Special children are not just interesting medical problems, subjects of grants and research. Nor should they be called burdens to their families and communities. They are children who need our help, and if we allow them to, they will teach us compassion. They are children who need our help, and if we allow them to, they will teach us love. If we come to know these children as we should, they will make us better scientists, better physicians, and thoughtful people. ~ D. Holmes Morton
There were two plenary sessions, back-to-back that ended the conference on Saturday morning. The first one called Plain People, Genomics, and the Art of Transitional Medicine presented by Dr. Holmes Morton, co-founder of Clinic for Special Children in Strasburg, Pennsylvania. You can find out more about Dr. Morton’s work with the plain communities by following the link.
I have heard Dr. Morton speak on a few occasions and I am always heartened by his expertise and compassion and his commitment to helping the Plain People (Amish and Old Order Mennonites) in Pennsylvania (and beyond) treat and cope with genetic diseases. Other clinics have opened and have been able to use the knowledge base Dr. Morton and his group have developed.
Dr. Morton is now developing another center called “Central Pennsylvania Clinic for Special Children and Adults in Kish Valley (also known as The Big Valley). As fate would have it, the land they plan to build this clinic on once belonged to Amish scholar John Hostetler, who grew up Amish in that community.
Dr. Morton has been asked how people are going to afford this clinic. Dr. Morton answered that question with several stories of how their work has benefited the children and families they serve, and each time he responded with, “We can’t afford not to.”
I cannot possibly do Dr. Morton’s talk justice in terms of the diseases he and his team diagnose and treat. You can hear him speak by following this link.
When I first learned about the “founder effect” and “genetic drift” in the Plain groups from one of Dr. Morton’s associates, it seemed to me that Amish people are on a collision course with their own genetics. I felt like someone needed to make them understand that they need new blood if they are to survive as a people and a culture and that Dr. Morton was in a good position to convey his understanding to them. However, that is not what he is about. He does not judge the Plain People for their way of life. He sees his role as that of someone who will provide them with infant screening, diagnoses, and treatment whenever possible. He also recognizes that they are generally more accepting of illness, suffering, and death than people in the mainstream population. I realize now that he would not have been effective in his work, had he tried to convince them they needed to change their ways.
Dr. Morton earned several distinguished awards: the Albert Schweitzer Prize for Humanitarianism in 1993 and was named one of Time Magazine‘s “Heroes of Medicine” in 1997. In 2006 he was awarded a MacArthur Foundation “genius grant” for his work. I would say they are well-deserved. Dr. Morton is not only wise in the field of genetics, but he is also wise in the ways of humanitarianism. The families who work with him are so fortunate to have an advocate for their special children.
Young Center for Anabaptist and Pietist Studies, Elizabethtown College
Last, but not least, I turn my attention to the last session of the conference called Worms in the Amish Software: Coping with Risk in a Cyber World by Dr. Donald Kraybill, Senior Fellow at the Young Center for Anabaptist and Pietist Studies at Elizabethtown College. He took the audience through the various steps of the Amish negotiating modernity, starting with when they first faced issues with modernity with the advent of the telephone, and then on to when they had to deal with decision regarding automobiles, electricity, and tractors. This was all background for his topic of how Smart Phones are undermining the Amish way of life. He said that the Amish have always considered themselves separate from the world, and yet when they have a Smart Phone on them, they are “carrying the world around in their pockets.” He also made the point that the Smart Phone is insidious, partly because people don’t know whether or not someone is carrying one. He said, “I could have one in my pocket right now, but you wouldn’t know it.”
Donald Kraybill went on to suggest that Amish leaders get together to deal with this issue — perhaps they could adopt the Mennonite Conference-type structure so there would be a critical mass of Amish people trying to deal with the issue, rather than each bishop dealing with it from one church district to another.
At some point Kraybill said that we, the audience, might be thinking that he is just a crotchety old man who doesn’t want to lose his research subjects, but he stressed how much he felt this technology was undermining the Amish culture.
When Kraybill asked for audience questions, he had quite a few people walk up to the microphone. One person said he would like to play the devil’s advocate and suggest that the Smart Phone might bring about changes in the culture similar to those brought about by the printing press. An animated Kraybill said, “No, it is not the same. If you have a phone in your pocket, it vibrates, it buzzes, and it rings and you have to look at the darn thing!”
The audience member said he thought that it was similar in the sense that the ancestors of the Amish probably lost control over what they sons and daughters were reading with the advent of the printing press and how, at first, there were few controls over what was put into print.
Kraybill admitted it is similar in that regard, but he pointed out that if you want to read a book, you have to go to the bookshelf and pick up that book, whereas if you carry a Smart Phone, it is always with you and it demands your attention.
Another audience member asked for clarification that Donald was suggesting that the Amish adopt the Mennonite Conference style of deciding their Ordnung (church rules). Donald confirmed that it what he is suggesting. The audience member said he didn’t think it was a good idea to try to make Mennonites out of the Amish, and by the way, the Conference organization hasn’t worked very well for the Mennonites, either. Donald reiterated his feeling that the Amish needed to do this on a wider scale than on a district-by-district basis.
I think this audience member is right. I remember hearing in my teens about Diener Versammlungen (gathering of ministers) that was held by Amish leaders and how instead of creating unity, the ministers got hung up on their differences, which caused church splits. They soon learned not to do that anymore.
I had a nagging question, so I finally stepped up to the microphone and asked it. “Whether the bishops get together and decide to place a ban on Smart Phones on a regional basis, or by each district, how would one enforce such a thing? Because of the size of the Smart Phone, it can find its way into young people’s pockets pretty easily.”
Donald said that he doesn’t really know, but perhaps the men would have to go back to wearing no pockets on their pants, or perhaps when young people are baptized, they need to give up the Smart Phone.
I said, “But the phones can be hidden after baptism just as well as it can before baptism. And as you pointed out, it is addictive…”
Kraybill admitted that he did not have all the answers, and it was clear to me that we were running out of time. Otherwise I would have shared the story he told me back in 2006, when I was doing an internship with him. This was about regular cell phones before Smart Phones came along. An Amish man, who I will call John, had a cell phone on the sly. One evening, a church elder came to admonish him about that. While the elder was admonishing him, the cell phone rang in John’s pocket.
When I told that story to an Amish man, he thought for a moment and said, “Now, that would not be good.”
The lesson from this story is that even members of the Amish church will do things on the sly if they think they can get away with it.
My takeaway from this last session is that whatever rules the Amish come up with around the Smart Phones, it will have to come from within the community itself. We can have all kinds of opinions, but they will have to figure this out, just as they have in the past. I have confidence that the Amish are a resilient people, and that their culture will survive Smart Phones — perhaps better than they will survive changing their church structure.
Normally a conference will wind down at the end, but Kraybill’s talk revved up to end the conference with a bang.
I came away from the conference with lots of food for thought. I’m so glad I attended.
This concludes my series of reporting on the Amish Conference 2016. Now I look forward to attending another conference next summer at Eastern Mennonite University called Crossing the Line: Women of Anabaptist Traditions Encounter Borders and Boundaries.