UNIVERSIDAD PABLO DE OLAVIDE FACULTAD DE HUMANIDADES
Trabajo Fin de Grado Grado en Humanidades Curso 2013/2014
Sexual lifeways and (dis)ability from a queer/crip approach. Anthropological hints from a fieldwork in Greece
Amaranta Heredia Jaén Dirigido por D. Alberto del Campo Tejedor
Convocatoria de junio
Contents
FOREPLAY ................................................................................................................... 3 Introduction ................................................................................................................... 4 PART I: THEORETICAL FRAME ............................................................................... 5 1. What is disability? Social model of disability ........................................................... 5 2. Why is sexuality important for the configuration of the political self? Sexuality and stigma............................................................................................................................. 6 3. Sexual variety and group ........................................................................................... 9 4. What is queer theory? From queer theory to queer approaches .............................. 11 4.1 Criticism to queer theories ....................................................................................................... 13
5. What is crip theory?................................................................................................. 14 6. Disabled and Queer identities: analogies, similarities and differences ................... 16 7. Stigma. Passing and coming out. Self and identity ................................................. 18 7.1 Stigma ....................................................................................................................................... 18 7.2 Passing ..................................................................................................................................... 20 7.3 Coming out ............................................................................................................................... 20 7.4 Is identity always visible? Passing VS coming out as strategies ............................................. 21 7.5 Self and identity. Sexual lifeways ............................................................................................. 21
8. Anthropological frame ............................................................................................. 23 8.1 Why Anthropology? .................................................................................................................. 23 8.2 What type of Anthropology? Action Anthropology and neutrality ........................................... 23 8.3 Interpretative anthropology, thick description and clinical ethnography ............................... 24 8.4 The role of the anthropologist .................................................................................................. 25 8.5 Sexing the anthropologist ......................................................................................................... 25
PART II: FIELD WORK ............................................................................................. 27 9. Goals ........................................................................................................................ 27 10. Methodology.......................................................................................................... 27 10.1 Sources ................................................................................................................................... 27 10.2 Group...................................................................................................................................... 28 10.3 Challenges .............................................................................................................................. 30
11. Crip hints ............................................................................................................... 33 11.1 The soul and the body............................................................................................................. 33 1
10.2 The slut and the asexual. The married and the spinster ......................................................... 34 11.3 The nice smile ......................................................................................................................... 38 11.4 The crippled caveman and the feminization of disability ....................................................... 39 11.5 The vicious circle.................................................................................................................... 42 11.6 “I see you as a friend” and the obligatory nature of sameness ............................................. 42 11.7 “We have normal sex” ........................................................................................................... 45 11.8 The representation of (crip) sex: I’m gonna crip sex ............................................................. 47
12. And now, what? Possible research questions and art projects .............................. 49 13. Conclusions ........................................................................................................... 51 14. Works cited ............................................................................................................ 53 14.1 Videos ..................................................................................................................................... 57
15. Attachments ........................................................................................................... 58 Attachment I ................................................................................................................................... 58
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FOREPLAY Who am I? ¿Quién soy? Ποια είμαι; I was born in the south of Spain in a low-middle class family. I am supposed to be white, but my skin is tanned also in winter. My mother tongue is Spanish. But sometimes I think in English and I curse in Greek. Society sees me as a woman (but I am still uncertain what that means). I like women. I have been in love with an older man and with a younger woman. I am sure I am not straight. I do not want to be straight. I am queer. As impairments I can mention my short-sightedness and my flat feet, but society does not consider them disabilities. I do not take able-bodiness as granted and find beauty in all kinds of bodies. I am crip. The personal is not only political, but it affects the works we produce. I do not believe humans produce (or live) objectively —neither art nor science. I do not consider this to be irremediably fatal and I think there is still space for knowledge and learning within our limitations.
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Introduction The purpose of this research is to contribute to the emergence of a new body of studies —crip theories— that is born mainly from the many intersections of queer theories and disability studies. It does not put forward a new theory, thesis or hypothesis. This research project aims to lay the foundations for further research in the field —my own or others’. The desire that drives me is not only academic, but also the hope that these insights may have a positive impact in things such as education initiatives, art projects or social welfare policies. It starts with a theoretical framework in which the state of the art is reviewed, followed by a fieldwork that proposes some questions deserving attention. The purpose of the theoretical frame is not only to provide certain basic tools for the understanding of the fieldwork and the research project, but also to analyze the starting points of this endeavor. As Plummer clearly phrases: “Gone are the days when social scientists could research as if they were simply neutral, objective, value-free students with neither meta assumptions informing their studies nor social consequences arising from them” (Plummer 1984, 221). This means that our assumptions and meta-assumptions affect our work in a significant way. The fieldwork was undertaken in Thessaloniki, Greece, during the second semester of the academic year 2013-2014, i.e. January-May of 2014. It was carried out mainly in Greek, as my command of the language made others feel more comfortable than using English. This brought both advantages and disadvantages, as it will be argued later. The fieldwork was facilitated by the interaction with people with disability and queer individuals and communities in the urban space. We shall never loose sight of the fact that anthropology writings are “fictions, in the sense that they are ‘something made’, ‘something fashioned’ —the original meaning of fictiō— not that they are false, un-factual, or merely ‘as if’ thought experiments” (Geertz 1973, 16). As with any translation, regardless of its wonderful quality, it will never amount to the ‘truth’ many people are looking for. Nevertheless, as a fiction, it opens an access to reality that crude reality may fail to offer. Here lies its deepest weakness and its most powerful strength.
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PART I: THEORETICAL FRAME 1. What is disability? Social model of disability As any other term, disability can be defined in a variety of ways. The definition we give to it may both indicate where we stand in relation to the topic and influence any further development of our ideas. First of all, a distinction between impairment and disability1 was judged necessary a long time ago, leading to the following definitions by the World Health Organization (WHO) in 1980 (quoted in Oliver 1996, 2): IMPAIRMENT: In the context of health experience, an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function. DISABILITY: In the context of health experience, a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. These definitions help sustain a model in which there is a casual relationship between the terms, that is to say, that an impairment produces a disability. This model has been called the individual model of disability and “[f]irstly, it locates the ‘problem’ of disability within the individual and secondly it sees the causes of this problem as stemming from the functional limitations or psychological losses which are assumed to arise from disability” (Oliver 1996, 2-3). Confronting this model, the social model of disability was born in the 80s. This model is based on very different definitions of the terms ‘impairment’ and ‘disability’ and it was shaped by —and not only for— impaired and disabled people themselves. The following definitions belong to the Disabled People’s International (DPI) (quoted in Oliver 1996, 3): IMPAIRMENT: is the functional limitation within the individual caused by physical, mental or sensory impairment. DISABILITY: is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers. The social model of disability was first shaped by Mike Oliver in 1990 and it states that “[i]t is not individual limitations, of whatever kind, which are the cause of the problem but society's failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organisation” (Oliver 1990, 3). Therefore, it destroys the casual relationship 1
However, not even in disability studies and disability culture are the terms used conscientiously. Also, some languages do not have this distinction of terms or rarely apply it. Disability should be understood as an umbrella term that very often comprises impairment.
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between impairment and disability, and it focuses on the social and political challenges that must be faced by the “political empowerment of disabled people as a group” (Oliver 1990, 5). This model of disability derives from Marxist thought in that it assumes that “oppression is ultimately due to [disabled people’s] continued exclusion from the processes of production” (Oliver 1996, 13) and in that it represents “a pragmatic attempt to identify and address issues that can be changed through collective action rather than medical or other professional treatment” (Oliver 1996, 11). However, both models aim to what could be called the ‘restoration of normality’ —both medical and social normality— and have been recently faced by approaches that focus on the celebration of difference and the building of a culture of disability based upon pride (Oliver 1996, 6). In this new paradigm, which is directly related to crip theory and that will be developed further on, a new definition of disability may be convenient. The Union of the Physically Impaired Against Segregation issued this definition already in 1976 (quoted in Oliver 1996, 7): DISABILITY: the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities. Since it was first developed, the social model of disability has been subjected to criticism from different fronts. It is internally criticized mainly by its failure to address the pain of impairment and its interrelation with other forms of oppression (sexism, racism and homophobia, for example). Nevertheless, this criticism has been contested. Firstly, the social model of disability chooses to focus on the collective experience of disability rather than on the segregating experience of impairment. Secondly, the lack of explicit address to multiple or simultaneous forms of oppression simply shows that such issues are recently beginning to be explored. Finally, it must be accepted as necessary and not necessarily a flaw the fact that no theory or model can explain disability —or any other question— in its totality. The understanding of the social model of disability and its implications is essential to this work, since it will be argued that stigma and identity are concepts that arise from social interaction within a given society, its values and categorizations.
2. Why is sexuality important for the configuration of the political self? Sexuality and stigma First of all, it is necessary to cast aside the axiom of sexual essentialism that is “the idea that sex is a natural force that exists prior to social life and shapes institutions” (Rubin 1984, 149) and therefore sex is thought to be “eternally unchanging, asocial, and transhistorical” (Rubin 1984, 149). This 6
research has been developed under the assumption that “specific forms of sexuality emerge under specific economic, religious, kinship and cultural conditions” (Plummer 1984, 223). Sex is not merely a property of individuals, but “as much a human product as are diets, methods of transportation, systems of etiquette, forms of labor, types of entertainment, processes of production, and modes of oppression” (Rubin 1984, 149). Sexuality is in fact “more of a shared project between culture and individual development” (Herdt, 1999). That is not to say that there may not be biological underpinnings, but those say little about the social and political nature of sex. In a beautiful metaphor of evolutionary resonance, Rubin states: “The belly’s hunger gives no clues as to the complexities of cuisine” (Rubin 1984, 149), in other words: although biologically based,2 sexuality among humans “is grounded upon diverse, historically changing cultures, and, concomitantly, symbolism and language” (Plummer 1984, 222). However, as Goffman pointed out, “before a difference can matter much it must be conceptualized collectively by the society” (Goffman 1963, 123). No other personal preference is taken so seriously as sex in a culture: “A person is not considered immoral, is not sent to prison, and is not expelled from her or his family, for enjoying spicy cuisine” (Rubin 1984, 171). We need to develop a pluralistic sexual ethics based on the concept of benign sexual variation (Rubin 1984, 153) that allows us to understand different sexual cultures and to profit from what we may learn from them. The frame of Rubin’s radical theory of sex —based on Foucault— seems most appropriate for this research, as its aim is to “build rich descriptions of sexuality as it exists in society and history” (Rubin 1984, 149). It tries to develop a pluralistic sexual ethics by fighting against some of the axioms that pervade society. The first of these axioms is sexual essentialism, which has already been mentioned. The other axioms are sex negativity, the fallacy of misplaced scale, the hierarchical valuation of sex acts, the domino theory of sexual peril, and the lack of a concept of benign sexual variation (see Rubin 1984, 149-155). This research embodies “a point of view which acknowledges that diversity of cultural experience [therefore, including sexuality] is a central characteristic of human beings” (Plummer 1984, 228). Nevertheless, most systems of thought about sex —whether religious, psychopathological, or
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Yes, biology and genetics influence individual experience and development, but the extent to which they affect us has been broadly discussed. The nature-versus-nurture debate (or, very often, war) has also affected sexuality studies and is an endlessly discussed topic that is enriched with every new discovery and development (in neuroscience, genetics, philosophy and other fields). Like Plummer, I do believe biology is very important, “but not as important for human life as the symbolic” (Plummer 1984, 246, note 3; original emphasis). However, admitting the influence of biology on human sexuality is not tantamount to asserting its capacity to ordain biological entities (Rubin 1984, 149), since this approach would invalidate every analysis of the politics of race, disability, sex or gender. “[H]uman sexuality is not comprehensible in purely biological terms” (Rubin 1984, 149) because our understanding of it is mainly based on social constructs.
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feminist— are characterized by the notion of a single ideal and deny the benefits of sexual variation (Rubin 1984, 154). In the sexual value system develop by Gayle Rubin, sexuality that is ‘good’, ‘normal’, and ‘natural’ should ideally be heterosexual, marital, monogamous, reproductive, and non-commercial. It should be coupled, relational, within the same generation, and occur at home. It should not involve pornography, fetish objects, sex toys of any sort, or roles other than male and female (Rubin 1984, 152). This system evolves from the idea that sex is for the reproduction of the species and, therefore, “the ideal form of sexuality must be heterosexual coitus in which the male must be sufficiently aroused to penetrate and the woman must be capable of at least bearing the child (usually raising it too)” (Plummer 1984, 226). Any practice that crosses this imaginary —but often of very palpable consequences— line falls into the realm of the unacceptable. This ‘crossing’, however, is not always categorical, as there are different levels of acceptance —or unacceptance. For example, a same-sex couple that marries — better even if it is in the church—, is monogamous and has children will be much easily accepted by society, since it approaches its mainstream values. Notwithstanding, it is interesting to note that Rubin does not even mention another vector: sex must be able-bodied and able-minded. Could this be because disabled sex is not regarded as unacceptable but rather inexistent by most sectors of society (in which academics are of course included)? Sex, therefore, clearly works as one vector of oppression, and a very powerful one. It has been argued that oppression has become much less rigid in the ways it is reproduced in an era that is “characterized by more global inequality and raw exploitation” (McRuer 2006, 3). This oppression originates from the fact that “these bodies do not fulfill the standards of productivity and functional autonomy that are required by our society, which has established productive work as the main means of accessing independence and citizenship” (Gúzman and Platero 2012, 2; my translation). Sexual discrimination often works in combination with other modes of social inequality, such as racism, classism, and ableism, shaping a complex hierarchy or stratification in which individuals have to fight different stigmas at the same time. Forms of non-dominant sexualities —those that are on the other side of the ‘line’— are “depicted as a uniformly bad experience” (Rubin 1984, 152) and denied nuances and subtleties. Similarly, disabled individuals are repeatedly represented as asexual, but, when represented as sexual, their depicted sexuality lacks the variations and subtleties that are granted to the sexuality of other individuals.
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3. Sexual variety and group Wanting to depart from binary definitions —that started its theoretical breakdown in the academic world at least since the works of Kinsey (1948)—, my first goal was to find “non-heterosexual people” and so I explained it to contacts and potential informants. Of course, every person who heard this interpreted it in a different way. This category includes people who personally selfidentify as such and people that, although refusing to carry any label regarding their sexuality —and not only sexual orientation— (therefore, people who we could ironically be labeled as queer), are perceived by society as other than straight. Although queer has theoretically been developed as an anti-identitarian position, it has also been largely used by LGTB groups as a term to name a new form of identity. Proof of this is that many of these groups have recently changed their denominations into LGTBQ, which stands for lesbian, gay, trans (transsexual and/or transgender), bisexual and queer. During my stay in Greece, I came into contact with the members of an anticapitalist queer group3 that distinguished between the terms —and identities— ‘straight’ and ‘heterosexual’4. This distinction —which it is useful but I choose not to follow in my research— arose from the affirmation that they were not straight-friendly in their parties, but had no problems with heterosexual people attending. For them, a straight person is not only one that has sex with those of the opposite sex/gender, but someone who regards this as the only right way to be, scorns other options and behaves in a sexist way. It is the transformation of a sexual orientation or sexual identity into “normative expectations, into righteously presented demands” (Goffman 1963, 2). Being heterosexual, on the contrary, is just a preference —which can, of course, change over time and place— that states nothing about the “rightness” of such a choice. Many efforts are being done nowadays in order to bring us to rethink these binary and classificatory logics that are still embedded in Western thought,5 from old medical theories about hysterics to 3
Masqueerraid is an anti-hetero-normative group active in Thessaloniki from the summer of 2011. It is based on the principles of anti-patriarchy, anti-capitalism, anti-mercantilism, anti-discrimination, anti-institutionalism, anti-mass media and anti-fascism. It is formed by young Greek people of different sexual orientations and identities. It organizes parties and is about to open a self-managed queer στέκι (social center) in the city, in which different LGTBQI events will be held. For its public profile, see , but since it is not a political group or an NGO, it provides little useful information in regard to its embodiment in the city life and the LGTBQ subculture. 4
This distinction should be understood as their own, and not as a formal, etymological or historical distinction. Neither do I follow it. The 6th of May 2014, in a text that they published on their blog in relation to a concert that had taken place in Thessaloniki two months earlier and that they considered homophobic and sexist, they declare: And we should not be misunderstood, we do not equate straight and heterosexual sexuality. To the contrary, we consider it a clear political position and a deliberate advocacy of hetero-normativity. (massqueerraid 2014) 5
Although it has been demonstrated that these classificatory logics are not exclusive of Western thought, this research works within the limits of a Western understanding.
