Politics of disability
Since the 1960s, inclusion and integration policies have gained prominence in the disability field. According to this position, disabled people should be educated in ordinary schools and participate alongside any other citizen in all of society's institutions. The goal of disability politics should be to make disability as irrelevant as possible, with an implicit degradation of the disabled body as less-than-normal. Opposed to this perspective we find a position whereby disability is defined as a difference alongside any other bodily difference. Based on this notion of a non-pathological body, disabled people will gain from building coalitions based on shared positions and experiences and come together as an interest group. According to this perspective, the nurturing of a disability identity is important. The goal of assimilating into normality, inherent in discussions on integration and inclusion, is challenged. A space for difference, for alternative normalities, is opened (Stiker 1999; Swain, French, and Cameron 2003; Shakespeare 2006; Sibers 2008). However, how disabled people gather together and form common experiences is empirically not a well-addressed issue in discussions about disability identity and unity. To understand the identity work necessary to accommodate alternative normalities, we need to know more about practice.
Among Deaf1 people, the status as disabled is highly disputed, but the deaf are without doubt perceived as such by most hearing people, both disabled and non-disabled. However they are perceived, Deaf people have a long tradition for positive identity formation based on what is looked upon as a disability by outsiders. Historically, Deaf schools, Deaf clubs and Deaf sports events have been common meeting places for Deaf people. Moreover, a long tradition exists among Deaf people for meeting in transnational contexts. There is reason to believe that their sharing a common language inclines deaf people more than other disabled people to establish such meeting places. In an autobiographical study of deaf people, the importance of contexts dominated by sign language communication is emphasised:
In these ways, the transnational gatherings are a key arena for negotiating identities in the Deaf world. This paves the ground for our research question: How do Deaf people negotiate a social position that values difference when they gather in transnational contexts? In this article, we present fieldwork-based insights into transnational events among Deaf people, and we argue that identity negotiations taking place at these meeting places are relevant to disabled people. The negotiations illuminate pressing issues such as accessibility and conflicting perspectives on what impairment shall mean in the lives of people affected.
By following some of my [deaf] informants from one setting to another and being engaged in their autobiographical constructions and reconstructions, it has gradually become clear to me that different aspects of self and identity actualize differently in different situations. In specific situations, such as during the World Congress of the Deaf in Brisbane, some aspects of selfhood seem to be covered or slumbering or not considered of relevance (the daily belittlement of being pitied, for instance), while others become highlighted and openly expressed (the pride aspects of being Deaf). (Breivik 2001, 328–329)
In definitions of disability, a change from an individualized perspective framed by medicine to a collective perspective framed by the disabled people's movement has occurred. In this new perspective, often referred to as the social model, disability is defined as the outcome of society's excluding people with body impairments. The concept pair normality and deviance frames professional and lay discourse on these issues. Normality is highlighted by medicine as the ultimate goal for the disabled. It implies that disability is a deviance to be eradicated. ‘The normate’ is suggested as a concept defining the unmarked state that is the opposite of disability (Thomson 1997, 40). In opposition to the stigmatizing processes underlying the power of the normate, the celebration of difference is introduced. Here, positive values in the disability experience are highlighted. Disability is a different way of living, not a deviant one. Normality or difference is the key question, according to Mike Oliver (1992), the key scholar introducing the social model of disability (Oliver 1990).
The difference perspective on disability opens a space for reflection on disability as a value. In scholarly writings on disability as a valuable difference, this perspective is argued on different levels. For example, at the level of biological diversity it is argued that the neurological difference that causes disabilities such as dyslexia is a prerequisite for innovative spatial thinking among architects and sculptors (Davis 1995, 3–7). At the level of inspirational practice, Sibers (2008, 153) argues with reference to Shakespeare's writings that the sexual practices of disabled people allow for greater experimentation and diversity. These practices have value to all sexually active people. Finally, at the level of politics, the philosopher Julia Kristeva (2010) discusses disability as a difference that instigates a reflection on vulnerability in all people. The common experience of vulnerability makes possible strengthened social solidarity, hence the rewriting in the title of her journal article on the issue: ‘Freedom, equality, fraternity … and vulnerability.’ In response to these quests for valuing difference in understanding disability, we explore the Deaf experience and its contribution to alternative normalities. In line with Bauman and Murray's (2010) quest for studying Deaf ways of being as ways that contribute to human diversity, we contribute to the development of universal gain as a common denominator to both Deaf Studies and Disability Studies.
