to do during the move-through, the scenarios were written down in instruction sheets. These contained headings designating the different impairment groups, e.g., “Tour with persons with a visual impairment”. The documents contained instructions on where to start, where to go next, etc. Keywords and goal-oriented questions gave instructions on what to explore or inspect according to the space’s type and character – e.g., horizontal or vertical circulation, entrance, waiting areas, meeting desks, working areas, etc. – and the specific impairment group. For every sequence in the scenario, appropriate goals were outlined by way of questions: “Is the environment accessible to people with a visual impairment?”, “Can the building be reached easily via the public elevator to people in wheelchairs?”, “Is service provision accessible?”, etc. Keywords for every sequence were given as points of attention: “reception desk”, “ticket system”, “service counters”, “meeting rooms”, “office desks”, etc. The four groups each got appointed a person taking notes. In the former, less complex version of move-through assessments, one person was noting down the remarks made, yet in the new version this was not enough. Since the groups were to be separated, they would not know what happened in the other groups. That is why a specific protocol was worked out. The people taking notes would note down the comments and discussions during the move-through. They would also take pictures – in cases where words would fall short. Immediately after the move-through, the groups would sit together to discuss the notes and pictures, to be collectively debated with the other groups afterwards. Eventually, a report including the written results of discussions and the selected photographs would serve as the assessment’s output, to be handed over to the city administration. 4.2. Commonalities with scientific, technical, and professional knowledge production 4.2.1. Reflexivity In research practices, reflexivity has to do, for one, with researchers’ awareness of their own involvement in the process and outcomes of their research; with being conscious about one’s own actions, or critical about others’ actions. Whereas reflexivity has for long been treated as a source of privileged knowledge (cf. Lynch, 2000), and thus a trait of research and action to distinguish expert from lay knowledge, more recently it has been broadened to lay knowledge practice, thus problematizing the expert-lay knowledge divide (cf. Wynne, 1996). In the AAC’s assessment practices, reflexivity is involved in several ways. In addressing accessibility through ‘expertise by experience’ the AAC shows that it realizes that experience itself can actually be used as an analytical category. Also, they reflexively position their knowledge relative to other forms of knowledge. Advancing their knowledge as complementary to technical and professional knowledge, they implicitly adopt a critical stance towards the latter, asserting that it is not all-encompassing and can be complemented. And by positing the equivalence principle, the AAC itself manoeuvres the gap between expert and lay knowledge. Devising the move-through assessment tool, moreover, is not a futile exercise. It aims at knowledge production, not for its own sake, but to intervene in the course and practices of other actors. Therefore, the aim is to render explicit the disabled participants’ experience of the building’s accessibility.
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In preparing the assessment, they are not ‘just’ doing something. They are, instead, reflexive about their own research practices. Past experiences with assessing accessibility are discussed and evaluated while devising the ‘new’ setup, and inform adjustments to the protocol: the groups are separated to improve in-group interaction, practical and logistical concerns are integrated into the new tool, and what have already become ‘typical’ problematic features of a building are included too. 4.2.2. Formalization If the AAC is to use disability experience as a currency of exchange with technical and professional actors, they need to turn this experience into formal knowledge. In order to assure the smooth execution of the move-through assessment, they developed a research protocol composed of different elements that have to formalize the enquiry. Disability is formalized in terms of impairment categories, resonating larger, institutional categorizations. A certain degree of formalization also assures that the assessment proceeds along a more or less orderly course, and that the objectives of the enquiry are met, i.e., that the building’s accessibility to disabled people is assessed. The building’s ‘ordinary use’ is translated into scenarios, which in turn are translated into physical, written documents with more detailed instructions. Thereby, space and its use are formalized. Further, we can mention the designation of people as notetakers, formalizing the roles of ‘participants’ and ‘research assistants’. The corresponding tasks to be executed, in turn, are formalized in written research protocols, engendering some uniformization between the outputs of the different groups. 4.2.3. Proto-instruments and inscriptions The formalized setup also contributes to the goal of producing knowledge on disability experience of accessibility. Formalization helps in making this knowledge explicit. Apart from devising a research protocol and physical guiding instructions to conduct the research, it also implies mobilizing instruments to document the enquiry. Besides making the knowledge produced formal, it needs to be fixed to be made transportable (Callon & Rabeharisoa, 2003). With an eye to this transportability, the tool is devised to make use of proto-instruments of research. These include sheets and booklets to take notes, and photo cameras to take pictures. As the comments uttered during the discussions are noted down, issues and concerns are verbalized. Moreover, as they are written down, a physical trace of the discussions is kept. This later allows for the verbalized information to be collected, synthesized, and edited into a larger written text that can serve as output of the assessment. The photographs in turn serve to visualize information. Visualization of issues through