Encounters With the White Coat: Confessions of a Sexuality and Disability Researcher in a Wheelchair in Becoming

First Days in the Field

The hospital where I completed a 1-month internship had one floor that was specialized in the rehabilitation of adults who had recently acquired SCI or limb amputations, and whose physical condition had been evaluated as stable enough to start rehabilitation by intensive care staff (usually after a couple of weeks). Most people stayed in rehab between 6 and 12 months, depending on the accessibility of their homes and on their remaining potential to make significant progress (read: reduce the impact of lasting damage to their bodies on their functioning in everyday life). Some residents had acquired their injury years before, but came in for rehab after injury-related surgery or for additional ambulant therapy. Every resident was supervised by a multidisciplinary team of physicians, nurses, physiotherapists, sports therapists, occupational therapists, and a psychological counselor. None of the health care professionals themselves had visible physical impairments, which made me, introduced as temporary member of the team, quite an exception.

I did not really have a job description. I had asked the head physician and her team to grant me freedom to follow my instinct and join residents and professionals alike whenever it seemed relevant. I was granted that freedom from Day 1, but I was also given two rules to obey. For starters, I was not allowed to conduct formal interviews with “patients” and I was certainly not allowed to initiate conversations about sexuality and relationships (my research topic). I recalled words published more than four decades ago and referring to a time even more decades before, when some professionals felt that “the less said to cord injured patients regarding sexual functioning, the better; and that repressive mechanisms should be allowed to take their course in stifling thoughts and preoccupations about sexuality” (Hohmann, 1972, p. 55). Was it really 2015? I did not understand, or I refused to understand the physician when she elaborated that those topics were likely to be too fresh for the residents, as if she feared that they were not able to decide for themselves whether they were ready for these topics. It seemed unfair to me. I was frustrated. I had become so familiar with concepts such as self-agency and agential cuts and the fact that the autonomy and freedom of choice of people with disabilities are very often neglected or ignored. Rather than delving deeper into what this first rule might tell us about the place of sexual well-being in rehab, however, I wish—with resistance, though, because I feel ashamed for what will come—to focus on the second rule, as that one struck me even more deeply. Its impact did not only involve my doing. The second condition affected my being.

I was asked to go and pick up my white coat in the office, to make it clear straightaway for the residents that I myself was not in rehab. I perceived it as an attempt to create a distance, to avoid that the residents would recognize me as one of them and, thus, would share more of their innermost feelings with me than they would with any other, “normal” health care professional. I felt sick. The coat triggered memories of being observed myself by people in white coats (e.g., when I was walking in braces for the first time as a 6-year-old surrounded by excited medical professionals and parents of other paralyzed children who all considered this to be a major achievement in the history of the rehab center, whereas I felt like a rusty robot deprived of the freedom of my quickly spinning wheels, or when yet another physiotherapy intern watched my physio work on my body and, subsequently, repeated the action without announcement for the sake of his own learning rather than for my benefit) and of moments in which my knowledge and experiences of my body were questioned or neglected by people in uniforms (e.g., when a government doctor came to check whether I really needed the tools I had listed for reimbursement, when a team of physicians pushed me to continue swallowing medication against spasticity and even recommended surgery despite the fact that I could easily live with it, when I asked a law doctor co-responsible for one of the many medical examinations following my car accident whether there was a section in the damage claim report for sexual experiences, and the only answer I got was a short “you should learn to be satisfied with your high score on esthetical damage”). I definitely did not want to embody the “other” (here: experts by education) who had frequently made me feel as an object of study and surveillance. I did not want to frame the residents in ways that already felt predefined by the white coat and see them as either an exotic, fascinating species or creatures whose lives were to be evaluated by others.

Despite the reluctance that I felt deeply, I stuck by the rules out of respect and sympathy for the staff who gave me access to their world. I joined the health care team for lunch and assisted them with therapy (e.g., giving writing exercises, finding new ways to cook safely, washing residents—which seemed to be treated as less intimate or intrusive than sex talks), which invited them to talk freely about their jobs and the progress that residents were (or were not) making. Respecting the dress code, however, was both an emotional and physical struggle:

Field notes—Day 2—My first working day

Bah. The coat is way too long and constantly gets stuck in my wheels, so hardly practical. Even worse, the coat is way too big for me, so hardly flattering. I really felt fat today. I felt unattractive as well. Bye bye confidence. I wanted to show the residents that it is possible to be both a wheelchair user and attractive, but yeah, that intention—goal?—was derailed. My effort to look well was an altruistic attempt to bring a positive vibe, but I guess it was also self-driven . . . I knew that my presence as the only white coat bearer in a wheelchair would not go unnoticed. I still remember the staring when I was catapulted out of my wheelchair on entering the gala event three months ago, and that was not exactly the kind of red carpet entrance I had wished for . . .