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many recent LGTB studies. Among these efforts I would highlight three, two especially appealing because of their artistic and public nature and one due to its mass media impact —as articles in scientific journals very rarely change individual’s perceptions in everyday life or they do so at a very slow pace. Self Evident Truths6 is photographer iO Tillett Wright’s project to show that non-heterosexual people do not look “a certain way”, but that there is a huge variety of appearances. “My aim is to take a simple portrait of anyone who’s anything other than 100 percent straight or feels like they fall in the LGBTQ spectrum in any way” (iO Tillett Wright 2012). Using a 1 to 100 self-applied scale of ‘gayness’, she challenges the construction of binary categories. On the other hand, the also photographer Sarah Deragon tries to show the diversity of appearances and categories with a project called The Identity Project,7 which allows individuals to self-identify themselves, moving from categories into descriptions such as “daddy femme dyke dom queen” or “queer femme tomboy switch”. The third initiative is Facebook’s decision to incorporate 56 new gender categories for its US users —among which we can mention ‘agender’, ‘genderqueer’, ‘two-spirit’ or ‘cisgender’ (Sederholm 2014). This way of escaping binarism through over-categorization is an interesting phenomenom that contains different risks, but it cannot be discussed within the frame of this research. As Goffman clearly stated, “before a difference can matter much it must be conceptualized collectively by the society” (Goffman 1963, 123). By breaking these constructed concepts, we are aiming at change. Much was done in the past in order to show how ‘normal’ was the different. The new approach that both queer and crip theories propose is not only the acceptance, but also the celebration of difference. Having this into account, I am aware that a thorough research cannot dismiss self-identified heterosexual participants, as their definition of sexual orientation is part of the continuum and helps explain the rest of the categories and practices. Also, by definition, crip identity cannot be straight, as disabled people often fail to embody the hetero-normative model and those who embrace a crip identity refuse to even try.
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For more information about the project, check .
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For more information about the project, check
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4. What is queer theory? From queer theory to queer approaches “Queer theory is often [very] difficult to read (and write)” (Giffney 2009), but it can offer some interesting insights and viewpoints for the present research. From the reading of some authors, some relevant ideas have been selected which will be below presented. Here we have our starting point: queer theory is not really a theory. Queer identity is a contradiction on its own terms. These three statements need some explanation. First of all, if queer is not a theory, what is it? Does queer refer to a category, an anti-identitarian position, a politics, a methodology or an academic discipline (Giffney 2009)? I would argue that, rather than a theory, queer is an approach, and a very useful one. The queer statement creates a space for reflection. It demands self-reflexivity and personal engagement. It refers beyond and outside of itself. It is a question without a question mark. (Giffney 2009) Queer theory is, simultaneously, both a mode of questioning about reality and a self-reflexive process of the interrogative thinking (Giffney 2009) and as such shares a lot with the anthropological approach to reality. Secondly, questions arise regarding the multiplicity of queer. Is there a queer theory or many diverse and overlapping queer theories? Could this multiplicity be regarded more appropriately as a paradigm in Kuhn’s terms, i.e. “universally8 recognized scientific achievements that, for a time, provide model problems and solutions for a community of practitioners” (Kuhn 1962, 10)? One way or another, this plurality of the queer approach is core to its birth. Queer theories stand in direct continuity with critical social theory and the need to reform or transform the lesbian and gay movements and their approach to identity. This could be interpreted as a breakthrough or “paradigm shift” in Kuhn’s terms, since queer theories were linked in origin with the lesbian and gay movements. The lesbian and gay movement, also referred as the gay liberationist approach, “often took this category of ‘[gay] identity’ itself as unproblematic and unhistorical” (Pickett 2011). It also defined gay identity based on the homo/hetero binary and “left little room for identities, desires, practices and relationships that fell in between or outside of such categories, or challenged the premise upon which those identities were formulated” (Giffney 2009), such as sadomasochists, transsexuals, intersexuals, bisexuals, butch/butch lesbian couples, non-monogamous relationships, and a long etcetera. Queer theory takes for granted “that sexuality is socially constructed, rather than given by nature” (Pickett 2011) and that “all sexual understandings are constructed within and mediated by cultural 8
‘Universally’ here must be understood within its specific field of studies.
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understandings” (Pickett 2011), revealing a social constructivist understanding of reality. Within this frame of thought, “[t]he binary oppositions (man/woman, gay/straight) on which discourse, and thus subjectivity, are founded are revealed to be not fixed, but fluid, fictional – and can, therefore, be destabilised” (Hanman 2013). Queer theories criticizes not only hetero-normativity, but also lesbian and gay assimilationism to the so-called hetero-norm (marriage, fidelity, etc.) and homonormativity, that is the creation of certain rigid models of interaction and identity. The application of social constructivism to sexuality was made possible, among others, by two key developments: the historical study of sexuality —with the works of Foucault— and the incorporation of anthropological data from non-Western traditions. We can see nowadays some changes prompted by queer theories within (but not only) the lesbian and gay communities, as these have progressively started to change the way in which they see and define themselves. Therefore, most organizations now describe themselves as LGTB (standing for lesbian, gay, trans and bisexual) or even better as LGTBQI (where ‘q’ stands for queer and ‘i’ for intersexual), even if they do not have members who belong to such categories. Therefore, the queer approach represents a stance against the exclusion of the other to which identity-based movements necessarily lead and has suggested a move towards “issue-based coalitional activism” (Giffney 2009), whether a group of people, regardless of their identities, fight for common goals. But one of the three questions still remains: can queer be an identity for someone? It has been argued that “queer is a ‘doing’ rather than a ‘being’” (Giffney 2009) and the queer approach has, since its difficult-to-date birth, challenged the essentialist approach of the gay liberationist movement, allowing in its endeavor more freedom for self-identification (Pickett 2011) or the refusal of such categorizations. Queer is more often embraced to point to fluidity in identity, recognising identity as a historically-contingent and socially-constructed fiction that prescribes and proscribes against certain feelings and actions. It signifies the messiness of identity, the fact that desire and thus desiring subjects cannot be placed into discrete identity categories, which remain static for the duration of people’s lives. Queer thus denotes a resistance to identity categories or easy categorisation, marking a disidentification from the rigidity with which identity categories continue to be enforced and from beliefs that such categories are immovable. (Giffney 2009) ‘Queer’, it is argued, does not refer to an essence, but instead it is “purely relational, standing as an undefined term that gets its meaning precisely by being that which is outside of the norm, however that norm itself may be defined” (Pickett 2011). As Halperin puts it: “Queer is… whatever is at odds with the normal, the legitimate, the dominant. There is nothing in particular to which it 12
necessarily refers. It is an identity without an essence” (quoted in Pickett 2011, original emphasis). This having been said, I differ with a couple of points of these explanations. In the first place, the term is not undefined, as listing what something ‘is not’ is a way of defining —although a less restrictive one. On the other hand, given the danger of talking about essence in anthropology, Herdt’s concept of sexual lifeway is of extreme usefulness [see section 7.5]. For the moment, however, Giffney’s vision can set us on the right path. The queer approach focuses, therefore, on transgression, radicalism, inclusion and difference (Giffney 2009). It is an identity still under construction, which tries really hard to question prior concepts of sexual identity. Because of all these characteristics, queer theory constitutes a very interesting approach for anthropological research, and especially for that part of ethnography that studies diverse sexualities and identities. 4.1 Criticism to queer theories Queer theory has been criticized from outside and within the LGTB studies, in the heart of which queer theory was first developed. Giffney and Pickett summarize some of this criticism. It has been pointed that queer theories fail to deal adequately with how sexuality and gender intersect with other facets of our identities: race, ethnicity, legal status, (dis)ability, age, class, and religious affiliation. This was a criticism also made to gay and lesbian studies, and new academic research has since tried to address these issues. This work is a clear example of these attempts to overcome the ‘failure of intersectionality’, addressing not only queer theories, but also disability studies and the recently coined crip theory. Queer theorists have been criticized for producing its own norms and exclusions. For example, they have been accused of creating a new taxonomy that would classify people in the categories of ‘assimilationist’ and ‘resistant’ in relationship with hetero-normative norms and therefore reinforcing the tendency towards insider/outsider politics (Herdt and Hostetler 1998, 260). They have also been accused of being elitist and class-biased (Malinowitz in Pickett 2011), as well as of being a new type of neocolonialism, a theory that is produced only in certain developed countries and then exported to the rest. The difficulty of queer theory discourse is automatically apparent to most readers. In this work, however, a conscious intent has been made so that it is accessible, because the complexity, interest and novelty of ideas cannot justify their obscurity, which normally poses problems for their diffusion and their application into actions, policies, and social and personal change. The overcoming of these criticisms and the creation of new approaches and insights will only enrich our understanding of human diversity and experience. 13
5. What is crip theory? A crip theory of sexuality thinks and rethinks sex (McRuer 2010, 114) to bring about new ideas, not only into the fields of disability studies and queer theories, but also to the public.9 Crip theory focuses on “how bodies and disabilities have been conceived and materialized in multiple cultural locations and how they might be understood and imaged as forms of resistance to cultural homogenization” (McRuer 2006, 33). It also theorizes multiple forms of identity and disidentification (Bérubé 2006, vii) that have sprung from these two fields. It does not forget that disability (in its mutability, its potential invisibility, its potential relation to temporality, and its sheer variety) is a particularly elusive element to introduce into any conjunctural analysis, not because it is so distinct from sexuality, class, race, gender, and age but because it is always already so complexly intertwined with everything else (Bérubé 2006, viii). But, unlike queer theories, “crip theory does not —perhaps paradoxically— seek to dematerialize disability identity” (McRuer 2006, 35). On the contrary, the intersection or merging of disabled and queer identities can be said to produce “a third identity” (Samuels 2003, 250). This new identity is the focus of a theory that, logically, has sprung after the identities it refers to. Although most people are built up of multiple identities, society often requires us to choose among them, not only at any given moment but also as the only mask that we can wear to face the world. This goes against what Amin Maalouf warns us straightforwardly in his essay In the Name of Identity. Violence and the Need to Belong (1998), namely, the dangers that such a restrictive concept entitles, as the original French title of the work indicates: Les identités meurtrières (‘Murderous identities’, literally translated). We have, despite society’s mainstream opinion, the option of embodying all of these different identities at different moments, at the same time, or even of creating new hybrid identities which will blossom and feed back each of these (in)dependent communities.10
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I do consider that the term crip comprises the meanings of queer, but I will keep both terms due to two main reasons. First, they emphasize different forms of oppression and expression —(dis)ability and sexuality—, and secondly, the term crip is not well known enough (yet). 10
This idea is not just a theoretical construct; it is a reality that produces pain, confusion and exclusion. Red Summer (2013), in an article entitled “Op-ed: Being Black, Lesbian, and Muslim In The South” shares her experience on a complex multiple identity: Black. Muslim. Lesbian. I get the same look now that I did eight years ago when I say those words together. I might easily have said purple, polka-dotted unicorn. People pause and reflect. (...) I became a part of a thriving community that shaped and formed me into a new and powerful being: a Lesbian. For a while, that was all I was and I was OK with that. (...). It has taught me that I don’t have to choose between being gay or Muslim. That is a start. That is a really good start.
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Crip theory —as both of its sources, queer theory and disability studies— cannot be understood only as an academic field, disengaged from activism and art (McRuer 2006, 33-34), since its birth is necessarily linked to action and militancy. In this way, militants are acknowledged as experts — with all the limitations and potentialities that this implies—, as the creators of the political movements of which theory is only a part. A useful part insofar as it impels the movement, not when —and if— it recreates hierarchies and discriminations (Riot 2010, 7). The term crip (which, like the term queer, undeniably has a long history of pejorative use) 11 is fluid and ever-changing. As Sandahl puts it: The term crip has expanded to include not only those with physical impairments but those with sensory or mental impairments as well. Though I have never heard a nondisabled person seriously claim to be crip12 (as heterosexuals have claimed to be queer), I would not be surprised by this practice. The fluidity of both terms makes it likely that their boundaries will dissolve. (Sandahl 2003, 27) The term ‘crip’ remains a controversial one and has been bitterly criticized for being out of touch with the lived experiences of disabled people. Mark Sherry expresses it in these terms: Being a “crip” is not a metaphor of being a ‘bad ass’ disabled person, as many privileged academics seem to assume. (...) For a privileged (usually White) disabled academic, calling oneself a “crip” might seem radical, if not trendy. But using such a term in the context of the safety of academia masks enormous embodied, classed, gendered, sexualized, racialized privilege. (Sherry 2013) Nevertheless, apart from (disabled and non-disabled) scholars, some disabled artists have claimed the term crip as an empowering tool that settles their dislike for euphemisms such as “differently abled”, which is considered by Nancy Mairs as pure verbal garbage designed, by its ability to describe anyone, to describe no one. (...) Society is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles. I would never refer to another person as a cripple. It is the word I use to name only myself. (Mairs 1986) Similarly, Cheryl Marie Wade, an English-speaking poetess, states: “I use the word cripple with artists and with those who can deal with it. The meaning of crippled is about a bodily experience – it’s to the point.” (in marcys 2007) 11
Both of them are reapproapriated insults which are difficult to replicate in other languages. In Spanish, different alternatives have been suggested for crip, among which I prefer the terms ‘cascao’ and ‘tullido’ that can also produce the verbs ‘cascar’ and ‘tullir’. For queer, we have the general term ‘desviado’ or ‘anormal’ and also ‘transmaribolleras’. 12
The only example of this coming out crip that I have come across is McRuer’s coming out as HIV-positive in an academic meeting in the Netherlands (McRuer 2006, 53-57).
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These terms —queer, crip— can both be used for describing the same abject subjects by society: we are the queer groups, the people that don’t belong anywhere, not in the dominant world nor completely within our own respective cultures. Combined we cover so many oppressions. But the overwhelming oppression is the collective fact that we do not fit, and because we do not fit we are a threat. (Anzaldúa in McRuer 2006, 37) But a novel thought is introduced when these subjects are not presented as they used to, given crip theory’s understanding that “being disabled” can mean “being not a victim, not a special case, but a member of a proud and fierce community” (Samuels 2003, 243). This theory is, therefore, a process of empowerment and reappropriation of the representation of certain bodies. As Beatriz Preciado comments referring to the postporn movement,13 it is “the process of becoming a subject for those bodies that had only been abject objects of [pornographic] representation: women, sexual minorities, nonwhite bodies, transsexuals, intersexuals and transgenders, deformed or disabled bodies” (Preciado 2010, 13; my translation). Finally, crip theory demands that “an accessible world is possible” (McRuer 2006, 71) and could also be read as central to our efforts to counter neoliberalism and other cultures of upward redistribution, and it definitely offers a glimpse into alternative ways of being (McRuer 2006, 42).14 It also insists that this disabled world is desirable, as it conceptualizes “disability as the raw material against which the imagined future world is formed” (McRuer 2006, 72).
