Abstract

Researchers with experiential disability knowledge increasingly engage in socio-medical research. In this paper the author discusses her experiences with employing her own lived experiences with disability in academic and non-academic research projects. Incorporating one's own lived experiences in research implies a blurring of boundaries between the private, the professional, and the public. The latter may give rise to dilemmas of double membership and dilemmas of disclosure in publications. Double membership may become problematic for disabled researchers who identify with the disability community if conceptualizations of disability in scientific communities unwittingly echo negative societal images of disability. Because of the low status of disabled people and of experiential knowledge, disclosure of own experiences with disability may negatively influence young disabled researchers' careers.


To date researchers increasingly employ their own experiential everyday knowledge in social or medical research to enrich scientific understanding and to ensure that intended users benefit from the research. Caron-Flinterman (2005), Pagis (2010), and Schipper et al. (2010) argue that participation of disabled or chronically ill people in research as co-researchers helps to ensure that research agendas reflect disabled people's priorities and that research design and research instruments such as questionnaires make sense from the everyday perspective of chronically ill or disabled people. Furthermore, Bonham et al. (2004) assume that using one's own experiential knowledge in disability research empowers the researcher. However, they do not describe under what conditions the use of experiential disability knowledge empowers disabled researchers nor do they discuss other, possibly adverse effects of the use of experiential everyday knowledge in research.

In this paper, I partly address this gap. I reflect on my own experiences with using experiential disability knowledge as an anthropologist in training, as a junior social researcher, and as an action researcher in academic and non-academic settings in the Netherlands in the period 2001-2009. These reflections offer insight into the different ways in which the use of experiential knowledge may affect the careers of young disabled researchers and can increase our understanding of how academic contexts may influence the occurrence and experience of dilemmas of double membership and disclosure of disability in publications.

Disabled scholars researching disability may encounter various kinds of dilemmas (e.g., see Vernon, 1997); here I focus on two related dilemmas I struggled with and consider relevant for young disabled researchers and their colleagues: dilemmas of double membership and dilemmas of disclosure of one's own disability experiences in publications.

Dilemmas of double membership may arise because the experiential disability researcher is both a member of the disability community and of the academic community. The experiential researcher—a disabled researcher who investigates the lived experience of disability—may feel that expectations from the disability community are at times difficult to reconcile with requirements from the academic community, e.g., because disabled people do not directly benefit from disability research or even feel alienated from research (see Aaslid, 2012; Good, 2001; and Oliver, 1992, for more on the alienation of disabled people by different forms of disability research).

Dilemmas of double membership and disclosure in publications partly emerge because experiential researchers use their own private, everyday experiences in their work lives, blurring the boundaries between the private, the public, and the professional. Using personal experiences for scientific purposes means that disclosed personal experiences are no longer private but may be assessed, criticized, and used for different purposes by others (see McLean & Leibing, 2002, for more about the blurring of boundaries between research and life). As McLean and Leibing (2002) and Muncey (2010) show, dilemmas of double membership and disclosure are not limited to experiential disability researchers; autoethnographers may also encounter them. I will come back to this point later.

In addition to the societal status of the disability category, in my experience the following factors affect whether and how dilemmas arise in experiential disability research: (1) the professional status of the researcher combined with how disabled people get conceptualized in the researcher's epistemic community, and (2) the researcher's familiarity and identification with disabled people in general.

The professional status of the researcher may affect how experiential researchers are able to handle data—including their own experiential knowledge deployed in research. Junior researchers tend to have less autonomy than senior researchers with regard to changes in the research design and have less to say about whether, how, and when research findings get published. Little autonomy may become problematic when the dominant conceptualization of disability in an academic discipline reproduces dominant negative images of disability (cf. Deal, 2007; Oliver, 1992).

