{"id":472535,"date":"2020-07-19T21:43:49","date_gmt":"2020-07-20T04:43:49","guid":{"rendered":"https:\/\/disabilityvisibilityproject.com\/?p=472535"},"modified":"2026-02-12T17:19:23","modified_gmt":"2026-02-13T01:19:23","slug":"we-must-reimagine-ourselves","status":"publish","type":"post","link":"https:\/\/disabilityvisibilityproject.com\/2020\/07\/19\/we-must-reimagine-ourselves\/","title":{"rendered":"We Must Reimagine Ourselves"},"content":{"rendered":"

We Must Reimagine Ourselves<\/b><\/h4>\n

Allison Masangkay<\/b><\/p>\n

Content notes: doctors and medical procedures, chronic pain, death including suicide, grief, evil beings\u00a0<\/strong><\/p>\n

Plain language summary<\/strong><\/a><\/p>\nhttps:\/\/media.blubrry.com\/disability_visibility\/content.blubrry.com\/disability_visibility\/Allison_Masangkay-We_Must_Reimagine_Ourselves.mp3<\/a><\/audio>\n

 <\/p>\n

I listened to Frank Ocean as it happened.<\/p>\n

I lay as still as possible encased in an MRI machine wearing earbuds and seeking answers about some bones near my butt. Nearly two years of archiving my chronic pain and fatigue for a handful of doctors across my university\u2019s extensive medical system had led to this prolonged, forced stillness. I\u2019d simultaneously achieved a tired Millennial\u2019s dream and nightmare.<\/p>\n

Following college graduation in December 2018, I wasn\u2019t who my two university degrees told me I should be. My part-time data entry job offered no health insurance and a salary low enough to make my parents frown when I told them the number. It\u2019s not that I wasn\u2019t \u2018qualified\u2019 or \u2018motivated\u2019 enough for a full-time job. Chronic pain and fatigue\u2014tentatively diagnosed as fibromyalgia and maybe also carpal tunnel\u2014had made \u201cregular hours\u201d too much since I started routinely seeing doctors for my symptoms in 2016. I knew I was fucking disabled and loved myself enough to not push my body beyond what it was.<\/p>\n

The rheumatologist I\u2019d been seeing for the past 6 months seemed to believe in me. Believed that my stories of pain, sleeplessness, and depression were more than me grieving my best friend\u2019s fatal car crash from a few months ago. Believed it may be the early stages of lupus, rheumatoid arthritis, or ankylosing spondylitis. Essentially, this MRI she\u2019d ordered of my sacrum with the same soundtrack as Urban Outfitters was my gateway to a disability status worthy of workplace accommodations and accessing life beyond survival.<\/p>\n

Between 2016-2018, half a dozen doctors examined my hands and felt certain in their diagnosis of carpal tunnel. The electric current running through a needle into different nerves in my arm from the electromyography (EMG) test only confirmed that I have, in the words of the physician, \u201ca pretty fucking high pain tolerance\u201d and should ask my doctors what to do next. By December 2018, I\u2019ve collected 2 new wrist braces, 25 pages of medical bills, and a 20-second phone message from my rheumatologist. My wrist braces smell terrible from me wearing them all the time, the state health insurance says they can\u2019t pay for my EMG or MRI tests anymore, and my rheumatologist\u2019s voicemail says that all of my diagnostic tests have come back \u201cnormal.\u201d<\/p>\n

***<\/p>\n

It\u2019s January 2019, about 4 months since starting my part-time data entry job. I\u2019m surrounded by the resounding silence of a full Seattle bus during my midday commute. Everyone either quietly sighs to themselves or wears headphones while taking calculated gazes at their phone, out the window, and, secretly, toward other passengers. I typically take on the latter role. Today, my headphones play an audiobook,\u00a0Freshwater<\/i>,\u00a0by Akwaeke Emezi. I press play then massage my left knuckles with my right hand in smooth, circular motions. Emezi begins by referring to the novel\u2019s protagonist as \u201cshe\u201d from the perspective of narrators who discuss moving in and out of \u201cour body\u201d (2018, p. 5). My massage motions dig a little deeper into my fingers. The narrator speaks of having a previous life and sliding into \u201cher\u201d body. The tip of my left index finger blushes and bulges from the pressure I apply. Chapters two and three reveal that the narrators are spirits that occupy space in the protagonist\u2019s body. They celebrate her nightmares, keep bridges to the underworld within her body, and explain that her younger sister\u2019s violent accident\u2014a car collision\u2014mark an interaction with their \u201cbrothersisters.\u201d<\/p>\n