6. Disabled and Queer identities: analogies, similarities and differences Although the tendency to make analogies is persuasive, it has been warned, nevertheless, that they should be employed carefully and critically (Samuels 2003, 236). However, it could be that the disability-queerness analogy is less problematic than the sex-race one, as they refer to liberatory practices rather than to oppressed social identities (Samuels 2003, 235). Some disability theorists, 13
The postporn movement, although it could definitely be considered a highly interesting form of queercrip activism — especially now, when it just started to produce crip postporn—, will be omitted in the present study due to reasons of space. Postporn is an artistic and political movement that can be defined as the transformation of the use of pornographic images from masturbatory to critical and political purposes; a movement in which dissident and oppressed bodies fit as subjects rather than objects. Postporn does not try to be an overcoming of porn, but it aims to raise or actually it raises another type or representation of sexuality, not only another sexuality but quite another type of representation of it. A representation of some other bodies that we don’t normally see in mainstream porn. (Torres, Helen in Muestra Marrana 2014 2014; my translation) For more information, see, for example, the works of performer Elena Urko, Diana J. Torres’ Pornoterrorismo (Txalaparta Argitaletxea, 2011) and María Llopis’ El postporno era eso (Melusina, 2010) —all of them in Spanish—, among others. 14
Crip culture can be a powerful tool in this direction. For a glimpse of some of its potentials, see Disability Culture Rap. 1994. Online. Directed by Jerry Smith. Based on Cheryl Marie Wade’s text. US, Advocating Change Together. Accessed April 15, 2014. https://www.youtube.com/watch?v=j75aRfLsH2Y and https://www.youtube.com/watch?v=WTO2vn0dkaU
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therefore, suggest that disability has a lot in common with sexual orientation. “One argument for this connection is that most people with disabilities, like most queers, do not share their identity with immediate family members and often have difficulty accessing queer or crip culture” (Samuels 2003, 234). This quality is referred to as “horizontal identity” by Andrew Solomon in Far From the Tree and is defined in these terms: Often, however, someone has an inherent or acquired trait that is foreign to his or her parents and must therefore acquire identity from a peer group. This is a horizontal identity. Such horizontal identities may reflect recessive genes, random mutations, prenatal influences, or values and preferences that a child does not share with his progenitors. (Solomon 2012, 2) Another important similarity is the fact that disabled people, as queers, often have to face the dilemma of whether, when, whom and how to pass as normal or to come out as disabled or crip, as “the labels of nondisabled and heterosexuality are always already presumed ‘unless otherwise stated’” (Samuels 2003, 235). Heterosexuality’s invisibility was long ago established as a critical remark within queer studies which refers to the fact that, for centuries, it “passed as universal love and intimacy, coextensive not with a specific and historical form of opposite-sex eros but with humanity itself” (McRuer 2006, 1). As McRuer argues, it is not only that homosexuality and disability that share a connection through their pathologized past, but that the system of compulsory able-bodiedness, which in a sense produces disability, is thoroughly interwoven with the system of compulsory heterosexuality that produces queerness: that, in fact, compulsory heterosexuality is contingent on compulsory ablebodiness, and vice versa (McRuer 2006, 2). Therefore, “[a]ble-bodiedness, even more than heterosexuality, still largely masquerades as a nonidentity, as the natural order of things” (McRuer 2006, 2). Crip theory refuses —as queer theories did with gender— “the binary division of the world into able-bodied and disabled— or, rather, affirms the collective crip dissent from that division”. This dissent comprehends “the ablebodied/disabled binary as nonnatural and hierarchical (or cultural and political) rather than selfevident and universal” (McRuer 2006, 36-37). Also, regarding sexual interaction, “’What exactly do you do?’ is about as frequent a question for disabled people, in relation to sex, as it historically has been for many queers” (McRuer 2010, 107). It should not be forgotten that crip sex can be a social revulsive that helps create and spread new
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ideas about normality, diversity and difference. In this sense, projects like “Yes We Fuck” 15 from Barcelona-based Post-Op group —which showcases sex workshops with non-disable and disabled participants among other crip stories— will remain to be controversial, shocking and marginal for many more years. Crips fight for normalization, but not for normification. Normalization means having fair chances in society; it describes the situation in which disability does not exist, where crips have to face only their impairments; whereas normification is “the effort on the part of a stigmatized individual to present [themself] as an ordinary person, although not necessarily making a secret of [their] failing” (Goffman 1963, 31). Crips do not try to be normal, they try to live happily. They assert the right to legitimacy without normalcy and try to fight against the binomial system of normality/abnormality in which the following formula has the status of a law: normalcy = respectability = beauty = truth (Gúzman and Platero 2012, 3). Queer crips are marginal creatures —we could also say citizens, but they are often denied this status by the rest of society— of complex identities. As Eli Clare, one of the founders of the Queerness and Disability Conference in San Francisco, has put it: On one hand, as queers, we are perverse, immoral, depraved, shaped as oversexed child molesters or as invisible creatures, legislated out of existence. And on the other, as crips, we are entirely desexualized or fetishized or viewed as incapable of sexual responsibility. What a confounding maze of lies and stereotypes. (Clare, 2002)
7. Stigma. Passing and coming out. Self and identity A clarification of some terms may be of extreme utility in order to understand these common experiences. Special attention will be given to the work of Erving Goffman, who is considered the father of symbolic interactionism and whose works are still largely quoted and developed. 7.1 Stigma First of all, stigma can be defined as “the situation of the individual who is disqualified from full social acceptance” (Goffman 1963, preface), which arises from the possession of “an attribute that makes [them]16 different from others in the category of persons available for [them] to be, and of a less desirable kind” (Goffman 1963, 3). Therefore, we are not talking of a specific attribute, but of “a special kind of relationship between attribute and stereotype” (Goffman 1963, 4) that can be 15
For a trailer of the project, check and the website of the project is . 16
Male pronouns of the original text (e.g. him) have been replaced by more neutral ones (e.g. them) in order to comply with a more modern understanding of how language shapes our conceptualization of gender and sex.
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applied to most people at certain times or environments. Normative expectations “constitute standards against which almost everyone falls short at some stage in [their] life” (Goffman 1963, 128). Stigmas have been classified in a variety of ways. Goffman, for example, separated them in three categories: of the body, of the weak will and of lineage (or vertical stigma). This classification is not exhaustive and it has been reformulated and extended but it is a good starting point. Disability, a very strong stigma in our societies, is a paradigmatic example of a stigma of the body. Although in most contexts the disabled represents the other, as soon as we think a bit longer, we arrive to understand Mark O’Brien’s statement: I want people to think of disability as a social problem. That you might become disabled at any minute. To think not in terms of us and them. Think of the eventuality. Everybody becomes disabled unless they die first. (Breathing Lessons 1996, 00:18:00) We are all stigmatized. We are all disabled. We all have sexuality. As Greg Walloch, a comedian with cerebral palsy, explains: I use disability and sexuality to make people see that we are “all disabled in our very own special way”. We all have things that make us different. What I show in my work is that we all have things to embrace. (Kramer 2006, 106) Or as a guy with two dicks answered to the question “Why did you go public after all this time?” in the Internet: There’s a ton of judgment and ridicule against people for things they cannot control. Deformities, medical abnormalities, mental conditions and a variety of other handicaps. There are tons of people who have to keep something secret because if anyone knew, it would change their life, and not always for the better. There are people who live in fear of what others may think. Someone needed to tap the fishbowl of the world and get everyone’s attention. I thought, you know? I can get their attention, and manage it in a way that will keep me safe. I can get their attention and try to make a positive difference. (doubledickdude 2014) An important question remains, though, that is whether there are other ways to claim equality and respect without using category or temporal arguments such as “We are, after all, the same” or “It can also happen to you”. Is this the easiest or the most effective way of relating to human empathy and of achieving a fair world? Cannot we fight for the rights of someone who we consider radically different and in whose position we cannot imagine ourselves to be ever?
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7.2 Passing Wherever there is stigma, there is also passing. Passing is defined as “the management of undisclosed discrediting information about self” (Goffman 1963, 42). This is possible because stigmas are not “always immediately apparent to any and all persons with whom an individual [has] contact” (Goffman 1963, 73). Nevertheless, a distinction should be made between passing deliberately and passing by default (Samuels 2003, 240). Goffman considered that “[b]ecause of the great rewards in being considered normal, almost all persons who are in a position to pass will do so on some occasion by intent” (1963, 74). Nevertheless, when a stigma becomes an identity, passing —or assuming “the privileges of the dominant identity” (Walker in Samuels 2003, 240)— acquires a new meaning, and starts to be considered a betrayal (both group and self-betrayal) and assimilation. “Like racial, gender, and queer passing, the option of passing as non-disabled provides both a certain level of privilege and a profound sense of misrecognition and internal dissonance.” (Samuels 2003, 239) This passing as “normal” is by definition “a form of negative disability identity” (Samuels 2003, 240) and can endanger someone’s belonging to a group.17 Nevertheless, this is not the only reading of passing, as it can also be considered a subversive practice and it shows “how the passing subject may be read not as an assimilationist victim but as a defiant figure who, by crossing the borders of identities, reveals their instability” (Samuels 2003, 243). 7.3 Coming out Passing cannot be understood without its complementary strategy —the ‘coming out’— that has been defined in a variety of ways. Samuels, for example, makes a difference between ‘coming out’ (without an object) and ‘coming out to’ a person or a group (Samuels 2003, 237). ‘Coming out’, therefore, “usually refers to the time that one first realized and came to terms with one’s own identity” (Samuels 2003, 237) and does involve, very often, a political commitment. ‘Coming out to’ someone “usually refers to a specific revelatory event” (Samuels 2003, 237). Rather than an isolated event, many still must “make decisions about coming out on a daily basis, in personal, professional, and political contexts” (Samuels 2003, 237). Although the term ‘coming out’ has been popularized by the LGTB community, it can be in fact applied to the disclosure of any stigmatizing information about the self. Therefore, it follows similar
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However, this same person will still be considered by society as belonging to a specific stigmatized category when their stigma is disclosed. Therefore, this person risks been excluded both by mainstream society and by the minority group in which society places them. I use “group” and “category” following Goffman’s distinction: “The term ‘category’ is perfectly abstract and can be applied to any aggregate”, whereas the term ‘group’ refers to a community that has capacity for collective action, a stable and embracing pattern of mutual interaction and a common identity (Goffman 1963, 23).
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dynamics in many cases, whether the stigma or the discrediting information is related to a nonnormative sexual orientation, to some sort of impairment or to an unusual family record. 7.4 Is identity always visible? Passing VS coming out as strategies Not everyone has the option under every circumstance of choosing between passing and coming out. Cultural logic states that “the physical body is the site of identic intelligibility” (Gingsberg in Samuels 2003, 243), so anyone whose identity is regarded to “exist[s] only as visible physical difference” (Samuels 2003, 241) will face problems of credibility. This is so because social scrutiny “refuses to accept statements of identity without ‘proof ‘” (Samuels 2003, 233), even if they refer to stigmatized identities. While race and disability are assumed to be visible,18 sexual orientation is, by definition, invisible. Still, it is not uncommon to hear comments like “She’s so feminine, she doesn’t look gay!” This is exactly what happened to me when I introduced a feminine-looking girl that I happened to like to a friend. “But she doesn’t look like a lesbian!” was my female friend’s response. Her very answer revealed two common misconceptions: that I should —as a female— like only lesbians, and that lesbians are recognizable by the way they look. Non-visible disability,19 therefore, is very often questioned, both by the non-disabled community and —to a lesser extent— by the disabled community. This may be partially explained by visibility [being] both the basis of community and the means of enacting social change. (...) Thus vigilant resistance to external stereotypes of disability and lesbianism [queerness] has not kept our subcultures from enacting dynamics of exclusion and surveillance over their members (Samuels 2003, 244). Therefore, “the contingent (non)visibility of queer identity has produced a variety of nonverbal and/or spoken means to signal that identity, while the assumed visibility of race and disability has produced an absence of non-verbal signs and a distrust of spoken claims to those identities” (Samuels 2003, 241). 7.5 Self and identity. Sexual lifeways What is identity after all? Is it the set of beliefs about oneself? Is it the set of experiences we pile up throughout our lives? Is it the category or categories in which we fall or in which we enroll ourselves? Or is it, after all, an act of faith? 18
The term visible is chosen due to its widespread use, but, as Goffman indicates, it would be more appropriate to refer to it as “perceptible” or “evident” (Goffman 1963, 48), as vision is not our only means of perception. 19
Following Samuels, the term non-visible disability will be used to indicate the condition of unmarked identity — impairments that are not readily perceived by others in a first encounter, e.g. HIV/AIDS, chronic fatigue syndrome or sick-cell disease— and the term invisible will be used to indicate social oppression and marginality (Samuels 2003, 251, note 1).
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The sporting of identities always entails acts of faith; ones that have left me sorely disappointed for a set of linguistic signs can never exemplify that which is unrepresentable” (Giffney 2009; emphasis added). Goffman, following Erikson and others, defines ego identity as “the subjective sense of [one’s] own situation and [one’s] own continuity and character that an individual comes to obtain as a result of [their] various social experiences” (Goffman 1963, 105). Therefore, identity is always complex by definition and necessarily unique. However, the concept of sexual identity —as every other sexual classificatory system— has been fiercely disputed by queer activists. Nevertheless, Herdt and Hostetler regard them as “necessary, even useful —if ever-shifting and contingent— frameworks for understanding the intentional realities and individual experiences of sexual minorities” (Hostetler and Herdt 1998, 250-251). Because of the claimed fixed nature of the concept of identity, they suggest the use of a new concept, that of sexual lifeway: “Sexual lifeways are culturally constituted developmental pathways, embedded within social and symbolic systems, that provide rich and meaningful contexts for the realization of full personhood in a society” (Hostetler and Herdt 1998, 251). In order to better understand what a sexual lifeway is, we need first to define sexual cultures, which for the authors is the specific discursive and material fields in which systems of power relationships are used to control sexual behavior or conduct, and through which sexual lifeways are instituted, enculturated, enacted, and reproduced. Sexual cultures, as historical formations, are distinct from bordering cultures and from the imports of colonization (Hostetler and Herdt 1998, 264). In this frame, sexual lifeways “are the culturally specific erotic ideas and emotions, sexual/gender categories and roles, and theories of being and becoming a full social person that together constitute life-course development within a particular sexual culture” (Herdt in Hostetler and Herdt 1998, 264). Furthermore, we may not forget that identity is not only a subjective experience, but it can also be part of a politics of resistance, as the personal is most of the times political.20 Let’s recall, however,
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This is, of course, not always so and it depends on personal choice or circumstance. This can lead us to different issues, such as who defines sexual resistance and who defines a political act? Who determines how micro-sexualities fit into a more macro vision of empowerment through sexuality? In part, this is a question of who speaks for whom. Because, while it is popular to claim that the personal is political, the converse —that the political is personal— may be problematic. (Guldin 2000, 237)
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“that the personal is more than political, and that the political is also personal” (Hostetler and Herdt 1998, 262). 8. Anthropological frame 8.1 Why Anthropology? Anthropology gives us the chance to understand people’s lives —including our own— from a perspective that is mainly qualitative and, therefore, is more likely to broaden our way of understanding the world and to affect policy change. These two elements are essential in the attainment of a world with more social justice. Anthropology is also the science that has traditionally dealt with the Other, with what is outside of the norm and there, no matter how unorthodox it may seem at first sight, it finds patterns, social structures, common ideas that organize a community. Anthropology also analyzes innovation, finds the Other within the Other, and approaches deviance with a curious gaze. Ethnography —“the global methodological process that characterizes social anthropology” (Velasco and Díaz de Rada 1997, 18; my translation)— is similar to “the routine ways in which people make sense of the world in everyday life” (Hammersley and Atkinson 1983, 2) and constitutes, therefore, not only a way to produce knowledge, but also a training tool for learning how to be more present in the lives we embody. Anthropology, therefore, is the methodological framework that I have applied in order to come closer to an understanding of crip identities and I believe it to be the only academic discipline with such potentials. 8.2 What type of Anthropology? Action Anthropology and neutrality Should the products of Anthropology, like those of other forms of social research, simply lie on library shelves gathering dust? Or should research be concerned with bringing about change? If as human beings we have the right and obligation to commit ourselves to the improvement of social justice, how can we abandon that commitment the moment we become social researchers? Borrowing Kellett’s terms (Kellett 2009), should Anthropology be an active engagement or a passive scholarship? It has been argued that “the primary goal of research is, and must remain, the production of knowledge” (Hammersley and Atkinson 1995, 17), but it cannot be forgotten that “research is always affected by values, and always has political consequences” (Hammersley and Atkinson 1995, 15). As some authors demonstrate (Singer 1990; Kellett 2009), the neutrality of Anthropology is neither possible nor desirable. “[A]dvocacy, in the broad sense of putting knowledge to use for 23
the purpose of social change, is the explicit aim of the anthropological endeavor” (Singer 1990, 548), and the Anthropology that engages in such advocacy is often referred as Action Anthropology.21 Anthropologists —as other human beings—22 must make choices that they should be able to justify. They should not let their values dictate the results of the research, but that does not mean that they cannot have goals other than academic scholarship. I would like this research to be goal-oriented and to address, if not the implementation of measures for the betterment of society, at least some kind of analysis of the challenges we face in order to achieve that improvement. These will come, not from the “pockets” of the researcher, but from the analysis of the data collected during field work and it will also try to address the participants’ concerns. 8.3 Interpretative anthropology, thick description and clinical ethnography Ethnography’s particular contribution to the human quest of explaining reality is not a specific technique or procedure, but a “kind of intellectual effort [...] ‘thick description’” (Geertz 1973, 6). Ethnographic description is, therefore, not general and unspecific, but “interpretative and microscopic” (Geertz 1973, 21). Data processing, therefore, consists of describing, translating, explaining, and interpreting. This is not a consecutive series of steps, but a system of interconnected and inseparable processes (Velasco and Díaz de Rada 1997, 42). First of all, let’s not forget that this interpretative approach tends to resist conceptual articulation and it will never be predictive, because culture theory rarely is (Geertz 1973, 24-26). Therefore, this approach is “essentially contestable” and most of the times “is marked less by a perfection of consensus than by a refinement of debate” (Geertz 1973, 29). Ethnography is about “particular attempts by particular peoples to place these things in some sort of comprehensible, meaningful frame” (Geertz 1973, 30), and, in this sense, I do believe that the insights that can be gained from becoming acquainted with queer and crip perspectives are many and valuable. But culture is not an obvious system and its disentangling is laborious:
21
Many overlapping terms are used to refer to the application of Anthropology as opposed to an academic and neutral Anthropology: applied anthropology, action anthropology, praxis anthropology, engaged anthropology, practical anthropology, and advocacy anthropology, among others (Kellett 2009, 23). For clarity’s sake, I will be mainly using the term Action Anthropology. 22
The idea that researchers can stop embodying their humanity —in all realms— for the sake of objectivity is dangerous and inappropriate: One evening, as we finished supper and a long session of interviews and conversations, he [a male informant] asked me to spend the night. I explained that while I was conducting field research it was ethically incumbent on me to refrain from sexual relationships with the men involved (cf. Wengle 1988:25, 91). “What?!” he exclaimed with incredulity as he was looking up the word celibacy in his Russian-English dictionary, “Aren´t you a human being?!” (Markowitz in Markowitz and Ashkenazi 1999, 167).