photography is a powerful instrument of unequivocal fixing. The photographs’ iconic properties allow transferring the information with a minimum of distortion. As a veracious empirical record, they do not so much ‘prove’ a point but enable a debate on it. In that sense, the written and photographed accounts, we would argue, can be understood as ‘inscriptions’. An inscription is used as “a general term that refers to all types of transformation through which an entity gets materialized into a sign, an archive, a document, a piece of paper, in a trace” (Latour, 1999: 328). The written notes and photographs taken materialize aspects of accessibility; they fix the fleeting character of the discussions, or fix complex sets of information in one image. Because of the inscriptions’ fixed character, the information the AAC wants to share with other actors becomes shareable since it becomes transportable. The written accounts and photographs can be handed over to others, the discussions themselves and parts of the building that are photographed cannot. And that is the great advantage of the inscriptions, they are both mobile – once the photographs and notes are integrated in a report, they can be given to other actors involved – and immutable – as the experience of accessibility is fixed in the written and photographed traces (Latour, 1990). But there is more. The amount of experience, negotiation, and discussions and the inscriptions made of them in each group exceeds what ends up in the final report. The tool is devised such that in moving from the move-through to the final report, there is a so-called cascade of inscriptions (Latour, 1990), which parallels a cascade of negotiations. The ‘raw’ material gathered through the assessment, is maximized in each group and then gets gradually reduced. In this process, different levels of negotiation can thus be distinguished. At the individual level, there is the negotiation between the person and the building. At the in-group level, there is the negotiation between participants with
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a similar impairment. And at the between-group level there is the negotiation between participants with different impairments. The negotiations can be said to be cascade-like, moving from individual, singular variety of experience and arguments to more collective, less varied accounts. At the same time there is a cascade of inscriptions: from noting down and photographing individual remarks to inscribing negotiated issues on inscription devices provided by the EOC (a set of structured forms that were the same for all groups). In the cascade of inscriptions, we move along to more simplified and unequivocal knowledge, i.e., less ‘subjective’ and more robust ‘objective’ knowledge. The cascade removes the clutter of traces by using the same artefacts, and in doing so, makes the experiential stuff into formal data. 4.2.4. Simplification For the AAC’s experiential knowledge on accessibility to be recognised and accounted for by administrative, technical, and professional actors, it is good to formalize their experiential knowledge through the tool they have devised. However, there is a reverse side to the coin, too. Parallel to scientific work, formalizing knowledge through tools, protocols, and reports, the problem they wish to address – i.e., inaccessibility to disabled persons – becomes subject to simplification. This may be a necessary evil in knowledge production. As sociologist of science Susan Leigh Star (1983) has shown, scientific work more often than not goes hand in hand with simplification. This not necessarily because scientists want to (over)simplify a phenomenon under study, but because they have to reconcile between theoretical commitments and the constraints on material resources: “To work without getting lost in endless contingencies, scientists must draw boundaries and exclude some kinds of artefacts and complications from consideration. In other words, part of doing science is transforming problems with many contingencies into those simple enough to work on” (Star, 1983: 206–7). As scientific work entails essentially transforming the chaos of the world into something more or less orderly, “[s]implification is one method of proceeding with work problems which, because of limited resources, cannot be handled in their full complexity” (Star, 1983: 211). So too, the AAC resorts to simplification to get their work done. Disability experience, through the setup of the move-through assessment, gets simplified in at least three ways. First, its variegated nature gets simplified by redressing it into impairment categorization. Not only is its diversity read through the lens of impairment categorization, thereby equating disability with impairment, the whole spectrum of disabilities and disabling situations is reduced to four categories, not more, nor less. Second, formalizing a building’s use into itineraries, scenarios, and attention points simplifies the complexity of accessibility. Even though the written signifiers, i.e., the words used to instruct the participants, stay semantically and largely ‘open’, they exclude vast parts of real-world accessibility problems. Third, the cascade of negotiations and inscriptions, and the move from singular to collective aspects of disability experience, tends to homogenize disability experience. In order to make the assessment less subjective, individual differences and (to a certain degree) impairment related differences get levelled out. 5. The move-through as enacted Our next question to consider is: how is the move-through assessment that has been devised put into practice? 5.1. Putting the move-through assessment tool into practice On a Tuesday afternoon, about 50 people arrived at the City Office and ‘found their place’ in their respective groups. The latter proved less evident than foreseen, mainly because the four groups – visually impaired, hearing impaired, intellectually disabled, and wheelchair users – were less homogeneous than the written headings on the instruction sheets suggested. Categories were stretched in a discursive way: e.g., the wheelchair user group was joined by a spokesperson of a local organization for older people. Being ‘mobility challenged’ seemed to be the semantic connection.
