I sat inside [another] sterile, yet humid hospital room many years ago in Georgia. My tío abuelo Wilbur, as well as my tía abuela Rosa and my prima Jennifer, alongside my madre and other family, were present. We’d converse with each other as well as monitor my bisabuela Mae Lizzie, who rested with a web of sensors attached to her, monitoring her vitals — especially her fluid levels, as she’d contracted pneumonia.
Mae Lizzie was over 100 at the time, but she was still responsive, although she didn’t speak as often as she used to. Instead her words were very measured and deliberate; the gradual decline of her mobility necessitated this. She still enjoyed the occasional scripture and sermon, so I imagined the ones read to her provided her mood with a spiritual, if not familial buoyancy as her beaded-eyes glowed and solemn expressions blossomed into a quiet smile.
The skies were not blue outside. Rather, they were drained, diluted, and relatively empty, save a smattering of clouds that coasted in the distance. I took note of occasional gusts of wind that nudged the trees scattered throughout the parking lot, and then honed in on the program currently airing: a tepid soap opera. The Young & The Restless, I think. Such irrelevant details were always things I obsessed myself with whenever I was lost in a maze of introspection; in this case, how similar the event was to a hospital visit years earlier in Nueva York when my abuela’s health had also taken a sharp decline. But that’s another story.
A nurse and Mae Lizzie’s doctor soon entered the room after a sharp knock, and I snapped out of my daydream. They informed us about Mae Lizzie’s dire condition, and like every fuckwad in the medical field, told us how futile trying to care for Mae Lizzie was. The doctor himself threatened to cease treatment of her when we suggested the opposite.
Mae Lizzie’s nurse in no subtle terms tried to inform us that we should “move on” because she was “old” anyway, as though Mae Lizzie was now a minor inconvenience to be discarded. I took note of the Karen’s uncanny, if not stereotypical, resemblance in attitude to young women sugar daddies abandoned their older wives for, and privately wondered if she’d so willingly sacrifice herself once age set in, the perks of youth dwindled, and — Mawuga forbid! — if she ever became disabled.
I wasn’t convinced she would.
Nonetheless, like many ableist fuckwads in a field that systemically oppresses the Disabled and Neurodiverse — especially the Black Disabled and Neurodiverse in this context — both Mae Lizzie’s nurse and her doctor missed the entire point of our objections to their casual dismissal of her: we knew Mae Lizzie was dying. We knew she wouldn’t live forever. No one does. We also knew that she deserved an opportunity to live out her days with the same amount of dignity any able-bodied human being was entitled to, including proper treatment for her condition, whether it was curable or not. Something these fuckwads — yes, they were, although those who aren’t can be equally as bad — seemed determined to deny my bisabuela.
Wilbur himself had caught the nurses routinely neglecting to check Mae Lizzie’s fluid levels and frequently reminded them of this while he sat beside her for hours at a time, ever-vigilant. Mae Lizzie’s unmissable expression of clear discomfort each time Wilbur saw her suggested those tending her would’ve let her die there in that bed in agony without any second thoughts. We knew we couldn’t trust that hospital nor her doctor and nurses.
We eventually found a better environment for Mae Lizzie and she was placed with professional caretakers we knew who gave a fuck about her. She was with people who wouldn’t gaslight my relatives with ableist — and frankly, racist — dismissals of her life worth, and that in itself is also uncommon. She didn’t spend her final days suffering, a simple request that apparently was too burdensome for others to consider.
I first learned about the 46 year-old Michael Hickson, a quadriplegic and Neurodiverse Black man denied further treatment while at St. David’s in South Austin, through a fellow Disability Justice activist. His Narrative was one that I’d heard many times before. In a way, it reminded me of what could’ve happened to Mae Lizzie. The fact that Hickson had contracted C-19 while in a nursing home prior reminded me of another story that I will tell soon. But most importantly, it was the Memory of the Liberal public’s overwhelming silence on the matter that I remember remembering the most.
I found myself only seeing mainstream coverage in media from Conservative outlets, cringing while my eyes darted away from links to a cornucopia of ridiculous [and loaded] political campaigns as I reluctantly shared tidbits of the articles with my pals. There was an unspoken tragicomedy in it, having to rely on the one source of popular media I’d probably never turn to on any other day for basic reporting. Yet, here we were.