For instance, Disability Studies as a discipline focuses on empowering disabled people and raising awareness about how mainstream society disables people with chronic conditions. In contrast, the Health Sciences and Social Medicine disciplines tend to focus on improving health care and services for chronically ill or disabled people. This lofty goal often goes together with conceptualizations of disabled people as primarily needy healthcare users who lack knowledge and skills to improve their own situation. Disabled researchers who identify as disabled are likely to try to avoid a conceptualization of disabled people as primarily dependent because they know from personal experience that disabled people are so much more than healthcare users and also because they generally do not want to reinforce negative stereotypes of disabled people as needy, pitiful beings. These stereotypes are not helpful and alienate disabled people (see Makas, 2010, for more on differing conceptions of disability between disabled and non-disabled people).

In the Netherlands most disability research tend to be conducted in (semi) medical or health sciences departments and/or is conducted to inform policy of the Dutch Ministry of Health, Welfare and Sports. Disability Studies as a separate academic discipline is very young in the Netherlands: the first Dutch Disability Studies research program was launched in December 2009. As a consequence, I conducted experiential disability research largely in an epistemic context in which disabled people are primarily conceptualized as dependents on care.

Before describing the dilemmas of double membership and disclosure in publications I encountered in different projects and formal roles, I will say something about how my informants and I relate to the disability community. I will also discuss the scarce literature on how experiential disability research affects research and the young disabled researcher.

My Informants' and my Views on Membership in the Disability Category

I was raised in a family in which I was the only one with visible congenital impairments. Because strangers often talked to me as if I was slow-witted my mother used to say to me: "there is something wrong with your legs not with your head" and "you are not like intellectually challenged or mentally ill people." Consequently, I doubted that I had much in common with other people with impairments. In addition, I did not know any disabled children and I did not recognize myself in media images of disability. The latter motivated me to focus my research for a Master's degree in anthropology on young adults with impairments; that way I could find out how dominant societal images of disability related to the lived experiences of people with impairments not unlike my own.

When I got to know disabled people in and outside the disability movement and befriended disabled people I increasingly realized that I had much in common with them, and, more importantly, that disabled people who wholly fit negative stereotypes of disability do not exist. So far I have only met disabled people who actively and strategically deploy negative stereotypes to get the benefits and auxiliary aids they need in order to be able to live lives similar to able-bodied people (e.g., see Mogendorff, 2002).

Moreover, my conviction grew that the societal position of disabled people needs to change in order to enable all disabled people to lead lives similar to their able-bodied peers. And also that as a disabled researcher with a background in anthropology and communication science I should not help reproduce societal stereotypes of disability with unintentional use of ableist language. The latter is more difficult than one may think mainly because everyday language is imbued with sociocultural inferences about disability, and people including myself tend to use language unreflectively. For instance, as I child I would occasionally refer to myself as handicapped [gehandicapt in Dutch] not because I thought that I shared common ground with disabled people but because I knew that others called me "that handicapped girl."

Disabled informants who participated in different research projects I conducted tended to see themselves as persons with impairments who do not conform to the dominant negative societal images of disability. At the same time many informants expressed the belief that there are disabled people out there who fit the negative stereotypes of disability. Many informants also made remarks in agreement with the so-called disability hierarchy. This hierarchy suggests that people who are less impaired have a higher status than those with more severe conditions and that people with more stigmatized conditions such as significant intellectual disability have a lower status than people with physical impairments (Deal, 2003).

Generally, informants with physical impairments did not want to be associated with people with intellectual impairments, informants with intellectual disabilities generally did not see common ground with people with mental illnesses, and informants with mental illness did not want to be associated with people with physical or intellectual impairments. Instead informants irrespective of the type of conditions they had identified the strongest with other people who had the same or similar impairments as themselves.

Literature on the Nature of Experiential Disability Research

To date, there is relatively little published about how young disabled researchers explicitly employ their own lived experiences in research and how these researchers are affected by the explicit use of their everyday experiences with disability in research. If disabled scholars write about these issues they tend to do this when they have established a secure academic reputation and position. Irving Kenneth Zola was already an established scholar in the field of medical sociology before he started to explicitly incorporate his own personal experiences with disability in his writings (Williams, 2008), Elyn Saks had hidden her condition for decades; she was already a full professor before she wrote about how her schizophrenia affected her life and academic career (Saks, 2007). Robillard and Murphy were already full professors in their respective fields when they contracted disabling medical conditions and started to explore the lived experience of disability in their writings. Rod Michalko was a bit earlier; he had already obtained the title of doctor but was not yet a full professor when he started to use explicitly his own lived experiences with blindness in his scholarly publications (Michalko, 1999). These established scholars do not run the same risks when they disclose their disability experiences in academic writings as young scholars who do not have fixed contracts and still need to establish themselves as scholars. Given that this contribution focus on my experiences as a junior without a fixed contract or established academic reputation, I will in the remainder of this paper focus on the work of young disabled authors.

