Sequestered away in my apartment in Washington, D.C., I listen to the sounds of construction outside my window. Despite stay-at-home orders and closures of non-essential businesses, the construction bringing gentrification and overpriced apartment buildings most D.C. residents can’t afford continues on. It’s a beautiful sunny day and I’d like to be anywhere but at my computer right now.
I’m multiply disabled and chronically ill with several of the underlying health conditions that make me vulnerable to COVID-19. For the sake of my life and all others I come in contact with I’m staying home. However, the vulnerabilities that put my life in jeopardy under this pandemic aren’t simply the fear of contracting the virus. I’m vulnerable during this time partially due to the lack of disability resources and access to my regular medical care. Even if I manage to avoid contracting COVID-19 I could still very well die due to this pandemic.
All of my regular medical care, including pain management, is canceled for the foreseeable future. My pain levels are rising with every day. Soon I may not be able to work or pay my bills. Not only is this a financial hardship, but it could mean one less media professional to cover the stories of my hyper-erased and misrepresented communities. Not only am I disabled and chronically ill, but I’m also bisexual, Two Spirit and a citizen of the Cherokee Nation of Oklahoma. I spend a great deal of my time just trying to get people to understand that all of my communities are real and exist. While I don’t want to be one of the very few journalists in my communities, it is the reality. It infuriates me that our stories could further go unheard.
Coupled with the lack of resources pre-pandemic, the crisis has put me at a real risk of losing my home health aide. In 2019 the D.C. government significantly reduced and kicked many people off of the local home health aide program. Many of us, myself included, were already in the midst of filing appeals and suing the government to keep our aides. Now with COVID-19, more of us are losing our aides because they either can’t or won’t come to work, and the D.C. and federal governments are doing nothing to rectify this situation. The average home health aide in D.C. earns between $11-16 hourly. Benefits are few and far between. Most of the aides are womxn of color and immigrants. The work they do isn’t valued because disabled and ill people’s lives, along with elders’ lives, aren’t valued.
As public transit has been significantly reduced, many aides are unable to get to their patient’s homes, and alternate, affordable means of transportation have not been provided to them. My aide and I are paying out of our pockets so she can take rideshares and cabs to my home. Neither of us has this kind of money, but it’s what’s now necessary. With the closures of public schools, many are without their free or low-cost childcare, creating yet another barrier to work. Personal protective equipment (PPE) and information on COVID-19 aren’t available to many aides either. The agency my aide works for hasn’t given out any information to the aides on the pandemic and how to keep themselves and their patients safer. Nor has it given out hand sanitizer or wipes. It only began giving extra gloves and giving the aides one mask each about two weeks ago. When I’ve spoken with my case manager and the agency, I’ve been told, “We can’t make people work.” This is true, but what they — and the government more broadly — should be doing is providing health care workers with the supports they need to do their jobs with lower risks to their well-being and that of their patients.
Discrimination and a lack of resources are going unchecked. D.C. Mayor Muriel Bowser and the city council have done little to ensure people such as myself are cared for during this time. The aides aren’t receiving any additional paid sick leave, hazard pay, nor are their increased expenses being covered.
Access to food for disabled and ill people is an issue. Just this week while attempting to shop at a Trader Joes, I was denied use of an elevator and told that despite being disabled I still had to stand in line to enter the store. Most of the grocery stores in D.C. aren’t offering special shopping hours for those of us who are vulnerable but aren’t elders, putting us in the position to either go hungry or risk our lives to grocery shop. Delivery services are often more expensive than shopping in the stores, and they don’t all accept SNAP, creating another barrier for many disabled people. Buses, when they’re even running, are only opening the front doors for those who are visibly disabled or elders, but as roughly half the disabled people in the U.S. have invisible disabilities, this has created larger access barriers. The Washington Metropolitan Area Transit Authority paratransit program, which is the only way some disabled people are able to get around, has suspended all evaluation processes, leaving some disabled people without paratransit.
