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Reflections on methods in research in sex and sexuality with disabled people.

Introduction

Research into sex and sexuality amongst disabled people (1) is a minority affair, and it is an area that has been, and largely continues to be, under-researched, for a host of reasons. Developing this body of research, and bringing disability into sex and sexuality research as a wider field presents an opportunity to rethink how research methods can be made accessible--that is, how research can be carried out, in a way that reflects and meets the needs of disabled participants, whether or not their disability is a focus of the research. The following reflections are based around my own work (2) with interviews in the field, together with a careful reading of the observations of other researchers. I hope to demonstrate that an inclusive approach is not only ideal, but is also relatively straightforward, and can be integrated into research that is not specifically concerned with the social world of disabled people, but with other social areas as well.

Concepts of disability

These reflections are premised on the basis that disability is a social process as well as a lived experience, along the lines of the social model (see Davies, 2006), a process that informs the formation of a disabled identity shared by a diverse group of people that is nonetheless situationally dependent and socio-culturally derived. Disability, therefore, is socially produced and inscribed upon certain bodies with certain impairments (3), but it is important to remain aware that not all of those bodies may identify themselves as disabled--for varying reasons, including the negative impact that being disabled may have on people, or feeling that they do not "fit" the model of who a disabled person is, especially as "the paradigmatic person with a disability is healthy disabled and permanently and predictably impaired" (Wendell, 2001, p. 21).

The basic premise of the social model of disability is "a clear focus on the economic, environmental and cultural barriers encountered by people who are viewed by others as having some form of impairment--whether physical, mental, or intellectual" (Oliver, 2004, p. 21). However, while the social model is a useful basic way of understanding disability, it does not necessarily lend itself well to deeper explorations of the interaction of disability within an intersectional understanding of identity--and some, particularly people with "learning difficulties", feel that the social model is an inadequate explanation of their own situation (Goodley and Moore, 2000). At this point, Kafer's political/relational model (2013) is more useful, in that it softens the line between impairment and disability, acknowledging the role of discourse in the perception of both, allows for further engagement with medical/clinical assistance, and repoliticizes both disability and impairment (Kafer, 2013). This approach also fits with a critically crip approach; McRuer's crip theory (2006) presents disability as an issue in which the sociocultural discourse presents a normative ideal of the compulsory able-bodied, able-minded neoliberal subject--with the disabled subject as forever unable to meet this ideal. While my understanding of disability, like Kafer's (2013), owes a great deal to the social model, it is nonetheless critically crip, acknowledging the sociocultural forces that create impairment and disability, and looking critically at those forces and the ways in which they interact with other constructions and discourses, such as gender and race.

Disability, sexuality, and sex

Disabled people are frequently viewed as asexual and infantile, with sex cast as problematic because their bodies are supposedly undesirable, or because their reproductive capacity is feared (Gillespie-Sells et al., 1998; Goodley, 2014; Guldin, 2000; Kafer, 2013; Marks, 1999; McRuer, 2006; Shakespeare et al., 1996; Tepper, 2000; Waxman Fiduccia, 2000; Zitzelsberger, 2005). This discursive construction has been "controlled by professionals from medical and psychological and sexological backgrounds. The voice and experience of disabled people is absent in almost every case ... disabled people are displaced as subjects, and fetishized as objects. A medical tragedy model predominates, whereby disabled people are defined by deficit, and sexuality either is not a problem, because it is not an issue, or it is an issue, because it is seen as a problem" (Shakespeare et al., 1996, p. 3). This approach, besides silencing the sexualities of disabled people, creates a paradigm that sex and sexuality is undesirable for disabled people; disabled people themselves do not (or should not) want to be sexual beings, and in the case of disabled people with acquired disabilities, their sexuality should "go away", that they should revert to an artificial asexual infancy upon becoming disabled--"sex and reproduction [is constructed] as predominantly problematic for disabled people" (Shakespeare et al., 1996, p. 5). The problematizing of sex for disabled people, along with the asexuality discourse, is twined into the discourse of sex--whether reproductive or pleasurable--as dangerous, as a source of disease and death and dirt. Disabled people are constructed as infantile in discourses of sex and of care provision, and these same discourses combine with the sex-is-dangerous, because social constructions of childhood require children--and "child-like" disabled people--to be protected from danger, and therefore from sex (Tepper, 2000).