Introducing the Deaf experience
Identity forming processes among Deaf people have never been and cannot be understood within narrow national or regional frames. Both the medical view (implying that deaf people should adjust to a non-signing environment) and the Deaf-centered visual politics are ideas transcending national borders. A long tradition exists among Deaf people for meeting in transnational contexts. As early as the mid-nineteenth century, meetings in both Europe and the United States involved delegates from several countries (Murray 2007). The first World Games for the Deaf (Deaflympics) was arranged in 1924 and the first World Congress for the Deaf was held in 1951. Unfortunately, the Winter Deaflympics was cancelled in 2011 and the Summer Deaflympics 2013 was rescued in the last minute, when Sofia, Bulgaria declared they could host the Games after Athens, Greece had to cancel their involvement due to financial problems. The world congresses are ongoing every fourth year. These gatherings have become important manifestations of Deaf culture and politics, and they are important arenas for developing social relations among Deaf people. Here, as elsewhere in the Deaf world, sign language, visual culture and a critical stance against sound-based communication are of prime importance.
When meeting at such events Deaf people gather not as disabled, but as a community of communicators sharing one another's languages, common histories and strong cultural similarities. As stated by the organizers of the World Federation of the Deaf (WFD) World Congress in 2007, ‘an underlying issue will pervade everything, i.e. the right to difference, to diversity and to an identity shared by millions of people of different races, ideas, languages and beliefs.’2 This right to difference is staged and defined at transnational events as an opposition to a few clearly defined symbols of attempts to assimilate Deaf people. But as we shall see, deaf people attending the transnational gatherings are a heterogeneous group. The assimilative practices of oral communication and using hearing aids pop up as zones of controversy.
Sign language is the big difference between the Deaf and (other) disabled people. Sign language-using Deaf people has a wider ground for forming a community. Institutional practices such as language learning, poetry and theatre contribute to such community forming (Ladd 2005). It may even be possible to widen the perspective to three understandings of deafness. It can be seen as either an impairment to be treated, a ground for a common language or as a disabling condition. These three ways of seeing deafness are not antagonistic; instead, the interaction between them may contribute to a clearer understanding of deafness as a social phenomenon relevant to a wide range of discourses (Kermit 2009), one of them disability. Striving for treatment, fighting social oppression, and celebrating disability culture are important points of reference in disability discourse. These three positions are referred to as the (global) medical model, the UK social barrier model, and the. US minority and cultural models (Goodley 2011, 7–17). We share Kermit's (2009) opinion when we reject the difference between Deaf and disabled people as a serious obstacle to ask about a possible Deaf gain for disability. Studying how deaf people manage between the medical, the cultural, and the disabling holds the potential for a deeper understanding of disability. Both groups also comprise similar internal differences regarding identification with the status at hand: Some deaf and disabled people think of disability or deafness as a minor component in their understanding of themselves and their public personae. Others, both among deaf and disabled people, regard deafness or disability as an important component to their self-understanding and their position in public. These opposing views are inevitable in all discussions about positions such as disability and deafness, and they have an even wider relevance. Whether one should identify, try to overcome or ignore the difference is a dilemma found in many stigmatized groups, for example in ethnic minorities and among gays and lesbians. Frequent references to coming-out processes among gays and lesbians highlight this ambivalence. Even if this paper's main goal is to illuminate a possible Deaf gain for disability, it is important to have in mind that the experiences of deaf people are relevant to the identity negotiations in a wide variety of stigmatized positions.
Studying transnational gatherings
Our discussion is based on elements of a fieldwork at two Deaflympics sports games, one world congress and one Deaf Way festival in the United States. The size of the events we visited varied. The summer Deaflympics in Rome 2001 had 4000 registered participants and spectators, and an estimated 10,000 visiting Deaf tourists. The winter Deaflympics in Sundsvall 2003 had 1000 registered participants and some tourists as well, the Deaf Way II festival had 9000 and the World Congress of the World Federation of the Deaf (WFD Congress) in Montreal 2003 had 2500 registered participants. An unknown number of tourists came to the congress sites as well.
Deaf people have established a practice of communication at transnational events, based partly on common iconographic features in different sign languages, and partly on standardized international signs based on national sign languages. Globally, American Sign Language (ASL) has a growing position as a lingua franca among many sign language users.