\u201cFuck!,\u201d I let out after my knuckle audibly cracks. Even while my audiobook continues playing through my headphones, I\u2019m aware that I\u2019ve broken the Seattle bus\u2019s silence. The whole situation makes me anxious. I snap back into a less scary reality and observe crows perched on power lines.<\/p>\n

I\u2019ve always loved crows. Known for their intelligence, they appear as tricksters and shapeshifters in folklore.\u00a0<\/span><\/p>\n

When crows die, a murder\u00a0of them arrive at the scene and examine the potential causes of death. They caw together, expressing grief or maybe deep anger; either way, humans can\u2019t decipher the sounds of crows\u2019 emotional complexities. Finally, they chase predators together in a behavior called \u201cmobbing\u201d (\u201cFacts About Crows,\u201d 2017). I witnessed this occasion on March 29, 2019. \u201cA relatively dry Friday in Duwamish territory,\u201d I\u2019d written in my journal. A white sedan hit a crow positioned a little too far from the road markings and immediately fell to their back. I felt my gut split in half before dropping as I let out audible cries, joining the crows\u2019 choruses. I watched the murder circle and circle.<\/p>\n

\u201cM* took their life today, and I don\u2019t know what to do,\u201d was my final journal entry that day. Although we\u2019d broken up by then, this was my second romantic partner\u2014third if you counted my childhood friend who, after 1 month, agreed that we could maintain a very intimate, long-distance friendship when he decided to stay in Chicago\u2014who\u2019d died in the past year. I was twenty-three years old, and they all weren\u2019t too much older.<\/p>\n

My legs slightly shake as I squeeze my rolling suitcase in between them. All of the pressure of my first post-college graduation solo trip bubbles inside me. I\u2019m seated on the Blue Line (part of Chicago\u2019s transit system), checking the map above the door for which stop connects to the Red Line. My eyes meet the incandescent lights, and golden yellow liquid begins oozing out of them. I feel someone suddenly push my heart to the back of my chest. The points of impact feel warm like honey glaze baking onto ham. \u201cWelcome, hun,\u201d I hear from a voice floating by my right ear.<\/p>\n

A* mixes chamomile tea with honey, orange, cinnamon and other ingredients \u201clike we\u2019re invoking Oshun,\u201d she says in the September warmth of her house\u2019s fireplace. The series finale of Superior Donuts from a few months ago plays in the background as she shuffles across her kitchen, hands now decorating homemade donuts with chocolate ganache and pomegranate seeds. The donuts taste amazing and look like a bleeding heart when you bite into the pomegranate.<\/p>\n

A week after A* took her life, I bought two donuts and ate them by myself. It was the best way I could honor my lost love, as our relationship largely remained a secret. The world doesn\u2019t approve of two queer brown femmes publicly in love. Licking the last of the chocolate glaze off my fingers, she didn\u2019t feel too far away. I drove to the closest park to greet the trees before it was supposed to rain. No more than 10 seconds before the first raindrops fell, a murder of crows circled around me as I cried and cried and cried.<\/p>\n

***<\/p>\n

\u201cAm I the only one who jumped up in the air as a kid and then, like, never came down? Like, I was floating and just had my legs swinging.\u201d I wait for a response from my college classmates. I have a Budweiser can in my right hand, hovering over my two previous ones. We\u2019ve agreed to wash out my grief with alcohol on the last night of our final spring quarter together.<\/p>\n

My friends pass around a blunt and ask me what age I started smoking. And, if the water where I grew up in northern New Jersey really is different.<\/p>\n

I look out the window and see nothing, because the darkness of the sky consumes it all. I envy the sky for being so many things and taking up so much space without having to explain itself.<\/p>\n

