I am home again after just shy of a week in the hospital being treated for pneumonia. Aside from having to go in the first place, things could not have gone better for me. Of course, being in my own place again is bliss.
I have been an inpatient at my local hospital I think 5 times now since I moved back to my hometown in 1991. Roughly speaking, each stay has been an improvement on the last in terms of how they dealt with my disabilities. Like all hospitals, there are bureaucratic absurdities and staff that just don’t get it. But for me at least, things have gotten steadily better. Maybe the best thing about this is that when I am very sick, I don’t hesitate to seek full-on treatment out of fear of just being in the hospital. Unfortunately, I have known many disabled people who can’t say this.
If I had to choose one factor that can either make or break how hospital staff deal with patients who have long-term disabilities, I would pick flexibility.
More recently trained providers seem to have an easier time reconciling their need to follow procedures with our need to do things differently due to our disability and self-care routines. The very best mesh the two so smoothly that you don’t notice any conflict at all. These are also the ones who have a knack for introducing new ideas for our better health going forward, without making us feel threatened or criticized.
My experience this week was that by far most of the staff at this hospital are flexible in this critical way. A few of them seemed uncomfortable with the words, phrases, and tones that had been carefully drilled into them. A collaborative approach seemed uncomfortable to them. That’s okay, it doesn’t have to be perfect. In any case, I’d say 75% of the nurses, doctors, and technicians who treated me had no trouble being in charge in the best way medically, while never treating me like a subordinate or worse, a failure for being there.
Flexibility, the willingness to see and do things differently, allows hospitals to offer the best of both worlds to disabled patients. They provide safe, expert, authoritative treatment and advice for acute illness that is beyond us, in an environment that does not rob us of our hard-won independence and agency.
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