Abstract

In this project, I provide a "medicinal history" (Morales 1998) of my experiences of disability, Madness, and medical abuse, offering a creative format for archiving the past in order to craft healing futures. Weaving stories together with a rag doll index of myself, I craft my own "theory in the flesh," (Moraga and Anzaldúa 2015, 19) a counternarrative of resistance to interlocking systems of oppression grounded in my own lived experience as a queer, non-binary, mixed-race, desi, disabled, Mad, femme of color. By tracing white supremacist, colonial, heteropatriarchal, ableist, and saneist violence onto my body, I reimagine the ways that embodied traumas can morph to become possibilities for generative healing praxes. "Autoimmune" is a story of disabled and mad becoming, of the unspooling of the self and ableist/sanist definitions of (dis)ability and madness, and of the "re-storying" (Driskill 2016, 3) of disability and madness through a praxis of kinship.


Autoimmune:

  1. From autoimmune disease: "[A]n illness that causes the immune system to produce antibodies that attack normal body tissues. It sees a part of your body or a process as a disease and tries to combat it." 1 Includes medical diagnoses such as unspecified connective tissue disorder and systemic lupus erythematosus.
  2. An epistemic challenge: Autoimmunity "seems to literalise the 'intriguing paradoxicality proper to an autonomous identity' in ways that make it both visible and palpable. As such it materialises a critical tension that Western political philosophy and Western bioscience both collude to make disappear. Our notions of selfhood and identity assume the singularity of 'a body' that we possess as the ground of our being. Yet autoimmune illnesses reveal that this singularity is fairly problematic if not entirely illusory." 2
  3. A "medicinal history" 3: Autoimmune is a story of disabled and mad becoming, of the unspooling of the self and ableist/sanist definitions of (dis)ability and madness, and of the "re-storying" 4 of disability and madness through a praxis of kinship.
Rag doll sitting on a rocking chair. More description below.


A 22-inch rag doll sits on a cherry wood rocking chair. She has brown yarn hair and her face wears a smile. There is a winding tattoo of a purple dragon on her right leg. She is wearing dark purple glasses and a lavender hospital gown with white polka dots. A multi-colored cane is attached to her right wrist and her left bears a hospital wristband. On either forearm, she sports Star Wars-themed Band-Aids. A white hospital glove is fastened to her arm by a large metallic pearled pin. These pins appear in six locations on the doll's body: her inner-elbows, the backs of her knees, and the center of her lower back. Multicolored papers with words written on them are affixed to the doll's body by small matte pins. The papers are color-coded: yellow as physical symptoms, dark pink catalogs physical diagnoses, green lists mental and emotional symptoms and diagnoses, turquoise corresponds to medications, dark blue records medical procedures, light pink describes shit doctors say, orange archives shit people say, and light blue documents her thoughts.

I. Becoming Disabled and Mad

The plain rag doll I ordered online is waiting for me on my desk when I arrive home. I feel compelled to clothe her immediately and reach for my fabric bin, pulling out purple cotton with white polka dots. Disregarding the fact that I was taught to always measure twice, I fold the fabric square into quarters and snip a 'V.' Upon confirming that the resulting hole is large enough to fit over her head, I cut the excess fabric off the poncho-like garment and turn it inside out. Next, I wrap a scrap of fabric around her arm, leaving some give, and cut out two pieces that will become sleeves. Rooting around in my sewing box, I dig out a spool of lilac thread. After threading the needle, I sew in the sleeves and finish the edges of the garment. Breaking another cardinal rule of sewing, I decide against hemming the bottom. Instead, I turn it right side out and maneuver it over her head and arms. She is me. We are wearing a hospital gown.

