Locating Sickness: Disability, Queerness, and Race in a Memoir

Author Bio: 

Yalda Hamidi is Assistant Professor of Women’s and Gender Studies at Minnesota State University, Mankato. Yalda is interested in transnational, postcolonial, and Islamic feminisms. Her work area is focused on Middle Eastern and Iranian feminisms, war, diaspora, sovereignty, and the relationship between women and the nation. Yalda’s research, “From Female Patriotism to Diasporic Womanhood: Negotiating Diaspora and Feminist Aspirations,” challenges the appropriation of Iranian diasporic literature in feminist and literary canons and suggests new ways of applying rhetorical listening for reading the multi-ethnic feminist literature.

Val Moyer is a PhD candidate in Women's, Gender, and Sexuality Studies at Stony Brook University. Her dissertation: Muscles, Testosterone, and Other "Threats" to Women's Sport, analyzes current sex testing practices in international women's track and field as a form of global racialized surveillance. This project combines theoretical tools from Transgender Studies, Disability Studies, and Feminist Science Studies to interrogate the geopolitical tensions and anxieties over women athletes.

 
چکیده: 

This paper re-reads Sick: A Memoir (2018) by Porochista Khakpour, as a transnational feminist and queer text, to investigate how the author locates her disability and queerness with the diaspora, homelessness, and rise of governmental violence. Through the lens of feminist and disability studies, Sick can be read as an outstanding narrative of the queerness, disability, in-between-ness, and of course, resistance of a queer and disabled woman of color. The paper argues that Khakpour’s story should be regarded as an attempt to write complexities of intersectional and multi-layered identities that challenge the discourses of detection and diagnosis; criticize the politics of race among the community of Iranian-diaspora and in America; and highlight the role of home, belonging, and the feeling of homelessness caused by state policies of nation-building and exclusion. Further, Khakpour proposes a new guideline for feminist geography that accommodates female, queer, disabled, and diasporic Iranian-American bodies on the expanding map of excluded and erased subjects.

Cite This: 
Yalda Hamidi, Valerie Moyer. "Locating Sickness: Disability, Queerness, and Race in a Memoir ". Kohl: a Journal for Body and Gender Research Vol. 6 شماره 2 (23 نوامبر 2020): pp. -. (Last accessed on 14 آوریل 2021). Available at: https://kohljournal.press/fa/node/254.
Share: 

Copy and paste the URL link below:

Copy and paste the embed code below:

Copy and paste this code to your website.
PDF icon Download Article (PDF) (502.54 کیلوبایت)

الاهتداء الى موضع العلّة

Aude Nasr

   Locating sickness

Introduction

It was Fall 2018 when I (Yalda) taught a course on the Literature of Iranian Diaspora. Sick: A Memoir (Khakpour 2018) was the last piece my students and I read and discussed together. As I posed my first question to the class: “How did you like the book?,” many raised their hands. Among them, K, anxious and excited, responded: “I loved it. It was exactly my story, or the story of my family. The only problem was that I did not know how to understand her difference from myself. Khakpour sounded completely American.” In response, we spent two weeks discussing different elements of sickness, disability, and queerness for the female brown body of the Iranian-American author.

While my student’s question was sincere and curious, in the Spring of 2019, I presented my work on Sick at an academic conference and was caught off guard by a comment from a senior colleague, who called Khakpour “just another American sick girl” and her memoir one more example of “trendy disability whining.” Later, I shared this comment with my friend, Valerie, and co-author of this piece. What you read here is our attempt to translate the book Sick for multiple fields of Transnational Feminism, Queer Studies, and Disability Studies. We believe Sick is an outstanding narrative of the queerness, disability, in-between-ness, and of course, resistance of a queer and disabled woman of color. We argue that Khakpour’s story can be read as an attempt to write the complexities of intersectional and multi-layered identities that challenge the discourses of detection and diagnosis; criticize the politics of race among the community of Iranian-diaspora and in America; and highlight the role of home, belonging, and the feeling of homelessness caused by the state policies of nation-building and exclusion. Further, we argue that Khakpour proposes a new guideline for a feminist geography that accommodates female, queer, disabled, and diasporic Iranian-American bodies on the expanding map of excluded, erased, or otherwise undetectable subjects.