Young disabled authors generally limit themselves to how sharing the world with disabled informants affects research outcomes or the researched (e.g., see Mogendorff, 2007; Shah, 2006). Less often researchers elaborate in detail on how doing disability research transforms their understanding of disability in their own and others' lives, e.g., by writing an autoethnography (e.g., Hesebeck, 2012; Mogendorff, 2011).

Experiential disability researchers such as Mogendorff (2007) and Shah (2006) report that they as disabled researchers tend to have better access to disabled informants than their non-disabled peers primarily because disabled informants feel more at ease sharing their disability experiences with researchers "who know what it is to be disabled." Moreover, Hesebeck (2012), Mogendorff (2007), and Shah (2006) stress that they avoided the pitfall of over-involvement by describing their lack of familiarity with informants prior to research, by detailing how they differed from informants, and by providing an account of how they maintained a healthy balance between distance from and involvement with informants during fieldwork.

Of relevance is also that experiential disability research shares some of its features with autoethnography although experiential disability research is not necessarily strictly ethnographical in nature and autoethnographies do not necessarily focus on disability. Like autoethnographers, experiential disability researchers employ their everyday experiential knowledge in designing, conducting, and writing up research in order to better understand the phenomena they study. By explicitly using their own experiences as data, experiential disability researchers and autoethnographers treat themselves as informants; their own experiences inform the research on different levels (cf. Mogendorff, 2007; Muncey, 2010). Moreover, experiential disability researchers, like analytical autoethnographers, draw upon the experiences of disabled informants (Anderson, 2006).

In her book Creating Autoethnographies, Muncey (2010) discusses several difficulties researchers may encounter when they use their own everyday experiences in research. She shows that the likelihood that autoethnographers or experiential researchers encounter problems depends on the epistemic community researchers are part of, the public that researcher addresses, and the type of autoethnography or experiential research they conduct (Muncey, 2010). For instance, autoethnographers who primarily draw upon their own experiences are prone to be accused of self-indulgence. Disabled researchers are less likely to be accused of this because unlike autoethnographers they do not exclusively focus on their own experiences with disablement.

Despite the latter, experiential researchers may encounter difficulties when they try to contribute to theory development in a particular academic field which unwittingly conceptualizes disability in a non-constructive way and simultaneously try to give voice to the experiences of marginalized groups such as disabled people (see also Haller et al. 2006; Oliver, 1992). The latter I experienced myself as a researcher with physical impairments.

Dilemmas of Double Membership

My first research project with disabled people focused on how the self-image of young Dutch adults with congenital visible neuromotor impairments was affected by the experience of disability in different life domains, from early childhood to young adulthood. I conducted this research in 2001-2002 to obtain a Master's degree in social anthropology and non-Western sociology. In an early stage of the research I decided to use my own lived experiences with congenital physical impairments in data-gathering. Later I also decided to explicitly use my own experiential knowledge in publications (see also Mogendorff, 2003; 2007; 2010).

I used my own experiences in the data-gathering phase in several ways. For example, my own experiences with impolite questions from strangers about sexuality and disabled people's medical status influenced how I discussed medical histories and intimate relationships with informants. I did not ask informants about the prognoses of their conditions or their sex lives; instead I asked them how they experienced conditions, medical interventions, and relationships. As a result, informants who were in a relationship talked of their own accord about how able-bodied people demonstrated inappropriate curiosity about their sex lives and how strangers' attitudes contrasted with their own views on sexuality. Furthermore, informants said that they decided to talk about their sex lives with me because I did not show myself to be inappropriately curious about it (see also Mogendorff, 2007, for a discussion of this in relation to intersubjectivity and rapport building).