Deciding to work on her hair next, I cut dozens of lengths of brown yarn, stacking them next to me on the couch. Threading my needle with black thread, I backstitch along the seam at the top of her head, attaching two strands of brown yarn at a time. After sewing on the top layer, I rethread my needle to begin a removable bottom layer of hair. Sewing the first Velcro strip to the back of her scalp, I remember sobbing with dismay when clumps of hair came away as I brushed my hair each morning – the onset of chronic illness. Attaching the second Velcro strip, I recall years later, the tiny orange pills that I choked down every Friday afternoon so that I would recover in time for class on Monday. I stick brown yarn onto the removable side of the Velcro strips. When I finally was able to rise from bed that first Monday morning, my pillow was covered with hair. I study her blank face, pondering what expression she should have. I remember the joy of buzzing my rapidly thinning hair before it could all fall out. We smile.

Aurora Levins Morales writes, "History is the story we tell ourselves about how the past explains our present, and how the ways in which we tell it are shaped by contemporary needs." 5 Describing her work as "medicinal history," Morales suggests that we can reimagine past traumas in order to build healing futures. Drawing upon the healing justice movement, which emerges from queer and trans communities of color, I understand healing as integral to our radical social justice movements and as distinct from ableist/sanist ideologies of cure. 6 In this project, I provide a "medicinal history" of my experiences of disability, madness, and medical abuse, offering a creative format for archiving the past in order to craft healing futures for ourselves and our communities. Weaving stories together with a rag doll index of myself, 7 I craft my own "theory in the flesh," 8 a counternarrative of resistance to interlocking systems of oppression grounded in my own lived experience. By tracing white supremacist, colonial, heteropatriarchal, ableist, and sanist violence onto my body, I reimagine the ways that embodied traumas can morph to become possibilities for generative healing praxes.

Now, it's time to add the trimmings of chronic illness. I select a navy-blue roll of paper tape from my stash. As I twirl the tape around the wooden dowel that will become her cane, I think about the first time I used one to help me walk. After agonizing about it for weeks, the day that I had long feared arrived: I simply could not make it to class without the stick. Spinning a spool of purple tape around the dowel to close the gaps between rows of navy blue, I create a candy-stripe pattern. I recall being stopped three or four times by folks who did not even know my name. They demanded to know, "What happened?" I didn't know what to say. Tearing patches of tape in a variety of colors, I layer them over the purple and blue rows, disrupting the pattern. As my cheeks grew hot with embarrassment, I wished with each excruciating step that I would sink into the floor and disappear. I berated myself cruelly for not being able to bear and conceal the pain and fatigue better, for needing the stick to walk in the first place. Taking up another roll of dark blue tape, I close the jagged edges of the multicolored patches. Twisting two pipe cleaners into a cord, I tie one end around the cane and attach it to her wrist. In retrospect, the day we started to walk with a cane was the day that we began to understand ourselves as disabled. It was the day that we realized that our experiences of chronic illness and disability were political.

In Living a Feminist Life, Sara Ahmed proposes that we trace our feminist origin stories. She writes, "A feminist instruction: if we start with our experiences of becoming feminists not only might we have another way of generating feminist ideas, but we might generate new ideas about feminism." 9 Ahmed describes how feminist origin stories often begin with a feeling of being out of place that solidifies as we experience increased surveillance, discipline, and violence due to our failure to be directed along the 'normal' paths. One of ways that we discover that we are out of place is through questions that function as assertions. Ahmed explains, "When you are stopped, a right to stop you is asserted. In being assertive, such speech acts render you questionable, as someone who can be questioned, as someone who should be willing to receive a question. A body can become a question mark." 10

"What happened?"

Disability Justice activist Mia Mingus notes that disabled people are frequently expected to share personal information, physical contact, and emotional intimacy as a prerequisite to accessibility. 11 Within ideologies of cure, the seemingly innocuous "What happened?" cannot easily be separated from the more explicit question Eli Clare reports being asked: "What's your defect?" 12 Nor can these question-assertions be disentangled from other injunctions to know: "Where are you originally from?" "Are you a member of the LGBT community?" "Why don't you wear a hijab?" "How come you speak English so well?" "Why don't you speak Urdu?" These question-assertions, all from health care providers, underscore poet Amy Berkowitz's point that "doctors are cops." 13

"What happened?"

