The American Healthcare Industry is a war zone. Don’t believe me? I’ve been issuing dispatches from the front-lines for years.
In what was initially a purely educational venture, I began publishing day-in-the-life content shortly after being diagnosed with a genetic connective tissue disorder, which helped explain why I also fought chronic pain since adolescence. Publishing what had been a private struggle for over twenty years was an act of defiance to the impending loneliness that comes with being labeled as a “rare syndrome patient.”
When the national political conversation turned to eliminating (or at least, weakening) the Affordable Care Act, I disclosed how the landmark healthcare law granted me access to life-enhancing care that had been previously denied. When the Republican party, longstanding critics of progressive healthcare policy that they are, took the presidency in 2016, I joined disabled healthcare activists in sounding the alarm that they would use whatever means necessary, including twisted healthcare policies, to subjugate and ultimately euthanize poor, disabled, and “medically needy” populations.
Afraid for the future, I begged friends to lobby for progressive healthcare policies that would continue repairing our broken medical industry. In every conversation, I was stunned by their cruelty. Most took the chance to sling insults, as if I’d personally raised their insurance premiums.
In March of 2020, as the novel coronavirus and disease it causes, COVID-19, are being transmitted across the world, I should be angry. Instead, I find myself staring in disbelief as Pulitizer Prize-winning journalists who are only now realizing that “the working class who opposes them [the GOP] can die and be replaced."
Far too many people in my circle of acquaintances, including some who claim to follow this blog, are stunned at this revelation.
In today’s news environment, chronically ill patients are being thanked for their “sacrifice” as insurance carriers stop filling Chloroquine prescriptions, ahead of a currently fictitious national shortage, fueled by irreponsible celebrities and our misinformer-in-chief.
Like most disabled activists who carried this torch before, I never intended to become a political commentator. Instead, I watched as the world around me moved to politicize my very existence. Had I chose not to speak out, the only alternative was to be silent; allowing my voice, and eventually, life to be taken without a fight. How could I do anything else?
In a quote I encountered on Instagram a few days ago, Author Adrienne Maree Brown suggests how “our own future may depend on learning to listen, listen without assumptions or defenses.” In a past life, I became a storyteller and documentarian because I saw the power of a narrative to enact positive changes in our society. I hoped to avoid needless loss of life and health, for myself and others like me by sharing my take, but I suppose that was expecting too much. Now, our country is paying with the lives of anyone deemed unworthy by the medical system.
Perhaps I was the foolish one for thinking anyone still knew how to listen.