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Some groups also had nondisabled participants, namely professional accessibility advisors (PAAs). Their presence, and critiquing, ‘overruled’ other participants. A notetaker noted down in his fieldnotes: “the visit is particularly being overruled by the vision of the professionals, who – from an exact knowledge of regulations – want to test every aspect of the building according to these regulations”. This changed the group dynamics considerably. Not only did the PAAs utter comments without trying out what they were critiquing, and thus judged the building from a distance, based on regulations, they were not receptive or open to contrasting comments made by other participants. The judgements made from a distance by the PAAs contrasted sharply with the embodied evaluations made by disabled participants. An example of this is a discussion in the wheelchair user group: upon arrival at the accessible toilet, two wheelchair users got into a discussion whether or not this toilet could be entered. Upon sight, B. stated that opening the door would be impossible because of the door handle’s shape. “Okay”, said another participant, “but why don’t you try it”. The whole group stood back as B. tried to open the door by lifting his partly paralyzed arm. It did not work. So, he tried it differently, this time using his armrest. Again, it did not work. The other participant, also partly paralyzed in the arms, asked whether she could try. She said: “usually, when I have this problem, I just use my feet”. She then tilted her wheelchair backwards, lifted it so that her foot braces clung to the door handle, tilted a little forward again, and then with a subtle turning away she opened up the door while at the same time positioning to enter the toilet space. The assessment entailed scenarios that concerned the building’s real-world, ‘ordinary’ use. These scenarios, which were rather limited on paper, gave way to full-blown performances during the movethrough. Put into practice, they involved the different participants who brought along their bodies, mobility and other devices (like dogs, translators, wheelchairs, canes, glasses, hearing devices). These participants fed the assessment with their skills, knowledge, biographies, and imagination, in order to multiply the accounts to be recorded. The recording and inscription devices (pens, notebooks, photo cameras) were at once silent witnesses and active reminders of the assessment’s purpose, while at the same time framing the scenarios. The building, too, played its part. It acted as an interactive stage, or rather a series of small, interrelated stages, suggesting all kinds of episodes in the assessment. The interplay between all these human and nonhuman actors co-created the overall move-through assessment and enabled the acting out of smaller narratives of possibility to feed the evaluation, i.e., to produce the necessary knowledge for the assessment. Altogether, the human and nonhuman actors enacted the move-through building assessment. 5.2. Accounting the move-through assessment as enacted One way of understanding the move-through assessment as put into practice, is as a staged performance. In the social sciences performance refers predominantly to how people play roles in their daily lives, acting out identity (Goffman, 1959,1971). In this sense it relates to dramaturgical performance, as a social performance, a voluntaristic investment of identity, an immaterial social dimension projected onto bodies, things, and situations. Because of the lack of materiality in its conception, STS philosopher and ethnographer of medical practice Annemarie Mol (2002) has departed from the notion of performance. This lack, she points out, applies to the materiality of both the body and the material surroundings. Instead she adopts the notion of ‘enactment’ to stress materiality’s importance in the occurrence of identity in a given situation, and the reality that is brought into being. Following Mol, we consider the move-through assessment as put into practice as enactment to account for how such a reading shifts our understanding of it. In accounting for the move-through assessment as enacted, a first point of attention concerns the impairment categories used to divide the participants into groups. The impairment categorisation on paper differs from how it is put into practice, and enacted, during the assessment. Whereas the categorisation on paper suggests the existence of clearly distinct groups, their enactment on the day of the assessment was somewhat different as the groups appeared less homogeneous. Motivated by material similarities between participants’ bodies and not socially constructed identities, the groups’ arrangement was guided by how the built environment constraints people’s actions (i.e., disability instead of impairment). Hence the appointment to the group of wheelchair users of the spokesperson for an organization for older people, although he was not in a wheelchair. The categories as enacted
