I’ve woken up many times over the past few years with an ache in my stomach. As someone living with multiple chronic illnesses—ankylosing spondylitis, Ehlers-Danlos syndrome, and Crohn’s disease—morning body pains are part of my normal routine.
Waking up to the news that the U.S. Senate had succeeded in its rushed confirmation of Amy Coney Barrett to the Supreme Court, I found the pit in my stomach was not a typical symptom. Instead, the feeling was the realization that the protections guaranteed under the Patient Protection and Affordable Care Act (ACA) remain under siege on Republican party and conservative ideological lines. With Barrett’s confirmation to the court, I understood my access to the lifesaving medical care I need, both as a transgender person and as a disabled person, would never be secure.
It turns out oppression is its own kind of nauseating.
The Case of ACA v. ACB
The ACA has been used as a partisan punching bag since its inception. Prior to Justice Barrett gracing the national stage, the ACA was already under threat. Repealing the law has become central to conservative campaign promises for the decade of its existence.
On Nov. 10, the U.S. Supreme Court is scheduled to hear arguments in California v. Texas that could spell certain death for the health care law. A decision on the upcoming case regards the concept of severability, or whether a law can stand if part of it is struck down. The enforcement mechanism at the heart of the ACA is the individual mandate, a provision that requires most people to maintain health coverage or pay a penalty tax as a Shared Responsibility Payment. In 2017, Congress effectively eliminated the individual mandate penalty in the Tax Cuts and Jobs Act by zeroing out the penalty amount.
The stakes are high in this case. One scenario is that SCOTUS reaffirms the constitutionality of the law, as they have done twice in National Federation of Independent Businesses v. Sibelius and King v. Burwell. However, in another scenario, a six-to-three conservative majority—now including Justice Barrett—could determine the individual mandate to be unconstitutional and potentially repeal the law in its entirety rather than severing and eliminating the individual mandate alone.
Reports from activists and legal scholars alike have cited a 2017 law review essay written by Barrett, which publicly criticized Chief Justice Roberts’ 2012 opinion that the individual mandate penalty of the ACA was constitutional. “Chief Justice Roberts pushed the Affordable Care Act beyond its plausible meaning to save the statute,” wrote Barrett.
When Senate Judiciary Committee Democrats brought up this critique during her confirmation hearings and implied she opposed the ACA, Barrett responded that she was not “hostile” toward the law. But disability activists and legal experts know better. Disability law attorney Robyn Powell outlined how Barrett’s limited judicial experience indicates she could harm disabled people beyond her decisions on disability-specific judicial matters alone. “Disability cuts across gender identity, sexual orientation, race, ethnicity, and other identities. As such, all types of oppression affect people with disabilities.”
While some in the disability community have assumed that Barrett would be supportive because she is the mother of a disabled child, others were quick to counter. In their statement opposing Barrett’s nomination, the Autistic Self Advocacy Network (ASAN) laid out the dangerous role Barrett could play in affecting the lives of disabled people, especially regarding her rulings on bodily autonomy, students with disabilities, and broader civil rights protections.
Records matter, and representation does not guarantee rights.
People With Preexisting Conditions Are Under Attack
For the 61 million people living with a disability in the U.S., the ACA is a safeguard to ensure that we won’t be denied health insurance coverage on the basis of our disabilities. For those of us disabled people who also need birth control, preventive cancer screenings, or gender-affirming medical care, the ACA protects our access to those services, too.
I’ve navigated the health care system as a transgender and disabled person and witnessed how it hurts both groups of people. I have been assaulted by a health care professional and denied coverage for transition-related treatment by health insurance companies. By the time I turned 21 years old, I had mourned the death of my partner and three other transgender friends and mentors. Every single one of them had disabilities. All of them died before they were 30 years old.
I accessed transition-related medical care just one year after the passage of the ACA. Now, I realize I could have been denied insurance because of a preexisting condition, had I tried to seek care sooner. Transgender people need a diagnosis code to access hormones, surgeries, or mental health support. But in a world without the ACA, insurers could deny otherwise healthy or nondisabled trans people based on this diagnosis code. That threat is still alive and well today.
Coming into my own experience of disability has cemented how alike the oppressive systems impacting transgender and disabled people are in upholding our health care system. This past February, I was diagnosed with two autoimmune diseases that explained my rapid-onset chronic pain. In order to halt disease progression, I had to start on immunosuppressive biologic therapy. Then it was March, and the U.S. COVID-19 pandemic began to swell nationally. In less than the four hours it took for the biologic drug to be pushed through my veins, I became high risk for COVID-19 complications and potentially death because of my disability.
After losing my employer-sponsored health insurance, I panicked at the thought of being uninsured during a pandemic. I bought and purchased a new insurance plan on the ACA marketplace. If the ACA were to be repealed, I knew that it would be nearly impossible for me to get insurance because of my preexisting conditions, which often incur $18,000 medical bills per treatment.
The irony of becoming immunosuppressed during a global pandemic is not lost on me. More than that, it has led to lengthy discussion with queer elders in my life who have lived with HIV for decades and their longtime caretakers. Those same people were now supporting me, driving me to multiple infusion appointments, donning masks and gloves, each saying something to the tune of, “We’ve done this before.”
What Comes Next?
The current COVID-19 pandemic has inflamed my anxiety about the state of health care for people like me who are just beginning the process of understanding that they are disabled. In our interview, Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress, highlighted that SCOTUS could potentially repeal the ACA at a time when COVID-19 long-haulers are experiencing long-term chronic fatigue and respiratory issues.
“Survivors of the coronavirus are now part of the disability community, according to the definition of the [Americans with Disability Act], as people living with preexisting conditions,” she said. “Repeal of the ACA would allow insurance companies to discriminate against long-haulers and deny them coverage.” Patient-led research on COVID-19 recovery supports her assertion, with one report providing analysis that the chance of full recovery by the 50th day of symptoms is less than 20%. The research group is currently surveying COVID-19 survivors on their recovery beyond the first eight weeks of illness.
The ACA is far from perfect, especially for disabled and chronically ill people who frequently interact with health care systems. Brianne Benness, host of the podcast No End in Sight, has recorded over 70 episodes featuring a chronically ill person’s journey to diagnosis. In our email exchange , Benness noted the importance of the law and offered, “I can’t stop thinking about … how many disabled and chronically ill people barely have access to health care as it is. [We don’t have] access to competent, unbiased providers or the resources required to be perfectly compliant with our care plans.”
Many disabled and transgender people alike can relate to this experience. Though a law may be in place, enforcing it and creating affirming and supportive health care settings often lag behind.
When asked about what happens if the ACA is overturned, Benness replied, “Many of us will cope with that the way we’ve already been coping: in community. I think we’ll keep sharing resources through mutual aid and by mailing supplies and by passing on whatever health care literacy we may have developed. Just like we do now.”
Earlier this year, Benness started #NEISVoid, a Twitter hashtag, as a community resource for chronically ill and disabled people to support each other.
In ending our interview, Rebecca Cokley reaffirmed that while voting is important, it must be part of a larger strategy. “We also need to show up for each other and for other marginalized groups who are also impacted in the struggle to access high-quality, affirming, safe, and accessible health care.”
For all the barriers that disabled and trans people face in our health care system, it is clear to me that Amy Coney Barrett is not the source of the problem and the ACA is not a golden ticket. Yet, I know Barrett will uphold an environment toxic to the rights, safety, and wellness of transgender disabled people.