Furthermore, during my fieldwork period I recorded in a diary every instance of social barriers I encountered in everyday life and I talked with informants about my own experiences of disablement if they asked about them. Moreover, in some cases, I took the initiative to share personal experiences to build rapport, to make it easier for informants to share their own experiences, and to gain a better understanding of how physical and social barriers affected the lives and self-image of people with impairments. Informants' responses sometimes provided a different perspective on my own experiences, which in turn helped me to generate new insights in how disabled people can deal in different ways with disability (see Mogendorff, 2002).

In this first project I did not encounter many dilemmas of double membership, most likely because I had great freedom in how I managed the research and how, when, and where I published results. Different from later projects, I designed the research myself, my supervisors did not co-author my work, and as I did not receive any funding or financial compensation for the research, I was not accountable to a funding agency.

However, when the time came to write up results a dilemma of double membership asserted itself. During my fieldwork period I came to participate in an internet community for young people with impairments and/or chronic illnesses that was co-founded by one of my informants. In contrast to numerous other researchers who temporarily participated in this online disability community for young adults, I was not only entitled to participate in the community as a researcher but also as a member of the target group of the mailing list.

Also unlike other researchers, I chose to stay on as an ordinary member of the internet community after my fieldwork period; participation in the group was satisfying and useful to me on a personal level. This decision made me wonder whether it was appropriate to cite from the list; after all, anthropologists tend to write about their research after coming back from the field, not when they are still emerged in it.

To complicate matters, the informant who had introduced me to the mailing list jumped in front of a train when I was writing my thesis. Every suicide is shocking but this suicide was particularly disturbing to me because this informant was not so very different from myself. The suicide of my informant demonstrated that people who appear not to be desperate, not depressed, not abused as a child, and do not have a bad self-image sometimes commit suicide. Put differently, suicide could one day also happen to people like me.

The suicide came as a great shock to his parents, friends, and the internet community. Sometime after we were informed of the suicide, the moderator of the community relayed that the authorities blamed the suicide on the informant's first and fatal psychotic episode. I was nonplussed by this news. I did know that this informant had neuromotor impairments but neither he nor his friends had ever indicated that he also had a mental illness. Nevertheless, blaming the suicide on mental illness tended to help community members to cope with the inexplicable; the psychotic episode signified that the suicide could not have been prevented by the informant or by people who cared about him.

Eventually, I decided not to mention the suicide in my thesis: the event did not seem to offer new insights about the theme of my thesis, writing about the suicide may upset the informant's family, and, finally, the illness-induced suicide might encourage readers to interpret events in accordance with the "disability as a tragedy" stereotype. The latter would, in my opinion, obscure my finding that the self-image of disabled informants was mainly affected by frequently occurring everyday experiences.

Additionally, the suicide increased my feelings of protectiveness toward informants; I cited informants more sparingly than I had cited able-bodied informants in communication research I had conducted in 1998 to obtain a Master's degree in communication science. Internet discussions I only cited when they offered insights different from my offline data.

Dilemmas of an Academic Junior Researcher

After obtaining a Master's degree in anthropology in 2002, I worked as a junior researcher at different universities on diverse research projects: a project that focused on people who received social benefits because their impairments or illnesses prevented them from acquiring or retaining a paid job; a project concerned with the social participation of people with learning impairments and people with mental illnesses. Additionally, for two years I was employed by a disability advocacy organization to manage action research projects.

The action research projects focused on the improvement of the quality of life of intellectually disabled people. My role was to manage projects; recruit, train, and coach disabled interviewers; analyze data; and facilitate discussion of results in focus groups. Experiential knowledge was not a requirement to get hired, but the fact that I walk noticeably differently from able-bodied people turned out to play a role in the research I conducted and managed.