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during the assessment are thus worked and reworked; they are all but fixed and given, nor are they ‘merely’ socially constructed. As for the enactment of the assessment that followed – via all the material entities brought together – materiality’s importance surfaces in at least two ways. On the one hand, there are the instruments that must frame and record the assessment. On the other hand, there is the materiality of the building in interaction with the participants’ (extended) bodies that have to ‘do’ or ‘make’ the assessment. One could relegate the role of the instruments devised for the assessment as ‘props’ in the social performance of the evaluation, again as ‘mere’ material scaffolds to a strictly human and social exercise. Leaving them out of the account in this way, however, would mean to “cheat out on the fullness of [their] capacity” (Barad, 2003: 810). For both the notes and photographs (as inscriptions) and the scenarios, when put into practice, contribute to the elaboration of disability knowledge and epistemology. In the former section, we stated that the notes and photographs materialize disability experience. Through their physical fixity they formalize disability experience as disability knowledge, through their transportability they enable knowledge transmission and as such provide means for comparison and debate with other actors. The same holds for the scenarios, although these should be put in relation to the building and the participants’ (extended) bodies. When we stated above that they are rather limited on paper, but give way to full-blown performances during the move-through, we can subsequently suggest that the scenarios act as material prisms that refract the possibilities of the building’s experience and use by disabled participants. Once put into practice, the scenarios multiply the meanings related to the words used to describe them on paper. The latter follows from the material effects of the interaction between the participants’ bodies and the building. As the abovementioned episode in the wheelchair group exemplifies, an ‘accessible’ toilet does not necessarily imply actual accessibility to everyone. On paper, the toilet may be presented as ‘accessible’, once actually tried out, it turns out to be either not accessible (for B.) or accessible, yet in quite a complicated manner (for another participant). In the actual engagement with the building, different realities of both disability and accessibility are enacted. Part of the translation of the building’s experience, and of its ‘accessibility’, passes through the bodily engagement with the building, and the actual disablements the latter effects. 6. The move-through as affecting its participants The third and final related question we address is how the tool affects the participants. With experience being the AAC’s currency of expertise, we have a closer look at how experience and expertise connect. A first type of expertise involves disabled persons talking for their ‘own’ disability. How the move-through assessment was done, and the nuances in the discussions between participants with a similar disability reflect some ideas we want to advance here. In the wheelchair user group, for example, most things were tried out through lived experience. Doors were opened, elevators taken, passages like corridors were driven through, desks were driven under, toilets were entered and turned around in. . . These negotiations were not absolute, but relative and nuanced. In dealing with the building, ways were found. This was also echoed in some discussions. When the wheelchair user group entered the building and was supposed to look for a reception help system, B. said that “the multiple possibilities are a good thing for the user. If you don’t see the adapted reception computer, there are always persons behind the reception desk to help you”. Unlike in a point-to-point evaluation (assessing the computer interface apart from the human interface), the sequence is put in relation. In this way, not only does his account seem to correspond more to real-world situations, it also allows for different users and uses of the entrance and reception sequence. Now what to make of this? The expertise described above, and the way it is enacted during the move-through, we suggest, can be considered as expertise-in-experience. It is expertise through embodied, biographical experience. In dealing with the built environment, disabled people are confronted with obstacles or problematic situations on a regular basis. In such situations, triviality turns
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into a trial. Such problematic situations prompt enquiry (Relieu, 1999), invoking particular and reflexive attention. The latter come with skills to perceive and deal with the situation’s obstacles. During the assessment the reflexive attention of daily life is continued, making the accounts quite rich. Disability, accessibility, and negotiation are well-articulated in multiple ways. Accessibility following from this kind of expertise puts in relation the human and nonhuman entities implied in the situation. And the situation is the starting point of analysis, not (a set of) isolated objects. During the move-through, disabled persons made many remarks ‘for other disabilities’. The visually impaired group made remarks for wheelchair users, and vice versa. One way of understanding this phenomenon, is to consider the AAC membership as a learning process. This because, strikingly, the disabled persons who talked for other kinds of disability during the workshop, were to a large extent AAC members. The learning situations are consecutively enacted