Friday, July 21, 2017

New collection: Crohn's support groups of yore

by Rachel Fellman 

Crohn's-Colitis Chronicle, from collection 2017-005
We are all archivists, though some of our collections are more organized than others. This is an important concept to hold onto if we’re ever tempted to think of archives as a rarefied job practiced only by serious people in dust masks. Librarians and archivists do take our work seriously, and we do wear dust masks on especially awesome days, but what we do is only the professional side of a universal practice: organizing the records and artifacts that make up our stories.

I was thinking about this as I processed my first collection today. It came to us as a small (0.25 linear feet) binder of information about Crohn’s disease, collected by the donor over a thirty-year period, with the majority dating from the eighties and nineties. There are folders of national and local newsletters, newspaper clippings, articles, and pamphlets.

The binder is like a personal medical textbook, the ephemera of many years of living with a painful and unglamorous illness. But it also provides many fragments of intriguing medical history. How did support groups see and present themselves in the early eighties, when a community of the sick was still a new idea? How did people in the local groups feel about their illness, and what attitudes did they urge on each other? How did they use the local and national organizations to advocate and bond? (The various newsletters include both member profiles and personal ads.) How did '80s and '90s doctors explain Crohn’s to newly diagnosed adults and teenagers, and how did they counter assumptions that it was psychosomatic? (One pamphlet even explains that “this brochure can be offered as a reference when friends and colleagues seem to think that ileitis or colitis are caused by being 'overly emotional'”).

It’s easy to let the less concrete parts of history disappear. A person born in 1990 would be only 27 today, and yet that world still seems very distant – especially the parts about how people talked to each other outside the world of books and glossy magazines. A lot of that is locked up in memory, which is notoriously unreliable and prone to overwriting. With collections like this, we can take a more accurate look at how people felt about illness before the Internet, and we’re grateful to our donor for maintaining it for all that time.

You can read the full finding aid for this collection here (via Archives West).

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