Filed under: American, Healthcare | Tags: ableism, disability, Healthcare, medication
When I was going through the Great Medication Refill Denial Crisis of 2022, very few other people were aware of it, or involved. The receptionists and the pharmacy consultants knew I was struggling. Some friends and family heard about it from me. The doctor who denied the refill may have not even been aware of the repercussions of her actions. There was enormous drama happening in a very dark corner.
Then I wrote about it. And I learned that other people I know have gone through similar difficulties. I learned that friends of mine were also struggling with invisible disabilities, also denied essential healthcare. And I started to wonder how we could make this healthcare system, that so often does its cruel deeds in the dark, more visible.
Because, when I was in that medication hole, I felt so very alone in it, even though I knew others must have been through it, too. When it happens to you, it just happens to you, in the quiet of your home or wherever. It’s a very private invisible struggle. (Unless you write a blog about it that somehow goes a tiny bit viral via LinkedIn.) I felt so hopeless in the midst of that experience, just lost in the dark (literally sometimes, as I had some migraines) and unclear about how to proceed.
What I find especially overwhelming is how many people are likely needlessly suffering like this, just out of sight. Healthcare is shrouded in secrecy for some really great reasons but the fall-out of that is that bad behaviors within it becomes virtually invisible and the people who are most wronged are often especially invisible.
How do we shine a light on injustice in dark, private, HIPAA protected corners? If you’re mistreated at a restaurant, you can write a YELP review, gather your friends together, organize a boycott or something. And there are some ways to do that sort of thing in healthcare, for individual doctors, but how do you address a whole system?
Like, this doc who denied my refill. It sounds like she’s just a sadistic doctor and we could just blame her and get on ZocDoc and call her the worst doctor in NYC to get her stars down to zero – but probably the problem goes further down. She works at a practice where almost every doctor is booked six months ahead. That means that the practice (Neurology at NYU Langone, let me stop being coy about it) hasn’t hired enough doctors to cover their patient load. When medical practices are businesses, (and NYU is a mega business) they’re trying to get away with as much as they can, to save money. What if they hired an adequate number of doctors and one day one of them wasn’t full booked? Oh no! Would they lose a little money? Nightmare!
I know those doctors are overbooked. I know the whole game is all just balanced on a thread. So, sure, that doctor I didn’t see MAY be a sadist but she’s operating in a system that certainly doesn’t encourage her to do anything differently. The doctor I see there now is great and very kind and responsive but I’m sure she’s making extra effort to do that. It’s not built in to the system to make space for people. It’s built to run in the most profitable way possible.
Having a disability can already be incredibly isolating. When something goes wrong with our healthcare, that isolation can grow even more acute. It feels as though it’s just happening to ME – when, of course, it happens to others like me all the time. But how can we come together, even if we can’t leave the house, to start to shift this dynamic? Is there a way to create a kind of Patients’ Union, where we join virtual hands and fight?
Not every one can (or should) disclose their disability. Ableism is so severe in this country (and probably around the world) that it is a genuine risk to reveal any kind of illness or injury. Look at Chadwick Boseman, one of the most well regarded and popular actors of the last years, and he felt he couldn’t disclose his illness, even to his closest colleagues. Probably with good reason. There might have been severe consequences to Boseman’s career, to his personal life, from that exposure. It shouldn’t take exposing ourselves to shine a light on systemic problems. Callous behavior seems to thrive in darkness and light can be the cure sometimes. I feel like I’m searching for a way to document such failures, collect them and expose the systemic seams, all without further endangering already vulnerable people. There’s got to be a way, right? This can’t be the best we can do.
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