in the AAC’s different assessment activities. In this way connections of shared experience are created that allow to look for the others, even when they are absent. B., the AAC president, told us that they often do the move-throughs together, with the different kinds of impairment. We would suggest that this creates a learning situation, whereby coming in contact with other kinds of impairment in a situation that draws attention to other people’s experience, makes one aware of other kinds of differences. As an organization that implies this kind of learning, then, the AAC might carry out “a montée en généralité linking specific concerns and positions to collective issues” (Callon & Rabeharisoa, 2003: 200), but at the same time the opposite happens: by learning to become aware of other kinds of disability, AAC members also enter into the regime of the familiar (Boltanski & Thévenot, 1991) – from the general to the particular. They become more aware of the details that make up the familiarity of a person in dealing with a building. In terms of expertise, this would mean that they acquire an expertise-on-experience, an expertise through familiarity with others. Further, we need to consider the expertise of the PAAs, the nondisabled professional accessibility advisors. Based on the remarks made during the assessment, the PAAs seemed very present in that they had many comments. A closer look revealed that their comments are mostly variations on the same themes. Instead of a widening range, the PAAs’ comments reflected rather a narrow view of what accessibility is or could be. They, too, have learned to become aware. Yet, they have done so in another register. For example, at the big stairs rising from the adjacent square to the City Office, a PAA commented: “the stairs to the esplanade are monstrous: the railing in the middle begins and ends at the beginning and the end of the stairs, while it should – according to the rules – continue a little further. The railing is also interrupted halfway the stairs, what shouldn’t be allowed. The lanterns are also dangerously close to the railing”. An intellectually disabled participant responded: “Oh yeah, what is this railing actually like? Let’s test! [He mounts the stairs and slides with his hand over the railing] I don’t think the railing is soft enough. It feels cold and sharp!” The PAA’s accounts of the stairs’ accessibility differ from the other participants’. The former accounts in a point-per-point manner, by looking from a distance rather than trying it. Rather than on the interaction between user and building the focus is on the building’s formal characteristics. The rules of accessibility have replaced the lived (inter)action, which is probably how the PAA was trained. Nevertheless, the connection between experience and expertise is not gone. It is just differently translated and mediated. The phenomenon of accessibility is delegated to a representation: accessibility understood as rules, building codes and regulations. Thus, rather than being directly concerned with experience, the PAA’s expertise can be said to be an expertise on accessibility rules. Finally, most groups had nondisabled participants who were novices in building assessment on accessibility. However, almost from the onset, they began formulating comments as if they had been experts in disability experience since longer. While this surprised us, it might be understood in line with understanding the assessment as a learning situation. First, we think that the move-through as discussed actually prompts people to talk freely. The fact that it is an assessment leads people to critique things more easily. But this may also be reinforced, second, by the attention the assessment asks for: attention for accessibility and disability experience, ‘imagining how it would be’. This attention in turn leads to seeing things that can be derived from what one knows about disabled persons, however limited. A third and final suggestion lies in the disabled participants’ performances during the workshop. When the wheelchair group arrived at the public elevator, most of the group did not really know what to do. B. then took up his role as an experienced assessor and performed it by simply driving
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towards the elevator door and taking the elevator while the others stood there as an audience. While the others did not feel quite at ease, B. seemed to be used to this kind of scrutiny of his behaviour. At that point, he enacted not only his disability, but also his expertise. It does not seem unfair to advance the idea that the assessment offers novices a learning situation whereby the assessment framework motivates participants to talk freely. And that attention, along with the enactment of disability, lead to learning to see for a disabled person. Much in parallel with the learning of professional vision (Goodwin, 1994), the embodied, situated and action-based apprenticeship of nondisabled participants has a propensity for the learning of expert vision. In fact, that is what one participant literally said halfway the workshop: “I’m already learning how to see, too!” Resembling the expertise (or at least the becoming of an expert) of the disabled AAC members looking for ‘another’ disability, the novices’ learning process can lead to another version of expertise-on-experience.