 

Sick: More than a Memoir

Porochista Khakpour, author of Sick: A Memoir, is a well-known author of Iranian-American literature. Her two novels, Sons and Other Flammable Objects (2008) and The Last Illusion (2014) received multiple awards and recognition of literary critics,1 and her other writings (essays, features, reviews, cover stories, and columns) appear in various media outlets. In her essay collection, Brown Album: Essays on Exile and Identity (2020), Khakpour highlights the significance of race and the role of racism in the lives and experiences of the Iranian-American community. Not only does the author open up about the pain and suffering discrimination has caused her people, but also in a more critical tone, she reveals how striving to stand for the ideologies of ableism and whiteness has complicated the relationship between different generations inside the community. In her memoir, Sick, she shares her story of living with Lyme disease as a second-generation immigrant, a brown Muslim woman, and a member of the queer community. Not surprisingly, any of these identity markers have complicated the sickness, and showed her readers how, as a result, one’s sick body can be perceived, treated, and carried differently.

Sick: A Memoir follows Khakpour’s life roughly chronologically from her childhood, in which she moved from Tehran to Los Angeles, and through her adult life in New York and many other cities in pursuit of her career as a writer. This thought-provoking memoir consists of two types of chapters. The main chapters of the memoir address Lyme and issues related to the disability of the author directly. All of these chapters are named after one or multiple places where the story takes place or is related to it. For example, the first chapter, “Iran and Los Angeles,” highlights the significance of 1979 Revolution and diaspora in Khakpour’s family life and her sickness. Among these chapters, three are titled “New York,” three include Los Angeles, while two incorporate Santa Fe in their names. These repetitions mark the author’s circular movements in the States. However, in re-writing the landmarks and transgressing the geography that an able-bodied white man would present, Khakpour comes up with new narratives and brings fresh elements to her readers’ view that could have been overlooked by a more privileged author, such as the kind of sub-par medical treatment she received at a hospital in a white suburb. In addition to chapters one to ten, the memoir contains smaller chapters that raise cultural concerns about, and caused by, the intersection of disability and gender, race, and religion of the author. It is through these shorter chapters that Khakpour complicates and enriches the picture of sickness and disability by adding transnational elements to the description of her Lyme disease. Her titles, “On the Wrong Body,” “On Support,” “On Appearances,” “On Place,” “On being a Sick Person,” and finally “On Love Lost and Found” summarize some of the issues that the writer has brought into the spotlight.

 

Sickness, Undetected

In working through themes of detection and diagnosis of Lyme disease – a disease, (like Khakpour’s life) that has everything to do with location – Sick: A Memoir works against a teleological illness narrative, while mining the gaps and spaces in Disability Studies around diasporic subject-hood, race, chronic illness, and environmentally-based disease. In the process of getting to a definitive diagnosis, Khakpour hits snags and roadblocks that result from a complicated and lesser-known disease (Lyme) and from her subject position as a brown, Muslim woman. The influence of these multiple layers mix and are hard to separate throughout here narrative.

Lyme disease is a clear example of the way disease and disability are social as well as biological phenomena. As a tick-borne illness that is only present in some places and only received attention from doctors in the mid-1970’s, Lyme disease and its chronic effects are not well-understood and are hotly debated within the scientific community (Halperin 2015). The difficulty of diagnosis, even with testing, and the wide range of symptoms that are close to other chronic illnesses make it both difficult to detect and misconstrued as “fake” by some medical practitioners, as Khakpour encounters (Halperin 2015).