II. Unspooling the Ableist/Sanist Self

A wave of nausea rolls over me as I realize that I cannot put off this next part any longer. Taking a deep breath, I reach for my pincushion of metallic imitation pearl pins. Selecting six in different colors – gold, green, pink, purple, blue, and orange – I place them on the desk. Unhappily, I pick up the blue pin and plunge it into her right forearm. The next pin parts the flesh of her left forearm as easily as it did mine, and I wince with the remembered pain of the first pulsing electric shocks. With grim efficiency, I stick the next two pins into the back of her knees. I try to breathe, hands shaking, and I remember being held down as the force of the electric shocks made me jerk horribly. As I sink the next pin into her lower back through the hospital gown, I feel like I am going to be sick. I close my eyes. When the last pin hammers into our back, we hear the sneering voice of the perpetrator say, "Why is a big girl like you crying?"

This is a pattern. A pattern, to use Eunjung Kim's term, of "curative violence." 14 Within the disciplinary apparatus of the Medical-Industrial Complex, my mere presence as a queer, non-binary, mixed-race, desi, disabled, mad femme of color becomes grounds for violence. As Cherokee Two-Spirit scholar Qwo-Li Driskill reminds us, "Ableism is colonial. It is employed to maintain an ideal body of a white supremacist imagination. The ideal body is heterosexual, male, white, Christian, non-disabled, and well-muscled. It is an ideal with a long and troubling history inseparable from racism, genocide, misogyny, and eugenics." 15

Opening my eyes, I trace the lines of the dragon winding around my right leg with my fingertips. It began as a doodle in class, and grew into an emblem for my disabled/mad becoming, autoimmunity and suicidality, survival and resistance. I remember my family's vocal objections to my tattoo. They saw it as a visual marker of my deviance from gendered upper-class Pakistani norms and notions of respectability that could pinpoint me for violence. I had to bite my tongue to keep from replying, "What of it?" 16 For me, and others, the violence is always still happening.

My family also objected to the pain of the tattoo: "Don't you have enough to be getting on with already?" Probably, I conceded, but there was also something delicious–autoimmune, even–about choosing this pain. Leah Lakshmi Piepzna-Samarasinha writes:

"I am interested in all of us who dance with dying talking about all the different and real things that suicide can mean to us. All the things that allow us to stay here. And more than that, I am interested in creating models of happy mostly queer and trans adulthood where we can be leaders and still be vulnerable, where we can be open that it's not happily ever after. Life models that encompass falling apart and reforming not as a failure but as a life pathway. Ones punctuated with whirlwinds and whirlpools, that Coatlicue/Kali/Oya energy that dismembers. And gifts." 17

Popping the lid off of the purple marker, I begin drawing spirally lines that bleed into the fabric of her skin. Then, as now, the curling lines of the tattoo represent our femme politics of survival. As we watch the purple ink sink into our skin, we begin the work of healing. A healing that remembers the beauty and pain of survival and resistance.

III. "Re-Storying" Madness and Disability through Kinship 18

I take out a pair of scissors and begin cutting up notecards into strips. I start writing words onto the small rectangular pieces of cardstock. Diagnoses. Medications. Symptoms. Procedures. Treatments. Words that doctors have said to us. Words that acquaintances and loved ones have said to us. Words that we have thought to ourselves. The words tumble forth. Heavy. Jagged. Raw.

Cherokee scholar Thomas King writes, "The truth about stories is that's all we are." 19 I upend a clear plastic case of multicolored matte pins. When I became chronically ill, I found myself immersed in an ableist and sanist story about what it meant to be disabled and mad. I begin pinning words all over our body. "Non-compliant." "Psychosomatic." "Attention-seeking." "Hormonal." "Hysterical." "Drug-seeking." "Liar." "Sensitive." "Antisocial." "Get over it." "You have the unreasonable expectation that you shouldn't be in pain." In Feminist, Queer, Crip, Alison Kafer describes this story as "curative time," which frames cure as the only conceivable or desirable future for disabled and mad folks, thereby denying us a present and future. 20 "You will always suffer." Overwhelmed by this story, we started to tell it ourselves because it was the only story we knew. "Broken." "Ugly." "Crazy." "Burden." "Worthless." "Freak." "Useless." "Weak."