7. Discussion & conclusion Having addressed the questions of how the move-through assessment tool was devised, was put into practice, and affected the participants in terms of turning experience into expertise, we now turn to the discussion of the consequences for the development and articulation of a disability epistemology. In accounting how the assessment tool was devised, we illustrated that the AAC’s research in the wild, “is an organized, instrumentalized, and reflexive research” (Callon & Rabeharisoa, 2003: 197), and as such is not fundamentally different from scientific, technical and professional knowledge production. Through devising the move-through assessment tool, the AAC intends to make its knowledge explicitly exist through a process that entails reflexivity, formalization and simplification. In line with Callon and Rabeharisoa (2003), our analysis thus suggests that no fundamental difference in status exists between knowledge produced by the AAC and that produced by researchers or professionals. By devising a tool for knowledge production about accessibility, the AAC is developing a more robust epistemology; a disability epistemology that is anchored in disability experience. Accounting the building assessment as enactment and not as a social(ly constructed) performance, by integrating the materiality of bodies and objects, then, brings about a shift in our understanding of epistemology, which may create openings for a proper disability epistemology to be developed. Instead of being discarded out of the field of ‘valid’ knowledge production on the basis of including bodily effects, interaction with the material devices to produce knowledge, or partisanship, it may be more interesting to accord with the novel STS version of epistemology: “Stressing the intertwinement of human and nonhuman actors in science challenges traditional epistemology because activities such as observing and representing are not seen as distinct from intervening or constructing; rather, they are viewed as specific ways of intervening and constructing” (Jensen, 2004: 248). By adopting an STS-like posture on epistemology, disability epistemology – and by extension, disability studies – may meet the calls of scholars like Simi Linton (1998) and Rod Michalko (2002) to formulate an epistemological foundation that views disability as a critical category of analysis, being based in the situated knowledges held by impaired or disabled people themselves. Another important consequence of such a posture, which moves away from the exclusive and reductionist tendencies of traditional epistemology, is that by recognizing and accepting observing and representing as specific ways of intervening and constructing, disability epistemology coincides with disability ontology, and creates possibilities of inclusion and addition instead. As Jensen (2004) continues: “In this view, epistemology collapses into ontology and the sciences are reformulated as practical activities aimed at (re)building the world by adding new elements with new capabilities and new relationships to it. Knowing (and thinking about knowing) are turned into particular styles and methods for connecting and cooperating with specific actors (human and otherwise)” (Jensen, 2004: p. 248; emphasis in original). Looping this back to the AAC’s aim – the complementarity and equivalence of disability knowledge to technical knowledge – we find that this take on epistemology in terms of disability rebuilds the world by adding new elements, capabilities and relationships; whereby disability epistemology can be considered as a particular style or method to connect and cooperate with specific actors. Instead of opposition as advocated by traditional epistemology, this may foster epistemological solidarity.