Within academic and medical settings, when sex is brought up, it is more often in terms of a lack of knowledge or normative function (Shakespeare et al., 1996; Waxman Fiduccia, 2000), both of which are contained within a normative understanding of sex and sexual activity, in that sex is both heteronormative, and operates on the assumption that the "right" and desirable way to have sex is with an able body and able mind, and an equally able-bodied and able-minded opposite-sex partner (Brodwin and Frederick, 2010; Dune and Shuttleworth, 2009; Kafer, 2013; McRuer and Mollow, 2012; Wilkerson, 2012). The focus on function is primarily concerned with the ability of female reproductive organs to be penetrated and to bear non-disabled children (4), and the ability of male reproductive organs to achieve and sustain an erection to orgasm (Dune and Shuttleworth, 2009; Gillespie-Sells et al., 1998; Verschuren et al., 2010). The overwhelming focus is on (straight) men's erectile function, or lack thereof, "ignoring other aspects of male sexual dysfunction, and almost completely neglecting female sexual dysfunction" (Verschuren et al., 2010, p. 154), and excluding sexual pleasure and satisfaction, until it comes to the regulation or outright elimination of female reproductive ability (Waxman Fiduccia, 2000). This is tied to the role of heteronormativity in rehabilitation; the aim of the rehabilitation process is not an able body, but a normal one, a body that is able, heterosexual, productive and largely docile to the flows of institutional power (Sulivan, 2005); normality is "intimately bound up with ... [and] inextricably interwoven and embedded in systems of compulsory, yet unattainable, 'heterosexuality' and 'able-bodiedness'" (Rembis, 2010, p. 52). When it comes to sex, pleasurable erections are tied to masculinity--while women's sexual pleasure is secondary to reproduction; in effect, female dysfunction is the norm; for disabled men, the medical viewpoint is that erection-to-orgasm is the sole possible end point.

Normative expectations of sex centralise having an erection (Dune and Shuttleworth, 2009)--with a secondary expectation of being "given" an orgasm, for women, assuming her partner is sufficiently experienced/talented/endowed--which, for disabled people who experience sexual dysfunction, combines with those same infantilizing and asexualizing discourses in order to further remove the able-bodied heteronormative ideal from their reach. This is made more problematic when these able-bodied heteronormative norms are the only ones recognised by rehabilitation professionals, making claiming disabled sexuality doubly difficult, while the "inability to perform gender and sexuality in a way that meets dominant societal expectations [continues to be] seen as an intrinsic limitation, an 'unfortunate' but unavoidable consequence in inhabiting a disabled body" (Rembis, 2010, p. 51). Pleasurable--and reproductive--sex remains acceptable only for the young, white, able-bodied and able-minded (Kafer, 2013; McRuer, 2006; Tepper, 2000).

Most of the work on, or using, the social construction of disability has -justifiably--focused on the structural aspects of disability, with a political aim of assisting in the emancipation of disabled people. This focus has, however, led to the more embodied aspects of disability and impairment being considered largely secondary to issues of structure and access (Vernon, 1997), with issues of disabled sexuality being mostly ignored. Sexuality, along with identity and private life, were, and continue to be, a minor part of disability studies (McRuer and Mollow, 2012; Shakespeare et al., 1996; Sheppard, 2012). Only a small percentage of research on disabilities, chronic illnesses and mental health mentions sexuality in the title or keywords (Verschuren et al., 2010); those that do are almost entirely focused on heterosexual disabled people, with even less attention paid to non-cisgendered disabled individuals. In Green-well and Hough's meta-study of articles published between 2002 and 2006, with the keywords and/or title including "disability" and "sex" (a total of 54 articles), only two mentioned trans* as a gender variant--the assumption throughout the research is for disabled people to conform to normative conceptions of gender and sexuality, with LGBTQA issues being neglected or dismissed (Greenwall and Hough, 2008).

