The biggest horror with being in hospitals and rehab has nothing to do with the physical or staffing conditions, which in my case were excellent. Rather, using the bluntest possible terms, in an institution you lose control of your life. Being an academic with a flexible schedule may have made it worse, but this would have given any normal person fits.

Think about how many independent decisions you make in the course of a working day: what you have for breakfast, what kind of music to play, whether or not to even play music, when to eat dinner, should you go out for a meal, what clothes to wear. Lorenzo Wilson Milam, in CripZen, pointed out how, “We are trained, by ourselves, and by our society…to be fearlessly independent.”[1] Just about all of this is taken away from you when you’re in an institution of any sort. Everything in your life is dictated to you. This is, by the way, the exact opposite of the life of an academic, who has a lot more flexible time and a lot less structure than someone with a 9 to 5 job. I had gone from alpha to omega in terms of my life, and it was devastating.

Every morning, five days a week, for example, at roughly 8:30 am someone would come around and post your schedule of therapy sessions for the day. Soon after you would be awakened by the sounds of staff setting up for the day. At 9 was breakfast, whether you wanted it or not.

If you didn’t play ball, you paid a price. No, they didn’t beat you; this place was anything but bedlam. Rather it was spotlessly clean, caring, and enlightened. But my last roommate was an older—and somewhat curmudgeonly—gentleman. The first morning on the day after he had checked in, the occupational therapists showed up right after breakfast was served, to give him a bath.

This old coot had the temerity to ask them to come back later. You see he had this crazy idea that he liked to eat his breakfast when it was hot. In other words, he simply wanted to live his life the way he wanted it. Just like I had always done.

At the end of the day, he still hadn’t had been washed, despite repeated, almost endless requests from both him and me. They just couldn’t fit the revision into their timetable; that was when he had been scheduled for cleanup, and after that other patients were penciled in.

Now, compound that by… everything. Every aspect of your life determined by others. That is why when I read about institutionalization, even in nice facilities like the place I stayed, of disabled who want control over their lives, I go back into fits of despair. Nothing freaks me out like this. It is the ultimate nightmare, why life in an institution seems to be an episode from Kafka

Permit me an episode from American history during the Reconstruction era to illustrate my point. A Scottish minister, David Macrae, was interviewing a newly freed slave. Now Macrae was no slouch, and had done his homework, reading all the relevant abolitionist tracts.

Macrae approached the freedman and began asking questions: “How often did they whip you?”, he began. The new American citizen replied that he had never been whipped. Next, Macrae asked about food, there must have been starvation rations, he pointed out. No, came the answer, the portions, while hardly lavish, were still quite adequate.

And so it went, query after query. Finally, frustrated, Macrae blurted out, “How were you cruelly treated then?” The answer was simple, yet potent: “I was cruelly treated, because I was kept in slavery.”[2]

I don’t want to push the analogy too far; being in an institution of the sort I was in is absolutely nothing like being held in bondage. Yet, the point remains. In both situations, mine and the slave’s in this story, the worst part was not any physical torment, but the very fact that your existence is no longer under your own control. You have lost your life, with your sanity in jeopardy. That is why the thought of ever going back to such a place panics me, not at all because of the people or conditions, which were both quite good.

[1] Lorenzo Wilson Milam, CripZen (Dan Diego: MHO & MHO Works, 1993), p. 104.

[2] Eric Foner, Reconstruction: America’s Unfinished Revolution (New York: Harper & Row, 1988), p. 79.

This is the third post in the series “Bronx Accent” written by Bob Slayton

150pxRobert A. Slayton grew up in the Bronx and is now a professor of history at Chapman University and the author of seven books, including Empire Statesman: The Rise and Redemption of Al Smith.  In 2008 he came down with transverse myelitis and returned to an active teaching and writing career. Slayton has been married to his wife, Rita, for 32 years.  These pieces are excerpts from a memoir of the disability experience he is working on.