We soon shared streams from Hickson’s widow Melissa, who’d unsuccessfully fought against the decision, retelling her family’s Narrative, including myriad legal and financial complications in her fight for Michael’s life, and watched as the able-bodied public continued to remain silent. Snippets of the now-infamous recording of Michael Hickson’s doctors surfaced; talk of Michael no longer having a quality of life due to his status as a quadriplegic with a brain injury. The mainstream public response remained dormant. The National Council on Disability even made a statement affirming the gross atrocity that St. David’s had committed — through the permission of Eldercare, the nonprofit awarded temporary guardianship over Hickson, they were careful to note. Yet “allies” refused to so much as report the event took place. Even one of my favorite stomping grounds, The Root, kept their lips sealed so tight you’d think someone superglued them shut, and to this day, over a month later, I’ve yet to see them so much as acknowledge the Hickson case in-depth. Searches with Hickson’s name do not yield any articles about him.
This all reminded me of a cliché I remembered remembering: two things could be true simultaneously: 1) those Conservative trash pandas were obviously opportunistic grifters in certain cases, but 2) they could also be grifters who cared about this injustice, however selectively, despite different having reasons. The people who were supposed to be my community’s allies were absolutely quiet — as I and numerous others have expected without fail — and very much alike the consciously silent populace that anti-racists criticized during the Floyd protests, these allies were convicted by their own words. In this case, their lack of them.
Eventually, I found another outlet in general convos with friends and acquaintances both on and offline. Yet, the same recurring History of excuses and exhausting attempts to justify Hickson’s murder emerged, though this thankfully happened in debates elsewhere or conversations I observed personally. Talk about the scarcity of resources in a pandemic, the need for “tough” choices to be made, how difficult caring for a person in Hickson’s position was, and the responsibility of those who were not able-bodied to accept scientific “reality” so that the capable would be prioritized were the most common responses.
They thanked Lupus patients they decided to deny medical treatment to “for their sacrifice” and “understanding”. They pressured family members into DNRs for any Disabled relatives who contracted C-19, and even in cases unrelated to C-19 whatsoever, they employed it simply due to those patients having disabilities or being Neurodiverse.
In short, they were no different than the Nazis who sterilized countless people who weren’t able-bodied or neurotypical before they began a new chapter in Imperial Germany’s collective history of ethnic genocides. They were the gov’t-financed Eugenicists that continued the practice right here; they were the numerous mental institutions that abused their Disabled and Neurodiverse patients. They were Nazis in 2020, and they were absolutely proud of it.
The Washington Post, or more specifically, Ariana Eunjung Cha, continues this racist and ableist cycle of discrimination and devaluing of Black Disabled and Neurodiverse lives. The writer frames Michael Hickson’s abject death and ostensible murder as another “tragic” inevitability, rather than the spectacle of torture it’d be if Hickson was able-bodied and also denied basic access to the very healthcare rights they often champion; he was even denied basic nutrition once his feeding tube was removed. It’s ostensibly no different to me than these fuckwads who are currently revealing their Nazism through their characterization of the Disabled and/or Neurodiverse during this pandemic.
The Washington Post’s decision to share that work ultimately proves they’ve chosen to enable this very ableist rhetoric, especially if they haven’t published any works offering dissenting perspectives that challenge Cha’s Ableism. It demonstrates, as-is often the case in general when it comes to Progressive, “Pro-Black” circles, that Black Lives do not Matter to them if they are Disabled and/or Neurodiverse. Instead, those lives have caveats attached to them.
I twiddled my fingers and I wrote my feelings in my journal. I lit my shrine to Aflakete, and reflected on the inevitability of yet another tragedy blossoming while my health remained threatened by multiple disabilities, and now, the possibility of contracting C-19. I hated the helplessness of it all, how even my ability to be present to support my family depended upon whether the Meniere’s attacks and Epileptic seizures were locked in a manageable denouement.