And, here is the moment that I need to come out. Out of the closet and clean. In the first draft of this paper my reflections on my field notes about my encounters with the white coat revolved around how I saw myself as a woman who saw her efforts to look “good” according to a set of norms (here: not overweight and self-composed at all times) disappear beneath layers of uncomfortable coat fabric, as a potential role model in relation to the residents, as a wannabe-peer who was worried that the white coat would create a distancing power imbalance toward the residents that could close down connection, and as an ethnographic researcher who saw her power to observe how the residents interacted with their broken bodies and their caregivers/therapists diminish as well as the ease to participate herself. The white coat underscored for me unequal power relations in research, made me look like the all-knowing health care professional—I was never introduced as such, but the presence of “doctor” in “doctoral research” and “psychology” in my education as a linguist and social psychologist conveyed that impression—, whereas I wanted to interact with the residents on the same level and without barriers that could close down communication ² —after all, I had been arguing in all my conference presentations and scholarship applications that I felt that I as a person with a SCI could

make a difference exactly because I can draw upon my own lived experience as someone who cannot walk nor feel sand tickling my toes etc. to spot gaps in research perspectives, gain people’s trust to disclose, and disseminate the results of disability research in a convincing, authentic way.

Whereas all these reflections are true—I definitely was convinced of their complete truth back then—they also functioned as a cover-up story. My story was that I was aware of my play with marks and normality, of how I used or wished to use my whole palette of identity layers in conscious response of my encounters with the people I met in the field. My story was that I was tolerant of disability, of people with disabilities, and of myself.

The truth is that, at that point, I still needed to feel less disabled than other people with disabilities. I was allergic to being reduced to what the gaze of others pinpoints as my main identifier. When I first put on the white coat, it made my stomach turn, but I simultaneously enjoyed the status it brought along. I enjoyed—and needed?—being perceived as the professional and the support giver, not being treated as the patient for once, not being the care asker, not being perceived as the dependent one. For the purpose of my research, it was important to get close to all the people I met at the rehabilitation center and, especially, the residents as my research questions focused on the lived experience of women with SCI, but I could not resist being thankful for the forged external difference between me and the residents. At times, I even regretted not having the white coat, as I believed it would have saved me from being reprimanded by a graying man for speeding when I was making my way back to the rehab wing after lunch: “30kms an hour is the maximum speed here, young lady!” . . . although my youth might have prevailed over my doctor’s coat in the man’s judgment about the appropriateness of his joke. ³ The white coat was granting me favors. Most of all, however, I enjoyed the forged similarity between me and the health care professionals. As none of the staff members themselves had visible physical impairments, I was quite an exception. One day, I had lunch with the team in the hospital cafeteria, and the day after, the head nurse told me that a staff member of another unit had inquired, “You seem to have a new member on the team?” I had stood out and was recognized by the health care professionals of other units much more quickly than other new members would have been spotted . . . A previously walled world of glitter and glamour had opened its gates.

Peers, Aren’t We All?

The first big crack in my own wall came after 2 weeks of intense fieldwork. Interestingly, in my first draft of this paper, I had decided not to include the field note extract below, waving it away as “less important to show my growth as a researcher.” Now, after my acknowledgment of my own transformation that was set about by the people who I was to transform, I cannot but confess it is the most important extract. Three residents I had been playing sports with, Thomas, John, and Luke, were smoking outside. ⁴ I was about to go home, but I felt drawn to join them for a chat before leaving. I liked them for their honesty, their engagement, and even—switching off my radar for tracing remnants of sexism—for how they welcomed me each day with “well, good morning, flower.” Shortly after, three other male residents joined us. Despite the huge gender imbalance, it did not feel like a men’s gathering where I was excluded. Above all, they were—we were? My field notes say “they,” carrying traces of my ongoing resistance and dissociation at the time—“peers, aren’t we all,” as two of the residents called it. One moment I was gasping for air because it dawned upon me that I was included; I was perceived as a peer. “Of course you were peers, you had just been playing sports together,” my supervisor, a basketball player, commented after reading my second draft . . . back to reality: not making disability to matter is still quite a challenge for me. The next moment I became aware of my stomach, heavily loaded with rocks, when I noticed Luke’s surprised expression upon my confession why I was not quite looking forward to go and swim in my new home city, worried about my environment’s opinions . . . I felt busted, a traitor to their trust, ashamed.