Eventually, we came to see that this was only one possible story we could be telling. King explains, "Want a different ethic? Tell a different story." 21 I help her sit in the cherry wood rocking chair. We start rocking in unison, telling a different story.

Works Cited

  • Ahmed, Sara. Living a Feminist Life. Durham: Duke University Press, 2017. https://doi.org/10.1215/9780822373377
  • Berkowitz, Amy. Tender Points. Oakland: Timeless, Infinite Light, 2015.
  • Clare, Eli. Brilliant Imperfection: Grappling with Cure. Durham: Duke University Press, 2017. https://doi.org/10.1215/9780822373520
  • Cohen, Ed. "My self as an other: on autoimmunity and 'other' paradoxes," Journal of Medical Ethics; Medical Humanities 30, no. 7 (2004): 7-11. https://doi.org/10.1136/jmh.2004.000162
  • Driskill, Qwo-Li. Asegi Stories: Cherokee Queer and Two-Spirit Memory. Tucson: University of Arizona Press, 2016.
  • Driskill, Qwo-Li. "(Auto)biography of Mad." In Sovereign Erotics: A Collection of Two-Spirit Literature, ed. Qwo-Li Driskill, Daniel Heath Justice, Deborah Miranda, and Lisa Tatonetti, 107-109. Tucson: University of Arizona Press, 2011.
  • Quarreling with God: Mystic Rebel Poems of the Dervishes of Turkey. Compiled and Translated by Jennifer Ferraro with Latif Bolat. Ashland: White Cloud Press, 2010.
  • Kafer, Alison. Feminist, Queer, Crip. Bloomington: Indiana University Press, 2013.
  • Kim, Eunjung. Curative Violence: Rehabilitating Disability, Gender and Sexuality in Modern Korea. Durham: Duke University Press, 2017. http://doi.org/10.1215/9780822373513
  • King, Thomas. The Truth About Stories: A Native Narrative. Minneapolis: University of Minnesota Press, 2003.
  • Mingus, Mia. "Forced Intimacy: An Ableist Norm." Leaving Evidence (blog), August 6, 2017 (4:31 p.m.), https://leavingevidence.wordpress.com/2017/08/06/forced-intimacy-an-ableist-norm/
  • Moraga, Cherríe and Gloria Anzaldúa. "Entering the Lives of Others: Theory in the Flesh." In This Bridge Called My Back: Writings by Radical Women of Color, 4th Edition, ed. Gloria Anzaldúa and Cherríe Moraga. New York: SUNY, 2015.
  • Morales, Aurora Levins. Medicine Stories: History, Culture and the Politics of Integrity. Cambridge: South End Press, 1998.
  • Morales, Aurora Levins, Qwo-Li Driskill, and Leah Lakshmi Piepzna-Samarasinha. "Sweet Dark Places: Letters to Gloria Anzaldúa on Disability, Creativity, and the Coatlicue State." In El Mundo Zurdo 2. San Francisco: Aunt Lute Books, 2012.
  • Piepzna-Samarasinha, Leah Lakshmi. "Sick and Crazy Healer: A Not-So-Brief Personal History of the Healing Justice Movement." Care Work: Dreaming Disability Justice, 97-113. Vancouver: Arsenal Pulp Press, 2018.
  • Piepzna-Samarasinha, Leah Lakshmi. "Suicidal Ideation 2.0: Queer Community Leadership, and Staying Alive Anyway." Care Work: Dreaming Disability Justice, 179-264. Vancouver: Arsenal Pulp Press, 2018.