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[M]an is an animal suspended in webs of significance he himself has spun, I take culture to be those webs, and the analysis of it to be therefore not an experimental science in search of law but an interpretive one in search of meaning. It is explication I am after, construing social expressions on their surface enigmatical. (Geertz 1973, 5) Something must be clear, though, we are not aiming to codify abstract regularities in order to build a theory, we do not want to “generalize across cases but to generalize within them” (Geertz 1973, 26). “Clinical ethnography is the intensive study of subjectivity in cultural context” (Herdt 1999) as it is necessary in order to build a consistent account of the complex relationship of experience and culture. This ethnographic approach “takes the person and individual subjective/behavioral differences within real communities” (Herdt in Herdt 1999) into account, because all experiences, included those classified as “deviant”, are part of what builds a culture. This technique —the generalization within cases— has been “borrowed” and modified from medicine and psychology, where it is called clinical inference: Rather than beginning with a set of observations and attempting to subsume them under a governing law, such inference begins with a set of (presumptive) signifiers and attempts to place them within an intelligible frame. Measures are matched to theoretical predictions, but symptoms (even when they are measured) are scanned for theoretical peculiarities-that is, they are diagnosed. In the study of culture the signifiers are not symptoms or clusters of symptoms, but symbolic acts or clusters of symbolic acts, and the aim is not therapy but the analysis of social discourse. But the way in which theory is used to ferret out the unapparent import of things is the same. (Geertz 1973, 26) 8.4 The role of the anthropologist Having into account that the process of fieldwork is generally hidden and backstage and that this fact makes the judging of the ethnographic text complex (Fine 1993, 269), one of the roles of the anthropologist must be to reflect upon the ethnographical process. The virtuous image we create of the anthropologist responds more to an ideal towards which is good to strive rather than an enacted reality. The anthropologist is expected to be kind, friendly, honest, precise, observant, unobtrusive, candid, chaste, fair, and literary (Fine 1993). These virtues are, therefore, often challenged during the anthropological endeavor; thus, “it is crucial for us to be cognizant of the choices that we make and to share these choices with readers” (Fine 1993, 268). 8.5 Sexing the anthropologist A friend suggested me, half-jokingly, that I could write my research on the sexual experiences that I have with the participants. It has been warned that, when dealing with a sexual research that 25
emphasizes verbal reports —as most do—, “a paradox arises: Ideals may substitute for actualities” and also that “[t]he problematic ‘private’ or ‘intimate’ qualities of sexuality in many times and places mean[t] that the sexual encounter between adults is a difficult ethical, political, and psychological matter to study” (Herdt 1999). I cannot but admit the interest of such a research, especially, given the scientific taboo around the topic in ethnographic work (Herdt 1999; Fine 1993), but the methodological, ethical, and practical difficulties of such an enterprise overcome my capacities at this given moment. Nevertheless, I will try to carry out a sexed and gendered ethnography, one that following Markowitz is the result of incorporating to the ethnographic research and its texts “the recognition that ethnographers are viewed as sexual beings and placed into gender categories —male, female, homosexual, heterosexual, bisexual, neuter, androgynous, and more— by the people studied” (Markowitz in Markowitz and Ashkenazi 1999, 162). This is just another element of the understanding that ethnographers always carry out their research in a real context, among real people, with all what it implies (Markowitz in Markowitz and Ashkenazi 1999). That does not mean that one must have sex with the informants in order to have a better understanding of their culture, but that by admitting that we are sexual beings, “researchers become more approachable, more human, more real, and less removed and powerful or pathetic than as genderless anthropologists” (Markowitz in Markowitz and Ashkenazi 1999, 172).
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PART II: FIELD WORK 9. Goals The more I research the more I prove the Ancient Greek adage: ἓ ν οἶ δα ὅ τι οὐ δὲ ν οἶ δα (I know one thing that I know nothing). Very aware of my limitations, I will not try to put forward a new theory or revolutionary findings, not even a starting thesis to prove or at least to falsify in the Popperian sense. I will be satisfied sketching some problems and questions that need further research in the field. These questions have been originated through readings, empirical observations and interviews. The purpose of anthropology —maybe more than any other discipline— is not only to provide tentative answers, but to pose questions: The essential vocation of interpretive anthropology is not to answer our deepest questions, but to make available to us answers that others, guarding other sheep in other valleys, have given (Geertz 1973, 30). In this way, we are not only providing new answers, but also some other ways of questioning reality and of learning from human experience, in the quest of understanding ourselves a bit better and of forging a more just society.
10. Methodology 10.1 Sources Sources of many types have been used for this research, as my initial knowledge about disability and crip theories were scarce. I was more familiar with LGTB studies and queer theory, and had many more personal experiences to relate to. I also had to swim in the field of anthropology, which I did with three books (Goffman 1963, Hammersley and Atkinson 1995, and Velasco and Díaz de Rada 1997) with which I laid the foundations before I started reading articles and doing my research. In the bibliography section I only include those sources used in my written work. This means that I have read as much as possible on the topics, which often took me far from where I started. I have, on top of that, tried to read a variety of sources, so my readings have not only been limited to academic books and articles, but they have also included newspapers stories and blogs, which very often provide testimonies and personal opinions by “the people themselves”. I also count as “reading” the watching of movies and documentaries, as they are also discourses, which very often are addressed to a broader public. All the same, I must say that the list of to-do readings at the “end” of the research is bigger than the bibliography I have read so far. 27
I have undertaken both informal and formal interviews with participants. Informal interviews and unsolicited accounts happened all the time with queer individuals as I belong to the community and they also started to happen more and more often with disabled people as I started to get to know different people, attend events, form friendships, etc. However, the topic of sex and sexuality arises much more easily and often at queer environments than it does at crip ones, therefore, I very rarely witnessed an unsolicited account of a sexual nature among the disabled. A formal interview means that they know they are being interviewed and I am, whenever possible, recording the conversation. These were mainly face-to-face, in-depth, as little directive as possible, and in Greek (with an interpreter when interviewing Greek Sign Language users), and I transcribed them afterwards to facilitate the analysis. Due to space limitations, I only attach the transcription (see Attachment I) of the quotes used in the research, but a complete transcription of all formal interviews is available upon request.23 The environment was always friendly and we always used the casual form of address.24 In a couple of cases, the interview was done by e-mail. This posed several difficulties but it had a few advantages, such as the avoidance of the time-consuming task of transcribing Greek and the chance of the interviewee to answer complex questions such as “What is sexuality for you?” in an elaborate manner that the face-to-face format does not allow in many cases. 10.2 Group The contact with these two groups —queer and crips— was also facilitated by my involvement in different groups and activities. Among others, I have been in contact with most LGTBQI and active queer groups of Thessaloniki,25 I was in the organizing team of the Sexuality Festival, which included —under my responsibility— some movies related to the topic, an open discussion entitled “Ναι, και εμείς πηδάμε! Συζήτηση για σεξουαλικότητα και αναπηρία” (“Yes, we fuck!26 Open discussion on sexuality and disability”), the participation for advertisement purposes in a radio show aimed at disabled people, and the participation of queers and crips in a Human Library event27
Contact the author at
[email protected] Greek is a language with a T-V distinction, which means that it has second-person pronouns that are specialized for different levels of politeness. The pronoun ‘εσείς’ (plural ‘you’) indicates politeness and respect, but also distance, whereas ‘εσύ’ (singular ‘you’) indicates casualness, but also trust and closeness. 23 24
25
I have had contact with HomoPhonia, Good As You(Th), Massqueerraid, Pink Attack and Mob Kafeneio. I did not have contact with Thessaloniki Pride and Thessaloniki Rainbow Youth, which are mainly —and almost exclusively— involved with the organization of the Gay Pride. 26
The title was inspired by a documentary project that is being developed in Barcelona: . 27
A Human Library is an event in which every book is a different person sharing their personal story and answering questions:
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that took place during the Festival. I have also joined the Accessibility Team 28 of the Aristotle University, which deals mainly with accessibility issues at the university, and not so much with sexuality and identity, but that has been a gate for getting to know disabled people in Thessaloniki and their allies. Due to restrictions of time and cultural context, a selective approach was used in order to choose the informants, who were mainly accessed on the basis of social ties and willingness to participate in the research. On November 12th, 2013, I have an interview with Andromachi, a Greek philologist who has dealt with disability academically and professionally for several years. She warns me that Greeks are suspicious people, full of prejudices and stereotypes and that “people with disabilities do not want to be treated as exhibits or objects, but that is what they are used to expect”. Therefore, she advises me not to contact people on my own for interviews and to establish in advance what I want, why and what for, in order to avoid suspicion and enhance people’s collaboration. It is not only “the danger that the information provided will influence the behaviour of the people” (Hammersley and Atkinson 1983, 72) what scares me, but the fact that due to my lack of knowledge, I do not know what I am looking for yet. However, I regard this as a chance for being more open to the information I may get, and capable of redesigning the research as much as necessary, since this is always a continuous process (Hammersley and Atkinson 1983, 45). A very important factor to have into consideration is that most Greeks are not open to the idea of talking about sex and sexuality. Because of this taboo nature29 —and following Hammersley and
Books are people just like you and me. But for different reasons they are subjected to stereotyping and prejudices. They are open about who they are and prepared to share their experiences. (...) A Human Book is a person that has chosen to be a public representative of a certain group. An example of how people can be, if only minds are open long enough to find out who and what they really are. See more at 28
The Ομάδα Προσβασιμότητας of Aristotle University is an anti-fascist, anti-discrimination, anti-capitalist group of self-advocate disabled students and their allies that try to fight against the discrimination and lack of accessibility at the Aristotle University and around Thessaloniki in general, as well as to establish alliances with other minorities and antidiscrimination groups. Its members are mainly university students with mobility impairments and psychology students and they hold to work politically from the social model of disability. See more at . 29
An example of this is Thomas’ experience in the Human Library. Thomas is a tetraplefic philologist and, although he was open to answer any question, many people were reticent to ask him about his sexuality and sexual experiences. This could be interpreted as shyness, political correctness or fear. In the Sexuality Festival we tried to create an environment of safety and comfort to prompt such type of conversations. We tried to avoid “political correctness”, as this is very often an indication of discrimination and lack of honesty and based on our belief that anything can be asked if done with politeness and always respecting the other’s right not to answer. Besides, disabled people have to face this annoying political correctness quite often in their lives, something that many times, when related to sexuality, just means that society does not expect them to be sexually liberated to talk about sex. They are supposed to have complexes, to fear the topic and not to have had sexual experiences or only negative ones. A young guy, nevertheless, was “brave enough” to ask him directly if he had erections, to what Thomas answered honestly. He considers this question an impressive one for a Greek to make, because they do not normally talk openly about sex or other topics related to manhood. Besides,
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Atkinson— I was inclined to an unrepresentative sample, based on self-selection and selection by others. This means that my informants are largely young people (under 40), educated and middleclass, as these are the characteristics of most of the people I have contact with. 10.3 Challenges No field work can be exempt of challenges and difficulties, and these methodological concerns should be included in any quality work to be produced that takes into account the post-modern approach to the legitimacy and accuracy of science. Judging texts is very complex when “much of the process of fieldwork is hidden and backstage” and our methodology should be “increasingly self-critical, self-conscious, and self-reflective” (Fine 1993, 268-269). The first methodological challenge was finding people who would trust me. This was much easier once I was introduced by a common connection, but this just displaces the question: how to make that first contact? How to make that first person, to whom I am a stranger, trust me and my intentions? I discovered that I did not need to lie or cover information, because my target group was formed by people who did also find sexuality a mind-blowing topic and realized the lack of research within disability studies. All in all, my interest in disability was sometimes questioned or inquired about, to which I often recalled stories about my Sign Language interpreter sister and my tetraplegic uncle-in-law. These stories are true and they established some common ground with the disability community, but they are not all the truth, since, for example, I was careful not to mention, at least in a first meeting, my —in my opinion, healthy— fascination for “monsters” since my watching of Freaks, Tod Browning’s classic. Another of my concerns was the mutuality of information exchange. I did feel at times the impulse of sharing information about myself and my opinions —in such a delicate and intimate topic— in order to be ‘fair’. This information was very often requested by the informant, who sometimes seemed to consider my lack of sharing as a proof of me objectifying and using them. I was, most of the times, very concerned with trying not to influence the interviewee’s ideas, and resolved to answer any question they would have —that sometimes included my opinion or personal experience in relation to sexual orientation, sex practices, disability experience, etc.—, given we could do it once the tape-recording —and, therefore, the official interview— had finished. I was aware that this could influence their opinions or the type of information they would disclose to me in the future, but mainly, in my opinion, it would foster a deeper trust and, therefore, a more likely further exchange of information.
Thomas was surprised that “even people with disability have reservations as to whether to talk openly about this specific topic [sex and sexuality]”.
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Very often, as it is common in ethnographic research, I gained acquaintances and developed friendships. This was in a way requested by some of the informants, who seemed to believe it was offensive to think of them only for interviews and not for “going out to drink a coffee”. This was, however, generally easy, as I did not dislike any of the people I interviewed and young people in Greece are quite busy, so only a portion of these coffee arrangements finally materialized. Also, the more friendly the relationship became, the more confident the person was to disclose personal information and the greater my fear of “betraying and using” them. I am concerned by the use I have done of the information they have provided, both in formal interviews and in off-the-record interactions. I do this research with honest goals and interests and I have tried to be as respectful as I could —with others, with science and, more especially, with myself and my opinions, discoveries and analyses. Nonetheless, I cannot stop having a variety of worrying concerns about the participants’ feelings, for instance: What if they not only disagree with my analyses but if they feel I do not have the right to analyze their behavior and come to “wrong” conclusions? What if they feel offended? What if they feel objectified, used, misused, abused? What if they felt betrayed? Maybe, it would be easier if I developed my research among people with whom I differ markedly, in which case I would not be concerned by betrayal, but by fairness, objectivity and, maybe, personal safety. However, everything that I experienced is part of my life and, given I respect others and try to ensure their anonymity, there should not be any problem. I realized that people were quite open to talk about sexuality as a general topic —sex education, love, flirting, sexual orientation, etc.—, but they were quite shy when specific sexual practices and personal experiences were addressed. This shyness was somewhat infective, as I realized I became shy myself at entering such a delicate topic and decided early in the research that I would rather center in sexuality and identity. Language was another challenge that has to be taken into account in the evaluation of the research. As most factors, it brought both advantages and disadvantages, the latter being my inability to grasp all the nuances and meanings of words. On the other hand, one of the advantages was my acquired right to ask about the meaning of words that either I did not understand or I wanted the informant to elaborate further. This made even questions such as “What is sexuality?” or “What is disability?” more legitimate, as the informant had got used to the image of an ignorant interviewer. Also, it made easier for me to foster estrangement, which is basic when undertaking an anthropological adventure (Velasco and Díaz de Rada 1997, 28-29). Being in a foreign country gave me the chance to look around me with “fresh” eyes and speaking a foreign language constantly reminded me of that fact. Furthermore, being able to interact in Greek rather than in English offered people around the chance to feel and talk at ease, and at the same time I was held in higher esteem. 31
I was very concerned by the possibility of influencing or directing the interviewee’s ideas. Ethnographers tend “to regard solicited accounts as less valid than those produced spontaneously” (Hammersley and Atkinson 1983, 129), and my research material is mainly formed by interviews. Notwithstanding, I tried to favor non-directive interviewing, in which “the interviewee is allowed to talk at length in his or her own terms, as opposed to more directive questioning. The aim here is to minimize, as far as possible, the influence of the researcher on what is said, and thus to facilitate the open expression of the informant’s perspective on the world” (Hammersley and Atkinson 1983, 129). Very often, I wondered what the gap between what they told me and what they really thought and felt was, as I knew that, when talking to me, they were also seeking external support of their ideas, trying to portrait a better image of themselves, looking for sympathy, etc. In ethnography, however, the “aim is not to gather ‘pure’ data that are free from potential bias. There is no such thing. Rather, the goal must be to discover “the correct manner of interpreting whatever data we have” (Hammersley and Atkinson 1983, 131). Some people accepted to be interviewed but still thought they had not much to tell. These people where either those who thought that they had not had sexual experiences yet, or those who believe “we’re normal, so there is nothing to research”. In all of these cases, I found interesting opinions and experiences, but their reticence showed me the big gap between the researcher’s perspective and the interviewee’s perspective:30 I know what type of information I am looking for —identity construction, conflicts, dilemmas, etc., which derive from my readings, reflections and goals—; the others are just telling me their experiences and opinions, and have never thought of themselves as research subjects or as having something valuable to contribute to “science” or politics.31 I believe that a participatory frame helps to shorten this gap and I would be willing to apply it in further research. Also, it should be noted that informants were not taken as representatives of a category, as our individual differences are always markedly different from one another. I strive for an ethnographic approach that takes “the person and individual subjective/behavioral differences within real communities as its modus operandi” (Herdt, 1999). 30
This gap can create issues of legitimacy or misrepresentation, as we sometimes over-generalize personal circumstances and the meanings claimed by the individuals themselves are lost or altered. So, while the claiming of sexuality may be more salient to persons with disabilities since such bodies are culturally problematized, it does not necessarily make them—on an individual level—more political. (Guldin 2000, 237)
31
Because the crip body has not been yet politicized in Greece, I did encounter the same reactions as Guildin relates: For instance, all four men in this study were engaging in sexual acts, thoughts, or behaviors that I would interpret as political, yet they would say they were simply living their lives of which sexuality is a part. Or, as Marv puts it, “I don’t put any political ties to [my sexuality]. It’s just me. I’m a horny male, like most others.” (Guldin 2000, 237)
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Anonymity is a very important matter in ethnographic fieldwork. Participants were informed prior to the interview that the information they were to give would be kept confidential and it would only be used with research purposes. They were not concerned since they knew the research would be presented in Spain. Most of them only wanted their surnames omitted, but all names have been modified. The information that is deemed essential has been respected —such as impairment, sex and other characteristics depending on circumstances— in order to allow judgment and interpretation by readers. Once the research project was about to be completed, an e-mail was sent to each participant. In this e-mail, I explained again the purpose of the research and included a list of their quotes, so that they could judge any inaccuracy and give their consent. Luckily, everyone had a positive reaction. In general, I was perceived as an ally, and very often they assumed straightforward that I was more open, more accepting and less prejudiced than our fellow citizens. These assumptions did certainly flatter me and helped the research, as they felt more comfortable and trusted me more. They also saw me as someone who had an honest interest in improving the many failings that the situation in Greece has for crips. And I do have that interest. Should I then, play the cold, objective scientist? No, I cannot. Because I do believe in an engaged Anthropology that will try to address human problems and conflicts and I want to be part of that Anthropology. Although this research does not qualify neither as Action Anthropology nor as Participatory Action Research, I strive towards a participatory model of knowledge production and social and political change.