As the transnational community amongst Deaf people manifests itself in various places for only short periods, our research strategy has been to carry out team-based multi-sited fieldwork. Working in research teams is also identified as an important methodological strategy for building a rich body of ethnographic data when working in sign language settings (Senghas and Monaghan 2002).
The study was a joint project between two anthropologists and one sociologist; simultaneously, it was a joint project between one Deaf and two hearing researchers. This article is authored by two of the participants: a hearing sociologist and disability studies scholar with a minor disability (Solvang), and a Deaf anthropologist (Haualand)3. Our backgrounds and the issues we raise are of course not coincidental. The hearing sociologist is eager to relate the Deaf experience to disability issues. Deaf people's critical stance toward the disability label is an important contribution to the social conception of what disability is and should be. The Deaf anthropologist is eager to develop and communicate an elaborated understanding of the Deaf experience and of the inherent complexities. This difference between the two of us is closely related to our core research question: What can be learned from the complexity of Deaf space in action?
The research process consisted of interviewing informants approached at the events we visited, following-up contacts with informants by means of information and communications technologies (e-mail, Internet chat, etc.), and monitoring relevant web sites to capture how these events affected the lives of both those physically present and those physically absent. Analysis of the field notes was the starting point. A thematic ordering of the fieldwork notes emerged and analytical categories were developed. In the present article, we have picked up on these notes and categories with the aim of exploring Deaf action as a space for practice relevant to disability. Consequently, two main categories have emerged; the construction of Deaf space and the management of internal diversity. We believe this categorization, and our discussion of it, can contribute to disability discourse on accessibility and on the question concerning whether the goal of disability politics is normalization or recognizing difference.
The construction of a Deaf space
Accessibility is a key issue in disability discourse, and the wheelchair user in front of stairs is a much-used image. Such images point to a gap between what individuals are able to do and how the environment is designed. This gap goes to the core of accessibility, which can be defined as the situation when there is compliance between individual capacities and environmental demands (Iwarsson and Ståhl 2003; Lid 2010). Discussions on accessibility are often framed by the concept of universal design. Here, technological change is highlighted as the main solution to gaining access. This is a strategy with limitations, however. Attitude changes are also necessary, as well as recognizing the impairment as an intrinsic aspect to disabled people's lives. Such limitations have led Imrie and Hall (2001, 16–19) to call for inclusive design as a sounder concept. In addition to the technical aspects, inclusive design also includes the demand for an inclusive social environment. Both the supply of technical facilities and the creation of socially inclusive practises are demonstrated when Deaf people meet.
The presence of many sign language users changes the visual impression of places. The effect is especially apparent at conferences that have a clearly defined main site. In these instances, the surrounding area is full of Deaf people using sign language. Service workers, such as waiters, shop clerks and hotel personnel, begin using visual gestures and quickly pull out pens and paper. They become accustomed to Deaf people. Deaf people in turn become accustomed and begin to expect service on their own terms. Sometimes, bars and cafés can be taken over by Deaf people for a week or two. This deafening of some urban spaces was an issue reflected upon by the participants and visitors at all the gatherings we visited. The process was talked about with joy, and comparisons to previous gatherings were made.
The deafening of the public space and the emergence of inclusive practices among hearing people constitute one dimension in the construction of a Deaf space. Another dimension concerns providing excellence in communicative accessibility. One example of excellence is the use of Deaf interpreters. During plenary sessions they work with hearing interpreters in front of the stage, translating for them what is said in the oral or sign language presentation. They then add a final touch to the input given by this two-step translation. This includes the nuances and linguistic quality that only Deaf people with sign language as their mother tongue and everyday users of sign language are believed capable of performing. Asked about this arrangement, participants emphasized that they preferred to see a Deaf person perform sign language, even if it meant an additional link in the translation chain. One Deaf participant was happy to avoid ‘interpreter faces,’ referring to a perceived lesser visual quality of interpretation by hearing interpreters. The WFD Congress is understood as a space for excellence in visual communication.
Just like any other international congress or gathering, the WFD Congress draws people from different language communities and thereby presents a communications challenge. It is, however, possible that awareness of the importance of proper translation to and from different languages is higher in the Deaf community, since communication is a primary issue in Deaf politics. The congresses make great efforts to provide the best possible translation arrangements. This is foremost a practical recognition of the importance of access to information, but can also be interpreted as a part of the politics of the visual at the transnational gatherings. One participant pointed this out to us clearly: ‘Deaf people don't come to the WFD congress to have more of the frustrations they experience at home.’ Again, the congresses are understood as sites where excellence in communication and accessibility is demonstrated.