Having said that, there is a small but significant body of work which challenges normative constructions of sex and sexuality as experienced by disabled people; the ongoing development of a critically crip approach to disability presents an opportunity to develop thinking around the topic of disabled people's sexual selves and lives in a way that builds on this existing work.

Model research?

When it comes to research methods, the social model, being of longer standing, has a greater volume of guidelines on how to produce ethical research with and about disabled people, which should not be ignored; the basic framework for emancipatory research was developed not long after the social model itself, and was developed in partnership with disabled people (Barnes, 2009; Barnes et al., 2002; Oliver, 1997; Priestly, 1997). This framework aimed to demonstrate how to produce "ethical or emancipatory disability research in line with a social model framework ... [stressing] an avowed commitment to the empowerment of disabled people through a process of political and social change while also informing the process of doing disability research" (Barnes, 2009, pp. 1-2). However, taking in mind Barnes' advice that empowerment is not something that can be given to others, only taken for oneself (Barnes, 2003), Oliver's original checklist (Oliver, 1997) becomes less of a set of commandments, carved in stone, but some solid advice, which Barnes (2009, 2003) reduces to a tool kit of how research with disabled participants can be carried out.

Much has changed since Oliver wrote the original guidelines in the 1990s--tied up with Barnes' observations on the role of market forces on research and misuse of research by policy-makers (2003), Goodley and Moore (2000) observed that, as the academy has accepted disability as a 'worthy' subject of research, researchers within the academy are often placed in positions that conflict with their desire to act as allies to disabled people; "it is disingenuous for researchers to advocate research and empowerment when they also seek scores in research assessment exercises that are, arguably, inversely related to prospects for empowerment" (Goodley and Moore, 2000, p. 875). This conflict, while not always obvious, pushes forward the need for researchers engaging with disabled people to consider their own role.

Reflexivity and honest self-reflection play an important role in doing disability research, into sex/uality or not; accountability becomes difficult when Disabled People's Organisations (DPOs) are not necessarily interested in the proposed research (5), and, within the academy, "the use of formal tests of quality control ... has often hidden disableist assumptions that rarely acknowledge the specific circumstances of researching disability" (Barnes, 2009, p. 14). Therefore accountability lies with the researcher(s) and their participants; while the researcher can meet the ethical requirements of their institution, this may not satisfy a critically crip reading of how research can and should be done. Much of this crip approach, like the emancipatory research framework before it, is concerned with the power differential between researcher and participant

This political/relational crip understanding aids a conception of research that takes into account that knowledge is positioned as a form of power (Erevelles, 2005; Foucault, 1998, 1973; Hughes, 2005), and that the researcher, in having specific academic knowledge, is positioned as powerful. This is especially true in contexts where being a part of an institution, whether academic or medical, taps into a discourse where the educated researcher or medic has knowledge of, and therefore power over, a disabled person's body (Erevelles, 2005; Hughes, 2005).

The power differential in the relationship between researcher and participant lies--however much one tries to disguise it or redress it--with the researcher, and it remains up to the researcher to ensure that the research is carried out in an ethically sound manner. However, the nuances of the power differential can vary; for example, disabled researchers can be perceived as having an "in"--as having an understanding of the experience of disability shared with the participants, but this relies on the researcher being visibly disabled, or outing themselves as disabled (Vernon, 1997). This can have a negative impact--internalised ableist attitudes held by participants can in fact make the research more difficult (Brown and Boardman, 2010; Kitchin, 2000), while disabled researchers can face discrimination from their academic institution in ways that make acknowledging their disability a risk, especially when engaging in already risky sex/uality research. While I chose, and continue to choose, to make my disability an explicit part of my identity as a researcher, I only did so after a lengthy period of reflection, and while I think it has benefitted me in terms of developing relationships with participants, as well as grounding my theoretical approaches, I cannot say that it will not have a negative impact in the future. To that end, while I may personally think that increased visibility of disabled academics is necessary to challenge institutional ableism, that self-same ableism makes visibility risky--and I cannot say that all disabled researchers should make the same decisions as I did; each must make the decision for themselves.