Lyme’s elusiveness is then combined with the systemic racism and patriarchal structures within medicine. Khakpour experiences what many people of color report in medicine of not being believed by doctors, especially when reporting pain (Mossey 2011). This is combined with the idea that women “fabricate” their pain or are hysterical, leading doctors to label women’s pain as “medically unexplained” or attributing symptoms to a psychological, rather than biological cause (Samulowitz et al. 2018). There is a new, yet growing body of research offering an intersectional analysis of health disparities and problems with accurate diagnoses for women of color in the U.S. Still, this literature tends to focus on Black, Indigenous, and Latina women because they face some of the steepest inequalities in healthcare, particularly around maternal healthcare2 and there is not enough research particularly on brown, Muslim women’s experience in U.S. healthcare, which would help contextualize Khakpour’s personal narrative.

Disability Studies critiques the stigma that both surrounds and produces the disabled subject position. But what happens when stigma envelopes a disease itself as well? Khakpour’s memoir is clearly in conversation with other illness narratives, such as Susan Sontag’s Illness as Metaphor (1988), and Audre Lorde’s The Cancer Journals (2006), and actively troubles some of the models and assumed subject positions of disability studies as a field. This puts Khakpour’s memoir in a queer relationship to the field of disability studies. Throughout this section, we discuss models of disability which Khakpour’s illness narrative aligns with or disrupts. While disability and illness are not the same thing, disability studies theorists offer analytical tools that can be useful in critiquing medical models of illness, or ableist structures.

In Illness as Metaphor, Susan Sontag writes:

I want to describe, not what it is like really like to emigrate to the kingdom of the ill and live there, but the punitive or sentimental fantasies concocted about the situation: not real geography, but stereotypes of national character. (1988, 3)

Sontag describes her project – to interrogate the fantasies, metaphor, and imagery that get constructed around specific illnesses, as well as the use of illness as metaphor more broadly. If Sontag’s project is to excavate and analyze the “stereotypes of national character” and not the lived experience of being ill, Khakpour does both, and in fact shows how these are inseparable and particular to one’s subject position. Khakpour encounters the “metaphor” of Lyme over and over again in her memoir, as something which is potentially not real, or is “the disease of hypochondriacs and alarmists and rich people who have money and time to go chasing obscure diagnoses” (21). She explains that this is a controversial disease within the medical profession. This image of Lyme, as a disease not well known or even deemed “fake” by the medical establishment, determines how she is treated, or rather not treated for it, as well as the (in)accessibility and (un)affordability treatment.

The social model of disability positions the disabling force outside the body in the ableist society and built environment. Yet, this cannot adequately describe Khakpour’s experience with Lyme disease. Disability, Feminist, and Queer Studies scholar Alison Kafer describes critiques of the social model, explaining that “people with chronic illness, pain, and fatigue have been among the most critical of this aspect of the social model, rightly noting that social and structural changes will do little to make one’s joints stop aching or to alleviate back pain” (7). While the social model functions as a largely empowering alternative to the medical model which sees disability as a problem of the individual to be “cured” and ignores societal structures, Khakpour’s struggle with illness comes largely from not being legible at all within the medical system. She is insistent that something is physically wrong, while medical professionals try to convince her that her problems are psychological. Khakpour’s persistent search for a diagnosis and treatment is a narrative of trying to get into this system of medicine, to be decipherable within it, and this is a different fight for access than is discussed in most of Disability Studies. As Kafer points out, “the social model can marginalize those disabled people who are interested in medical interventions or cures” (2013, 7). For Khakpour, a clear diagnosis is a positive thing. In addition to a key that unlocks treatment, she describes feeling less alienated from her body after receiving the diagnosis: “On the ride back home, I felt like a stranger in my body, but this time I was a different kind of stranger. A traveler, or a tourist. Someone who would one day look at this and maybe not even remember it” (210). The feeling of being out of place remains, but it’s inflected with an optimism that was not there before the diagnosis.