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Accounting in detail different articulations of experience and expertise, finally, adds elements to an understanding of the coming about of such epistemological solidarity. Becoming an expert in experience means learning to become aware in new ways, framed by the tool. All participants are thus involved in a comparable learning process of turning experience into knowledge, of turning experience into expertise. Furthermore, the personal awareness participants learn applies to their individual situation, but also to other people’s experience, turning this awareness into knowledge about others through uttering comments and reflections on this. “I’m already learning how to see, too!”, as the novice participant put it, may be a mark of an emergent epistemological solidarity. Disclosure of interest The authors declare that they have no conflicts of interest concerning this article. Acknowledgements The research reported in this article has received funding from the European Research Council under the European Community’s Seventh Framework Programme (FP7/2007-2013) / ERC grant agreements No. 201673 and No. 335002. The authors would like to thank the president and members of the Accessibility Advisory Committee for sharing their time and insights. References Barad, K. (2003). Posthumanist Performativity. Signs, 28(3), 801–831. Boltanski, L., & Thévenot, L. (1991). De la justification. Paris: Gallimard. Callon, M., & Rabeharisoa, V. (2003). Research “in the wild” and the shaping of new social identities. Technology in Society, 25, 193–204. Galis, V. (2006). From Shrieks to Technical Reports, PhD thesis. Linköping University, Faculty of Arts and Sciences. Galis, V. (2011). Enacting Disability. Disability & Society, 26(7), 825–838. Goffman, E. (1959). The Presentation of Self in Everyday Life. New York: Doubleday Anchor. Goffman, E. (1971). Relations in Public. New York: Basic Books. Goodwin, C. (1994). Professional Vision. American Anthropologist, 96(3), 606–633. Henderson, K. (1991). Flexible Sketches and Inflexible Data Bases. Science, Technology & Human Values, 16, 448–473. Heylighen, A., & Nijs, G. (2014). Designing in the absence of sight: Design cognition re-articulated. Design Studies, 35, 113–132. Jensen, C. B. (2004). A Nonhumanist Disposition. Configurations, 2, 229–261. Latour, B. (1990). Visualisation and Cognition. In M. Lynch, & S. Woolgar (Eds.), Representation in Scientific Practice. Cambridge, MA: MIT Press. Latour, B. (1999). Pandora’s Hope. Cambridge, MA: Harvard University Press. Latour, B. (2004). How to Talk About the Body? Body & Society, 10(2–3), 205–229. Latour, B., & Woolgar, S. (1986). Laboratory Life. Princeton: PUP. Linton, S. (1998). Claiming Disability. New York: NYU Press. Lynch, M. (2000). Against Reflexivity as an Academic Virtue and Source of Privileged Knowledge. Theory, Culture & Society, 17(3), 26–54. Michalko, R. (2002). Estranged-Familiarity. In M. Corker, & T. Shakespeare (Eds.), Disability/Postmodernity (pp. 175–183). London: Continuum. Mol, A. (2002). The Body Multiple. Durham: Duke University Press. Moser, I. (2005). On becoming disabled and articulating alternatives. Cultural Studies, 19(6), 667–700. Moser, I. (2006). Sociotechnical Practices and Difference. Science, Technology & Human Values, 31(5), 537–564. Moser, I. (2009). A body that matters? Scandinavian Journal of Disability Research, 11(2), 83–99. Nijs, G., Vermeersch, P., Devlieger, P., & Heylighen, A. (2010). Extending the Dialogue between Design(ers) and Disabled Use(rs). In D. Marjanovic (Ed.), Proceedings of the 11th International Design Conference DESIGN (pp. 1817–1826). Design Society. Relieu, M. (1999). Travaux en public. In M. de Fornel, & L. Quéré (Eds.), La logique des situations (RaisonsPratiques no 10) (pp. 95–117). Paris: Éditions de l’EHESS. Star, S. L. (1983). Simplification in Scientific Work. Social Studies of Science, 13(2), 205–228. Vermeersch, P., Nijs, G., & Heylighen, A. (2011). Mediating artifacts in architectural design: A non-visual exploration. In P. Leclercq, A. Heylighen, & G. Martin (Eds.), Designing Together - CAADfutures (pp. 721–734). Liège: Les Éditions de l’Université de Liège. Winance, M. (2001). Thèse et prothèse. PhD thesis. École des Mines de Paris. Winance, M. (2006). Trying Out the Wheelchair. Science, Technology & Human Values, 31, 52–72. Wynne, B. (1996). May the Sheep Safely Graze? In S. Lash, B. Szerszynski, & B. Wynne (Eds.), Risk, Environment & Modernity (pp. 44–83). London: Sage. Yaneva, A. (2009). The Making of a Building. Oxford: Peter Lang.
