American historian and author, William Loren Katz, who has written extensively on the histories of both African Americans and Native Americans, has observed, “If you believe people have no history worth mentioning, it is easy to believe they have no humanity worth defending.”
While he was speaking of the importance of knowing the histories of non-Europeans in this country, his words have proven to be disastrously true for people with intellectual and developmental disabilities as well.
As communities of faith begin to open their doors to those whom they often understand to be somewhat unlike themselves, it might be helpful to know a bit of history. Because, if it looks as though there is something of a disconnect between those with and without disabilities, a certain struggle to find common ground, it may be something more than simply a perceived skill deficit. It may indeed be due at least in part to the weight of the story that people with developmental disabilities are bringing with them.
Eugenics and Institutionalization
This is a people who, in the 20th Century alone, faced the tide of the Eugenics movement which, bolstered by no less than a supreme court decision, turned their very bodies over to the state for compulsory sterilization; then, fewer than 20 years later, were the first victims of the Holocaust through Germany’s Aktion T-4 program that resulted in the extermination of over 200,000 people with disabilities. The official Nazi designation for them was “Lebensunwertes Leben”; in English, “life unworthy of life”.
In the 1960s, institutions for people with developmental disabilities hit their maximum population in the US and conditions were, in many cases, deplorable. Burton Blatt’s 1965 book Christmas in Purgatory, provided a shocking revelation of the conditions in several state-run facilities. While the years since then have seen a steady decline in institutions, their legacy of separation persists to this day. In spite of our awareness of history and our commitment to justice and equality, we always seem ready to believe that people with disabilities are something other than us. Playing by different rules. Regarded with different values.
The 21st Century Disconnect
These are not ancient stories with limited relevance to our 21st Century thinking. The well-established pattern continues. Torture in the guise of behavior management continues at the Judge Rotenberg Center in Massachusetts, waiting only for a government agency to decide that a device, unthinkable in any other environment in the US, should not be used to inflict intentional pain and suffering on people with disabilities at this facility. The FDA has been deliberating the question for more than four years; meanwhile, the torture goes on.
Meanwhile, quiet citizen petitions (largely unsuccessful) continue the nagging mythology that people with disabilities will somehow make the rest of us unsafe in our neighborhoods when, in fact, they are much more likely to be victims than perpetrators. Quieter still, prenatal testing is steadily providing the information many will use to stop the birth of people with certain genetic characteristics all together.
If faith communities are to place themselves in a position of advocacy – to literally defend the humanity of their fellow believers – we may do well to gain a greater understanding and sensitivity to the burden of their “history worth mentioning.”