A campaign film was another example of how communicative excellence was celebrated. At every WFD Congress, the next host city is announced. At the 2003 WFD congress in Montreal, three cities presented their bid for the WFD congress 2007. The final decision was to be made by the general assembly at the end of their two-day meeting early in the congress. The candidate cities were given 15 minutes each to present their plans. To end their bid for the 2007 congress, Madrid representatives screened an animation video with a short story about a young girl and two young boys using international signing to tell people how great it would be to come to Madrid. Spectators and delegates alike responded with an ovation. Participants discussed the video throughout the congress. Signing congressional participants were enthusiastic about the visual qualities of the short film. Characters in the animation used international signs, including the crucial facial expressions that are a part of all indigenous sign languages. The film's overall quality as a cartoon animation was also superb. This gave the film high qualities that appealed to both those within and those outside the Deaf community. It was a demonstration of excellence in visual signed communication from within the Deaf community. The film was received as a demonstration of visual abilities in Deaf worlds. Madrid ultimately won the bid for the next WFD Congress. At the Montreal congress's closing ceremony, the film was screened again to new ovations from participants. It gained a high symbolic value based on its excellence as visual communication, the core of Deaf life.
The deafening of the urban space, the translation arrangements and the celebration of communicative quality all direct our attention to accessibility. The accessibility is however not directed towards accessing a hearing community, but towards communication per se. The efforts to secure accessibility should, in a such setting, not be perceived as an attempt to find ways to be integrated in a hearing society, but as a demonstration of what a Deaf-centered approach to communication may represent. Deaf people living in surroundings dominated by hearing people experience at the transnational gatherings a demonstration of how things can be. This experience can be seen as an important contribution to the ongoing work of improving one's own situation. In discussing the importance of the material structuring of how people perceive one's range of possibilities, social anthropologist Daniel Miller concludes that ‘dominated groups will tend to have some difficulty in understanding the nature of their own interests, since these are not given concrete form in the world they inhabit’ (1994, 404). The transnational gatherings provide Deaf people with such concrete forms of accessibility that demonstrate the possible.
On a personal level, returning home from the temporary Deaf community can be a challenging experience. Participants at the transnational gatherings may, upon return to their everyday dwelling place, experience a temporary identity crisis when facing the communication demands of a hearing majority after their eyes have become accustomed to an all-visual environment. The trials of everyday life are especially difficult during the first days. One begins to wonder whether home actually was in Rome or in Montreal, and whether a home comes into existence for only a few weeks every other year. Something has happened to those who were there; one has experienced a sense of community and what real communication can be. An example of behavior change at a group level is that of silent hand waving replacing sound-based hand clapping for applause during the late 1980s. This has quickly spread in the Deaf world with the participants returning home from transnational events over the years. Today, hand clapping is mainly used for applause by hearing people and groups, while hand waving is the standard applause given by Deaf people.
The management of internal diversity
Disability is about both normality and difference. The forming of organizations of disabled people highlights this issue. To some degree, disabled people come together to find ways to live as normally as possible. Medical treatment, overcoming barriers, passing unnoticed and creating strong relations with rehabilitation professionals are important tools to achieving this goal. But disabled people also come together to fight for the right to live active lives with their impairments highly present, creating powerful and positive identities and promoting personal assistance in service provision (Independent Living) (Shakespeare 1996; Helgøy, Ravneberg, and Solvang 2003; Grue 2009). The question of normality or difference is also highlighted by the question of cure. The search for cure is the main question for many disabled people, typically those who experience the onset of a disabling condition in late childhood or adult life. Others, typically people born with their disability, point out the search for cure as a threat to the self-respect of disabled people. They are not good enough until they are cured. A puzzling question concerns what happens to disabled people when they are offered a cure and accept it. Are they still insiders, or do they become outsiders? (Beauchamp-Pryor 2011). These issues of normality or difference are highly present at transnational gatherings.