Endnotes

  1. "Autoimmune Disease Definition." American Academy of Allergy Asthma & Immunology. Accessed October 14, 2019. https://www.aaaai.org/conditions-and-treatments/conditions-dictionary/autoimmune-disease
    Return to Text
  2. Ed Cohen, "My self as an other: on autoimmunity and 'other' paradoxes," Journal of Medical Ethics; Medical Humanities 30, no. 7 (2004): 10.
    Return to Text
  3. Aurora Levins Morales, Medicine Stories: History, Culture and the Politics of Integrity (Cambridge: South End Press, 1998).
    Return to Text
  4. Qwo-Li Driskill, Asegi Stories: Cherokee Queer and Two-Spirit Memory (Tucson: University of Arizona Press, 2016), 3.
    Return to Text
  5. Aurora Levins Morales, Medicine Stories: History, Culture and the Politics of Integrity (Cambridge: South End Press, 1998), 24.
    Return to Text
  6. Leah Lakshmi Piepzna-Samarasinha, "Sick and Crazy Healer: A Not-So-Brief Personal History of the Healing Justice Movement," Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018), 97-113.
    Return to Text
  7. The idea to frame myself and the rag doll as indices is shaped by the following poem: Qwo-Li Driskill, "(Auto)biography of Mad," Sovereign Erotics: A Collection of Two-Spirit Literature, ed. Qwo-Li Driskill, Daniel Heath Justice, Deborah Miranda, and Lisa Tatonetti (Tucson: University of Arizona Press, 2011), 107-109.
    Return to Text
  8. Cherríe Moraga and Gloria Anzaldúa, This Bridge Called My Back: Writings by Radical Women of Color, 4th Edition, ed. Cherríe Moraga and Gloria Anzaldúa (New York: SUNY Press, 2015), 19.
    Return to Text
  9. Sara Ahmed, Living a Feminist Life (Durham, NC: Duke University Press, 2017), 12.
    Return to Text
  10. Ibid., 117.
    Return to Text
  11. Mia Mingus, "Forced Intimacy: An Ableist Norm," Leaving Evidence (blog), August 6, 2017 (4:31 p.m).
    Return to Text
  12. Eli Clare, Brilliant Imperfection: Grappling with Cure (Durham: Duke University Press, 2017), 6.
    Return to Text
  13. Amy Berkowitz, Tender Points (Oakland: Timeless, Infinite Light, 2015), 52.
    Return to Text
  14. Eunjung Kim, Curative Violence: Rehabilitating Disability, Gender and Sexuality in Modern Korea (Durham: Duke University Press, 2017), 14.
    Return to Text
  15. Aurora Levins Morales, Qwo-Li Driskill, and Leah Lakshmi Piepzna-Samarasinha, "Sweet Dark Places: Letters to Gloria Anzaldúa on Disability, Creativity, and the Coatlicue State," El Mundo Zurdo 2 (San Francisco: Aunt Lute Books, 2012), 84.
    Return to Text
  16. This is an eponymous reference to a poem by a 14th-15th century Sufi poet, Seyyid Imadeddin Nesimi, which appears in Quarreling with God: Mystic Rebel Poems of the Dervishes of Turkey, ed. and trans. Jennifer Ferraro with Latif Bolat.
    Return to Text
  17. Leah Lakshmi Piepzna-Samarasinha, "Suicidal Ideation 2.0: Queer Community Leadership, and Staying Alive Anyway," Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018), 179.
    Return to Text
  18. Qwo-Li Driskill, Asegi Stories (Tucson: University of Arizona Press, 2016), 3.
    Return to Text
  19. Thomas King, The Truth About Stories: A Native Narrative (Minneapolis: University of Minnesota Press, 2003), 2.
    Return to Text
  20. Alison Kafer, Feminist, Queer, Crip (Bloomington: Indiana University Press, 2013), 27-8.
    Return to Text
  21. Thomas King, The Truth About Stories, 164.
    Return to Text
Return to Top of Page


Copyright (c) 2020 Sasha A. Khan

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Volume 1 through Volume 20, no. 3 of Disability Studies Quarterly is archived on the Knowledge Bank site; Volume 20, no. 4 through the present can be found on this site under Archives.

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated. 

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

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact libkbhelp@lists.osu.edu.

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