Aniridia is so rare that you will probably never find it mentioned in the dictionary. Before the Internet, it was hard find the subject even in a more specialized medical book. Still, Marie Godbout of the Telegraph Journal heard about the phenomenon in the 1980s, and an article written by her was published in that paper in 1983, concentrating mostly on the point of view of Edwina Lynch, an itinerant teacher at the time.
According to the article, about 35 people with aniridia lived in the area at the time and the condition had been around for generations. Lynch points out that she works with a very different clientele than elsewhere in the province, and perhaps the entire continent. During training sessions in Connecticut, she learned that other teachers had heard of aniridia but had never actually worked with anyone who had the condition.
A visual impairment makes it harder to read printed text (as opposed to Braille), take notes with a pen or pencil and answer questions printed on a written exam. All the same, Lynch said that for some students, the visual impairment exacerbated other learning difficulties. She adds that their social status doesn’t help, with many living on welfare and a great number feeling out of place when not among their own families. Lynch adds they often choose as spouses people with whom they are already related to some degree. At school, though, she assures us that the young children are well accepted by their peers who don‘t have aniridia.
It‘s unfortunate the reporter never bothered asking a student his or her opinion about how well they are accepted by their peers. She might have wound up with something completely different for her article. It‘s true that many of these people could not find stable employment, a situation already brought to light in the 1960 study. Furthermore, these people lived, for the most part, in what was known for many years as the "ghetto" of Grand Falls, an area called the "Park".
That said, other statements in the article should be checked more closely. For instance, the part about intermarrying within the extended family is rather inaccurate. Anyone doing genealogical research in Grand Falls will know that, like elsewhere in Acadia, everyone eventually becomes related to everyone else at some point if the number of inhabitants is relatively small, and this becomes even more noticeable when dealing with hereditary diseases and conditions. As traveling and transportation become easier, we see more and more young people marrying people from outside Grand Falls, and even outside of the Madawaska region. This fact must be emphasized.
As for some people being slower at learning, Suzanne Lajoie, perhaps the first member of this family to undertake university studies despite having aniridia, believes many with aniridia were underestimated at school. Better learning aids and teaching that was better adapted to their needs might have made a bigger difference.
Looking back with today‘s knowledge, the most striking example is the absence of teaching Braille. For some reason, it was decided that anyone with at least partial vision should learn to read printed material only, no matter what. The so-called experts should have known these people would eventually lose so much sight that Braille would eventually become their only option, yet there seemed to be a type of phobia concerning Braille. Apparently, some people thought learning Braille would lead to loss of vision. As a result, by the year 2000, young adults in their 30s and 40s who would need Braille did not know how to read and write this way.
Another more factual observation brought out in the Telegraph Journal article and which is also borne out in the 1960 study is the way these people accept the circumstances in which they live. These people simply take whatever life brings them. Having aniridia is unfortunate, but it is a hereditary condition and no longer surprises anyone. As for other facts of life, many deaths of young children are recorded due to the expense of healthcare before the advent of Medicare. To them, this was simply part of life. Contributing to the prevalence of aniridia was the great pride French Canadians had in raising large families. Only in more recent generations have people with aniridia started limiting the number of children they have, perhaps due to better education and awareness, especially where a family may already have one child with aniridia.