Instead, Kafer offers a political/relational model which “situates disability squarely in the political” (9), while highlighting that the position of disability is always in relation to an able-bodied norm, and always in relation to other axes of power, such as race, gender, sexuality, etc. For example, through the political/relational model readers can ask questions such as: Why didn’t Khakpour get a diagnosis earlier in her long saga with medicine? Sick demonstrates the combined effects of racism and sexism in the diagnostic process, which is still under-researched within medicine. Kafer’s model allows for more analysis of the different vectors of power that affect Khakpour, but we argue that it still does not fully encompass the dynamics of the bodily problems of pain, insomnia, and addiction in Khakpour’s life even while it acknowledges the politics of diagnosis and treatment.

In Khakpour’s narrative, the cause of her illness is one of the many unanswered questions that continue to thwart any healing. This is a facet of illness that is not well encapsulated in those models of disability studies that focus solely on empowerment. As an important interjection, queer and critical ethnic studies scholar Jasbir K. Puar interrogates the debilitating effects of global capitalism, settler colonialism, and Western imperialism in her book The Right to Maim: Debility, Capacity, Disability (2017). She argues that debilitation is endemic to these systems, rather than exceptional, and “mobilize[s] the term ‘debility’ as a needed disruption (but also to expose it as a collaborator) of the category of disability and as a triangulation of the ability/disability binary, noting that while some bodies may not be recognized as or identify as disabled, they may well be debilitated, in part by being foreclosed access to legibility and resources as disabled” (XV). Puar’s term, debility, offers a way to describe Khakpour’s state of bodily pain and symptoms that are not yet legible as Lyme. She is debilitated before the cause is found or named, and before she is afforded the credibility of having a CDC level Lyme case.

Sick also demonstrates the importance of personal narrative in relating to readers in a way that theories and models cannot. It’s through the vivid descriptions of symptoms, familial and romantic relationships, and intimate, emotional moments that readers connect with Khakpour’s story. It is also through the medium of memoir that we see the shortcomings of disability theories that do not contend with axes of power that interact with disability, make diagnosis elusive, or fail to offer a political analysis of painful bodily feelings.

 

Feminist Geography for a Sick Queer Subject

While the last section worked through the themes of diagnosis and detection, which were elusive in Khakpour’s illness narrative, this section highlights the ways in which her memoir is shaped by an understanding of location. In pinpointing the location of her body, Khakpour pays attention to Iran and America, in addition to the imagined communities and spaces related to any of these two places. She begins with specific names of places in America and makes her way into a diasporic space. One the one hand, she locates her roots among the diasporic community of Iranian-Americans in Los Angeles, where her family lives. One the other hand, the manuscript opens with the chapter “On the Wrong Body” and closes with another chapter titled “Anywhere Else and Away,” to highlight the importance of variety of diasporic spaces for sickness.

Khakpour’s family settled in California upon their arrival to the States. One can point to aspects of Khakpour’s mapping of California for her Iranian-American refugee family that makes it distinctive. While some of the well-known narratives of Iranian diaspora are filled with the expression of wealth, Khakpour frankly addresses the issue of poverty her family has struggled with all their lives. She explains to her reader that Californian and New Yorker lives had different meanings for different social classes of the Iranian-American community. In awkward juxtaposition of the gloominess of a diasporic girl, LA culture, filled with sunshine, yoga, optimism, and happiness, makes Khakpour feel out of place and never at home on the west coast. In her words, “Los Angeles never felt glamorous. It felt dark, dangerous, lonely, full of trauma and isolation” (85-86). The accumulation of these feelings pushes her to run away for college.

