Science and the Dark Ages

Yesterday, in a meeting of autism researchers I attended, a researcher described people with Retts as having "no souls." That Retts "takes the souls" of girls. The researcher said this without malice; in fact, I had the strong sense that he felt this description was in some way compassionate. When it was recommended to him by another researcher who does a lot of work directly in collaboration with the disability community (not me though I was sure thinking it) that he might want to meet some real girls with Retts to see that they do, in fact, have souls, he related how meeting the father of someone with Retts is what inspired him in his mission to return these girls' souls.

Relating this to a friend later, my friend asked, "did he really mean that literally, like a religious thing?"

I've no way to know for sure of course, but my suspicion is that it wasn't a religious thing; that the word "soul" was more likely being used as a synonym for "personhood" or "humanity" or "that which makes a person a person."

The mix of souls with science harkens back to the ages before a separation between the mystical and the scientific. But there's a more recent dark ages involving lack of understanding, inclusion, or respect for people with disabilities in discourse about their own lives. Of viewing people with disabilities as broken things, and not as human beings.

While the Renaissance may be here, we're still not fully out of those dark ages, or else the term "soulless" would be as abhorrent when applied to someone with Retts as it currently is applied to someone from a minority racial or ethnic background.

Increased direct involvement of the disability community in research is one way to start lighting this darkness; however, it's hard to motivate people to become involved when they are labeled in disparaging ways like "soulless." I know I certainly wouldn't participate in any sort of research--not as a participant and not as a colleague--from someone who feels that Retts "steals souls." Something else, or more, or just different may be required to bootstrap some segments of the research community into a more modern paradigm.