While the power may lie with the researcher, at least in terms of how ownership of knowledge is constructed, it is important to remember that participants have a singularly significant role--research relies upon them to participate, and it cannot be done without their ongoing consent and active participation. Put simply, as a researcher, I can ask as many questions as I like--but it is only with the participants' good will that I get answers. To that end, I believe that participants should be involved as much as possible in the research process--in order to feel a sense of ownership, in a way that acknowledges their emotional and physical investment in the research as it is carried out, and as it is presented to others.

Participant validation, as part of an on-going consent process, is costly in terms of time and energy, but is, I have found, undoubtedly worth that cost. For myself, developing an ethically sound, accessible approach comes down to two very simple questions: how would I want to be treated if positions were reversed, and how do I want my treatment of participants to be perceived? So much of this comes down to the most basic of ethics--of basic human decency--crucially blurring the lines between subjectivity and objectivity. This is not to say that participants may not in fact wish to be treated differently, but it focuses on the humanness of the participants--on working against previous research about disabled people that has tended to objectify them, to deny their agency and their knowledge (Barnes, 2003; Morris, 1992; Oliver, 1997; Priestly, 1997).

For disabled researchers like myself, in considering how I would wish to be treated, I am forced to take the time to consider how I wish to treat myself, to consider how I will do research in a way that treats my health as a valuable, valid, resource. Much of this, however, comes down to a balancing act, deciding between how to do research which will be respected, in the perceived 'right' way, doing research in a way that is practical and achievable, and doing research in a way that addresses the power imbalance between researcher and participant. It is also important to consider that "disabled researchers nevertheless undertake research in context where disability is assigned meanings disabled people may not share. [Brown and Boardmann] argue that all researchers should attend to their own 'bodily signifiers' (whether in relation to ethnicity, wealth, gender, age etc.) and embodied experiences of research processes, as these are integral to research outcomes, the ethics of research, and are a means by which to address power differentials between researcher and participant" (Brown and Boardman, 2010, p. 24). This reflection is, however, an on-going process, not a single step to be taken at the initial design stage, and will influence analysis of the data as well--there is no point at which self-reflection stops.

Research design

This reflexive approach affected my own research design in a number of ways--firstly through the perquisite of an honest assessment how my disability and non-research commitments impact my ability to do research. For example, I cannot do two interviews in two days if one or both require more than two hours of travel, or will last longer than a few hours each--the time and energy devoted to travelling with equipment, to listening, to the on-the-go analysis needed to ask questions all adds up into a high energy output for myself (6) . If interviewing is physically and emotionally draining for the researcher, it must also be so for participants--particularly participants with illnesses or disabilities that limit their energy. An acknowledgement of the energy participants are putting into taking part is important--particularly given that there is not always a quantifiable, direct reward for their taking part (unless there is a financial reward, which muddies issues of consent). A sense of shared ownership, and an explicit placing of the power of consent in the hands of participants can increase their feeling of having done something positive for others through participating--and as this is often the only reward we can offer, it should be acknowledged and foregrounded.

Within my own research, while my focus has been on mobility impairment and chronic pain, the participants themselves have had a wide range of impairments and access needs; for any research, regardless of whether it focuses on disability as a social identity in particular, it is important to consider that access is not always straightforward, and a varying range of needs should be acknowledged and prepared for--and an awareness while planning that potential participants can have multiple disabilities with different access needs and preferences. For example, while none of my eventual participants have needed a sign language interpreter, in making it obvious that I was willing and able to meet this need, I was able to explicitly include people who might otherwise have felt excluded--this both widens the cast of my net as I search for participants, but also foregrounds my awareness of the nuances of access. In choosing to make my ability to meet access needs explicit within requests for participants (7) (and also when communicating with participants prior to interview), I made my intent to be inclusive more explicit; for so many disabled people, myself included, the assumption is that inaccessibility will be the order of the day. Even in research that is not specifically into disability, being able to include disabled participants widens the range of potential participants, and acts to include disabled people, in an area where exclusion is the norm.

