I had an entirely different post planned. But, as often happens in my life, something else overshadowed it. In this case, it was a discussion that took place on a friend’s Facebook page about this book, in which an evangelical Christian man decided to spend a year living publicly as a gay man in order to reexamine his beliefs about homosexuality. In this case, the friend asked if going undercover in a marginalized community in order to better understand that community was a good or bad thing.
Most people responded that they thought it was a great way to “walk in somebody else’s shoes.” Another mutual friend who is African-American brought up the earlier book Black Like Me as a similar positive example for the African-American community.
The general consensus seemed to be that even though Kurek lied about his orientation, which may have hurt some people in the gay community, the end result of him realizing that gays were not sinners outweighed that. And that the gay community eventually forgave him, so that seemed to make it OK. One person even noted that such an experiment was “a gift” to the marginalized community because now they could be heard and understood.
I noted that such “social experiments” may be productive for those communities (I cannot say for certain, as I am not a member of either), but when you have a community that already has issues with being treated as lab rats or test subjects, it becomes much more tricky. My attempts to point this out were met with confusion, defensiveness, or outright attempts to explain to me why it was acceptable, regardless of what the Other might be.
Here’s the problem. People in chronic pain communities face constant disbelief from friends, family, and the entire health care system. For us, places where we can share our frustrations among each other and are not judged are a refuge from the constant barrage of being told it’s all in our head, it can’t be that bad, or that we are just drug addicts.
Some of us have been actual test subjects in real experiments. We have had to read IRB human subject testing statements and sign the accompanying consent forms. Being test subjects for an outsider to prove (or disprove) their theories is not a hypothetical for us. Nor does it necessarily end with hugs and forgiveness, a la Undercover Boss (a show I resolutely refuse to watch for precisely the reasons stated here).
There’s a great deal of very private things that get shared in the community. The notion of somebody else coming in, pretending to be a chronic pain patient, and hearing the sorts of things we would never tell our friends, families, or doctors, really is a betrayal. And at the end of the experiment, the infiltrator is not going to “reward” us by removing our pain (see above about Undercover Boss).
As a chronic pain patient, the very thought of somebody using me as a subject for their social experiment makes me furious. We are real people. We are not part of your experiment. We don’t need the benefit of your “gifts” (wow, patronizing much?). We are, as the title of this blog says, not your teachable moment.