11. Crip hints 11.1 The soul and the body The relationship of sex and love is historically a complicated one. In Christian societies, the Platonic separation of mind and body created hierarchies that have been differently applied in various communities and moments of history. Nowadays, legal unions based on love and monogamy and involving reproduction have the highest status in society —therefore, same-sex couples that comply may gain some status by means of marriage and children—. At the same time, since the sexual and feminist revolutions —which have not yet ended—, European societies have become more sex positive and, especially young people, regard sexual relationships without love bonds as an acceptable and healthy practice, although often of second rank. The number of sexual encounters and sexual partners is regarded as an indicator of appeal and attractiveness, but it is also regarded as a temporary phase that precedes “true love”. Crips embody many of the contradictions of society on their quest for dignity and happiness in sex and love.
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10.2 The slut and the asexual. The married32 and the spinster These four terms form two axes, which give as the parameters by which we are constantly asked to define ourselves. Crips are generally conceived neither as potential sexual partners nor as potential life partners. The striking contradiction is that some people do manage to break one of these two common expectations, but only one, thus creating two new images that confront the idea of the asexual unmarried crip: the married saint and the unmarried slut. Phoebe explaining that—for a period of time—she was a “slut.” She considers this to have been a badge of honor since it challenged the idea that she—a disabled woman—is not supposed to be sexual or seen as a desirable sexual partner. A slut status enabled her to challenge the cultural desexualixation [sic] of her body as well as that of her parents who told her that someday a man would love her enough to sleep with her despite the disability. (Guldin 2000, 237; emphasis added) People can have many different reasons to have sex with a crip, but, especially when we are talking about one-night stands or affairs, with difficulty they will ignore the fact of impairment. Of course, this statement implies that many disabilities are visible. But it is interesting to note, first, that many are not, and in those cases flirting and first sexual interactions are basically the same as if there was no disability, because this does not count as a factor. As Goffman puts it when talking about passing: “Where the stigma is nicely invisible and known only to the person who possesses it, who tells no one, then here again is a matter of minor concern” (Goffman 1963, 73). Also, even commonly appreciable disabilities can at some point fail to be perceived in specific contexts. 33 Greg Walloch, a comedian with cerebral palsy who uses crutches, illustrates this with a personal experience: Have you ever been talking to a cute guy at a bar or somewhere and were sitting down and you were getting along really well and then when you got up he saw your crutches and his face dropped in shock and stuff and his opinion of you changed or whatever? Yes, I met a guy and I'd been talking to him for almost four hours and when I got up to leave with him, I could tell he was surprised. He told me about this later that night, he said, 'You know, I already liked you at that point. It surprised me, but didn't change the way I felt.' We dated for many years. (Allen, n. d.) 32
I will use the term ‘marriage’ meaning a stable commitment or partnership, whether it is legally recognized in any form or not —whether by lack of wish or possibility. This will be applied when talking theoretically or hypothetically, whereas when referring to personal experiences of others, I will respect the terms chosen by them. 33
Goffman gives several examples (Goffman 1963, 74) that have become classic. Even more interesting, though, is the case of those who pass as able (Jones 1997; Samuels 2003) or cis-gendered (Venus Boyz 2002) without intending to and the practical difficulties it may bring. It helps to show “the uneasy, often self-destroying tension between appearance and identity” (Samuels 2003, 233).
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Disability can also become a reason to have sex with someone, although this can also have different meanings. Giorgos (Γιώργος), a young teacher in a wheelchair, tells me by e-mail about his many sexual experiences in Greece: When I lived in Sweden, right after my accident, one of my disabled trainers told me that his disability helps him a lot to meet women and to have sex with them, because they like what’s different. When I came back to Greece I experienced it somewhat differently. It was more like morbid curiosity34 from women, very often with very negative undertones, and some other times like something unusual,35 distinct,36 unique.37 Most women here, nevertheless —statistically and not only the ones that I know—, don’t think that I can have sex or they think that my sexual life is disturbed,38 etc. The result can be the same here, but the difference is important. I find Giorgos’ use of adjectives very interesting, as they can be interpreted literally both in a positive and in a negative way and he is aware of this possibility. Katerina (Κατερίνα), a 23-year-old student with achondroplasia who is in a wheelchair, helps me see the complexity of the matter. It is summer and she is on holidays at the beach with a group of friends. A guy comes on to her unexpectedly: “But he was honest, dude, that he only wanted sex. He didn’t try to fool me...” The way he approached her39 made direct reference to her being different: “I think people have to try new things. And I think people are polygamous, I mean, we can go with many.” Although the situation was idyllic and she was aware of the fact that this was her first real chance to have sex, she did not go for it: His personal characteristics may have been beautiful, but he was not attractive to me. I mean, imagine the scene. The moon was full that day, at night, on the beach and full moon. 34
The Greek word, ‘περιέργεια’, already contains the meaning of ‘morbid curiosity’.
35
The word ‘ασυνήθιστο’ in Greek means ‘unusual’, ‘unfamiliar’, ‘exceptional’, ‘rare’ and ‘strange’. As a translator, I am aware of the fact that I am expected to offer the foreign reader an interpretation of which meaning the speaker is referring to every specific time. But I am also aware that very often, we use words with more than one meaning —both denotative and connotative ones — exactly because of that, and some of these meanings are lost in translation, due to the lack of one-to-one correspondence. As this is an anthropological research and not a literary work with very tight space restrictions, I have decided to indicate this whenever relevant. 36
‘Ξεχωριστός’ in Greek, also ‘different’, ‘special’, ‘idiosyncratic’.
37
‘Μοναδικός’ in Greek, also ‘exceptional’, ‘singular’, ‘outstanding’.
38
But ‘διαταραγμένος’ also means ‘twisted’. Here I have serious doubts of the original meaning, as this was a written message. I assume that it depends on every person, but the idea of the crip as twisted is a very old one, nevertheless, the crip as disturbed is a more modern, politically correct view. 39
It should be taken into account that what he said comes from Katerina quoting him by memory. It would be extremely useful to get to know his point of view, and also to have been present, but unfortunately the anthropologist always works with partial and biased accounts.
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This guy was, I mean, without his shirt, etc. and I was thinking that I wanted to go to pee. The person has to inspire you. I could have told him “You know, I will go with you to do something, even though it won’t be sex” so I could say later on “You know, I was in Samothrace, and for the first time I did something.” It seems clear that in this case Katerina did not like him, but how much influence did it have the fact that he considered her “something new to try”? She conceptualizes this as a type of discrimination with negative undertones: I think that this guy, as a person, basically wants to try everything. He may have even tried it with another man or whatever, with his girlfriend, threesomes, etc., so, me, I felt... you know. Wanting it, let’s say, with a disabled because you want to have a different experience again shows a bit of discrimination. It’s... you single them out, you put them in the “new experiences”. You don’t say “I go with this girl because I like her”, you say “she’s even disabled, and therefore I want a new experience”. This type of discrimination —meaning both showing prejudice and making a distinction— is also broadly felt by transsexual individuals and by people involved in same-sex acts or relationships. This choice presents a conflict, as the concerned individual very often cannot discern how much is personal attraction and how much is “category attraction”. This is even more confusing in one-night stands in comparison with long-term sexual interactions or sex with friends or acquaintances. However, same-sex experiences is a much deeper topic in the sense that some people can perform them without identifying themselves as some kind of non-straight (“the curious heterosexual”),40 thus creating very often both social and identity conflicts. Having sex or a relationship with a disabled or a transsexual will hardly put someone in a different sexual category, 41 whereas doing the same with a person of your same sex/gender42 will almost automatically put you in a specific sexual
40
It is not uncommon that a person experiences discrepancies between their actions and their expected sexual identity or lifeway. “[S]exual agency emerges in finding a personally acceptable balance between different kinds of desires — sexual, emotional, relational, and life-desires.” (Hostetler and Herdt 1998, 266) 41
These categories, nevertheless, exist, but they are not sufficiently well known as to represent a high risk of social categorization. Someone who likes disabled people could be labeled as a devotee and someone who likes transsexuals as a transfan or T-lover. More scientific terminology exists but it would rarely be used as a social label. Attraction to disabled people has been scientifically categorized as acrotomophilia, and attraction to transsexuals as either gynemimetophilia or andromimetophilia, depending on the displayed gender. This categorization was done by John Money thirty years ago and, although is under scrutiny and change, is the more well-known terminology (Money and Kent, 1986; Money and Malgorzata, 1984). 42
I am aware that the distinction between sex and gender is very problematic. In Greek, the distinction is formed by a modifying adjective: ‘βιολογικό φύλο’ (biological sex) and ‘κοινωνικό φύλο’ (social sex). Nevertheless, some queer groups, as Queer Trans, do not accept the traditional distinction between sex and gender, as they understand that both concepts are socially constructed. Queer Trans is an anticapitalist queer group based in Athens that supports trans people and fights against discrimination, racism, sexism, homophobia, transphobia and other types of exclusions.
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orientation category. This does not mean that most people would self-identify themselves in such manner. Notwithstanding, questions remain to be answered about the legitimacy of seeking experiences with a specific characteristic or factor: whether with a crip, with a woman, with a black person, with a big boobed tranny, with a Michael Jackson fan, with a filthy rich, with a vegetarian, in a car, on a tree, or any other category you can think of. These experiences can be sought both by the novelty of it or for their arousal potential, which is also —and always— subjective. This predilection or preference for a certain characteristic has been very often stigmatized from many different fronts, 43 and it reinforces the standardization of loving and sexual models that must be followed. Sexual subcultures do not escape this standardization process, although some of them —like queer culture or post-porn culture— try harder than others. The closing of Katerina’s story reveals how crips have to fight against society’s expectation of lack of sexual appeal at a very personal level. Some time after the incident, when telling a friend about the episode, she does it in these terms: I told him, “Manolis, it happened. What I will tell you now happened; I did not make it up.” He answered: “Why would you make it up? Katerina, you underestimate the allure you can provoke in someone. This type of response, which may seem very logic and common to us, it is not as widespread as we could think. Lack of expectations, negative feedback and disbelief may make crips internalize society’s views and forecast for themselves lack of sexual and love life due to unattractiveness. In this context, “being a slut” means breaking this very strong stereotype of asexuality: One of my first opinions of myself as a person with a disability who was sexual or hoped to be sexual one day... was that none was going to find me sexually attractive. That was a really big thing. I was like holding myself to this really specific almost scary standard. Like needing to be... as groomed and as femmy and as presentable as possible because for me it was less forgivable not to look good. Because my disability and whatever else I thought it was weird about my body, like being one of the only black kids in my school and other stuff, it was like I had to make up for it always in some ways. (Bianco in The Last Taboo 2013, 00:08:21) This means that we may comply with standards of male or female sexiness which we do not agree with in order to fulfill society’s expectations and find acceptance and love —or an impression of
43
When talking, for example, about people who fancy male-to-female, a group of people detests the idea because they find transsexuals disgusting, while others hate the same idea because of the implication that male-to-female transsexuals are something different from “real females” and they should not be differentiated in any way.
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them. Notwithstanding, this breaking free can leave you in a different ditch: the inability of partnership. And I think that what I didn't realize is that is not all about people finding you sexually attractive. I was like "oh!" when I realized that people did find me attractive. I thought that my world would open up, and everything would be awesome, once people thought I was hot. And then I realized that people can think you are hot and still objectify you and not think of you as a person, and not really want to be in a relationship with you, and not take you home to mum and dad, and not see you as a real relationship potential at all. So once I realized I could fuck people, I started this mantra of "but I'm not a girlfriend potential" (Bianco in The Last Taboo 2013, 00:09:17) 11.3 The nice smile When Thomas (Θωμάς) told me that “they tell me that the first thing that conquers them is my smile”, I knew he was saying the truth, but I became suddenly skeptical of the true feelings of those uttering this apparently harmless flattery. Thomas is a young language graduate who has been tetraplegic since birth. He has indeed a nice smile, and he assures me that he smiles very often: “whatever happens to me, even when it is something bad. For example, I was going to the operating room for a surgery and you would say I was going to a playground”. Such a capacity would undoubtedly make everyone’s life a bit easier and especially for those around us. It is not whether Thomas has or has not a nice smile what troubles me, but the fact that it was the second time I heard such a “compliment” aimed at someone in a wheelchair. When I was looking for participants for the Sexuality Festival that we organized in Thessaloniki,44 a member of the team gave me two phone numbers of disabled people that she had got through a paraplegic friend named Giorgos. When I asked her how I should account for having their contact numbers she replied, casually: “Tell them Giorgos gave them to you”. The problem is that the name Giorgos is like a Manolo in Spain or a John in England, to what she added: “Giorgos, the one that is in a wheelchair and has a nice smile”. I have seen a picture of Giorgos and he has indeed a nice smile, but I am aware that they could have used many other adjectives: blond, tall, with glasses — just to mention a few physical ones, although other biographical or personality data could be used for identification (I accept that in this case only positive characteristics will be used, as they were trying to make a successful connection). The fact that they use impairment for identification purposes should not be regarded as offensive, since something that outstands statistically makes us readily identifiable. However, it can be quite
44
See more at .
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tiring to be identified always by the same characteristic, especially when it is something we were born with or have not chosen —disabled, white, Spanish— rather than by achievement or community of choice —women’s rights activist, comic writer, Olympics medalist. Regarding the nice smile, although it could be considered an inoffensive compliment, the way they expressed it made me feel that a) they consider it important information, as if it was surprising that someone in a wheelchair could have such a nice character and smile despite their condition; b) when people interact with a person with a physical difference they do not notice anything else but their face, either because they do not look at the rest of their bodies or because they are ashamed of admitting it; and that c) it seems they did not find any other attractive or positive body part worthmentioning. I am aware of the fact that it could just be a very neutral and impartial comment. It could as well be even a positive comment, since for Western cultures a smile45 is also, in a way, not entirely a physical attribute, but —along with the eyes— a window into the soul. This shows the difficulty of interpreting the other’s feeling and thoughts: could the descriptor “with a nice smile” be understood as another element of the desexualization46 of the crip? 11.4 The crippled caveman and the feminization of disability Gender identity is one of the focuses of queer studies that would be broadly enlightened by the crip approach. However, during my fieldwork I had, unluckily, very few insights into the matter. As Bianco points out in the documentary The Last Taboo “there are really interesting ways that people conceptualize disability as feminizing you and also infantalizing you” (The Last Taboo 2013, 00:12:35). Mazique Bianco is a performance artist at Sins Invalid47 and every person that watches the documentary The Last Taboo reaches a different conclusion about their48 gender identity. They offers interesting insights into gender and disability: 45
The mouth is, of course, a very sexual body part, but when someone notes your “nice smile”, they are rather implying that you are likeable and kind, than that you kiss passionately and are a master of oral sex. 46
The idea of the disabled as being an “angel”, free of sexual desire or capability, is widespread. See the short movie Ángeles. 2011. Online. Directed by Esmeralda Valderrama. Spain, Danza Mobile. Accessed May 1, 2014. https://www.youtube.com/watch?v=3Tqr2aNcqf 47
Sins Invalid is a US-based live performance group that since 2006 explores the themes of sexuality, beauty, and the disabled body. See more at . Their documentary, Sins Invalid: An Unshamed Claim to Beauty, shows their impressive work in the field and how they incubate and celebrate artists with impairments, of color, queer and gender-variant artists, that is to say, communities who have been historically marginalized in many different and similar ways. 48
By convention, the pronoun ‘they’ and its derivatives are used whenever we want to avoid indicating gender — whether it is with the purpose of making an inclusive statement or sparked by the individual’s decision of not selfidentifying in a binary gender system. Although many scholars use “they” with verbs in the plural form, whenever I am referring to a single person, I find it more adequate the use of the singular form.