The interviews themselves can be made accessible in a number of ways; some of these I never needed (Sheppard, 2012), but I maintain that making the initial preparations for the possibility of them being needed--and explicitly stating that such preparations have been made--is worth the time and effort due to the dual rewards of being inclusive, and then of being able to accommodate a participant without much palaver. Firstly, some disabled people have an assistant or carer, who supports (8) them in a range of ways; the disabled person should be able to have their assistant present during the interview should they wish. The assistant's presence may be practically helpful, but may also help the participant to feel comfortable--redressing the imbalance of power between researcher and participant through simple numbers. At the same time, the participant may feel constrained by the presence of their carer, especially when discussing sex or sexuality in cases where they are aware that their carer does not approve of or support their sexuality or practices (Earle, 1999). The decision to have their assistant or carer present should remain with the participant, but the researcher needs then to consider their consent to be present--and how they present a challenge to confidentiality.

Secondly, I advocate the use of a mixed-methods approach to interviewing. This is, of course, dependent on the kind of research one wishes to do, but for one-to-one interviews, data can be collected in other ways beyond sitting in a room with the participant and a dictaphone. The possibilities of internet-based video calls, email, and instant messaging are obvious, although all are tempered by the problems of accessibility, in that disabled people are more likely to not have access to a computer and the internet at home (Pilling et al., 2004). It has been noted by others that participants tend to be more focused and honest when interviewed over email (McCoyd and Schwaber Kerson, 2006); in addition, participants have the time to consider their responses, and answer at their own pace, when a discussion is carried out through an exchange of emails--there is no longer the time pressure of an immediate response for participant or researcher. For other participants, for example with variable impairments or who have issues with anxiety, this lessens the demands on them from the outset--and for disabled researchers, it can have largely the same effect. Email, instant messenger, and video calls have another benefit to both participants and researchers--they do not require travelling. As well as saving money and being more favourable in a risk assessment, for people with limited energy, being able to sit in comfort, at home, makes an interview much more accessible--but still presents the researcher with a wealth of data. While this approach presents conflicts--such as the discomfort felt by those who choose a public, face-to-face interview versus the comfort of those who email--it is still possible to see how accessibility makes such conflict a necessity.

Thirdly, when it comes to participants' consent, I made, and continue to make, as much of my intentions as clear as possible, in accessible, straightforward language. This process seems, at first, to be rather more complex than it in fact is--instead it is making the participants as fully aware as possible of the process of the research, including aims, timeframe, and their rights as participants. In explaining these processes in everyday language to potential participants--and inviting them to ask questions and critique the work--the researcher enables them to consent in an informed manner, while also being open and welcoming, rather than preserving a tidy delineation between layperson and academic, acknowledging that non-academic knowledge is valid and valuable--and indeed the knowledge of participants is needed for research to go ahead. This approach was originally developed in response to my perception that I needed to open my research process up to critique by disabled people--in an attempt to meet Oliver's requirement that emancipatory research be developed in conjunction with Disabled People's Organisations (Oliver, 1997). This not being possible when groups are uninterested--or when giving control over the research to one group would be restrictive--it seemed an obvious solution. However, I quickly discovered that it also acted to make my research and my position as a researcher more accessible in terms of adjusting the power differential--in making me more approachable, and the research purpose clearer (9) . It also made both myself and my participants happier and more comfortable--a key aspect of any conversation about sex.

It can, of course, be argued that using clear, straightforward language to make clear the intent of the research is ethical practice when engaging with any community; this remains true. However, when engaging with a community that have for so long been objectified and excluded by research and researchers, being straightforward is particularly important when engaging with disabled people. It is also worth considering that communities of disabled people include people with learning difficulties, and people with impairments that affect their cognitive function; even if the research project doesn't include them explicitly, it is worth considering how to include them.

