I have a tracheostomy and use a ventilator to breathe at night. It works well for me, and I have no regrets, but every couple of years, I wind up in the hospital with some kind of upper respiratory infection. As Congress tinkers with health insurance like a Jenga player on six espressos, a recent stay in the hospital for a nasty but manageable bronchitis led me to think about the various awkward personal experiences of actual health care when you’re disabled.
Most of us can remember times when a doctor or nurse acted like they didn’t believe us. Sideways looks and prying, investigative questions often suggest that the medical profession regards patients with disabilities as vaguely compromised.
While I have never had a doctor or nurse directly doubt or contradict me, medical professionals often talk to my family or friends instead of me to gather information when I’m sitting right there. That’s why I prefer to meet with my doctors alone.
Lately, this type of ableism has gotten better, with medical professionals looking to me for guidance on treatment, especially when it relates to my disabilities. In the hospital last month, I never once felt like my word, competence, or intelligence were doubted. That’s a big improvement.
Weird stuff still happens though:
- A nurse’s aide taking my blood pressure jokes, “Your arm is so thin, I could break it!”
- I ask a nurse to take my tracheostomy tube over to the sink and clean the gunk out of it. He hems and haws, finally says he’s not allowed to mess with it, and will call Respiratory to do it instead.
- A discharge planner wants to know whether I drive, if I live alone, and who helps me take care of my ventilator.
The social justice term for these is “microaggressions,” the kind of small humiliations that don’t do much harm on their own, but over time can poison even the most resilient souls. You could also call it “amateurism,” a mix of passive ableism, thoughtlessness, and inexperience.