When the highly diverse transnational community of the Deaf meet, confrontations are inevitable. Both signing Deaf people celebrating the Deaf way of living and deaf people searching for normalization and cure are present. But we believe that the Deaf experience demonstrates that these are not opposing positions, but rather zones of tensions that reflect the changing conceptions of what it is to be Deaf or disabled, or both. Such zones of tension become visible at the gatherings. One arena is the sports games, where conflicts on oralism and hearing aids instigate important debates about the gatherings as sites for inclusion or exclusion of different ways of being Deaf.
For example, during a soccer match it became necessary for a player to remove a hearing aid, and by this act, the player also revealed that he had worn one after the match had started. The referee's reaction was sharp. Wearing a hearing aid was considered illegal; the game was stopped, and the other team was awarded the victory. Two circumstances seemed responsible for the reaction. First, to be eligible to participate, a person must have suffered a hearing loss of at least 55dB. Yet, and equally importantly, hearing aids also symbolize a rapprochement with the hearing world, which in some contexts can be relevant. However, at an event for deaf people only, which is carried out on Deaf people's own terms and is intended to strengthen the solidarity of sign language users, hearing aids are problematic symbols. This is also the case with oral communication, as was most clearly demonstrated at the winter Deaflympics in Sundsvall. Participants and spectators had observed that US hockey players did not use sign language among themselves, and that the team thus displayed a quite oral public image. In a match between the US team and Finland, a huge, easily visible banner was hung, declaring: ‘Orals don't belong here! ASL does!’ Heated arguing started beneath the banner, and it was removed. One of the initiators of hanging the banner expressed disappointment: ‘Why do they react with censorship?’ We asked him about the motives for hanging the banner.
The match started but the commotion continued. The spectators struck up conversations and made statements on the present match as a confrontation between oralism and sign language, not as a game between Finland and the United States. This struggle was not confined to the grandstands, as we witnessed that several Finnish players employed ‘signs of abuse’ towards their opponents, with unconcealed references to their oral orientation.
Dammit! Deaflympics is more than sports; it is Deaf culture and social life, and sign language! There were many of us from Sweden and Finland, and also a few Americans and others, who reacted to the behavior of the American ice hockey team; they only communicated verbally. Well, this is OK if it is occasional and just a few doing so. On the basketball team, where I am involved, for instance, we have seven or eight players who use sign language, and then there are a few that mostly talk. But in the sports arena, everything is communicated in sign language, and SDI [the Swedish Deaf sports organization] supports sign language. This seems not to be the case with the Americans; no one masters sign language on their team.
The ice hockey match became a condensed duel over core Deaf values. The reactions during and after this intense incident were interestingly mixed. Some held that this could lead potential ASL users on the American team to take on an even more confrontational stance against Deaf culture, and hence be counterproductive. A representative of International Committee of Sports for the Deaf CISS displayed a strong distaste for such manifestations. The bottom line of this argument was that such protests frighten away potential sign language users among the oral method users, and that the Deaflympics always have been an arena for recruiting new signers. Others, without positions in CISS, were more supportive, and argued that taking a clear stance on this issue would strengthen the global signing community, and that since the conflict is unresolved, it would be cowardly not to pursue the arguments. Hearing Americans on the shuttle bus the day after discussed the case with much nuance. They understood the protest, but felt nevertheless that it was unfair to target the players. ‘They were simply picked out for the team,’ it was said.
As we learn from the sports games, more than one voice is introduced about what Deaf issues and Deaf life style are about, even if the Deaf culture perspective is predominant. This was also the case with the WFD congresses. We saw at the world congress in Montreal three types of presentations. First, one finds the political presentations given by Deaf people. They encourage the struggle against oralism and medical rehabilitation, and support sign language communities as the superior working solution for deaf people. The second are the linguistics- or social science-based presentations. These are held by both Deaf and hearing people. They have to a great extent a normative position that is merging with other minority-language projects. In some of these presentations, Deaf and disabled people are viewed within the context of a broad formation of the sort that a lecturer at the World Congress in Montreal designated ‘equality seeking groups,’ and where Deaf people primarily perceive themselves as a minority with sign language communication as the common denominator. The third group of presentations is of a professional social-service genre, which to a lesser extent represents an explicit minority orientation. This group finds itself in a problematic situation in the congressional context. Tensions arise, both when there are presentations about social treatment programmes directed at deaf people and when there are hearing social-service professionals present who believe they possess a professional authority to advise deaf people about what is best for them. In these presentations, deaf people are accentuated as clients with an accompanying expert profession, a construction representing the core of the welfare state's construct of the disabled.