The notion of informed consent that I have used, and continue to use, is that participants need to be as aware as possible of the processes involved, and the intention of the researcher(s). This is added to by the use of a notion from the BDSM and alternative sexualities scene (as well as 'pro-sex' feminism)--that of 'risk-aware consent', along with the movement towards creating "cultures of enthusiastic consent and/or taking mutual responsibility for creating dynamics and situations in which consent is possible ... [where consent is] a relational dialogue" (Barker, in press, pp. 9 - 10). Risk-aware consent involves, for me, making participants aware of my aims and intent, both specifically and in a wider socio-political context, in order for them to decide for themselves if they wish to enable the research through participation--and if the potential risks (10) are outweighed by the possible benefits, given that they will not benefit directly beyond a cup of tea and the warm glow of having helped someone else do something.

Consent, here, is a balance of the formal consent agreement, and the provision of written or recorded information, along with a process of ongoing verbal checks--pausing during interviews to ask "are you ok?" even when the participant doesn't appear to be distressed, as well as checking occasionally to ensure that they aren't baffled by why you're asking particular questions. Much of this process is made up of soft interview skills--but it is nonetheless something that needs to be explicitly discussed. Participants may also feel that, once they have given written consent, that withdrawing consent is "being difficult" (especially participants who have previously been socialised to not "make a fuss", or who are used to their needs and emotions being ignored)--and giving them an explicit space within the research process to call for a break, express discomfort, or indeed, withdraw, is a necessary part of an ongoing, relational process of consent. Checking in after the interview is the last part of this process--I advocate sharing transcripts with participants, as a formal, final check for consent, as well as a more informal, friendly check in. In a case where the interview was long and particularly emotionally charged, this meant that I'd satisfied my own fears that my questioning had upset the participant, but also helped me develop my understanding of the participant's life by taking a little longer to get to know them outside of the formal interview situation. In situations such as research into disability and sex/uality, both of which are deeply personal experiences, the interview is a personal process for myself as well as the participants--and taking time to check in helps to acknowledge this.

In all of these three accessible adaptations, the key aspect is time--time to write a longer explanation, time to discuss the process, time to plan and make arrangements for interviews, and time to take longer to do interviews and discuss those interviews with participants. However, much like any other pre-planned event, time taken at the early stages, in preparation, can lead to a much more enriching interview process, on both parts. And, more selfishly, it allows a disabled researcher time--it acknowledges that, for many, a disabled life is a life lived more slowly (Kafer, 2013; Wendell, 1996).

A critical approach

This acknowledgment of the time needed to be disabled forms, for myself, a large part of my critically crip approach to research--moving the strictures of emancipatory social model research into a crip arena, a critically crip approach interrogates what it means to be disabled, for others and for myself (Kafer, 2013; McRuer, 2006). This approach enabled a more free-flowing and adaptable approach to attempting to balance the unequal relationship between researcher and participants--while remaining aware that the relationship can never be wholly balanced, due to power dynamics of multiple, intersecting identities, roles, and agencies (Barker, in press; Deckha, 2011; Downing, 2012).

With this, and any theorising of disability, it is important to remember that disability studies is a minority world affair--the vast majority is produced by and about people in European and North American states. However, of the total global population of disabled people, it is guesstimated that around 80% live in the global South (Grech, 2012). As such, there is a need for decolonised methodologies, and an acknowledgement of how "the colonial constructions of, and approaches to, disability seep into and make up the contemporary disability landscape (including the transmission/imposition of knowledge and practices)" (Grech, 2012, pp. 53 - 54). This, in terms of researching sex and sexuality, involves an awareness of the situational nature of disability, and, to borrow from the concept of debility, how social practices and environments can act as barriers, or increase the effects of an impairment (Kafer, 2013; Puar, 2009).