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So much of what people want to believe about boys is that we're strong. In a really specific kind of way is that we can provide, is that we can take care of people, is that we can lift heavy boxes, and smooth the lawn. I guess it's been interesting being able to think of myself as a boy who is abject from that, as a boy who is definitely not inside of this prescribed idea of what a boy should be. (Bianco in The Last Taboo 2013; 00:11:11) This means that, as McRuer argues, “the system of compulsory able-bodiedness, which in a sense produces disability, is thoroughly interwoven with the system of compulsory heterosexuality that produces queerness: that, in fact, compulsory heterosexuality is contingent on compulsory ablebodiedness, and vice versa” (McRuer 2006, 2). Failing to comply with one of these two vectors could imply at least two different options for the subject: trying —desperately and more or less successfully— to prove their validity in the other aspect —ability or sexuality— or accepting the fact that they cannot meet society’s standards and embracing the restrictions and freedoms that this fact offers: Not only because I look like a girl in certain ways or I'm perceived as a girl. But also because even if I take testosterone, even if I do all of these medical things that are going to change my appearance in really intense ways, even if I do those things, I'm still going to be disabled. I'm still going to be a physically disabled boy, I'm still not going to be able to always top someone in bed, or pick them up and throw them over my shoulder and carry them away to my cave. Those are not things that I'm going to be able to do. So me interacting with someone sexually as a certain kind of male person still needs to acknowledge my disability. (Bianco in The Last Taboo 2013, 00:11:49) Most societies still offer very different models of sexuality for men and women. 49 In the prevailing Western model, the male should be successful, active, strong, promiscuous, and without feelings, while the female should be overshadowed, passive, weak, faithful, and over-sensitive. In this model, those regarded as passive and weak —which is normally the image society has of disabled individuals— are grouped in the female side of the binary system which, at best, is sometimes represented as a scale. This feminization of the disabled body can also affect sexual interactions. [I]f Gary and Marv are giving their partners the degree of sexual pleasure they claim their partners are experiencing then cultural notions of what makes a man “manly” and “masculine” are also challenged. On one hand, for a man to be a patient, sensitive lover who is willing to go slowly and focus on the woman’s entire body and on her pleasure may be seen as a more feminine model of sexuality. But if our cultural definition of being a 49
Both of which can be, of course, equally —although in different ways— oppressive. For example, see the work of The Representation Project and their 2014 documentary The Mask you Live In. See more at .
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“masculine man” is somewhat contingent on being able to sexually pleasure women, then this “feminine model” of sexuality actually increases masculinity. (Guldin 2000, 236) I did encounter some of these examples, although not many due either to the participants’ reluctance for disclosing details of their sexual interactions (or my inability to bring them up) or by their lack of sexual experiences. Alexandros (Αλέξανδρος) is a young master’s student who suffers from multiple sclerosis. He confessed having surprised a female friend who said that her sex sessions normally lasted around 15-20 minutes by admitting that he never had sex for less than an hour. This was so because sex did not involve only intercourse but massage, oral sex, kissing of boobs and other activities normally labeled as foreplay in a “masculine model”. This confirms some other accounts of “deviant” sex being less focused on intercourse and orgasm 50 and placing more effort on exploration and diversity. Examples of this are the refusal of the “got-to-have-the-orgasm-fromthe-penis syndrome” (Guldin, 236), and the focus on the tongue, fingers (Uncharted Territories 2012) and other body parts as erotic, among others. For example, as Paloma Bustos, a personal assistant shows in her personal account in a Spanish documentary: The lesson that we all learnt was that intercourse was not important. Intercourse was not important at all. The important thing was the way in which those two bodies could come together with so much love (...) It doesn’t matter if you can put your willy in or you can’t put your willy in. There are a million ways to have pleasure. (Realidades ajenas 2007, 00:08:50; my translation) This mastering of sexual skills and sexual introspection can create the feeling that disability makes better lovers (Guldin 2000, 236), inversing, therefore, the ability/disability dichotomy. This is explained beautifully by Alex Ghenis, wheelchair user: Sex is just like disability. Sex is multifaceted. Sex is about emotional connection. It’s about all sorts of physical connections. It’s about all sorts of sensations. And for people with disability there’s the ability to explore all of that. And sometimes be a little bit more creative. (Uncharted Territories 2012, 00:06:38; emphasis added) Another interviewee, Thomas, tetraplegic since birth, recalled having imagined how his wedding would be and how this action is a very common thing for girls. This comment followed my telling him that my aunt recently married a psychologist who is also tetraplegic (although from an accident). This greatly surprised him, making evident the lack of positive models. We are not
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We may note, however, that many people that do withdraw from the idea that intercourse is the main objective and means of sexual pleasure in sexual interactions, do set orgasm in its place. This being so, sexual interaction becomes a means towards orgasm —being mainly the number, but sometimes also the quality of those, the main indicator of sexual pleasure or of a successful sexual interaction.
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talking here of disabled “role models”, of those who achieve grand things —despite51 their disability— that many other non-disabled folks cannot even imagine. This “media’s fondness for presenting exceptional disabled people as inspirational” (Brown 2013) has its own risks and etiology. Although I admit how wonderful it is for me to see crips presented as superhumans52 — “the heroic crip”— instead of subhumans, I am aware that this is also a very partial representation of reality that gives clear proof of the lack of disability normalization. 11.5 The vicious circle Dimitris was not surprised by —even jealous of— an exceptional tetraplegic who had achieved great things, but of someone who had married. Nowadays marriage —and divorce, let’s recall— is a very common currency. Why then would such a small matter be noticed so acutely by someone? Because it is not a common happening for the tetraplegic community. And it is not easy to accept things that are not common —or even worse, that we have never seen— even as a possibility. This inability may not only reflect prejudice and discrimination, but a real incapacity to imagine a possibility. This lack of ability will, of course, influence in turn our likelihood of finding —or even searching— what we may want. Society, therefore, does not expect crips to marry. But it also does not expect them to have casual sex. If they do marry, they must be virtuous, faithful, not abusive53 and childless. If they have children, they must be heroic. If they have casual sex, it cannot lead to real love. It is in this chain of incoherence and methodic underestimation of all sorts of capacities —social, emotional, psychological, physical, ethical, just to mention a few— in which is really easy to get trapped. Everyone can get trapped. One of the ways of breaking this vicious circle is with practical real examples of love and sex. But, who are expected to want crips and who are crips supposed to want? 11.6 “I see you as a friend” and the obligatory nature of sameness
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This idea of the despiteness is very interesting since, first, many disabled people achieve what they do achieve regardless of their disability —i.e. for reasons that have nothing to do with it— or thanks to their disability —whether it allows the physical, psychological or motivational possibility of achievement. This word, despite, so very often heard and read when talking about crips, clearly shows society’s attempt to forget disability and place it somewhere else, out of existence, even though crips’ experiences are very often intimately linked to their bodies —“and I mean to include the mind as part of the body” (Clare, 2002)—, their impairments and their disability. 52
See the 2012 Paralympics spot by London’s Channel 4 at , where crips are presented as physically super-abled. 53
This real story about a disabled abusive partner, as sad as it is, helps battle stereotypes about crips: Gay, Raúl. 2014. “Maltratador y discapacitado” eldiario.es. April 24. Accessed April 30, 2014. http://www.eldiario.es/retrones/Maltratador-discapacitado_6_249935027.html
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To illustrate the answer I will use material from the fieldwork. It does not matter who said this, because I have heard similar statements once and over again over the course of different interviews and informal chats: They asked me, plain and simple, if I would have a relationship with another person with a disability —which is something that I have heard a lot from Greeks. Because, for Greeks, we who have a disability, in the 90% of the occasions must have a relationship —if we have one— with someone with disability. We don’t have the right to go with an ablebodied. Firstly, it is interesting to note that they use the word ‘right’, which involves a political assessment, and not some other more neutral alternatives such as ‘possibility’ or ‘chance’. Also, it is common for Greeks to regard their country as a backward society and to imagine others as much more advanced in these and other fields. Without bringing into question whether there are societies in which being disabled is easier —practically, socially and economically—, Greece is not very different to the mainstream treatment of disability and crips. These comments are not just chitchat or table talk, but also the responses they get approaching someone sexually or romantically. Thomas, our tetraplegic informant, illustrates this with his experience: Whenever I tried to get closer to the opposite sex —since primary school—, I got the same result, which I formulate as “I see you as a friend”. Whenever I approached a girl to express what I felt for her, the first answer that I got was this one, and I always tried to ask her “Why do you give me this answer straight away and you don’t let me tell you what I really feel?” These comments undoubtedly affect the crip’s self-esteem and self-expectations, especially when they do not have different experiences or knowledge of others’ experiences to counteract them or embrace the idea that other answers are possible. This feeling of injustice, prompted by not having been given a fair chance, can be worsen by the intuition that this answer is not an honest one: In all of these occasions, I saw in her eyes... Because I have this good/bad thing, I don’t know, that I can see if the other person tells me truly what they feel or if, within their words, there’s something hidden. And I saw that ultimately it was not that, but my image, that they got stuck in my disability. Although we could imagine many sharp responses as if we were watching a Hollywood comedy with happy ending —and it would be undoubtedly enlightening and profitable to research rejection coping strategies among crips—, in many occasions, crips are left with the devastating feeling of seeing their disability as an unliftable burden in their emotional and sexual lives. 43
The last time this happened, that she said “I see you as a friend”, after a while she added: “Can I ask you something, or just suggest something to you? Have you ever thought of having a relationship with someone who has the same disability or a disability similar to yours?” (...) “Do you dismiss this? You don’t find it probable?” A question and a suggestion can be very different. And the difference can be very painful. Nonetheless, approaches to this matter by other disabled people themselves can be anything but crip. Many of them, while unhappy about not finding a partner, reject the idea of being with another disabled person. They ask of society to embrace something they do not want for their own lives. This could be regarded as the embodiment of mainstream society’s value system. Notwithstanding, many come to terms and go through a transformation of personal, social and political consequences: They are not interested in the idea that monsters desire, that they are desirable and desiring bodies... that’s completely anti-establishment. (Torres, Diana J. in Muestra Marrana 2014 2014, 00:04:10; my translation) But Thomas’ reasons are of a pragmatic nature and he feels he cannot avoid taking them into account: I don’t dismiss [the idea], but because I know that my disability is very difficult in terms of independence, and especially in this field, in sexuality, it would be tremendously difficult to have a relationship with someone with the same disability I have. The obligatory nature of having sex —and not only— exclusively with people of your kind is not only a social discriminatory phenomenon, but also a complex —and old— historical and philosophical idea with deep roots and polychromatic nuances. We could go into analyzing the ideas of blood pureness and blood cleansing or the long history of state eugenics against crips, in an attempt to stop them from reproducing. Even now, this idea is vivid in the crip imaginary. Elena/Urko, a post-porn performer, says: Socially it is not on their interest that “the monsters”, that is, everyone that does not fit, breed. (TRAILER PostOp YWF 2013) But the extent of this research paper is too limited to discuss in depth these ideas, so these small hints will be deemed sufficient. Following the idea of the invisibility of heterosexuality, most cisgender individuals54 are assumed to be heterosexual. But this invisibility affects all non-normative options in general, even within the 54
Cis —and all its derivatives: cisgender, cissexual, cis-normativity, etc.— refers to a type of gender identity where an individual's experience of their own gender matches the sex they were assigned at birth. The assumption of heterosexuality works differently for the trans population, since, first of all, a big part of society mistakes transsexuality with a weird form of homosexuality. They are, however, expected to be heterosexual, so that they can, at least, fulfill the sexual orientation requirement.
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non-heterosexual community. Rarely will you hear someone —straight or queer— asking a lesbian woman: “So well, do you only date other lesbian women?” The mere thought of such a question may seem ridiculous to many or at least bring a smile onto our faces. This happens because it is something hard to conceptualize. The fact that disabled people are asked, requested or forced to match only with other disabled contains the idea that they could do otherwise. “Why don’t you go out with another wheelchair user?” contains the idea that I can imagine you with someone else, but that I deem the former an easier option for you or even the only right one. When queers are not questioned, in a way they are being denied that option. But we do know that queers go with self-identified heterosexuals —some times with not very happy consequences—, and many well-known or not so well-known stories account for it.55 This shows how Herdt’s idea of sexual lifeway can account better than the term identity for how we live through our sexuality. For society, the very act of going with someone of your same sex/gender takes you out — automatically and undoubtedly— into the queer category of pariahs.56 This does not happen with crip/able-bodied pairings, as able-bodied individuals are not automatically considered crips when they choose a partner categorized as such.57 The lack of questioning or fear is, thus, an indicator of invisibility, of non-existence in the normative social mind. 11.7 “We have normal sex” During my fieldwork, I had contact with a few non-heterosexual deaf people. They were very willing to participate, but one of their concerns was having something interesting or special to share about sexuality. The deaf people I met did not find anything unusual with their sexuality — something that it is understandable, given that it is their sexuality and we are familiar with our own experiences. In the same way, they generally do not really feel disabled. Sofia (Σωφία), a middleaged public servant, shares: The only problem I have is that I can’t hear. Medically yes, I have something, but I don’t feel disabled. Society is disabled, that’s the problem. She makes a clear distinction between impairment as something medical and disability as something social that relates to the definitions that the social model of disability works with.
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One of the last of these best-seller stories is 2014 Abdellatif Kechiche’s movie La vie d’Adèle, which has been awarded multiple prizes and is an adaption of Julie Maroh’s comic Le bleu est une couleur chaude (Blue Is the Warmest Color). 56
This could be, though, qualified with the common and old idea of the “corruption theory”, in which a non-queer is corrupted by a queer into such behaviors or even identity. 57
This does not mean that the able-bodied person does not face discrimination or lack of understanding, or even stigma by association, what Goffman calls “courtesy stigma” (Goffman 1963, 29-31).
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Society —or the State58— are those that fail to adapt to individual’s needs —especially to those that are statistically “irrelevant”. But it is deeper than that, disability is inseparable from identity. Aphroditi (Αφροδίτη), a highschool teacher on her thirties, tries to explain what deafness means: When you ask me what deafness means... I’ve got so used to it... deafness is me. I can’t answer. Disability can, therefore, be a self-identifying process, although many non-disabled and disabled people are not used to this and have difficulty understanding this position. To be a crip is to selfidentify as disabled with pride and celebration. Whereas sexual orientation, gender, race, are all considered things that you would want to assert, and be proud of and have it be a part of your daily life, and daily existence and interaction. A disability is something you want to minimize as much as possible, because it's a problem, it's not hot, it's not sexy, you can't dress it up, you can't look cute with it, you can't dance with it, but you can: you can do all of those things. (Bianco in The Last Taboo 2013) The fact that deafness is a part of identity and not a burden makes it easier to regard themselves as “normal”. Basilis (Βασίλης), an occupational therapist is categorical about this: Deaf people have normal sex, they don’t have any problem. This was the opinion he shared both during a private interview and also at the Festival of Sexuality during the event “Yes, we fuck! Open discussion on sexuality and disability” in front of circa two hundred people. During our private interview (that happened before the Festival), he elaborated and explained this idea: For example, a disabled person with no legs should explain the topic further. Their sexual practices, how difficult they are due to their impairment. We, the deaf people, we don’t have any specific difficulty in sexuality. The deaf, the blind, these two groups, with respect to sexuality, they don’t have any specific problem; their disability doesn’t affect them in sex. But when the disability is a mobility disability, tetraplegics, paraplegics, with cerebral palsy, their disability affects them in sex. Although we could focus on these “practical difficulties” or differences in sexual practice for people with mobility impairments, when you hear their opinions, it is not on that what they normally focus on when talking about sexuality. There are several reasons that explain why they do not focus on these practical difficulties of sexual encounters that may have such a morbid interest for others. The 58
This idea is well known in the social model of disability and it has even given the title to Deborah A. Stone’s book The Disabled State (Temple University Press, 1986).