Field notes—Day 10—The residents’ pep talk. I am not weak . . . It’s just . . . I have my own style.

Thanks to the sports therapist’s swimming lessons yesterday, I can now swim in such a way that my neck does not get overused, but my bum looks like a hippopotamus’ nose popping up above the water’s surface . . . “Such a typical disabled’s stroke,” my voice says, before I realise that this is exactly an example of the stereotyping, humiliating logic I am trying to get out of the world through my PhD and in all other aspects of my life.

Luke is quicker in responding than I am: “Well, I hadn’t seen that one coming from you. Isn’t this what you are fighting, this imaging?!”

I explain that I don’t wish to lose my current “status” in Ghent by exposing my different way of swimming. Please let me continue saying I am a well-experienced swimmer. (which I am). But don’t look at me, appearing weak and swimming like my grandfather who only started with swimming lessons at age 65. My grandfather is my hero, but my brothers and I can simply not hold our laughter when he is exploring his water skills.

Luke refuses to let go of me. “Madam psychologist, aren’t you still you? Let people watch. Ultimately it is content rather than packaging that matters, and that is not something you should worry about. You have been given the green light for your doctoral research, with a fancy scholarship, isn’t that something that you have achieved? That wheelchair didn’t have to do anything with it, now did it? I am also still the same, people simply look more.” The other men join Luke. “Yes, isn’t it the content that counts?” John adds: “Everything step by step, you know. Give it some time. Now I am learning to walk with short leg prostheses with feet backwards, and once I can do that, I get longer prostheses like Luke’s, and I start the learning process again. It is not up to others to judge. You are your only measure. For others, it is not difficult to walk 500m, for me it is. If I can walk 100m, really slowly, I am proud of myself, because that is an achievement.”

I remember feeling slightly uncomfortable. All this wisdom for life was well intended, and I wished to internalize the conviction that I was great and my own and only measure, but I felt threatened as well. I felt my positions as social psychologist and researcher being challenged, undermined. Luke sensed it: “Being a psychologist doesn’t mean you shouldn’t be showing your weaknesses. And besides, you are not weak. Remember what the sports therapist said, you have your own style, but you moved quickly. Isn’t that good?” ⁵ I had only just started to get closer to accepting and even welcoming the men under the smoker’s roof, participants in my ethnographic fieldwork, as peers, and I was already receiving counseling from them. Even more, I was getting a beat up for letting my self-worth depend on the result of my comparison of myself with others (able-bodied, or “more” or “less” disabled). Being open for unexpected encounters while doing research was teaching me humility.

My discomfort mainly arose from being explicitly included in a peer group (the membership of which I had considered as mainly unfavorable before) . . . and from a sense of belonging bubbling up from deep-down in my chest, an answer to a longing for belonging I had previously only allowed myself to feel if I could control my position in some sort of hierarchy of disabilities. And, there I was, receiving peer support from people who had only just acquired their injury—I still grumble every time my great-aunt comes in head-over-heels to tell me about the heroic deeds of yet another famous person with a disability who popped up in the media, thinking “has she forgotten that I was first?” even though I always shrink whenever she does put me on the pedestal of The Inspirational Disabled. I have not been able to catch the trigger of this automatic response yet, but a SCI, or the loss of a limb in the case of my newly found peers, is something you acquire, and the longer you have lived with it, the higher your status in the value hierarchies of knowledge and lived experience. Whereas I had started my internship imagining I might provide some firsthand lived experience knowledge to residents, they acted as my peer counselors instead.