***<\/p>\n

It took me 11 months to finish Akwaeke Emezi\u2019s novel\u00a0Freshwater<\/i>. I prolonged the experience, intentionally but also cautiously. I was nearly afraid of the self-reflective truths I felt with each word. The truths I felt in Emezi\u2019s refusal to reframe their experiences in terms of \u201cmental health\u201d or other medical diagnoses and, instead, root the protagonist of their semi-autobiographical novel in their own speculations, studies, and experiences of Igbo ontology. (There\u2019s that word again.) Really, Emezi\u2019s words\u2014that stomped on the necks of white-dominated American literary canon and the undermining expectations it sets for non-white writers, as part of a sublime speculative fiction story\u2014saved my life. Almost a year after my MRI, I began understanding what \u201contology\u201d is: what it means \u201cto be,\u201d to exist. For myself, what it means to be Filipinx, disabled, queer, non-binary, and maybe even an unrealized aswang.<\/p>\n

\u201cAswang\u201d is an umbrella term for evil, shapeshifting beings in Philippine folklore. I grew up hearing stories of manananggal, a viscera2\u00a0sucker aswang. The manananggal is said to appear as a conventionally attractive, light-skinned woman with long hair during the day and then detach her legs and grow wings to fly at night. I comb through the ends of my black hair that fall near my hips and feel that the manananggal may be in the mirror. Moments in my youth where I felt like I was uncontrollably floating are now understood as moments I was decidedly, magically flying. Each night while stretching out chronic pain soreness in my legs, I long to let go of them, even if just for the night. I believe that these feelings of chronic pain and longing will feel inescapable for the rest of my life; though, my knowledge of aswang now allows me to interpret these feelings as desperately prophetic for a future that cannot be realized in our current realities.<\/p>\n

Now, I lay in bed writing these words with my laptop on my belly, a.k.a. my personal desk. I\u2019m daydreaming of futures where our bodies, as disabled people and beings of color, are valued beyond our abilities to maintain a job and uplift racialized capitalism. I accept all of the progressive policy reforms our communities can get, but personally focus on the work of imagining and manifesting a better future, beyond the fucked up\u00a0medical-industrial complex<\/span><\/a>, through my art. As I see it, the \u201creal work\u201d is not in my ability to work more, experience less bodily pain, or even create; rather, it\u2019s in my belief of a version of myself that freely exists outside of white supremacist systems and narratives.<\/p>\n

I want to reimagine a Filipinx ontology. Some contemporary Filipino\/a\/x scholars state that periods of (ongoing) U.S. imperialism and racialized capitalism define our people\u2019s modern social existence and understanding. The United States\u2019 white supremacist control of the Philippines and its people across diaspora relies on us not knowing who we are and denying the impacts and existence of US genocide (Rodriguez, 2016). I agree with them. We lack substantial texts of Philippine pre-colonial history due to actions taken by both Spanish and U.S. colonial states over centuries. However, I also align myself with an\u00a0abundance mindset<\/span><\/a>; I celebrate Philippine folklore and any bits of Indigenous knowledge I can access. I witness the embodied knowledge of our people whenever we gather and fill our space with puns, savory foods, and confusion of whether we\u2019re Asian or not.<\/p>\n

My strategy of shifting ontology outside of white supremacy as a Filipinx begins by taking my unique experiences seriously. Instead of waiting for U.S. policy to meet my needs, I self-advocate for an existence outside of Western ontology. Each of my breaths, body aches, and books mark developments in my curiosity and self-confidence. Each day I dare continue to live, the futures of disabled people and beings of color outside of white supremacist systems and narratives is made more possible.<\/p>\n

Endnotes<\/b><\/p>\n

    \n
  1. \u201cMurder\u201d is the term for a group of crows.<\/li>\n<\/ol>\n

    * \u00a0 The first letter of people\u2019s names used for anonymity<\/p>\n

      \n
    1. \u201cViscera\u201d refers to internal organs, especially those around the human abdomen.<\/li>\n<\/ol>\n