The relation to professionals is a core issue in disability discourse. A highly critical position is to look at professionals as parasites living off disabled people's lives. Others call for the need to ‘find ways of working to improve the relationship between disabled people and the professionals who are meant to serve them’ (Shakespeare 2006, 192). One way is to make a move from professionals allied with medicine to professionals allied with the community. To be allied with the community means to be truly immersed in disability culture and to pay more attention to fighting discrimination at the cost of pathological views on impairment (Goodley 2011, 172–174). We believe that the two ways that professionals are included in the Deaf gatherings demonstrate the creation of innovative spaces for professional involvement. First, the presentation of papers by professionals takes place in a setting where the majority is Deaf. Second, the professional role of the interpreter is framed by the understanding of deafness as a culturally significant difference. Taken together, these create professional roles where the alliances to the Deaf community are strengthened.
The relevance of the Deaf experience for disability discourse
Nation-states tend to present disability issues as a strategic instrument when positioning themselves as human rights orientated and when developing valuable social reform policies. In a discussion critical of this practice, Kim (2011) states:
For example, she refers to a group of Indian Deaf women responding to the promise of cure from a national official at a congress. They told Kim and the others present that they themselves wanted Deaf babies; they even wanted more Deaf babies born into society also by hearing mothers. Kim interprets the women's action as a use of playfulness to open the space for imagination. How much playfulness was involved in this case can be disputed. But our main point is that in addition to self-representations of disabled people around the world, it is important also to learn from the experiences of Deaf (and disabled) people meeting in transnational contexts. The transnational meeting places provide arenas where images of accessibility, ambiguous identities and tensions between different ways of being deaf (and disabled) are present.
A transnational approach to the human rights of people with disabilities should resist static and timeless generalizations about nation states solely based on their policy implementations; instead make connections among diverse, imaginative, conflicting, and ambiguous self-representations of disabled people around the world. (104)
Common to the categories that have emerged in our analysis of key issues at the gatherings is a thoroughgoing dual structure. On one hand, there were clear protests against and discussions about what is defined as the other, the normalizing ways of being deaf. On the other hand, we experienced demonstrations of Deaf visual culture, and of the importance of high quality communication and of inclusion of different language groups. In the identity formations taking place we can conclude that both difference and sameness are simultaneously enacted (Ghorashi 2004). The boundaries toward orally communicating deaf are held, conflict zones are negotiated and the unifying forces of sign language practice and high-quality communication are nourished.
The demonstration of accessibility in Deaf worlds demonstrates how problematic demands on individuals striving for normality can be met. The process of inclusion highlights how a focus on accessibility can contain possibilities of living as differently abled, both by hearing people, such as the waiters and shop assistants located close to the sites, and by deaf people, such as the translation arrangements provided by the organizers. The hearing service providers do not learn sign language to the full, a utopian goal in their position. What they do is to demonstrate eagerness to accommodate. The repeated occasions of such eagerness to accommodate for difference in communication modes are celebrated and perceived as inspirational among the deaf. Such occasions strengthens their belief in the possibilities of making things happen in the direction of higher accessibility.
A challenging side to Deaf identification is the establishment of a correct kind of life as Deaf. This implies an opposed deviant kind of deaf life. Pushed to the extremes, the right way to be Deaf is to accept deafness, use sign language, refrain from using hearing aids and to spend time on Deaf culture and on special interest politics. The deaf who want to try to function in the hearing world, to try out the possibilities of oral communication and hearing aids are deemed wrong. They represent a compromise identity that is potentially harmful to the psychological wellbeing of deaf people. This conventional dichotomy of good and bad stands in the way of more complex ways of handling d/Deaf life. There is more to the d/Deaf experience than simply deciding between difference and normalization. The complexity echoes that identity is far from conflict free, which has led the sociologist Zygmunt Bauman to conclude about identity that ‘Whenever you hear that word, you can be sure there is a battle going on’ (2004, 77). Identity is an arena for conflicting interests, an arena for politics.
Deaf people are both a disabled and a linguistic minority. In their work for improving Deaf people's lives worldwide, World Federation of the Deaf is involved in both the UN disability forums (especially work related to the Convention on the Rights of People with Disabilities) and the UN Forum on Minority Issues (Haualand and Allen 2009). As outlined in the introduction, this double identification makes the Deaf experience an important arena for new perspectives on disability.