I hated how my episodes, which were mostly manageable now, had dwindled at the one time I couldn’t be physically present to support other family members. I didn’t pray though. I didn’t believe in such a thing working for personal reasons; instead I sat there and went to my Home, sitting beside Aflakete as he guarded our village like usual whenever I meditated. Within the next few days, Wilbur, alike my abuela Otilia and other familia who’d passed away, would be welcome to visit this sacred place if he wished.
Travel restrictions imposed in our state and very strict ones in Georgia — specifically Macon, where my tío abuelo lived — meant that my family wouldn’t be able to visit him as he lay hospitalized another time. Wilbur’d never quite recovered from an injury he’d gotten a few years earlier; he otherwise would’ve been the veritable heaux with smooth dance moves and irresistible charm we knew him to be. Now the complications that tugged at his organs re-emerged with a pronounced if not imperious fervor, almost gloating each time his organs operated significantly below capacity. My madre and me wanted to hope we’d be able to see him again before he passed away; to hear his witty, occasionally vulgar jokes, notorious pranks, and bubbly spirit manifest through the Narratives he shared with us.
As irrational as it was, I even wanted to imagine that this trial with the hobgoblins fucking around with his body was a prank in itself, and that he’d manage to recover from his health scare and stabilize. I don’t believe in miracle cures nor need them to enjoy this life, so I wouldn’t say my feelings were borne out of desperation, although I understood why they sometimes were for other people. Wilbur certainly didn’t believe in miracle cures either, although he did pray regularly. I did believe, however, in equal access to treatments that could make his life better, and those could be a miracle in themselves, given how shytty this country’s healthcare system and general attitude toward the Black and Disabled was.
One day, my tía abuela Rosa told us the news in a phone conversation with my mother. The dilemma we’d considered a possibility during this pandemic crystallized as each word graced her ears: Wilbur’s health was failing, with his heart rate gradually decreasing in a steady march. We knew he was about to transition. Several days later, he fell asleep and never awoke again.
We had no flashy funeral for him, aside from a minor meeting by family in the area. Instead, they later had a small ceremony in remembrance of him, and recorded it via Zoom so we could view it as well. The family then pooled our funds together for his burial.
I often look at his grave; at least, the pics that were sent to me, as the pandemic makes being there in person unfeasible. The sky looks as drained and dull as it did during Mae Lizzie’s time, but the grass lawn, patchy with clay dirt resting underneath it like a canvas, has a texture to it that reminds me of him, oddly enough. Messy and depressed on occasion, but never to the point that it compromised who he’d been since his childhood: a vibrant, jovial free spirit. His grave sits alone in the photo, with a Dodgers insignia carved into the granite surface, and I think about how Wilbur is surrounded by the things he loved, submerged inside a chasm filled with the boundless compassion of people who loved and still love him. We guard him and his Memory, just like he’d guarded and protected Mae Lizzie way back when.
Cha’s constant emphasis on the alleged medical reality of Michael Hickson’s condition being terminal in addition to frequent references to doctors stressing the certainty, for sake of argument, of Hickson’s impending death, is yet another notable ableist tactic. It’s even more noticeable due to her complete omission of a statement by the doctor Melissa had been arguing with: patients without Hickson’s disabilities had been treated before by them despite having similar complications.
Alongside the doctors she interviewed, Cha inadvertently insinuates that Hickson’s physical and mental status determine whether or not Michael is entitled to the same rights as able-bodied human beings with a status different from his; in his case, his Neurodiversity due to brain injury as well as quadriplegia. Cha uncritically accepts — and even seems to defend— their statements, which reinforce a common disregard the Disabled and Neurodiverse are used to experiencing in the medical field: he’s already dying, so their choice to essentially euthanize him is perfectly acceptable in their view — obviously including Eldercare’s.
Cha’s minimalization of the voice of his widow Melissa in the conversation is also glaring. She has no problem spinning the Hicksons’ lives as a couple in a classically tragic context once Michael became disabled. Special attention is constantly paid to the fact that Michael is Neurodiverse and thus thinks differently than a neurotypical person does, such as his lack of a concept of time for example. Cha emphasizes Michael’s inability to appropriately feed himself once he becomes quadriplegic, his blindness, his memory problems, his surgeries, and how dependent he ultimately is upon the care of others, especially his wife.