In sharp contrast to the west coast, New York epitomizes everything Khakpour has craved. She chooses Sarah Lawrence College in particular because of two factors: its closeness to the city, and its distance from the supervision of her parents. Her years of college life fulfill Khakpour’s dream to the fullest. She manages to break all the rules put in place by her restrictive Iranian parents. Khakpour intentionally develops a smoking habit within the first two weeks of college, experiences college party culture, and indulges in different drugs. While any of these elements sound terrifying for a young girl’s life, the author finds her peace within them, as if the ruin inside finds its translation in the lifestyle she creates for herself in New York. In this environment, she has friends who hate life as much as she does, and most importantly, in New York she escapes the expectations of an immigrant family who never accepted her as a sick person. Conflicting experiences of friendship, acceptance of the sick body, and the melancholic milieu of New York vs. the loneliness, denial, and annoying cheerfulness of Los Angeles make these two cities into two opposite poles in the life of the author. In contrast, in other Iranian diasporic memoirs, particularly in ones written by authors who lived their adult life in Iran, the binary of the East vs. West mostly translates into Iran vs. America. However, for the child of the Iranian refugee family, this binary converts to New York vs. Los Angeles in Khakpour’s memoir. This is one of the many ways Khakpour deconstructs the Orientalist binary.

Despite the presence of American cities in the memoir, the reader can barely find more than a few sentences about Iran. Against this absence, Khakpour identifies openly as Iranian-American and speaks candidly about her sense of being Iranian during different social and political eras in the United States. Some part of Khakpour’s understanding of Iran comes from the feeling of homelessness, or not fully belonging to America. The image of the home, Iran, has transferred from parents to children as a family heirloom. In opposition to this comforting image, Iran gets constructed within the political milieu and represented in American media. This xenophobic representation of Iran follows Khakpour, like other members of this diasporic community, for the rest of her life. During the memoir she reminds readers about how traumatic events such as childhood memories of the 1979 Revolution, war between Iran and Iraq (1980-1988), seeking refuge, and later 9/11, have triggered Lyme relapses and anxiety attacks that affected her life. She goes further and speaks openly about the role of “this administration” on her health: “When the Muslim Ban became constant on the news in 2017, when I found my home country rather unsurprisingly on the list of six countries that had been designated problems according to this administration, I immediately had acute plunge in my health” (167). Khakpour explains the role of PTSD and anxiety on the progress of one’s Lyme and concludes that “I sometimes wonder if I would have been less sick if I had a home” (168).

Because of the racial targeting of Iranians and Iranian-Americans in the social and political context of the US, another pattern in Khakpour’s movement throughout the memoir is bracing for racism and Islamophobia whenever she needs to go to the hospital. In these dire moments, after extreme symptoms or accidents, Khakpour has to be defensive, especially when talking to drivers in transit. She explains that hospital visits are routine with Lyme, but it is clear that they are still huge unknowns – sites of anxiety as much as they are of healing. In the first few scenes of the narrative, after refusing to ride in an ambulance in order to keep her dog, Khakpour cautiously makes small talk with her tow truck driver who admits “Arabs have not been my favorites you know?” but that Khakpour is “a good rep of your people” (19). In this trapped position, alone in a car and trying to get safely home, Khakpour decides not to argue, not even to correct him that she’s not Arab, as a survival tactic. Later in the memoir, during a cab ride to the hospital she even uses the tow truck driver’s words in a preemptive defense to her taxi driver: “Excuse me, sir, just so you know, it’s Farsi. I’m Iranian, but not one of the bad people, please don’t be worried by my language” (249). She has to interrupt her frantic call to her mother to ensure the driver won’t lash out at her, as this is just after the Paris attacks. Defending against xenophobia and expecting racism in moments of crisis adds a facet of insidious discrimination that Khakpour must maneuver around simply to get to emergency medical treatment, that would not be present in the narrative of a white disabled subject.

The “whitened” or “Americanized” readings of Khakpour’s memoir (mentioned in the introduction) mirrors the peculiar way in which she is both misdiagnosed and is physically misread and perceived as white during her illness. Not only does the author get denied, or told her illness is “in her mind” by white male physicians, even the symptoms of sickness of the brown body are sometimes misdiagnosed by the white supremacist culture. In a brief chapter named “On Appearances,” she describes a moment on her way to an ER in Washington D.C. where, looking for solace from a black woman paramedic, she pleads: “Please don’t take me somewhere where they are racist,” only to be met with an “appalled” look. She realizes she is being read as white (128). After arriving at the Howard University ER, she explains that a godsend Muslim brown doctor gets her, and it gives her a previously unexperienced level of comfort. What the doctor can understand is the fact that “illness turns me white – thin and pale to the point that everyone congratulates me at my sickest as I transform to a white woman in appearance” (129). This passage is of extreme importance, as Khakpour deconstructs clichés of white health by explaining how, what is considered to be a white women’s healthy appearances, having a thin body, bleached/ blonde hair, and pale skin, can be another woman’s symptoms of chronic illness.