Participants in the action research projects assumed that I shared with them experiences of disablement or, as some of them said: "you are slow with your legs, we are slow in our heads." Sharing a disability with participants made it relatively easy to recruit disabled interviewers but also led to confusion at the beginning of projects: my impairments indicated I was one of them, but my roles as selector, trainer, coach, and manager signaled to them that I was an able-bodied person; in their experience up until then an able-bodied person was the coach and project manager.

Moreover, disabled interviewers and many informants expressed the belief that "disabled people themselves are best equipped to improve disabled people's lives. They really understand from experience what it is to be disabled." Despite this, I did not think that I could support disabled interviewers better than non-disabled colleagues. This was primarily because the success of the project did not rely on my shared membership of the disability category but on a lot of other factors as well.

Nevertheless, I felt that in the action research projects I could more easily live up to expectations linked to double membership than in the academic projects at university. The action research projects followed more closely the interests of disabled people than the academic projects. Moreover, as a project leader in the action research projects I could decide what, when, and how findings got published; as a junior researcher at university I had no final say in how results were presented. Little autonomy need not be a problem but over the years I had noticed that researchers often do not check whether they unwittingly use language that reinforces negative stereotypes of disability (see also Haller et al., 2006, on ableist language use by journalists).

In the academic project about the social participation of people with intellectual disabilities and people with mental illnesses I was concerned about whether a research report would unwittingly perpetuate negative stereotypes of disabled people. Most disability research does not take into account how factors such as age, gender, education level, and social background affect lived experiences of disablement and resilience of people with impairments. Instead publications tend to depict disabled people as a monolithic whole that experiences deprivation compared to non-disabled people. The lack of attention to disabled people's strengths and to how gender, age, disability and other factors intersect tends to reinforce the societal image that living with a disability is primarily problematic and negative even though deprivation on an aggregate level says nothing about the quality of life of individual disabled people. This raises questions about how best to report findings on the lived experience of disability provided that one seeks to avoid the reproduction of negative societal images of disability (cf. Dwesburg, 2004).

Moreover, in this particular project I was concerned with how relationships between disabled people and members of various other groups were depicted. In the literature on social participation, social friendships between disabled people and able-bodied people are generally valued more highly than friendships between two or more disabled people and relationships between disabled people and service providers respectively (Fine & Asch, 1988). This hierarchy in appreciation of relationships I find troublesome not only because it suggests that medical conditions make you less able to be a friend to another, but also because I know from everyday experience that friendships between disabled people and their service-providers/caregivers and friendships between different disabled people may matter very much to the persons involved. My non-disabled co-authors did not experience this hierarchy as problematic with regard to the discourse on the social participation of disabled people but eventually they respected my wish not to reproduce this hierarchy in the report.

Dilemmas of Disclosure of Disability in Publications

Revealing one's own personal experiences is generally believed to entail a certain degree of exposure, making those who speak about it vulnerable and assailable (Wieser & Karner, 2010). Personal experiences' explanatory power or their representativeness can be questioned as can the integrity or credibility of a person who relates experiences that are considered deviant or inappropriate. For this reason and others, Boevink (2002) advises that one publicize only personal experiences one is no longer troubled by. The experiential disability researcher may feel alienated or hurt when unprocessed yet published personal experiences are criticized or get interpreted in a different way than the author intended.

The benefits of explicit use of experiential knowledge in the publishing phase are not clear-cut. On the upside, insights based on experiential knowledge presented in publications may be useful or empowering to readers or contribute to changes in societal images of disability and/or theory development. On the downside, personal experience as a source of knowledge tend to be valued less in science than other forms of knowledge (Caron-Flinterman, 2005). The latter implies that personal experience is best deployed when it demonstrably generates insights that may not be gained in any other way.

When I was writing my Master's thesis, I was not sure to what extent I should include my own experiences. My uncertainty did originate in part from the mixed messages I got from teachers. Teachers were not all in favor of using autobiographical data in research mainly because of the risk of over-involvement; over-involvement may hinder analysis.

