Forget overcoming disabilities, how do we overcome the medical system?
The only disability is our disaster of a medical system
My interactions with the medical system dredge up my childhood desire to become an anthropologist. How does it all fit together? How do people within the system view their role? What does it all mean? How did it come to be this way?
Lines like “During medical school, I had not been trained to care for people with disabilities” amaze me. The US system is so obviously a disaster. The US may have the biggest, most expensive disaster of a medical system, but it’s not the only one.
The fact that medical centers are not equipped to treat people who use wheelchairs, a fact I find cynically hilarious, begs the question of who medical centers are equipped to treat. And the answer is: no one. It’s not a nice experience for patients and their families. It’s not a nice experience for treatment providers. It’s not a nice experience for support staff. Yet it continues the way it is, resistant to improvement.
Treatments designed to save a life are provided in a way that debase the recipient of this care. Doctors aren’t prepared to treat people with chronic conditions or disabilities. Hospitals are built as if no one considered the need to push stretchers around their tight corners…or needed to sleep in order to stay alive. It would be simple to make treatment centers wheelchair accessible compared to the changes that would be necessary to create an environment that could be navigated by people with even the most common categories of neurodiversity.
I think of all the people who have dedicated their lives to discovering cures, providing treatment, and expanding access. Yet we do not have systems that meet the needs of the majority of the people they serve. The US system arguably doesn’t meet anyone’s needs.
What’s going on here? Are people out there who are opposed to providing medical care? Are we simply too unfamiliar with the process of consensus building to make progress? Is there progress being made that’s difficult to see because of how far we have to go? Are we stalled because of the layers of corporate entities, where it’s not clear who has the authority to change things?
A glimpse into a community that values creating accessible spaces.
Joy Johnson investigates how chatGPT can be helpful for caregivers.
Marriage is not a replacement for the social safety net.
Questioning who has the power to decide how to fix us and how they got that power.
On the exploitation behind our access to blood and plasma.
Courtney Martin on the invisibility of care work:
“is our challenge at honoring it in the public realm really about how profoundly vulnerable it makes us feel? When I think about how much my parents poured into me, I feel terrifically grateful and incapable of expressing that gratitude in any adequate way—like staring at a bright light; I just need to look away. If I hadn’t had that care, if I’d craved that care, if there was a part of me that would never feel full because of its absence, I can also imagine I would not want to talk publicly about family leave policy or fair pay for in-home healthcare workers or the myriad other things that somewhere in my subconscious would link back to my craving.”