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first reason is the taboo around the topic in Greek society, but that just accounts for a small part of the explanation. Another reason is the often lack of experience of such sexual encounters that directly derives from their difficulties in engaging in social contact. Impaired people are not as much concerned about how to get an erection, how to get to the bed, how to perform oral sex, what Kama sutra positions they can practice,59 etc., as they are interested —and sometimes worried— about how to facilitate sexual approaches, how to battle desexualization, how to avoid people’s prejudice and fear, how to look sexy —for others and themselves—, how to create intimate spaces and other questions that very often do not get classified as sexual and that are definitely social and not medical. 11.8 The representation of (crip) sex: I’m gonna crip sex In this section I will just give some hints of how crip sex is —or can be— and how it can be represented. This topic could be developed further, especially with the recent developments in postporn and its inclusion of crip porn.60 In The Last Taboo, a young couple, Matthew Clark and Morgan Jennifer, both wheelchair basketball players, verbally describe their first time having sex: Matthew: The first time we actually had sex lasted very quickly. Not for the usual reasons though. (both laugh) Yeah, yeah, we were just doing the usual, messing around on the floor. Uh, and you like, I was on my back, and then you hopped on, slid in. And then you had to hop. You hopped off in what, ten seconds or so? Morgan: Little bit longer than that. At least two minutes. Matthew: What?! Morgan: Yeah. (both laugh) I was stuck, I couldn’t get back get off. So I was trying to figure out how to get off. (...) He fell sleep afterwards. And I was like "Well, that was it. That was sex. Everyone talks about it for ever, and that was it? Wow..." I was so misled. (The Last Taboo 2013, 00:31:02) Katerina, our informant with achondroplasia, is very critic of such a scene. First, she did not see the use of having such an explicit description of such an intimate act and, especially, she felt that they were trying very hard to portrait their sex as being normal, when that is not necessary. But it is
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Although, of course, they are also concerns. See Gabriel Viti’s self-edited illustrated book Il Kama Sutra dei disabili at . 60
This has been so far quite successful, as its reception in the Muestra Marrana 2014 has shown: The crip post-porn section was expected with much eagerness, the room was full, completely full, we had never seen the Hangar so full, 100 people were left out. (Torres, Diana J. in Muestra Marrana 2014 2014, 00:04:10; my translation)
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really like that? In my opinion, the scene just tells “another first time” experience in a humorous and sweet way. The scene is neither melodramatic nor does it try to teach a lesson of the type “You see, crips also have sex. And the sex we have is...”, but it is told as if you were sharing a personal experience with a friend, with someone you respect and who you consider to be at your same level. One of the most powerful tools that crips have is the cripping of sex, which means the refusal of able-bodied standards and the abandonment of the quest for normalcy to which many activists have dedicated their efforts. Rather than play the part people are expecting of the “heroic cripple” or the “I can be sexy too” within your able-bodied framework. Actually, control the terms of the debate and say, “I’m gonna crip sex”. I’m gonna make my sexuality as visible as a person with a disability and that’s hot. Because, really, what’s hot is being real. (Berne in Uncharted Territories 2012, 00:06:00) There are many ways of approaching the cripping of sex. Just as an example, we could mention the notion of sex as a private thing between two adults. These two people needed help from others in order to have sex and their friends accepted to help them. In which ways does this scene challenge our notion of what is “normal and right”? The important thing was the way in which those two bodies could come together with so much love in front of people, isn’t it? I think that was... I get emotional. It’s like so beautiful! How can there be three other people... Imagine, five people in a small room, in Leganés [a town near Madrid], where there was only space for two beds and a bedside table. Imagine the two beds together, the small table on the side, the cupboard somewhere else. And five happy people who enjoy the moment. Saying: “isn’t it beautiful?” You see, sex has no borders. (Bustos in Realidades ajenas 2007, 00:09:10; my translation) The mainstream sexual value system currently lacks the tools to incorporate and celebrate sexualities that deviate from the norm. Crip sex constantly reminds us that we must redefine beauty and sexual social standards in order to develop a more inclusive and accepting system based on the concept of benign sexual variation. This new system —that we call crip— will allow us to better communicate our needs and wishes as well as to express passion, desire, love and beauty. To receive, to give, to create pleasure and happiness. As Aphroditi said when talking about Sign Language and what image should deaf people pass on: Don’t show disability, show the beautiful side of disability! Sex is —and when it is not, it can be— a very beautiful side of life that connects us with ourselves.
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12. And now, what? Possible research questions and art projects As it has already been explained, one of the main goals of this research project is to provide new ways of questioning identity, sexuality and ability. I would like to conclude with the suggestion of further research questions: Given the traditional restrictions on the anthropological study of sex, why not trying to implement a new Masters and Johnson approach —i.e. direct observation— to crip sex? This could be focused on the description of interactions with the aim of increasing our sexual imagery, or it could analyze power struggles, active and passive roles, pleasure experience and a broad range of other topics. An anthropological contrast of Body Integrity Identity disorder (BIID) and Gender Identity Disorder (GID) experiences in any of their aspects would be of high interest for this new field of crip queer studies. Especially, it could focus on the experience of those who identify with both disorders, but it could also analyze the transformation of a ‘disorder’ into an ‘identity’, as well as the possibilities that medical categories open up for new identities to emerge and be legitimatized. Sex education and family role models undoubtedly have an impact in our sexual lifeways. How do crips of crips’ (COC)61 approach to sexuality differs from that of crips of normals (CON)? Which are the differences when we introduce the variable of queerness? It has already been argued that crip parents have the capacity of providing their crip children with skills and examples —especially in the field of sexuality— that non-crip parents (O’Toole and Doe 2002) will never be able to offer. It is worth digging further into these extraordinary stories. What is the intersection of our sexual lifeway and (dis)ability? Is the body marked by disability faced differently by women and men? And what about those that are both, none, something in between or something else? What do transsexual and gender-variant individuals show us about the interconnections of these ideas? What is the contemporary meaning of family? What can the cripping of polyamory —in all of its forms— reveal about family, solidarity bonds and independence? Is political activism the only way to fight for change? What changes can crip culture spark, both on the performers and on the audience? It would be highly interesting to do this within a group of artists like Sins Invalid, who precisely works with the topics of beauty, sexuality and (dis)ability with a very wide range of performers. 61
COC and CON are newly coined terms that I suggest by analogy with the terminology used in Deaf culture: DOD for Deaf of Deaf and CODA for Child of Deaf Adult.
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Post-porn and pornterrorism are relatively new sex-positive movements that have just started to look into crip culture. How subversive is crip post-porn and in what ways exactly? Is crip porn —or even crip prostitution— today’s border of sexual oppression of non-normative bodies? What does the representation of such bodies mean for the crip community, the porn industry and the post-porn community? These are just some examples of the course that further research could take. In general, the perspective of (dis)ability should be included into many of the topics that are under current development, not with the goal of finding the most exotic and weird individuals, but aiming either to build a scientific complexity that is closer to reality or to approach humanity from an enlightening point of view. If further research were to be carried out, it would be highly recommended to do it within a participatory frame. The key characteristic of the Participatory Action Research (PAR) approach has been said to be the collaboration between the community and the researcher(s) (Suchowierska and White 2003, 438). This collaboration is inherent to any social research that involves other human beings. Furthermore, PAR often stresses the importance of the learning process that takes place during the research, as well as the expert roles of those considered “passive objects of study” in other approaches. PAR is especially adapted to complex and dynamic social contexts (Suchowierska and White 2003, 440) and offers the researcher the opportunity to study something relevant, useful and socially valid for the community. Furthermore, having read bibliography and having shared conversations with the communities I was studying, I realized that crip culture is almost nonexistent in Greece —as in most other countries— and I decided that I wanted to be part of that effort, because, as Anne Finger said already in 1992, “the formation of culture is a key part of winning our freedom” and it is [t]ime for us to write, film, perform, read, talk porn. I’m serious. It’s time. I want to get hot and bothered: I want to read about wheelchairs and limps, hands that bend at odd angles and bodies that negotiate unchosen pain, about orgasms that aren’t necessarily about our genitals, about sex and pleasure stolen in nursing homes and back rooms where we’ve been abandoned, about bodily —and I mean to include the mind as part of the body— differences so plentiful they can’t be counted, about fucking that embraces all those differences. (Finger 1992) Because of this, I decided to join the common effort and try to produce a piece of work that could be added to crip culture. The first idea is a short movie for which I have already written the script. However, due to time restrictions of the crew, it has been decided to postpone it for after the summer. 50
I had time, therefore, to start a different project, this time a theatre performance that will take place on the 31st of May, right before my leaving. This is, however, a more conservative piece that, although it addresses topics of discrimination and (in)equality, it does only use a non-normative body and it lacks, in my opinion, an authentic crip perspective —how is an authentic crip perspective remains, of course, a topic of intense debate. However, given the state of the art of crip culture in Greece, it is an important first step in the breaking of taboos and the training of performers and audiences in these topics. The aim of all this is, together with the enjoyment that the production of art produces, the returning to the community some of the fruits of my learning. Because research —like life— is not a one-way path, but a maze of interconnected experiences.
13. Conclusions Disability “(in its mutability, its potential invisibility, its potential relation to temporality, and its sheer variety) is a particularly elusive element to introduce into any conjunctural analysis” (Berubé in McRuer 2006, “Foreword”, viii). Notwithstanding, we are more similar than what we are sometimes led to believe, and we share a common culture. This causes “dominant cultural notions of sexuality and disability [to be] —at times— simultaneously challenged and reinforced by [crips] as they self-claim their respective sexualities” (Guldin 2000, 234). The stigmatized individual tends to hold the same beliefs about identity that we do; this is a pivotal fact. His deepest feelings about what he is may be his sense of being a “normal person,” a human being like anyone else, a person, therefore, who deserves a fair chance and a fair break. (Goffman 1963, 7) Crip culture tries to break from the burden that the attempt to be like everybody else imposes not only on crips, but on every one of us. It strives to “remove stigma from the differentness” (Goffman 1963, 114) and to fill that hole with pride62 and celebration. Because it acknowledges the fact that “[t]he stigmatized and the normal are part of each other” (Goffman 1963, 135) and it fights for a more inclusive and fair world.
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Inspired by other minority movements —such as Black Pride and, especially, the Gay Pride—, the disability community has its own version. Probably the oldest in the world, the Disability Pride Parade in Chicago will celebrate this July 2014 its 11th anniversary. One of its overall mission is, as stated in their website: To promote the belief in society that Disability is a natural and beautiful part of human diversity in which people living with Disabilities can take pride. See more at .
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Anthropologists are said to study “extremely small matters (...) from the direction of exceedingly extended acquaintances” (Geertz 1973, 21) in order to approach a broader interpretation of reality and human nature: [Anthropologists confront] the same grand realities that others —historians, economists, political scientists, sociologists— confront in more fateful settings: Power, Change, Faith, Oppression, Work, Passion, Authority, Beauty, Violence, Love, Prestige (Geertz 1973, 21) It goes from the small to the great —both to the big and the grand—, building in the way many other insights into human experience. Therefore, what is the topic of this work? From the realities Geertz mentions, I could agree that my work aims to deal —at least partially— with some of them: Oppression, Love, Beauty; but I believe that the main focus is on Difference. Difference in Humanity. The idea that difference is good —and not only necessary and inevitable. The idea that difference can give us freedom. I cannot avoid closing up this paper with this magnificent quote from Jackson McBrayer (Sex(abled) 2009, 00:13:55): Please, go out and fuck the disabled!
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14. Works cited Allen, Mark. No date. “MarkAllenCam’s Disability Interviews: Greg Walloch” in Mark Allen. Accessed March 1, 2014. http://www.markallencam.com/disabilitygreg.html Bérubé, Michael. 2006. “Foreword. Another Word Is Possible” in Crip Theory. Cultural Signs of Queerness and Disability. New York and London: New York University Press, vii-xi. Brown, Mark. 2013, May 14. “Viewpoint: Do famous role models help or hinder?” BBC News. Ouch disability blog. Accessed November 1, 2013. http://www.bbc.com/news/blogs-ouch22514215 Clare, Eli. 2002. “Sex, Celebration, and Justice: A Keynote for QD2002” Disability Social History Project. Last updated February 6, 2009. Accessed March 1, 2014. http://www.disabilityhistory.org/dwa/queer/paper_clare.html doubledickdude. 2014. “Frequently Asked Questions” in Official Tumblr of the Real DoubleDickDude [blog], January 7. Accessed February 10, 2014. http://diphallicdude.tumblr.com/ Fine, Gary Alan. 1993. “Ten lies of ethnography: Moral Dilemmas of Field Research” Journal of Contemporary Ethnography 22: 267-294. Accessed October 18, 2013. doi: 10.1177/089124193022003001 Finger, Anne. 1992. “Forbidden Fruit” New Internationalist 233. Accessed February 1, 2014. http://newint.org/features/1992/07/05/fruit/#sthash.42aWPL7l.1CZlS2S5.dpuf Gay, Raúl. 2014, April 24. “Maltratador y discapacitado” eldiario.es. Accessed April 30, 2014. http://www.eldiario.es/retrones/Maltratador-discapacitado_6_249935027.html Geertz, Clifford. 1973. The Interpretation of Cultures. Selected essays. New York: Basic Books. Giffney, Noreen. 2009. “Introduction: The ‘q’ Word” in The Ashgate Research Companion to Queer Theory, edited by Noreen Figgney and Michael O’Rourke. Accessed January 15, 2014. http://www.ashgate.com/pdf/SamplePages/Ashgate_Research_Companion_to_Queer_Theory _Intro.pdf Goffman, Erving. 1963. Stigma. Notes on the management of spoiled identity. New York: Touchstone Edition, 1986. Guldin, Anne. 2000. “Self-Claiming Sexuality: Mobility Impaired People and American Culture” Sexuality and Disability 18 (4), 233-238. doi: 10.1023/A:1005690009575 Guzmán, Paco and Raquel (Lucas) Platero. 2012. “Passing, enmascaramiento y estrategias identitarias: diversidades funcionales y sexualidades no-normativas” in Intersecciones: 53
cuerpos y sexualidades en la encrucijada, edited by Raquel (Lucas) Platero. Barcelona: Bellaterra, 125-158. Hammersley, Martyn and Paul Atkinson. 1995. Ethnography. Principles in Practice. London and New York: Routledge. 2nd edition. Hanman, Natalie. 2013, August 22. “Eve Kosofsky Sedgwick and Judith Butler showed me the transformative power of the word queer” The Guardian. Accessed March 1 2014. http://www.theguardian.com/profile/nataliehanman Herdt, Gilbert and Andrew J. Hostetler. 1998. “Culture, Sexual Lifeways, and Developmental Subjectivities: Rethinking Sexual Taxonomies” Social Research 65:2, 249-290. Accessed January 20, 2014. Herdt, Gilbert. 1999. “Clinical Ethnography and Sexual Culture” Annual Review of Sex Research 10:1, 100-120. Accessed January 20, 2014. doi: 10.1080/10532528.1999.10559776 Jones, Megan. 1997. “‘Gee, you don't look handicapped...’ Why I use a white cane to tell people that I’m deaf” The Ragged Edge, web edition. July/August. Accessed April 15, 2014. http://www.ragged-edge-mag.com/archive/look.htm Kellett, Peter. 2009. “Advocacy in Anthropology: Active engagement or passive scholarship?” Durham Anthropology Journal 16 (1): 22-31. Accessed September 30, 2013. http://www.dur.ac.uk/anthropology.journal/vol16/iss1/kellett.pdf Kramer, Gary M. 2006. “Greg Walloch (with Eli Kabillio): F**k the disabled” in Independent Queer Cinema: Reviews and Interviews, 104-10.8 Accessed January 15, 2013. http://books.google.gr/books?id=tiw7ET-wCWwC&hl=es&source=gbs_navlinks_s Kuhn, Thomas S. 1962. The Structure of Scientific Revolutions. Chicago and London: The University of Chicago Press, 1996. Third edition. Llopis, María. 2010. El postporno era eso. Barcelona: Melusina. Maalouf, Amin. 1998. Identidades asesinas. Madrid: Alianza Editorial. Mairs, Nancy. 1986. “On Being a Cripple” The Writer’s Presence. Boston: Bedford/ St. Martin’s, 2012, 142-151. Markowitz, Fran and Michael Ashkenazi (eds.). 1999. Sex, Sexuality and the Anthropologist. Illinois: University of Illinois Press. massqueerraid. 2014, May 6. “Περί βδελυγμάτων…” [About Bdelugma] in —massqueerraid [blog]. Accessed May 7, 2014. http://massqueerraid.wordpress.com/ McRuer, Robert. 2006. Crip Theory. Cultural Signs of Queerness and Disability. New York and London: New York University Press. 54
McRuer, Robert. 2010. “Disabling Sex. Notes for a Crip Theory of Sexuality” GLQ: A Journal of Lesbian and Gay Studies 17 (1), 107-117. Accessed November 18, 2013. doi: 10.1215/10642684-2010-021 Money, John and Kent W. Simcoe. 1986. “Acrotomophilia, sex and disability: New concepts and case report”. Sexuality and Disability 7 (1/2): 43-50. doi: 10.1007/BF01101829 Money, John and Malgorzata Lamacz. 1984. “Gynemimesis and gynemimetophilia: Individual and cross-cultural manifestations of a gender-coping strategy hitherto unnamed”. Comprehensive Psychiatry 25 (4): 392–403. doi: 10.1016/0010-440X(84)90074-9 O’Toole, Corbett Joan and Tanis Doe. 2002. “Sexuality and Disabled Parents With Disabled Children”. Sexuality and Disability, 20 (1), 89-101. doi: 10.1023/A:1015290522277 Oliver, Mike. 1990, July 23. “The individual and social models of disability” Paper presented at Joint Workshop of the Living Options Group and the Research Unit of the Royal College of Physicians on People with established locomotor disabilities in hospitals. Accessed January 15, 2014. http://disability-studies.leeds.ac.uk/files/library/Oliver-in-soc-dis.pdf. Oliver, Mike. 1996. “Defining impairment and disability: issues at stake”. In Exploring the Divide, edited by Colin Barnes and Geof Mercer, 29-54. Leeds: The Disability Press. Accessed January 15, 2014. http://www.disability.co.uk/sites/default/files/resources/ex%20div%20ch3.pdf Pickett, Brent. 2011. “Homosexuality” in The Stanford Encyclopedia of Philosophy, edited by Edward N. Zalta. Accessed January 15, 2014. http://plato.stanford.edu/archives/spr2011/entries/homosexuality/. Plummer, Ken. 1984. “Sexual Diversity: A Sociological Perspective” in The Psychology of Sexual Diversity, edited by Kevin Howells, 219-253. Oxford: Basil Blackwell. Accessed January 24, 2014. http://kenplummer.files.wordpress.com/2012/07/sexual-diversity-a-sociologicalperspective.pdf Preciado, Beatriz. 2010. “Posporno: excitación disidente” Parole de queer 4, 12-19. Accessed January 15, 2014. http://www.scribd.com/fullscreen/80232942?access_key=key316k81whbmxollpnsyk Riot, Coco. 2010. Llueven queers. Coco Riot Publishers. Accessed February 18, 2014. http://issuu.com/cocoriot/docs/lluevenqueers?e=3432867/2912517 Rubin, Gayle S. 1984. “Thinking Sex: Notes for a Radical Theory of the Politics of Sexuality” in Pleasure and Danger, edited by Carole S. Vance. Boston and London: Routledge & Kegan Paul, 143-179. Accessed January 18, 2014. http://www.feminish.com/wpcontent/uploads/2012/08/Rubin1984.pdf 55
Samuels, Ellen. 2003. “My body, my closet. Invisible Disability and the Limits of Coming-Out Discourse” GLQ: A Journal of Lesbian and Gay Studies 9 (1-2): 233-255. Accessed November 18, 2013. doi: 10.1215/10642684-9-1-2-233 Sandahl, Carrie. 2003. “Queering the crip or cripping the queer? Intersections of Queer and Crip Identities in Solo Autobiographical Performance” GLQ: A Journal of Lesbian and Gay Studies 9 (1-2), 25-56. Accessed February 15, 2014. doi: 10.1215/10642684-9-1-2-25 Sederholm, Jillian. 2014. “Here are Facebook’s 56 new gender identity options” Sillicon Valley, February 13. Accessed May 1, 2014. http://www.siliconvalley.com/facebook/ci_25134482/here-are-facebooks-56-gender-identityoptions?source=autofeed Sheiner, Marcy. 2007, May 24. “Disabled Performing Pioneers” Dirty Laundry. I write in the laundromat. Accessed March 1, 2014. http://marcys.wordpress.com/2007/05/24/disabledperforming-pioneers/ Sherry, Mark. 2013. “Crip Politics? Just... No” the feminist wire. November 23. Accessed February 18, 2014. http://thefeministwire.com/2013/11/crip-politics-just-no/ Singer, Merrill. 1990. “Another Perspective on Advocacy” Current Anthropology 31 (5): 548-550. Accessed October 8, 2013. doi: 10.1086/203897 Solomon, Andrew. 2012. Far From The Tree. Parents, Children, And The Search For Identity. New York: Simon & Schuster. Stone’s Deborah A. 1986. The Disabled State. Philadelphia: Temple University Press. Suchowierska, Monika and Glen W. White. 2003. “Investigación-acción participativa y discapacidad. Pautas para evaluar el rigor científico y la naturaleza colaboradora” Apuntes de Psicología 21 (3): 437-457. Accessed November 18, 2013. http://www.cop.es/delegaci/andocci/files/contenidos/VOL21_3_3.pdf Summer, Red. 2013, July 26 “Op-ed: Being Black, Lesbian, and Muslim In The South” Advocate.com. Accessed March 1, 2014. http://www.advocate.com/commentary/2013/07/26/op-ed-being-black-lesbian-and-muslimsouth Tillett Wright, iO. 2012. “Fifty shades of gay” Talk given at TEDxWomen 2012, December 1, San Francisco. Accessed December 28, 2013. http://new.ted.com/talks/io_tillett_wright_fifty_shades_of_gay Torres, Diana J. 2001. Pornoterrorismo. Tafalla: Txalaparta.