What is most notable is how Cha ultimately characterizes these complications as more significant than the very fulfilling life Melissa and her children have with Michael. The “good parts” detailing how he compensates almost seem like an after-thought and prove through her moralistic association that she views his lived experience as fundamentally negative. He becomes a proverbial “burden” in Cha’s view, even though Melissa Hickson clearly does not view her husband that way and, as reported, has spent much of her time advocating against such a view by not allowing medical authorities to euthanize him in previous events.
Cha then mentions Melissa’s advocacy for her husband and repeats criticisms, some found in official court statements, that paint Melissa as negligent without ever giving Melissa Hickson a chance to speak for herself in response to the claims made about her. Instead, Cha constantly defers in-depth to only one familial perspective of a Narrative she initially suggests is complex and complicated. It’s clear long before the article is even half-way finished, however, that Cha doesn’t view it to be so in practice, and her frequent characterization of Melissa’s advocacy as unreasonable and driven by denial in the face of a historically-racist and ableist medical field is telling.
Not once is Melissa Hickson’s testimony in her recent FB videos nor even her family’s Gofundme campaign requesting financial support — which also provides background information — ever shared by the journalist. She doesn’t explore the questionable means through which Melissa claims she was unable to obtain guardianship of him either, by actually centering Melissa in the conversation. Cha often [briefly] talks about Melissa, but rarely actually listens to her to the same extent she does Michael Hickson’s “pragmatic” sister.
Even worse, more emphasis and weight is given to the doctors and figures with no personal connection to this story, almost as-if Melissa’s feelings are voided by her not having expensive medical degrees. Add to this Cha’s frequent tendency to suggest Melissa Hickson and her family’s desires to save Michael rely on “faith” and “hope”, in contrast to the supposedly evidence-based perspective the doctors that euthanized Hickson, and you witness an all-too common ableist tool weaponized to gaslight and portray the desires of those advocating for the worth of Disabled and/or Neurodiverse lives as unrealistic.
Yes, not wanting to die while denied the very access to healthcare Leftists drool over, chanting “Medicare for All!” ad nauseum, is some kind of incredulous request when you’re Disabled and/or Neurodiverse! Combined with the well-researched lack of access to treatment and healthcare Black folks already wrestle with, faith-based views like Melissa Hickson’s make perfect sense. We can’t rely on a historically racist and compromised medical system like whites can, doubly-so if we’re also Disabled or Neurodiverse.
Melissa Hickson’s appeal to the compassion she hoped existed in the doctor she spoke with so that her late husband would receive equal treatment is thus incredibly nuanced. It’s an appeal to something that doesn’t use data to disproportionately justify our deaths or deny us equal treatment due to racist biases. Cha’s attempt to paint it negatively rather than seriously examine this proven disparity then takes on a new dimension, and it’s thoroughly anti-Black and ableist.
Guillermo finally called me out of the blue. It’d been years since I’d last spoken to my abuelo; the phone number he gave me never returned my calls, and at one point had actually lost service. I don’t think there was a single moment I didn’t think of him or the rest of my parientes in Nueva York, some of whom were wrestling with an especially severe complication. Nunya.
Yayaa was the last person my brother had spoken with, and as she revealed, the health problems Guillermo dealt with had worsened significantly. It was either rehabilitation or death, Yayaa and Yomary had both stated to him, rather flatly. He obviously chose life, and began a journey into rehabilitation to strengthen his legs and the rest of his body so he’d stop collapsing so frequently. Unexpected developments had completely dashed all of the progress he’d acquired, however.
“I’m trapped in this fucking prison man,” Guillermo’s voice had the hearty Boricua accent I’d always remembered. “They put me in this fucking prison. I want to get out.”
“They put you in Riker’s, huh?” I responded, with just a hint of playfulness to offer him some levity.
“Yeah, heh, they did man. Guards everywhere, man.”
“We gonna have to bust you out Papito,” I was curious now. “So how have you been? You know I missed you, right? You don’t answer your phone.”
“Man, I was in the center man, working on my legs, and they gave me the, what do you call it? The one-nine.”
“You got C-19?” my heart skipped several times, although I was used to it.