It was quite a significant moment, as I had always been reluctant to engage in peer contact, out of fear to get entrapped in the box of “the disabled.” Especially, when close to me another person was present who might trigger the label (making this social category more salient). I was afraid that others would then easily assume we are clinging together and ostensibly conforming to a segregationist ideology as if disabled individuals feel most comfortable amidst “their own kind.” (And honestly, I still am fighting that drawback reflex when I am in the company of people who are visibly not able-bodied and temporarily able-bodied people I do not know well). When Luke referred to the group of people chatting outside—including me—as “peers,” I felt vulnerable in the sense of “weak” at first, associating the word with self-help groups and associating self-help groups with suffering and coping difficulties and associating suffering and coping difficulties with weakness. ⁶ However, it is exactly this moment that has made me comfortable promoting “peer contact” with exactly those words. The residents made me feel and fully realize the value of contact with people living with similarly broken bodies. Being open for unexpected encounters while doing research was teaching me the beauty of vulnerability.

Turning a Border Into Unpredictable Lines of Connection and Encounter

When I let go of the distance mobilized by the coat and by my own internalized hierarchies with the rational, independent, able-bodied subject in the top position, and with it also left my make-up and hair styling and the ambition to be a perfect rolling model of possibility and imagination, space was created for embracing common humanity with the residents to a point where the white coat was not made to matter (engaging in workouts together, exchanging life experiences related or unrelated to disability over dinner, etc.).

The white coat was not a barrier anymore. On the contrary, through my encounters with both residents and staff, it became a lifting bridge that gave access to whichever world I wished to enter. The white coat facilitated blending in with the health care team and becoming familiar with their optimism and their challenges of juggling with time and dealing with their often limited power in preparing residents for everyday life outside the rehabilitation walls. Quite unexpectedly, the white coat also gave me fast lane access to the heart of my research topic. The residents who I was having coffee with and whom I was teaching wheelchair skills all wanted to know why I was wearing a doctor’s coat—they had never ever seen a health care professional in a wheelchair before. I challenged the status quo of “able-bodied” health care professionals versus patients with disabilities. So I told them, honestly, that I was doing my PhD on sexuality and SCI, and that I wanted to feel what it is like to be in rehab and go through that first period of readjusting to your body because I did not remember. Trying to keep my promise not to ask them about their sexual well-being, I talked about my favorite color of compression stockings and my trips abroad. But my PhD topic and my first go at personal disclosure were all they needed to start talking about sexuality and relationships; about their pleasures, fears, and painful encounters; about tips and tricks to be a parent; and so on. I did not initiate a single conversation about sexuality. Stories came spontaneously from all sides: men, women, all generations, with wheelchairs, or without limbs. They appreciated me as a person, treated me as one of them, and accepted me as a researcher.

Yet, the concerns voiced during brainstorms with my supervisors and health care staff about which role(s) to take up during my internship (undercover resident, researcher, psychological counselor, peer support worker, linguist, etc.) did not entirely prove unnecessary. Letting go of feeling different from the residents, I gradually came to more fully understand the challenges, both emotionally and ethically, of opening up to and delving into participants’ life stories. I shared the joy of residents who had returned from their first weekend back home and reported with a head-over-heels smile that they had been able to hug intimately with their partner without transfer problems and without pain, that their pets were not afraid of their wheelchair, that their houses were already partly adjusted to their new needs, and so forth. But I also breathed in the pain of not being able to hug (grand)children, of the prospect of aging more quickly in shoulder joints and its effects on independent transfers and self-care, of the decision not to tell partners that orgasms had become a question mark. My connection with the residents (and the people I interviewed after my exploratory fieldwork), based on identifiability and empathy in both fun and deeply painful moments, enabled me to get closer and deeper into their lived experience than I could have ever wished for as a qualitative researcher, but also rendered me a “vulnerable observer” (Behar, 1996). I needed every inch of my energy and capacity to put my emotional responses in perspective and tone down my fears, especially the anxieties that I had not overcome yet by collecting counterevidence in my personal life. During those moments of vulnerability, my white coat—or rather, the professional persona that I associated it with—protected me.