A strong criticism of identity politics in disability worlds has been raised by the British sociologist Tom Shakespeare. He talks about the ‘prison of identity politics which leads to the politics of victimhood and celebration of failure’ (2006, 82). He believes the goal of disability politics should be to make disability as irrelevant as possible and to avoid ethnic conceptions of disability identity. Shakespeare, as well as other critics, often point out that Deaf people's position is of limited relevance to inform the understanding of disability because of the peculiar situation sign language has as a strong unifying force. We agree with such critics, but argue, for two reasons, that the Deaf transnational gathering experiences are relevant to the disability discourse. First, Deaf people have a long tradition in fighting oppression and of being labeled as bearers of pathological bodies. This is a unifying factor for Deaf politics and disability politics. Second, identity politics at the global Deaf events do not necessarily imply that all deaf people worldwide would unite in strong separatist Diasporas. What is experienced at the gatherings is brought into the everyday life settings of Deaf people and becomes included in the complex social interaction of deafness (and disability), a perspective in line with Shakespeare's multidimensional notion of what characterizes the better future for disability studies (Shakespeare 2006, 81). Building on a critical realist position as outlined by Danermark and Gellerstedt, he emphasizes that disability cannot be understood solely by cultural, socio-economic, or biological mechanisms. According to Shakespeare, such reductionisms must be avoided. We believe the deaf gatherings represent an anti-reductionist interaction between the different conceptions of being deaf and/or disabled. The gatherings represent cultural processes of great inspirational value for fighting disabling socio-economic processes and lack of cultural recognition. And finally, the gatherings are also a meeting place between Deaf people and normalisation oriented orally communicating deaf, and professionals educated and working in settings were biological mechanisms involved in deafness are prominent.
Like (other) people with disabilities, most deaf people are not born into a family sharing their experience of being Deaf. This puts Deaf identification and forming of collectives in a fragile position. The status as Deaf is something that must be achieved. It is a fragile state of being which is threatened, contested and often de-legitimated from the outside (the hearing majority) and to some extent from within. It is, hence, a position that must be recognized by significant others in order to find merit. It must be enacted, and is safeguarded only in temporal and situational terms. The enactment, to an increasing extent, is done at translocal and transnational gatherings and crossroads. Enactment and recognition are further dependent on the embodiment of a specific orientation in the world (the bodily incorporated visual-spatial-corporal language: sign language). This embodiment is not necessarily something that has to be fully incorporated ‘before’ performing; rather, it is a work in progress, something ‘performatively produced’ (Bell 1999) and reproduced. Some aspects of this production of Deafness in transnational settings have been outlined in this article. Even if events such as the WFD congresses allow participants, often unconsciously, to participate in a play world of Deaf people, they create important arenas for practice. This practice facilitates discussions and releases energies when Deaf people return to their permanent homes. How this effect is manifested will of course differ according to setting. Some deaf people live in sign language settings; others do not. But the experience of accessibility and unity is important to how Deaf lives are lived worldwide.
However, although we argue that the Deaf experience should be seen as relevant for the disability discourse, we also recognize that the disability discourse alone is not sufficient to frame Deaf identity politics. This position is also reflected by Emery (2009) in his critique of Kymlicka, who considers Deaf people as representative of a disabled group: ‘Tying Deaf communities to the disability matrix neglects potential ways Deaf citizens may enjoy a route to equal citizenship that they believe is most appropriate and rational’ (33). Deaf identity politics is not only about fighting oppression based on ideas of defects or about uniting in separate Deaf and visual identity units. The distinct common languages and cultural heritage based on using sign language also mark Deaf people as a linguistic minority, with strong common interests with movements of other linguistic minorities and indigenous people worldwide. This reflection resonates well with our intention in this article. We do not argue that the deaf are primarily disabled. What we highlight, inspired by the historical link between deafness and disability, is the relevance of Deaf people's experiences for disabled people's coming together and articulating common interests. Deaf people's experiences are relevant to other groups, both those sharing a minority language, such as many indigenous people, and those, such as gays and lesbians, being born into a family of others. In line with scholars arguing that our fragile bodies make disability a universal issue (Davis 2003, 9–32), the visual qualities of Deaf culture may also have a universal potential. The Deaf spaces constructed around the congress sites demonstrate an ability to waken slumbering abilities of visual communication among all people eager to communicate.