Moreover, while Khakpour never highlights this point clearly, by identifying as a brown Muslim body, she fights racism on two fronts. The more recognizable aspect of racism is the one that comes from the discrimination against Muslims and Iranians (among other communities), through the white supremacist gaze. However, the other more concealed layer of racism comes from the section of Iranian diasporic community that insists on the authentic whiteness of Iranians and aims at separating this community from Arabs and other Middle Eastern people. In The Limits of Whiteness: Iranian-Americans and Everyday Politics of Race (2017), Neda Maghbouleh addresses how the racial categorization of Iranians in America as white has divided this community into two groups, ones who embrace it and others who resist identifying with this version of whiteness. Khakpour frankly stands in solidarity with the latter group, as she shows up for her students as the only professor of color on campus, and refuses to identify as white, even when doctors misdiagnose her sickness as a sign of her “assumed” whiteness.

It is these elements of outsider-ness, of not feeling at home, that both result in and are exacerbated by Khakpour’s family’s lower-class status, that remain under-theorized. Disability Studies scholar Nirmala Erevelles points out the ways class has been largely ignored in this scholarship. She explains that “while social class does show up in disability studies’ narratives, it is usually conceived of as a social/ cultural experience…not as a critical analytical category” (2011, 5). Similarly, although Khakpour’s income and inconsistent health care coverage are highlighted throughout the memoir, she doesn’t realize how much wealth enables healing until she benefits from a wealthy friend’s time and money in her move to Santa Fe. She describes the way her move felt like a vacation, even though this was her friend’s, Sydney, regular life:

It was the first time that it occurred to me that wealthy people had such options, how with money you could actually take a stab at life, no matter how bad the odds. Bills were paid without me seeing them, all sorts of needs of mine were met without me asking, and I was able to believe this was a story that could end well (2018, 217).

This realization prompts the reader to reflect on the possible ways in which, as Erevelles puts it, “survival seemed contingent on economic rather than medical issues” (2018, 13). Khakpour’s circular movement in the States is always driven by job insecurity and a need to access medical treatment.

In summary, in Khakpour’s memoir, illness operates on the surface of the narrative, but race, class, and Muslim identity are the less-detectable shapers of both the narrative and the illness itself. A Lyme tick is simultaneously “out there” – separate from the human body and part of the environment – but once it bites, the disease becomes internal, continuously altering and “attacking” the body. Similarly, Islamophobia, racism, sexism, and the prohibitive cost of medical care are external features of societal structure and alter the internal dynamics of the body simultaneously – causing anxiety and spikes in symptoms. It is this false separation between the body and society that Khakpour’s memoir also disrupts within the field of Disability Studies.

 

Assembling Transnational Queerness

Khakpour opens her book with a short introduction “On the Wrong Body.” Under the influence of white feminism and colonial representation of the queer brown and Muslim body, a reader may assume that by “wrong body,” the author implies notions of sexuality exclusively. This imagined body of a homosexual diasporic Iranian is primarily the byproduct of two discourses that Sima Shakhsari, Iranian-American Queer Studies scholar, calls out as “homoerotic of exile” and “homopolitics of diaspora,” in which “the normative Iranian homosexual is produced as a victim of backward homophobic Iranianness, awaiting representation and liberation by new media technologies, while the Iranian citizen is disciplined through cyber-governmentality as a heterosexual subject who is expected to reject the tradition, tolerate and defend homosexuals, and avoid perversion” (2012, 14). In resistance to becoming a “neo-liberal homo-economicus,” or the sexualized victim of the Muslim world who seeks refuge in the hypothetical freedom of the West (Shakhsari 2011, 6; 2020), Khakpour immediately rectifies that the wrongness of her body is “deeper than gender and sexuality, more complicated than surface appearances” (5). Her statement reduces gender and sexuality to a superficial level of attributes and disrupts a notion of LGBTQ politics that is built on the opposition of West vs. East.