      References<\/b><\/p>\n

      Bradford, A. (2017, May 02). Facts About Crows. Retrieved April 05, 2020, from\u00a0https:\/\/www.livescience.com\/52716-crows-ravens.html<\/span><\/a><\/p>\n

      Emezi, A. (2018).\u00a0Freshwater.\u00a0<\/i>Grove Atlantic.<\/p>\n

      Ramos, M. D. (1994).\u00a0The Aswang complex in Philippine folklore<\/i>. Quezon City, Quezon: Phoenix Publishing House.<\/p>\n

      Rodriguez, D. A. (2016). \u201cNot Classifiable as Orientals or Caucasians or Negroes.\u201d In M. F. Manalansan & A. F. Espiritu (Eds.),\u00a0Filipino studies: Palimpsests of nation and diaspora<\/i>\u00a0(pp. 151-175). New York University Press.<\/p>\n

      ABOUT<\/strong><\/h4>\n
      \"Allison
      Allison Masangkay (aka DJ Phenohype), a Filipinx femme, sits in a chair wearing an outfit of yellows, greens, lavender, and light wash denim blue with a warm orange backdrop, surrounded by several green plants. They look directly at the camera with a serious expression and their hands resting on their knees. Photo by Bianca Recuenco.<\/figcaption><\/figure>\n

      Allison Masangkay<\/strong> (<\/span>DJ Phenohype<\/span><\/a>) is a sick and disabled queer Filipinx femme artist, scholar, and social justice advocate. Her work is influenced by her childhood in northern New Jersey, survival in Sequim, Washington, ancestral memory, and diaspora feels. Their first self-published, multimedia book <\/span>Do Androids Dream In Color? <\/span><\/i>will be released in September 2020.<\/span><\/p>\n

      Allison is the Director and Co-Founder of <\/span>Kapatid Kollective<\/span><\/a> (KK), which organizes arts <\/span>& culture events during <\/span>Filipinx American History Month<\/span><\/a>. KK facilitates space to better imagine and collectively develop the many ways in which Filipinxs can heal ourselves, undo interconnected systemic oppressions, and thrive. \/\/ <\/span>allisonmasangkay.com<\/span><\/a><\/p>\n

       <\/p>\n

      Read all 13 essays from the #ADA3oInColor series<\/a>\u00a0<\/strong><\/p>\n

       <\/p>\n

      Support Disability Media and Culture<\/b><\/p>\n

      DONATE<\/b><\/a>\u00a0to the Disability Visibility Project\u00ae<\/b><\/p>\n","protected":false},"excerpt":{"rendered":"

      We Must Reimagine Ourselves Allison Masangkay Content notes: doctors and medical procedures, chronic pain, death including suicide, grief, evil beings\u00a0 Plain language summary https:\/\/media.blubrry.com\/disability_visibility\/content.blubrry.com\/disability_visibility\/Allison_Masangkay-We_Must_Reimagine_Ourselves.mp3<\/a>   I listened to Frank Ocean … Continue Reading We Must Reimagine Ourselves<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":472661,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"advanced_seo_description":"","jetpack_seo_html_title":"","jetpack_seo_noindex":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"_wpas_customize_per_network":false,"jetpack_post_was_ever_published":false},"categories":[6701202],"tags":[587152916,587152470,587152649,587152686,587152687,587152570,587152854,1460,587152622,7383,34714,587152882],"class_list":["post-472535","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-guest-blog-posts","tag-ada-30-in-color","tag-chronic-pain","tag-colonization","tag-disabled-femmes","tag-disabled-femmes-of-color","tag-filipinx","tag-futures","tag-healthcare","tag-medical-industrial-complex","tag-pain","tag-trauma","tag-white-supremacy","post-has-thumbnail"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2020\/07\/Allison-Masangkay-Photo-copy.jpg?fit=3861%2C2071&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p4H7t1-1YVx","jetpack_likes_enabled":true,"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/posts\/472535","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/comments?post=472535"}],"version-history":[{"count":0,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/posts\/472535\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/media\/472661"}],"wp:attachment":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/media?parent=472535"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/categories?post=472535"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/tags?post=472535"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}