“Yeah man, those fuckers gave it to me. I couldn’t breathe for two weeks, on the oxygen machine, and now I can’t move my legs. I can breathe now but I can’t fucking walk no more! Do you know I cursed those fuckers out? I curse them all out everyday for it when they come talk to me! I want to beat their asses. I want to get out of this prison.”
I felt the same frustration boiling inside of me, in no small part due to one of my biggest fears surfacing: the inability to visit yet another family member in distress during the pandemic, especially my parientes up North. The possibility of any of them — I learned some were now in Borikén — contracting C-19 amplified the anxiety that manifested.
“When you coming up to see me? I want to see you guys. When you gonna live up here in New York? I know you don’t go out nowhere.” Guillermo was always matter of fact, and I wouldn’t have it any other way. I then spent a large amount of time explaining the situation to him; how a cousin with Lupus couldn’t even attend the funeral of her mother when she passed away; how we were unable to see Wilbur; my inability to spend time with my prima Milly, although we kept in touch. He’d ask me about my disability as well, and I’d take just as long explaining its complexities to him.
“I just miss you guys man. I want to see you.”
“I want to see you too, Papito. I gotta break you outta that prison once this lockdown is over. I’m gonna cook you pasteles too.”
“Well, I don’t make those no more. Just coquito!” Guillermo didn’t chuckle much during our conversation, so I appreciated the hearty laugh he made this time. I laughed with him and hashed out a plan to help him escape his prison. “I’m gonna fight no matter what man, okay? Those fuckers won’t stop me from fighting. Even if I can’t move any more, I will still fight, okay? I’m gonna fight for you too.”
“Yeah, Papito. We gonna break you outta there, and I’m gonna fight with you,” I reassured him.
Then, yet another detail came to mind, but it wasn’t pointless: I remembered remembering a machete Guillermo said he’d buy me, and I appreciated what it now meant. I would assert that I was alive, and had worth that was timeless, not bound by the conventions of strangers. I’d cut a path with that machete, and prove that my Blackass Disabled and Neurodiverse Life Mattered. I would fight with it and guard my familia’s Narrative just like Guillermo guarded me; just like I guarded the Memory of Wilbur; just like he guarded Mae Lizzie’s History. Just like each of them had guarded me throughout my childhood. We guarded each other in a world that would not guard us.
We live in a time where outlets demanding Racial Justice and the prioritization of the value of Black lives can also imply that, very much like Cha’s piece, the desire for Disabled and/or Neurodiverse lives— especially Black ones — to be treasured and granted the same value as able-bodied ones is an irrational desire that runs counter to science. Our rancor over Racial Injustice and Systemic Ableism can be conflated as phenomena “echoed” by Rightwing organizations, and incidentally, almost by unintentional admission, not echoed by the liberal allies we expect to have unconditional appreciation for Black lives. I’ve even heard it called “selfish”. Like I said; they’re Nazis.
I honestly have to praise the Post, in spite of my serious problems with how its piece is written and constructed, for brilliantly outlining key problems we in the Disabled and/or Neurodiverse — especially those of us whom are Black — community have had. The doctors Cha is careful to interview and legitimize over other perspectives she does not feature as often, especially Disabled ones, reaffirm why #DisabledNotDisposable and #BlackDisabledLivesMatter exist in the first place. Because we are an afterthought to them, an inconvenience even when, as doctors Cha interviewed stated defensively, Disabled and Neurodiverse patients like Michael Hickson who were ostensibly denied proper treatment were not denied it due to an actual lack of resources.
Michael Hickson’s Black life, let alone any Disabled and/or Neurodiverse person’s life, did not need to be normal in any stretch of the word to have value independent of the opinions of the doctor who was supposed to be treating him. His Black life didn’t suddenly lose value when he became terminal, nor could his dignity only be preserved through his immediate death. Suggesting otherwise proves how performative one’s Pro-Blackness is, because their advocacy for Black lives becomes entirely conditional. It proves that only some Black Lives Matter, rather than all of them.
Perhaps trusting in these “allies” at the Washington Post to join the fight to end the practice of Racialized Ableism is “futile” as well? The evidence certainly suggests so.
Those who’d like to support the Hickson Family as well as learn more about their struggle may do so by clicking the attached Gofundme link: