By Courtney Felle, Summer Internship Program alumni, 2020 and 2021
I am queer because I am disabled; I am disabled because I am queer.
I was born with a rare form of Congenital Adrenal Hyperplasia (CAH), called POR Deficiency. POR Deficiency is both a chronic illness and an intersex variation. I showed symptoms from the beginning of puberty, but I was not properly diagnosed for eleven years.
Doctors treated me differently as a disabled, intersex, and femme person. They cherry-picked which symptoms they thought were important. They ignored parts of my reproductive health that suggested I might be intersex. Doctors still have a lot of stigma against those whose bodies do not match what they think of as “male” and “female.” When I was fifteen, one doctor told me that my chronic pain might go away if I got a boyfriend… Even though I had already come out to them as queer. (Unsurprisingly, the same doctor did not say this to my younger brother when he started getting migraines.)
This is only a small glimpse into the discrimination and harm that many intersex people experience. Many intersex people have had surgeries without their consent to make them seem “normal.” These surgeries can cause significant pain, trauma, and lifelong disabilities. For example, many intersex people end up at a higher risk for arthritis and osteoporosis. For this reason and others, many intersex people also identify as disabled. (You can read more about this in an article I wrote for Teen Vogue!)
Disability activists and intersex activists share many policy priorities and concerns. As my story reflects, it is essential to have healthcare that actually reflects your lived experience and takes your needs into consideration. Examples of key policy issues for both disabled and intersex people include:
- Potential Medicaid cuts would disproportionately harm both disabled and intersex people. An estimated 8,600,000 people would lose health insurance if the Republican Party passes their proposed Medicaid cuts. “Optional” services would be the first to be cut, including home- and community-based services (HCBS). Many disabled people and older adults use HCBS to avoid ending up in institutions like nursing homes (Justice in Aging). Of course, we as disabled and intersex people know that these services aren’t really “optional.” They are vital to our survival.
- Potential bans against hormone replacement therapies, or HRT, are dangerous. Previous versions of the budget reconciliation bill currently moving through Congress attempted to ban Medicaid from covering HRT. People may rely on HRT for many reasons, including disabilities and chronic illnesses. I rely on a form of HRT to prevent life-threatening periodic paralysis flares. You can learn more about how an HRT ban would affect disabled and intersex people in a recent article in Teen Vogue. Any attack on healthcare will disproportionately impact disabled people, particularly low-income disabled people and disabled people of color.
- People who use Medicaid have significant limits on which doctors they can see. This prevents many patients from seeking a second opinion, including if their doctor discriminates on the basis of gender, queerness, disability, race, or another identity. It is important to allow people to find and afford doctors who are supportive. Competent healthcare providers can be the difference between life and death for disabled people and intersex people.
- Both disabled and intersex people have to constantly advocate for ourselves in healthcare. We have to explain our conditions over and over. We have to fight to get necessary medications and procedures covered. We have to check our medical records to ensure they don’t include harmful or discriminatory notes, and sometimes fight to fix them. This takes a lot of time, energy, and money. We deserve more transparent and equitable healthcare systems.
These are only some examples of the policy intersections between the disability and intersex communities. Overall, it is clear that many people in power – including policy-makers, doctors, and insurance providers – think of us very differently than we think of ourselves. We are faced with unwanted interventions and surgeries. Meanwhile, we are also unable to access the healthcare that we do need and want.
We know that our quality of life is not what those in power measure it to be. But we can and do have meaningful, flourishing lives. We can demand much more of those in power to make those lives more attainable.
Court(ney) Felle (they/them) is an MA/PhD student at the Ohio State University, housed between Writing, Rhetoric, and Literacy and interdisciplinary Disability Studies. Their previous writing on disability can be found in SICK Magazine, Monstering Magazine, interACT: Advocates for Intersex Youth, Teen Vogue, and other publications.