A greater risk may be that personal experiences once published may be deployed by others for different purposes in other contexts. For instance, what happens if a selection board that seeks the perfect candidate for a vacancy you applied for reads about your disabling experiences before they have decided who to invite for a job interview? Of course the latter does not need to be problematic but it might: publications tend to play a part in job interviews and as the research of Gras et al. (1996) demonstrates, mentioning your disability status in an application letter results in significant fewer job interview invitations.

When I wrote my Master's thesis I was well aware that it would not necessarily be in my best or other disabled people's interest to point out in detail that my neuromotor impairments signify something more than that I walk differently from able-bodied people. If people find out that physical impairments have more negative consequences in everyday life than meets the eye, this may result in an even lower societal status for disabled people (e.g., see Cameron & Ruthland, 2006). Partly for that reason, I wrote sparingly about my own experiences in my Master's thesis. In publications from 2007 onwards I included more personal experiences mainly because I had grown more confident that I could handle possible negative responses or consequences of disclosure.

One of these later publications caught the interest of potential employers. Twice during a job interview, I got questions and remarks about my article Looking in a mirror: Creating space to explore identities as persons with impairments (Mogendorff, 2007). In this particular article I discuss how sharing a disability with informants affected my research. In both instances that Looking in a mirror was discussed during a job interview I got the job. However, I do not know whether there are potential employers who did not invite me for an interview because they learned of my disability status by reading my publications.

My biographical account in Looking in a mirror made some job interviewers wonder aloud what condition I actually had. I felt that interviewers' preoccupation with my condition had diverted attention from the main message of Looking in a mirror. Moreover, interviewers' curiosity meant less time to discuss job relevant competencies. Therefore I decided to be more explicit in my future writings about what my impairments entailed.

Would-be employers were not the only ones to comment on articles; informants, family, friends, strangers, and colleagues also offered responses. Most responses were positive. However, Looking in a mirror was cited in a non-standard way by researchers who investigated patient involvement in medical research. Generally, if researchers refer to the work of a colleague they state the family name of the author followed by the year of publication in parentheses. However, this was not how I was cited by Schipper et al. (2010). Schipper et al. (2010, p. 506) referred to me as the author of Looking in a mirror as follows:

It reminded me of a piece written in 2007 in a Dutch Journal named Medische Antropologie [Medical Anthropology] by Karen Mogendorff, a women [sic] with a physical disability, who also met an identical person during her research. In that article she illuminates how very important it was for her self-realization to be with that very same person, to compare all kinds of daily matters and to openly discuss and discover what always remained hidden.

In this fragment in What does it mean to be a patient research partner? An ethnodrama, Schipper et al. (2010) refer to my description of an encounter with a female informant whose asymmetrical walking style literally mirrored my own walking style. Who also met an identical person suggests that symptoms of medical conditions define people more than a person's character and lifestyle. Moreover, this is an implication that reflects disabling conceptualizations of disability as a master identity.

Furthermore, Schipper et al. (2010) do no refer directly to my professional identity as a researcher with impairments but refer to me as a women [sic] with a physical disability. This may indicate that not all researchers treat disabled researchers as equals of able-bodied researchers; this particular reference also seems to signify that employing personal experiences in peer refereed articles is not seen as real scientific enterprise. This also raises the question whether it is wise to use personal experiences with disablement in scientific publications: it seems that researchers who use their lived experiences in scientific publications may indeed run the risk of diminishing the perceived scientific status of the publication.

Concluding Remarks

My experiences show that dilemmas of double membership may arise when researchers strongly identify with informants and informants' interests potentially conflict with research interests. Dilemmas may also arise when conceptualizations of disability in scientific communities do not sufficiently reflect disabled people's lived experiences or when research goals do not sufficiently match disabled people's interests. The latter suggests that a research project may be better served if researchers pay attention to the conceptual implications of their representations of disability.

Dilemmas of disclosure in publications seem to surface mainly because of the low societal status of disabled people and of the lower status of experiential knowledge vis-à-vis professional knowledge. These problems are not easily resolved but it may help if more researchers start to see the value of their own and others' everyday experiences for science.

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Copyright (c) 2013 Karen Mogendorff



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Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.

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ISSN: 2159-8371 (Online); 1041-5718 (Print)