Letting go of feeling different from the residents also drew the residents closer to me, which brings in a huge responsibility to monitor relational ethics. At times, I felt like a traitor toward the residents. To start, I was expecting them—be it with great kindness and respect—to give me access to “their” territory, reasoning we shared this territory. I had even dared to state in my funding application: “I feel I can make a difference exactly because I can draw upon my own lived experience.” Yet, when we got close to feeling like peers under the smoking shelter (despite the fact that I do not smoke), during wheelchair hockey competitions, and so forth, I was ambivalent, longing to belong and to celebrate connection, yet also feeling resistance to accept peer status and feeling not quite similar enough. I felt I was betraying their openness to connect. I was struggling not to join any club, fighting “the uneasy, often self-destroying tension between appearance and identity” (Samuels, 2003, p. 233), and they did not know. Also, I had not forgotten that I was at the rehab center primarily as a researcher, and I could not guarantee that the people I was interacting with remembered that as well. I did not audio record a single conversation, and did not analyze their personal stories, but I was observing the atmosphere at the rehab wing and they were sharing their personal stories with me spontaneously. I did not want to see or use the people who confided in me as a one-way data collection bank. With a mixture of feelings of contempt and disgust, I feared that my traveling at the rehab center would fit Nietzsche and Deleuze’s cruel image of the nomad who opposes his or her own code of conduct and takes whatever she or he can get wherever she or he is, nomads who spread and go to different places to own a domain (Braidotti, 1994; De Kesel, 2006), rather than wander about to be surprised what comes on their path.

Of course, I was not such a nomad. I became a nomad, balancing between being a researcher and a person-thinking-about-job-possibilities-in-health-care and a woman and a person with SCI and “simply me”—or completely me?—but prioritizing recognition and embracement of common humanity. The beauty of allowing connection with participants is the gift of stories that arise in the natural flow of conversation. The issues of my PhD project “emerge[d] organically, in the ebb and flow of everyday life” (Tillmann-Healy, 2003, p. 735). A grandmother’s worries about not being able to caress her grandchildren in her arms anymore, a young boy’s conviction that he would never be able to please a girl and a young man’s struggles to find alternative ways for making love to his wife, health care professionals’ worries about residents who did not make eye contact, an older woman’s recollection of a visit to a sexologist who could only give “I am sorry, but I can’t help you” as advice when she and her husband approached the expert with the question of how to get around their physical problems, a middle-aged woman’s relief of having dared to get (successfully) pregnant 20 years before despite her physician’s warnings and an adoption center’s message “Are you sure you want to proceed? If two healthy people turn up, they will be given priority,” the most outgoing woman’s tears after having been left in her own stool for 2 hr and not being given the clothes she had chosen—that last bit of autonomy snatched away in front of her face, . . . These glimpses of lived experience were not brought to the surface in interviews, but mostly popped up during my observations in the physiotherapy hall, in the kitchen while trying (in vain) to bake pancakes in a curved frying pan or while chopping carrots for spaghetti, when we were sweating together at the hospital gym, during a race on wheels in the city or on the escalator (in a shop that actually prohibited anything or anyone on wheels to use the moving staircase), over coffee and dinner, and when residents were chatting in their rooms in-between therapies and invited me to “just pop in” and look at the drawings from their (grand)children while they continued gossiping about fellow residents and staff. As a traveler, I meandered freely around their territory in space and time, conversing with them in the original senses of the Latin word “conversation” as living, moving, and turning about together (see Kvale, 1996, on the interviewer as a traveler).

And perhaps the most beautiful outcome of allowing connection with participants was the emergence of energy to not just listen to stories but also act upon them, the enlightenment of a fire to fight for human rights and social justice—the ultimate goal, for me (and most postmodernist researchers, I assume), to conduct research. Allowing connection, I even became angry for the first time in my life (as far as I can remember). I was angry about how sometimes pain and struggles were left unattended by staff knuckling under the tight time frame in which they needed to fit in all the washing and toileting and feeding and disinfecting. My anger expanded when I was confronted with how some people who were working hard to get their lives back on track took the weight of the consequences of a failing system on their shoulders:

Field notes—Day 17

Julia kept repeating “I am not used to this” through her tears . . . as if that explained to her and even justified why she felt so miserable. And I cried with her, although my tears were not visible. Because it hurt me deeply to feel that this woman felt bad about feeling miserable. And because I know that my own dependence on others and lack of control over my body still hurts after a quarter of a century. I would be lying if I said “it’s something you get used to.” No. It is that kind of pain you learn to ignore with the exception of a few cracks when it becomes too much. It is the kind of pain you do not consciously acknowledge every single second of every single day, because that would leave no energy for living. But I could not tell her. Instead, I asked whether it had happened before, and we discussed how we could try to prevent these issues from happening again.

In the end, my anger made me even more passionate about my research and making a difference.

