9/9/26 - Monthly Essay: "Random notes: In the hospital, with a disability"

Random notes: In the hospital, with a disability

Andrew Pulrang, Disability Thinking Weekday - September 9, 2026

Sometimes, the Disability Thinking Weekday Monthly Essay is going to be a little undercooked. Sometimes, I’ll want to dump some of my thoughts about a thing, but won’t have the time or energy to organize them into a coherent argument or completed idea. This is one of those times. These are my “random notes” upon getting out of a long hospital stay as a disabled person.

Somewhat frequent flyer

I’ve been an inpatient literally scores of times in my life. Most recently, I was in my local hospital for just short of 25 days.

My local hospital

It’s a medium-sized hospital that’s the leading facility serving a wide rural area of Northeastern New York State. It has a long history of gradual growth and local control, until joining the neighboring University of Vermont Medical network. It still has a very local flavor. And at times I can still feel a bit of the atmosphere I remember from when I was there as a child, and when my father was treating patients there as a pediatrician. I can even remember being sick there in my early 20s when there were staff who had worked with my father, and later, when that sort of connection was entirely gone.

First off

I think we all have in mind a sort of horror story where paramedics all but freak out when they come to get you, seeing a bunch of gnarly disabilities they didn’t anticipate and having no clue how to figure out why you need an ambulance ride today, and how to sort your disabilities from your actual emergency. In my experience that still feels like it could happen, but so far never has. EMTs I have encountered have all been unflappable, respectful, and seem to have no trouble putting my disability conditions in reasonable context.

If you are stuck waiting for hours in distress in the Emergency Department, don’t be afraid to groan and make some noise. But unless you are truly in immediate danger, don’t try to force attention to yourself. It can be very tempting to crash out in a big, splashy way. But later on you will probably look back and realize the situation wasn’t as bad as it seemed.

Strategies and observations

Point out as soon as you can the differences between your underlying disabilities and your acute illness, or why you are there today.

Watch and listen for "red flags” — which often amount to more or less common ableist feelings and ideas about disabled people, pushed to extremes. For example:

• Excessive admiration for your bravery, or deep suspicion that you are faking things.
• Repeated mention of “options” for stopping treatment or assisted suicide.
• Quickly defaulting to inpatient rehab or other facility care as a means of speedy discharge.

Listen also for medical advice that may act first seem ignorant or even ableist, but might actually work well for you.

If you come across a doctor who seems especially perceptive and in sync with how you think about your disability and other conditions, make the most of it. Explain yourself further and ask them for some extra advocacy if you feel you need it.

If you possibly can, bring with you any devices you use to communicate entertain yourself, and work. For example, smartphone, laptop, adaptive tools, and personal self-care items that work best for you. If you can’t bring them with you, try to get family or a friend to bring them to you.

Hold onto your smartphone except when setting it aside is absolutely necessary. Hand it over when you’re getting an x-ray or CT scan, but ask for it back immediately afterwards.

Be as relentlessly nice as you can to all hospital staff. Especially if you tend to feel solidarity with underpaid, overworked workers in other walks of life, remember that nurses, aides, therapists, technicians, and other hospital staff are workers who as a group deserve your respect and support, at least as a group.

Don’t expect quick response from nurses and aides during a shift change. One of the worst things about my hospital is that they bring in the breakfast trays during the morning shift change, so there’s basically nobody to help you get up and eat if you can’t do it for yourself. On the other hand, a bit alter on they will probably be happy to reheat things and give you a genuinely boiling cup of water for your tea.

It can be hard to practice and reestablish the self-care and disability-adaptive routines you use at home in a hospital room. This can leave you more dependent than you may actually be, making it hard to figure out whether or not you actually are well enough to go home.

It’s okay to resist being sent home too soon or with inadequate preparation. If you are straight and calm with them why you feel you’re not ready, they are more likely to accommodate you, even if that includes a day or two extra after they wanted to release you.

Privilege

I've got privilege – or, if that word is too buzzy and politicized for you, let's say social advantage – and that helps in hospitals. I'm a middle aged, white, heterosexual, cis male. I have lived most of my life in this town, and some people still recognize me from my work and family ties. I can speak in most situations, and come across as organized and rational, even when I'm extremely sick. I'm good at advocating for myself. Being calm and polite still generally works for me. I rarely have to take the risk of showing urgency or anger in order to be heard.

On the other hand, I'm on Medicaid and Medicare. I'm on the older end of middle age, approaching "elderly" when a certain kind of invisibility and eye-rolling starts to creep in. And I'm visibly disabled, which is always a mixed benefit and liability, no matter who you are or what your background is. I'm starting to feel like the negatives on my own particular privilege scale are just starting to outweigh the positives.

One more thing

Warmed blankets are the best innovation in hospitals in decades.

That’s all I’ve got for this last stay. What have you all learned from your time in hospitals? Share your experiences by emailing me at: apulrang@icloud.com.

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