Within sexuality, this is very obviously tied into systems of compulsory heteronormativity; McRuer (2006) and Kafer (2013) refer to this as compulsory able-bodied and able-mindedness, where the normative ideal of a sexually active person is young, able-bodied, able-minded, (Dune and Shuttleworth, 2009) and either heterosexual or, as Sherry terms it "normal gay" (2004). This normative state "marginalizes a range of consensual adult practices which are not linked to gender norms, monogamy, and marriage, such as sadomasochistic sex, casual sex [etc]" (Sherry, 2004, p. 777). For disabled people, non-normative sexualities can be expressed and experienced in ways and situations that are not generally covered in normative concepts of sexual activity--from touch to the use of toys, aids, and advance planning (Dune and Shuttleworth, 2009; Guldin, 2000; Rembis, 2010).

Conclusions

Overall, making research inclusive--whether talking about sex, sexuality, or something else entirely--is both simple and time-consuming. The time taken to prepare an accessible approach results in a rewarding interview experience, with participants who are happy and comfortable in sharing their lives with researchers, and who feel able to give feedback and validation to the process. Research is a two-way street, and while researchers are in a position of knowledge and power, we rely on participants to help us increase that knowledge, which gives them power--therefore it makes no sense to not want to include as many people as possible. To be honest, the primary benefits of my research accrue in my own favour--it is in no way a selfless exercise, and while I try to balance the needs of doing research in an academic setting by, in some small way, challenging the norms of research, I have only so much agency if I wish to continue within the academy.

Inclusive research, which includes disabled people as participants as well as researchers, should be the norm--especially in fields which aim to be progressive and to want to make a difference to people's lives. I hope that I have demonstrated that this is not a particularly difficult change to make.

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(1) A brief note on a linguistic choice: I use the term disabled person, rather than person with a disability (PWD). This is, in generally, the preferred term by disabled people in the UK (with the exception of people with learning difficulties, who prefer person-first language, and therefore identify as people with disabilities). This term derives from a preference for the social model in research and activism. The argument as to which term is "best" is lengthy, and while I acknowledge the importance of language in discourse, both sides make valid points. As a disabled woman, working primarily with people who identify as disabled people, I have chosen to stick with that particular term, but I have not discounted research or experience from those who choose otherwise.

(2) PhD research, with the working title Kinked and Crippled: disabled BDSM practitioners' experiences and em bodiments of pain, expected 2016, as well as a forthcoming publication on earlier research (Sheppard, 2012) into queer sexual identities and acquired impairment.

(3) What counts as impairment is itself discursively constructed; changing over time, but within the social model can be understood as a medical diagnosis.

(4) The discourse here is that disabled people should only reproduce when there is no risk of their children themselves being disabled--and they are capable of providing care that fits with discourses of idealised parenthood (Gillespie-Sells et al., 1998; Guldin, 2000; Kerr and Shakespeare, 2002; Shakespeare et al., 1996).

(5) The focus on user-led research and responding to the majority has led to research that is normative in its conception of sexuality, and of disability itself. On top of this, the influence of austerity politics on disabled people has pushed issues of sexuality to the background (a wholly reasonable reaction).

(6) My disability restricts how much energy I have--while also resulting in even the most basic of tasks using more energy. As a result, I have to carefully budget my energy by managing and planning what tasks I carry out in the course of a day, or over a period of weeks. This is almost as much fun as it sounds.

(7) See Sheppard, 2014 for how this pertains to my PhD research.

(8) This role may be paid, but may be performed unpaid by a family member or friend. Within this particular context he financial aspect is not particularly relevant, but it should nonetheless be noted, and can be explored.

(9) This may also help in situations where participants and researchers do not share the same first language--which, while it has not yet come up in my own research, was nonetheless a necessary consideration.

(10) Whether that is by being distressed due to the discussion, the outlay of energy required, or the act of 'coming out' (again) as disabled or queer, discussing one's experiences is risky.

https://doi.org/10.3224/insep.v3i1.04

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Author:Sheppard, Emma
Publication:Journal of the International Network for Sexual Ethics and Politics
Geographic Code:4EUUK
Date:Jan 1, 2015
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