In a recent profile at the Bulwark, Shane DiGiovanna described his life with recessive dystrophic epidermolysis bullosa, a rare genetic disease that causes much of his skin to shear off from his body, damages his hearing, and gives him cancer. It’s difficult for him to eat, let alone work. Gene therapy could offer a solution one day, but as DiGiovanna said, Robert F. Kennedy Jr. and Elon Musk “could devastate the next decade of research and development of a cure for RDEB — my holy grail … Just keep in mind that the weak and marginalized include infants and children who are missing most of their skin and suffering through extreme and utterly pointless pain.”
When powerful men threaten funding for cancer or Alzheimer’s research, they aren’t just eliminating scientific jobs. They’re putting people like DiGiovanna in danger.
As he confronts the administration’s war on scientific research, DiGiovanna must worry too about Medicaid, which covers much of his care and is poised for significant cuts. Even the medical professionals who provide his care are at risk: A beloved nurse is an immigrant, and although he is an American citizen now, DiGiovanna knows that he is still threatened by Vice-President J.D. Vance’s ultranationalist rhetoric. Aspects of DiGiovanna’s story will be familiar to anyone with a chronic illness or disability in America; it certainly was to me. I also have a rare genetic disease and though my condition is not as painful or life-altering as RDEB, it still means that I am acutely aware that the advancements and supports that make my life easier are in significant danger. As a journalist, I try to understand the roots of this war on science and public health; as a patient, it is difficult for me to grasp why anyone would turn away from the vaccinations, antibiotics, and research that have saved untold lives. People like DiGiovanna and I are exceptional in the sense that our conditions are rare, but we don’t live our lives in isolation. The same forces that threaten us are going to come for everyone else, too.
Behind the war on science and public health lies a total hostility to the simple notion of a social contract. “We’re not going to harm our children or [risk] the potential to harm our children so that we can save yours,” an anti-vaxx mother in west Texas told the Washington Post last week. That’s selfish, and dangerous too. One unvaccinated child has already died of measles in Texas and the outbreak may have claimed another life in New Mexico. But if we’re going to defend public health, we have to identify its real enemies, and there’s a difference between a Texas mother and someone like Kennedy, who’s made a living and a reputation on the bodies of the dead. His anti-vaccine rhetoric already has a body count. In the years before my diagnosis and after, I learned that I couldn’t bootstrap my way into health. I needed help: care that I could afford, paid sick leave, and stable housing. America guarantees none of the above.
For decades the pro-business right has said that we don’t need a social contract; that it is even an impediment to true prosperity. Instead we have liberty, which is to say choice, and that is a seductive story even though it’s based on a lie. A figure like Kennedy fits neatly within the Trump administration because he preaches individual responsibility over the public good. To Kennedy, the solution to chronic disease is a vitamin, or a stint on a farm, not sound science or public-health institutions. He and his allies agree that the market must be free — to profit, coerce, and kill. Science can’t flourish in such an environment, nor can public health. Both are at constant risk from a ruthless system that demands constant human sacrifice from the very people it claims to help. It’s not strange, then, that conspiracy theories can be so attractive, since they often begin with a certain base recognition that something is wrong. Anti-vaxx mothers in Texas are at war with the social contract because they believe their children are in danger. They’re wrong about vaccines, but there are real predators in our midst. Pharmaceuticals are expensive, and so is health care in general. Why trust the system if it doesn’t work for you anyway?
But cod-liver oil can’t cure measles, and beef tallow isn’t healthier than seed oils. They offer the illusion of control in a hostile world. People who put their trust in conspiracies and lies may discover what Shane DiGiovanna already knows — that we all need science to be healthy. Disability is not divine punishment but a condition that can befall anyone, especially if they are poor. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag famously wrote. “Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Without a safety net that works, science will falter and the kingdom of the sick will only expand. The price is human life.