Without taking Khakpour’s anticolonial notion seriously, another misunderstanding happens about the way she addresses her own sexual orientation. Only in a short paragraph beginning on page 239 of a 255-page manuscript does she mentions that she has had female partners too, and she’s identified as queer since the mid-90s. She adds, “Because I am offered the heterosexual privilege in dating men so often, I tend not to rush to mark that box. Perhaps it is also because I feel overwhelmed by all my marginal identifiers” (238-9). In reading the memoir for the course, The Literature of Iranian Diaspora, some of Yalda’s students reacted less than sympathetically to what they considered the author’s late and insufficient advocacy for the LGBTQ community. One of them even made the argument that the author intentionally hides the sentence somewhere most readers could not find. They felt betrayed and disappointed that the author did not advocate for them.

Even though I understand my student’s feeling of invisibility, such an argument makes assumptions on multiple levels: first, it disregards author’s intersectional identity. Second, it overlooks the fact that Khakpour’s memoir resists colonial notions of sexuality. Moreover, the claim ignores the fact that not in every single culture does queerness pair with the idea of a closet and coming out. In response to the latter, and in Professing Selves: Transsexuality and Same-Sex Desire in Contemporary Iran (2013), Afsaneh Najmabadi explains that Iranian queer community has pursued a variety of strategies in asserting their identities, which includes coming out partially and not speaking out in front of their parents, their professional communities, and outside the close circle of queer friends. Khakpour’s short discussion of her sexuality also demonstrates a very real fatigue with having to disclose and reveal everything to the reader, offering a critique of visibility politics. But her narrative also highlights the ways her sexuality and romantic partnerships are not well encapsulated in the neat boxes of L-G-B-T-Q. If she emphasized bisexuality, the reader may miss a more complex relationship between her male romantic partners and her illness.

Instead of detailing her relationships with men and women, Khakpour chooses to highlight her long romantic partnerships with men as a way to both mark time, place, and the phases of her illness. Each of the male lovers swoop in ambitiously wanting to “cure” her in a way that mirrors the medical model of disability where there is a corrective end to illness and one is completely “better.” Khakpour also points out that “our relationships had everything to do with their relation to their illness” (237). She describes the pattern of her relationships: “so many [partners] presented themselves to me as I got well, and they all faded as I got worse” (239). Her relationships are much more about her partner’s attraction to and repulsion by her illness than about either of their respective genders. By ignoring this, or trying to measure it against other LGBTQ narratives, we lose the more complex picture of sexuality, illness, and diasporic subjecthood.

 

Dissident Friendships?3

Far from “whining” as the scholar at the conference suggested, Khakpour’s memoir fills in theoretical gaps in disability models, and grapples seriously with issues of dislocation, class, gender, and racism in relation to her illness. But this memoir is not just negative and tragic. Khakpour highlights the relationships that stabilized her, even as she feels out of place in her body. Her friendships prove to be the most healing connections. Those figures that help don’t presume they will be the savior that cures her, unlike her romantic partners. Instead, they offer temporary, partial relief that sustains Khakpour.