Fieldwork Method in Hindsight: Diffractive Tripping

My stay at the rehab center was not set up as an autoethnographical study. It was to be an introduction to one of the contexts I would be studying indirectly when interviewing women with SCI about their sexual and relational development and readjustment, in general, as well as related communication experiences, in particular. However, being introduced by the head physician to the staff as a social psychologist and intern, and clearly being a woman in a wheelchair to every person I encountered, my presence at the center quickly started to lead a life of its own. I immersed myself in the rehabilitation culture, participatory observation became observing participation, and “studying ‘them’” became “studying ‘us’” (Tillmann-Healy, 2003, p. 735). After Corbette’s (1998) description of ethnography, my preparatory internship turned out to be “an immersion within the deep culture of a social group that attempts to find hidden treasures and submerged dangers” (paraphrased in Goodley, Lawthom, Clough, & Moore, 2004, pp. 56-57). I departed the familiar academic environment inhabited by rather distant observers of the “deep culture” of life with disability and suddenly arrived and tried to find my way at a destination where the culture of living with SCI is “at its deepest” in many ways (due to the high visibility and prevalence of people with medical problems and due to the acuteness of the injuries in the rehabilitation center). Little did I realize that I would be entering the eye of my own storm of becoming with a broken body, with ocean waves and water flows under the surface converging from all directions.

During formal one-to-one interviews with women with SCI, I tend to feel quite “normal” and “unmarked.” In these private encounters, my wheelchair (and the SCI that necessitates the use of this mobility tool) is not a marker of disability but “merely” an identifier, which unintentionally acts as key to barrier-free conversations. In the rehabilitation center, however, I experienced that which went unmarked suddenly as marked and judged: SCI became a medical condition to be cured as much as possible for health care professionals, a disability to be pitied or supervised for visitors, and the signifier of “peerness” that drew residents to me—and possibly myself to them—and that scared but was also valued by health care professionals. Their white coat, in turn, was not simply a garment that I found ugly and unhandy, but became a rule to be obeyed, a position to resist, an object blocking my wheels, a distance to fear and to embrace, membership to desire, a key to unlock gates, even a bridge. By immersing myself in this deep culture, a “playful research” practice unfolded in which implicit attitudes held by myself and others toward broken or different bodies became revealed (see Anderson & Braud, 2011; MacLure, 2003, on playful research).

To loop back to me moving around in the field as a nomad and to me entering the eye of my own storm of becoming with a broken body, with ocean waves converging from all directions, I label my becoming of a sexuality and disability researcher as a diffractive trip accelerated by my rhizomatic immersion in a place and time where the broken body is omnipresent. My choice for “diffractive tripping” is based on Barad’s (2007, 2008) plead for diffractive methodologies (see below), on my love for traveling, and on what one of my participants said during an interview, namely, that her sex life with SCI had considerably improved after she had started smoking weed again, as the drug made her much more sensitive for and receptive of or toward every single touch and movement of her partner and herself, whereas without it, she feels less connection with her body, and, thus, also with herself and her surroundings. My stand is that when you work with people, including yourself, and you study them, you need to be open for everything, you need to see and hear everything and be conscious of what you feel . . . and to touch upon the illegal nature of weed, sometimes the most unexpected, yet eye-opening, findings come when you do not follow the path laid out by certain research paradigms.

Studying the tension between the immersion of oneself as a researcher (and person) in a culture and simultaneously maintaining a nomadic research identity, I came to visualize myself (after visiting the floating islands between Peru and Bolivia) as sometimes hopping from one floating island to another, sometimes drifting toward, sometimes being smashed onto the shores of an island that was yet to be discovered, and then spending some quality time on all these different floating islands to get to know the feel of the place. One floating island would be the island of the people in rehab, another one would be the island of the health care staff, another one would be the island of the visitors, another one would be the meeting venue for all the women of the Culture of Floating Islands, and so forth. Mapping these floating islands and zooming out, you can see how the islands are all connected, sometimes with bridges, sometimes with weeds that grow under water, sometimes with rocks, and with water flows driven by temperature, wind, and tidal forces, yet also always moving and without one fixed central island.