Disabled people are more likely to live in poverty and suffer from higher rates of houselessness than the abled. This is partially because employment is difficult for many of us to obtain and keep. I’ve had several employment situations where I was denied my federally protected right to reasonable accommodations, such as working from home. I was repeatedly told it’s not doable, so I’ve stayed in poverty even when I was physically able to work full time. It’s rather ironic that the universities and other workplaces that have refused to make accommodations for me are now offering these same accommodations widespread to the abled and healthy. I sincerely hope that those of us that come out the other side of COVID-19 have the opportunity to sue employers, institutions of learning and the governmental bodies that are have denied us our federally protected rights.
Compounding my fears are the projections that the Washington, D.C., metropolitan area could become one of the next hotspots, with our peak cases anticipated to possibly hit in late June or early July. I worry that the photos of mass graves being dug for the excess bodies in New York City could become a reality here.
By the time this is all said and done, most of us in the U.S. will know at least one person that contracted COVID-19; many of us will know people who’ve died from it. As I confront this reality, I think of my communities with deep concern. The Native population only recently grew to 2 percent of the total U.S. population. While this number is small, it’s significant and represents how we’re rebounding from over 500 years of genocide, but now we have to worry again about entire tribes ceasing to exist. Indigenous people were already suffering multiple crises pre-coronavirus. Despite the federal government’s trust and treaty responsibility, our Native health care system is the worst in the country. The Indian Health Service (IHS) is grossly underfunded, understaffed and without many of the resources even the most bare-bones of medical facilities have. It’s also important to note that Native people have the highest rates of disabilities and illnesses in the U.S.
Funding streams and access to supplies have been grossly less than what our tribal leaders have requested or they’ve been flat out denied. Many health care facilities that serve Native communities are without COVID-19 tests and the labs to process them. The numbers of confirmed cases and deaths in IHS system continue to grow rapidly. The Navajo Nation has had as many confirmed COVID-19 deaths as thirteen states combined. A lack of accurate data collection, however, doesn’t reflect the true rates of contraction and death. Seventy-one percent of Natives are urban based, but our ethnicity often isn’t accurately counted in non-Native health care. Despite repeatedly checking American Indian on health forms, throughout my life, I’ve often found that I’m listed as “white” in my medical records. The numbers from IHS also don’t include the number of cases in tribal-run and urban Indian health centers. I’m terrified at what this all means for my communities especially as we now face state economies being reopened. Frankly, I’m pissed off that I, and my loved ones, could die due to preventable causes.
It’s becoming more difficult for me to maintain my composure every time I leave my home and see people without their faces covered or taking any precautions such as social distancing.
The lack of access to medical care is also further setting us up for eugenics — and even genocide. Determinations of who’s “socially useful” and therefore worthy of medical care exclude the vast majority of my community members and many other marginalized people. Our lives are deemed worthless in the best of times, so it’s not surprising that we’re deemed “unworthy” of care during a pandemic. The only real chance I have in being deemed “socially useful” is that I have the privilege of a graduate education, am a journalist and not an elder. Many of my people aren’t that fortunate.
The weight of historical and intergenerational trauma from the government restricting Native people’s movement and germ warfare are a heavy burden I’m carrying. It wasn’t so very long ago that Native people weren’t allowed to leave reservations without the white man’s permission. Pandemics and germ warfare have been used to kill us, and there are signs that this could happen again. Some white supremacists have been reported encouraging each other to go into Indigenous, people of color, and Jewish spaces to cough on us and spread COVID-19 in the hopes that we’ll die. This is a modern-day version of smallpox blankets that were used to solve the “Indian problem.”
Every day is a struggle to remain hopeful and to continue fighting to live. Since the stay-at-home orders and rising numbers of cases and deaths, I’ve had days when my depression has been so bad, I felt a complete void of interest and motivation in anything, including my work, which I love dearly and feel a responsibility to. I worry how many in my communities that struggle with trauma and addiction will fare during this time.
I’m especially worried for my home state of Oklahoma, which is one of the very few states that hasn’t issued a stay-at-home order. Instead, Gov. Kevin Stitt has told Oklahomans to practice “personal responsibility.” The first person to die of COVID-19 in the state was a fellow Cherokee Nation citizen. Stitt and the other right-wing, oppressive monsters that run Oklahoma have blood on their hands, proving just how little they value life despite their claims to the contrary.
Regardless of whether or not I make it through this pandemic, I know my communities will endure, as we always have — but we’ll pay a very heavy toll along the way.