For example, Dorrie’s friendship is the first stabilizing, consistent relationship. Dorrie does not present herself as a healer who has come to save Khakpour, but rather as someone who “had been through some hell and was just barely climbing out of it” (206) as well, and offered to simply be with the narrator as a “team” (208). In giving rides, going on “writing dates,” and eventually setting up a GoFundMe for medical bills, Dorrie exemplifies a relationship based on mutual care. Although Khakpour doesn’t use the words “grounded” or “home,” she says: “Dorrie got me out of feeling like an alien” (209). It’s this kind of steady friendship that other people offer, like Khakpour’s former graduate assistant, Mason, or her editor who accompanies her to the hospital after a car accident, that make the biggest difference in helping Khakpour feel better. Her narrative shows that dealing with chronic Lyme disease is never a completed project, but that support can come outside the medical profession in the form of non-romantic intimacies. Khakpour’s illegibility as a properly “sick” subject within the medical industrial complex, due to combined influences of racism and sexism, as well as a lesser-known disease, make these alternative systems of support vital.

 
 
  • 1. For more information look at https://porochistakhakpour.com/
  • 2. The Centers for Disease Control and Prevention (CDC) offers an outline of information on the disproportionate maternal mortality rate for Black and Indigenous women in the U.S. (“Racial and Ethnic Disparities Continue in Pregnancy-Related Deaths | CDC Online Newsroom | CDC” 2019)
  • 3. We borrowed the title from an anthology on Dissident Friendships: Feminism, Imperialism, and Transnational Solidarity (Dissident Feminisms) (Chowdhury and Philipose 2016), to highlight the writers’ references to the significance of women’s friendship across national and social class borders in transnational feminism.
یادداشت‌ها: 
References: 

Chowdhury, Elora, and Liz Philipose, eds. 2016. Dissident Friendships: Feminism, Imperialism, and Transnational Solidarity. University of Illinois Press.

Erevelles, N. 2011. Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. 1st ed. 2011 edition. New York: Palgrave Macmillan.

Halperin, John J. 2015. “Chronic Lyme Disease: Misconceptions and Challenges for Patient Management.” Infection and Drug Resistance 8 (May): 119–28. https://doi.org/10.2147/IDR.S66739.

Kafer, Alison. 2013. Feminist, Queer, Crip. 1 edition. Bloomington, Indiana: Indiana University Press.

Khakpour, Porochista. 2008. Sons and Other Flammable Objects. Reprint edition. Grove Press.

———. 2014. The Last Illusion. Export/Airside edition. Bloomsbury Publishing.

———. 2018. Sick: A Memoir. New York: Harper Perennial.

———. 2020. Brown Album: Essays on Exile and Identity. Vintage.

Lorde, Audre. 2006. The Cancer Journals: Special Edition. Special edition. San Francisco: Aunt Lute Books.

Maghbouleh, Neda. 2017. The Limits of Whiteness: Iranian Americans and the Everyday Politics of Race. 1st ed. Stanford, California: Stanford University Press.

Mossey, Jana M. 2011. “Defining Racial and Ethnic Disparities in Pain Management.” Clinical Orthopaedics and Related Research 469 (7): 1859–70. https://doi.org/10.1007/s11999-011-1770-9.

Najmabadi, Afsaneh. 2013. Professing Selves: Transsexuality and Same-Sex Desire in Contemporary Iran. Duke University Press Books.

Puar, Jasbir K. 2017. The Right to Maim: Debility, Capacity, Disability. Durham: Duke University Press Books.

Samulowitz, Anke, Ida Gremyr, Erik Eriksson, and Gunnel Hensing. 2018. “‘Brave Men’ and ‘Emotional Women’: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain.” Pain Research & Management 2018 (February).

Shakhsari, Sima. 2011. “Weblogistan Goes to War: Representational Practices, Gendered Soldiers and Neoliberal Entrepreneurship in Diaspora.” Feminist Review, no. 99: 6–24.

———. 2012. “From Homoerotics of Exile to Homopolitics of Diaspora: Cyberspace, the War on Terror, and the Hypervisible Iranian Queer.” Journal of Middle East Women’s Studies 8 (3): 14–40.

———. 2020. Politics of Rightful Killing: Civil Society, Gender, and Sexuality in Weblogistan. Durham: Duke University Press Books.

Sontag, Susan. 1988. Illness as Metaphor. Farrar, Straus, Giroux.