Now imagine these water flows that drove me from island to island, causing both forceful and gentle waves pushing against the shores, to be the lines that make up a rhizome. As Deleuze and Guattari (1987) described, “The rhizome is made only of lines: lines of segmentarity and stratification as its dimensions, and the line of flight or deterritorialization as the maximum dimension after which the multiplicity undergoes metamorphosis, changes in nature” (p. 21). Being driven by these lines and sometimes finding the strength to jump on another line, me and my white coat got different meanings. For instance, lines of stratification drove me to the island of health experts when I was wearing the white coat, or, when I was not wearing my coat, to the island of people with disabilities where I was spotted by an inhabitant of the island of visitors watching others through a pair of binoculars. Sometimes reverse currents or lines of flights drove me to the island for women, or even made me splash above the surface so I could get a temporary glimpse of how all the islands were connected.

It was diffractive analysis that helped me to lay bare the water flows that drove me from one island to another, to dissect the nature of these flows, and to discover what it is exactly that I kept from all my travels. In physics, diffraction refers to various phenomena, which occur/manifest “in the apparent bending of waves around small obstacles and the spreading out of waves past small openings.” ⁷ Diffractive analysis, then, pleaded for by Barad (2007, 2008) and Haraway (1997), can be described as “a wave-like motion that takes into account that thinking, seeing and knowing are never done in isolation but are always affected by different forces coming together” (Lenz Taguchi & Palmer, 2013, p. 676). Its purpose is “to disrupt linear and fixed causalities, and to work toward ‘more promising interference patterns’” (van der Tuin, 2011, p. 26). To study the interference of the waves in my storm of becoming, I kept revisiting both my field notes and my previous drafts while writing, and I kept questioning my meaning giving of the white coat, my interactions with the health care staff and the people in rehab in the hospital, and also after my fieldwork my encounters with research participants (the women with SCI who I interviewed), with colleagues, the words that I used whenever I talked about my research experiences, and so forth, so the relationship between signifier and signified never sedimented, and I never took the truth of my words for granted.

During my fieldwork, I kept my notes in a diary, tracking my observations of myself, residents, health care staff, and visitors, as well as my reflections about what I felt and why. The first draft of this article, which I began writing about half a year after the fieldwork, started with a first selection of field notes to portray my evolution as a sexuality and disability researcher. Between the end of my fieldwork and my first draft, I had an internal dialogue about wishing to talk about how experiences of the body and sexuality had its place in the rehabilitation center but struggling with ethics and about wishing to show the emergent multiplicity of disability from an insider’s perspective but struggling with some kind of resistance that I was not able to pinpoint at the time. The second draft of the paper was driven by a critical revisiting and revision of all my field notes and the first draft. Between the beginning of the first draft and the beginning of the second draft, more than a year passed and I completed two personal development and coaching courses where I was forced to peel of all my layers of protection and justification stories and then acknowledge and embrace what was left.

Whereas not everyone has the luxury of taking the time to let the analysis and writing ripen and go consciously into a personal breakdown storm and subsequent breakthrough, I definitely recommend to constantly ask yourself how much story it is that you are writing, ask yourself what is left, and then to not erase those stories but work with them, as they give us insight into the fluidity of identity and the emergent multiplicities we all are. When I argue for letting go of feeling different in research, I argue for getting off your island, for letting go of the fear to follow the water flows, because then you can start exploring all these islands and connecting the dots in the rhizome. The beauty of visiting all these islands and taking a ride on these different streams of water and even moving tectonic plates is that you will never be the same again, and that new normalities will enfold. From all these islands and water streams you will take some treasures with you, seeds with which you can grow either flowers or weeds; sand, which can be white silica sand you can use to clean your nuggets ⁸ ; or sand, which will keep itching until you have given it your full attention.

Speaking of itchy sand, one might wonder what truth is left in my words about how I have moved away from disability, given my current engagement with disability—epitomized by this article’s title and my ongoing work with the life stories shared by women with SCI. How can we talk about the fluidity of life without confining it in words? Throughout my interactions with my participants and their stories, I am cautious of binary thinking such as ability/disability, broken/complete, observation/participation, researcher/researched. I do not see my participants as disabled. They are women. I ask them about their “life stories with focus on sexuality and relationships,” not disability. When they report disablement or identify themselves as disabled, I ask for context. When I analyze their stories and write up my interpretations, I approach their lived experiences as multilayered and ever shifting. When their words signal stuckness, I play with the definition of research, ask questions that could open up imagination, and set up ethnographic fieldwork studies that can trigger change. And, whenever disablement occurs, I will call it by its name, until there is no need anymore.