|Dar and Leandra Nez. New Mexico. Credit: PBS|
I don't remember what I was looking for when I stumbled on the documentary, Sun Kissed, broadcast as an episode of PBS' POV. But once I started watching it, I was transfixed by the openness of parents Yolanda and Dorey, the care in which the two filmmakers presented their story, and how tightly woven were history, science, culture, and religion in creating a family tragedy.
You can watch the documentary in its entirety here.
When a Navajo couple discovers their children have a disorder that makes exposure to sunlight fatal, they also learn their reservation is a hotbed for this rare genetic disease. Why? Sun Kissed follows Dorey and Yolanda Nez as they confront cultural taboos, tribal history and their own unconventional choices to learn the shocking truth: The consequences of the Navajos’ Long Walk — their forced relocation by the U.S. military in 1864 — are far from over. A co-production of ITVS, with funding provided by the Corporation for Public Broadcasting. A co-presentation with Native American Public Telecommunications.
I don't think there's anything of value I can add to the summary above other than to remark on the (cliche alert!) hauntingly beautiful song that plays when Yolanda and Dorey's little girl is being buried: Water, the Rain and the Oceans of Time, by Louie Gonnie.
Big issues raised in documentary
The Long Walk
The Long Walk, circa 1864, during which the U.S. Army forced thousands of Navajo into what was, for all intents and purposes, a concentration camp in Bosque Redondo (later called Fort Sumner) in which the Navajo remained until 1868. (Mescalero Apache were also forced here.)
Navajo death taboo
June 3, 1993, Daily News article: Mystery Disease Complicated by Navajo Taboos (not connected with the genetic disorder that Dorey and Yolanda's children had)
January 23, 2011 New York Times article: With Poem, Broaching the Topic of Death
Explanation: "... events like earthquakes, flood, fire and drought or human activities can reduce the size of populations. Such events are able to reduce the variation in the gene pool of a population drastically. ... Due to the smaller population size after a bottleneck event, the chance of inbreeding and genetic homogeneity increases and unfavoured alleles can accumulate."
It's believed the concentration of the XP disorder among Navajos is a result of the genetic bottleneck that was a result of the Long Walk.
The documentary doesn't go into this much detail, but there were actually two genetic bottlenecks related to the Long Walk.
One occurred at Fort Sumner, where so many Navajos sequestered there died of illness, starvation, or exposure. Not to mention the number of infants not born because the mothers had insufficient physical reserves to support their development and healthy birth. The deaths left a reduced population, and therefore, a reduced gene pool
The other bottleneck occurred when about 1000 Navajos eluded capture by the U.S. Army - they ran to and area so remote that it was effectively inaccessible well into the 1960s. These Navajos comprise the genetic source of much of the "western reservation" of Navajos.
When the Long Walk Navajos returned to their lands, they tended to settle in the "eastern reservation," thus the two bottleneck groups tended not to intermarry.
A common reaction to a drastic population reduction is an explosive birth rate following the reduction event. This has the effect of rapidly deploying the otherwise-recessive alleles that cause genetic disorders. The Navajo experience was no different following the two bottlenecks.
Chapter 8, When Genes Belong to Groups and Not Individuals, in the book DNA: Promise and Peril, by Linda McCabe and Edward McCabe, tells a dramatic story of the Navajo migration from Alaska, the two bottlenecks in the 1860s, and tribal sovereignty over the tribal members' genes and how all impact Navajo health today.
"Dip and ship"
The documentary didn't use the phrase "dip and ship," but it refers to a Mormon program in which Navajo kids were baptized ("dipped") and then placed ("shipped") in an anglo Mormon foster family to go to school and, in theory, enjoy some advantages they might not otherwise enjoy if they remained with their own families on the reservation.
I'd assumed the old Indian-kids-sent-to-boarding-schools era, in which the government strived to "civilize" them, was over completely. So I was pretty shocked to hear about this Mormon program.
In the documentary, Yolanda Nez, the children's mom, lived for several years with an anglo Mormon family in Utah. For her, it was a good experience, but with the cost of losing out on Navajo fluency, in both language and cultural contexts.
This Mormon website offers a brief summary of its proselytizing activities in the Navajo Nation.
As it turns out, Anglo Mormons, Navajos, and Hopi have a complicated relationship that goes back to when the Mormons ventured out west - sometimes peaceful, sometimes hostile, often tense. I haven't read all of this paper yet, but it purports to look at the relationship and, specifically, the history of Tuba City, Arizona, with new information that takes into account oral history from Navajo and Hopi reporters.
I'm still processing all of the factors that contributed to the slow death of Yolanda and Dorey's two children, Dar and Leandra.