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Velasco, Honorio and Díaz de Rada, Ángel. 1997. La lógica de la investigación etnográfica. Un modelo de trabajo para etnógrafos de la escuela. Madrid: Trotta, 2009. 14.1 Videos Ángeles. 2011. Online. Directed by Esmeralda Valderrama. Spain, Danza Mobile. Accessed May 1, 2014. https://www.youtube.com/watch?v=3Tqr2aNcqfc Breathing Lessons: The Life and Work of Mark O’Brien. 1996. Online. Directed by Jessica Yu. USA, Incrustable Films & Pacific News Service. Accessed November 15, 2013. http://www.snagfilms.com/films/title/breathing_lessons Disability Culture Rap. 1994. Online. Directed by Jerry Smith. Based on Cheryl Marie Wade’s text. US, Advocating Change Together. Accessed April 15, 2014. https://www.youtube.com/watch?v=j75aRfLsH2Y and https://www.youtube.com/watch?v=WTO2vn0dkaU Muestra Marrana 2014. 2014. Online. Unknown director. Spain, yes, we fuck! Accessed April 15, 2014. https://vimeo.com/89842316 Realidades ajenas. 2007. Online. Directed by Rosa Blas Traisac. Spain, la noche del cazador. Accessed April 28, 2014. https://www.youtube.com/watch?v=HP7ltOCZrOA and https://www.youtube.com/watch?v=-1IQRo9bJrU (two parts) Sex(abled) — Disability Uncensored. 2009. Directed by Amanda Hoffman. USA, Amanda Hoffman. Accessed March 15 2014.https://vimeo.com/6842318 Sins Invalid: An Unshamed Claim to Beauty. 2013. DVD. Directed by Patty Berne. USA, Sins Invalid. The Last Taboo. 2013. Online. Directed by Alexander Freeman. USA, Outcast Productions. Accessed February 10, 2014. http://thelasttaboodocumentary.com/ TRAILER PostOp YWF. 2013. Online. Unknown director. Spain, yes, we fuck! Accessed April 15, 2014. https://vimeo.com/70838857 Uncharted Territories. An Exploration of Disability and Sexuality. 2012. Online. Directed by Johanna Williams. USA. Accessed April 15 2014. https://vimeo.com/42847406 Venus Boyz. 2002. DVD. Directed by Gabrielle Baur. Germany, Onix Films. Whole. 2003. DVD. Directed by Melody Gilbert. Bulgaria, Frozen Feet Films.
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15. Attachments Attachment I TRANSLATION (ENGLISH)
ORIGINAL (GREEK)
Giorgos (Γιώργος), a young teacher in a wheelchair (by e-mail) When I lived in Sweden, right after my Όταν ζούσα στην Σουηδία, τον πρώτο καιρό μετά το accident, one of my disabled trainers told me ατύχημά μου, μου είχε πει ένας ανάπηρος that his disability helps him a lot to meet εκπαιδευτής μου πως η αναπηρία του τον βοηθά women and to have sex with them, because πολύ στο να γνωρίζει γυναίκες και να κάνει σεξ μαζί they like what’s different. When I came back τους, επειδή τους αρέσει πολύ το διαφορετικό. Όταν to Greece I experienced it somewhat γύρισα στην Ελλάδα το έζησα κάπως αλλιώς. Πιο differently. It was more like morbid curiosity πολύ σαν περιέργεια από τις γυναίκες, αρκετές from women, very often with very negative φορές με πολύ αρνητική χροιά, και άλλες ως κάτι undertones, and some other times like ασυνήθιστο, ξεχωριστό, μοναδικό. Οι περισσότερες something unusual, distinct, unique. Most πάντως εδώ-στατιστικά και μόνο με αυτές που έχω women here, nevertheless —statistically and γνωρίσει εγώ- δεν πιστεύουν ότι μπορώ να κάνω σεξ not only the ones that I know—, don’t think ή πως η σεξουαλική μου ζωή είναι διαταραγμένη that I can have sex or they think that my κ.ά. Το αποτέλεσμα εν τέλει μπορεί να είναι το ίδιο sexual life is disturbed, etc. The result can be και εδώ, αλλά η διαφορά είναι σημαντική. the same here, but the difference is important.
Katerina (Κατερίνα), a 23-year-old student with achondroplasia, wheelchair user His personal characteristics may have been Μπορεί να ήτανε όμορφα τα προσωπικά του beautiful, but he was not attractive to me. I χαρακτηριστικά, αλλά δεν μου φαινόταν καθόλου mean, imagine the scene. The moon was full γοητευτικός. Δηλαδή, σκέψου που ήτανε και το that day, at night, on the beach and full moon. σκηνικό, ήτανε πανσέλληνος εκείνη την μέρα, This guy was, I mean, without his shirt, etc. νύχτα, παραλία και πανσέλλινος; Αυτός, ξέρω γω, and I was thinking that I wanted to go to pee. χωρίς μπλουζα κτλ και εγώ σκεφτόμουνα ότι θέλω The person has to inspire you. I could have να πάω να κατουρήσω. Είναι να σου το βγάζει ο told him “You know, I will go with you to do άνθρωπος. Και θα μπορούσα να πω ότι «Ξέρεις, something, even though it won’t be sex” so I εγώ θα πάω μαζί του και θα κάνω κάτι μαζί του, και could say later on “You know, I was in χωρίς να είναι σεξ» για να πω «ξέρεις, ήμουνα στο Samothrace, and for the first time I did Ποσίδι, και πρώτη φορά έκανα κάτι». something.” I think that this guy, as a person, basically Θεωρώ ότι αυτός, σαν άτομο, απλά θέλει να wants to try everything. He may have even δοκιμάσει τα πάντα. Μπορεί να έχει δοκιμάσει tried it with another man or whatever, with και με άνδρα, ή με τη γκόμενά του οτιδήποτε, his girlfriend, threesomes, etc., so, me, I felt... τρίο κτλ, οπότε, εγώ, ένιωσα... λέω. Να το θες ας you know. Wanting it, let’s say, with a πούμε με κάποιον ανάπηρο επειδή θες να έχεις disabled because you want to have a different μια άλλη εμπειρία πάλι είναι ρατσιστικό λίγο. experience again shows a bit of Είναι... τον διαχωρίσεις, του βάζεις σε «νέες discrimination. It’s... you single them out, εμπειρίες». Δεν λες «πάω με αυτή την κοπέλα you put them in the “new experiences”. You γιατί μ’αρέσει», λες είναι και ανάπηρος, οπότε don’t say “I go with this girl because I like θέλω μια νέα εμπειρία. her”, you say “she’s even disabled, and therefore I want a new experience”.
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I told him, “Manolis, it happened. What I will tell you now happened; I did not make it up.” He answered: “Why would you make it up? Katerina, you underestimate the allure you can provoke in someone.
Αυτά που έγιναν και που θα σου πω τώρα, έγιναν, δεν τα έβγαλα από το μυαλό μου». Μου λέει «Γιατί να τα έβγαλες από το μυαλό σου; Κατερίνα, υποτιμάς τη γοητεία που μπορεί να προκαλείς σε κάποιον.
[quoting a guy] I think people have to try new Εγώ πιστεύω ότι πρέπει ο άνθρωπος να δοκιμάσει things. And I think people are polygamous, I καινούργια πράγματα» «Και θεωρώ ότι ο άνθρωπος mean, we can go with many. είναι πολυγαμικό, δηλαδή, ότι μπορεί να πηγαίνει με πολλούς. Anonymous They asked me, plain and simple, if I would have a relationship with another person with a disability —which is something that I have heard a lot from Greeks. Because, for Greeks, we who have a disability, in the 90% of the occasions must have a relationship —if we have one— with someone with disability. We don’t have the right to go with an ablebodied.
Και με ρώτησαν, σκέτο, αν θα έκανα σχέση με ένα άλλο άτομο με αναπηρία, πράγμα που το έχω ακούσει αρκετά από Έλληνες. Γιατί, για τους Έλληνες, εμείς που έχουμε αναπηρία, 90% πρέπει να κάνουμε σχέση –αν θα τη κάνουμε– με άτομο με αναπηρία. Δεν έχουμε δικαίωμα να πάμε με αρτιμελή.
Thomas (Θωμάς) is a young language graduate who has been tetraplegic since birth Whenever I tried to get closer to the opposite Στις προσπάθειές μου να έρθω σε επαφή πιο sex —since primary school—, I got the same κοντινή με το αντίθετο φύλο –από τα σχολικά μου result, which I formulate as “I see you as a χρόνια- έιχαν το αποτέλεσμα του τύπου που friend”. Whenever I approached a girl to ονόμασα εγώ «Σε βλέπω σαν φίλο», οπότε πήγαινα express what I felt for her, the first answer να εκφράσω στην κοπέλα το τι νιώθω για εκείνη, η that I got was this one, and I always tried to πρώτη απάντηση που έπαιρνα ήταν αυτή, και μετά ask her “Why do you give me this answer στη προσπάθειά μου να την ρωτήσω «Γιατί straight away and you don’t let me tell you κατευθείαν δίνεις αυτή την απάντηση, και δεν με what I really feel?” αφήνεις να σου πω πραγματικά τι νιώθω;» In all of these occasions, I saw in her eyes... Και το άλλο ήταν ότι 100% όλες τις φορές που Because I have this good/bad thing, I don’t έτυχε αυτό το πράγμα, έβλεπα στα μάτια –γιατί έχω know, that I can see if the other person tells αυτό το κακό/καλό, δεν ξέρω τι σημαίνει, μπορώ να me truly what they feel or if, within their καταλάβω αν ο άλλος μου λέει πραγματικά αυτό words, there’s something hidden. And I saw που νιώθει ή αν μέσα στις λέξεις κρύβεται κάτι that ultimately it was not that, but my image, άλλο– και έβλεπα ότι δεν ήταν στην ουσία αυτό, that they got stuck in my disability. αλλά ήταν η εικόνα μου, που κολλούσαν στην αναπηρία μου. The last time this happened, that she said “I see you as a friend”, after a while she added: “Can I ask you something, or just suggest something to you? Have you ever thought of having a relationship with someone who has the same disability or a disability similar to yours?” (...) “Do you dismiss this? You don’t find it probable?”
Την τελευταία φορά που έγινε αυτή η φάση. Αφού έπεσε αυτό το «Σε βλέπω σαν φίλο», αμέσως μετά, μετά από λίγη ώρα, μου λέει «Να σε ρωτήσω κάτι, να σου κάνω μια πρόταση, βασικά; Έχεις σκεφτεί ποτέ να κάνεις σχέση με άλλο άτομο που έχει την ίδια ή παρόμια αναπηρία μ’εσένα;» (...) «Το απορρήπτεις αυτό... δηλαδή, δεν το βρίσκεις πιθανό;»
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I don’t dismiss [the idea], but because I know that my disability is very difficult in terms of independence, and especially in this field, in sexuality, it would be tremendously difficult to have a relationship with someone with the same disability I have. The only problem I have is that I can’t hear. Medically yes, I have something, but I don’t feel disabled. Society is disabled, that’s the problem.
Δεν το αποκλείω, αλλά επειδή ξέρω ότι η αναπηρία μου είναι αρκετά δύσκολη στην αναξαρτησία και ειδικά σ’αυτό τον τομέα, στη σεξουαλικότητα. Θα ήτανε υπερβολικά δύσκολο να κάνω σχέση με ένα τέτοιο άτομο που έχει την ίδια αναπηρία. Το μόνο πρόβλημα που έχω είναι ότι δεν ακούω. Γιατρικά ναι, έχω ένα θέμα, άλλα δεν νιώθω ανάπηρη. Η κοινωνία είναι ανάπηρη, αυτό είναι το θέμα μου.
Aphroditi (Αφροδίτη), a high-school teacher on her thirties When you ask me what deafness means... Όταν με ρωτάς τι σημαίνει κώφωση... την έχω I’ve got so used to it... deafness is me. I can’t συνεθήσει τόσο πολύ... είμαι εγώ. Δεν μπορώ να answer. σου απαντήσω. Don’t show disability, show the beautiful side Μην τους δείξεις την αναπηρία, δείξε τους την of disability! όμορφη πλεύρα της αναπηρίας.
Basilis (Βασίλης), an occupational therapist Deaf people have normal sex, they don’t have Οι κουφοί κάνουν σεξ κανονικά, δεν έχουν κάποιο any problem. πρόβλημα. For example, a disabled person with no legs should explain the topic further. Their sexual practices, how difficult they are due to their disability. We, the deaf people, we don’t have any specific difficulty in sexuality. The deaf, the blind, these two groups, with respect to sexuality, they don’t have any specific problem; their disability doesn’t affect them in sex. But when the disability is a mobility disability, tetraplegics, paraplegics, with cerebral palsy, their disability affects them in sex.
Για παράδειγμα, ένας ανάπηρος που δεν έχει πόδια, αυτοί πρέπει να εξηγούν το θέμα πάρα πάνω. Οι πρακτικές του σεξ, πόσο δύσκολο είναι λόγο της αναπηρίας τους. Εμείς σαν κουφοί, δεν έχουμε κάποιο ειδικό πρόβλημα πάνω στη σεξουαλικότητα. Οι κουφοί, οι τυφλοί, αυτές οι δύο ομάδες, όσο αναφορά τη σεξουαλικότητα, δεν έχουν κάποιο πρόβλημα, δεν τους επηρεάζει η αναπηρία πάνω στο σεξ. Άλλα όταν η αναπηρία είναι κινητική, οι νευροπαθές, οι τετραπληγικοί, οι παραπληγικοί, με εγκεφαλική παράλυση, η αναπηρία τους επηρεάζει στο σεξ.
Sofia (Σωφία), a middle-aged public servant The only problem I have is that I can’t hear. Medically yes, I have something, but I don’t feel disabled. Society is disabled, that’s the problem.
Το μόνο πρόβλημα που έχω είναι ότι δεν ακούω. Γιατρικά ναι, έχω ένα θέμα, άλλα δεν νιώθω ανάπηρη. Η κοινωνία είναι ανάπηρη, αυτό είναι το θέμα μου.
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