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Friday, September 28, 2012

Regarding the Word "Dwarf"

The Fundación Alpe site has so many great resources in Spanish about achondroplasia. It has four main categories: Social, Médica, Educativa, y Voces (social, medical, educational, and voices). The description for this last category reads: "To be heard and to listen with attention to others, to those that have lived and thought about subjects that are important to us. Communication is the path to attempting to give some sense to the infinity of experiences in which we live. Here, expressions of subjectivity, perspectives of the world." 
I have only begun to explore all the resources available on this site, but one of the first things that I read really stood out for me as a mother trying to determine what a diagnosis of hypochondroplasia will mean for my daughter's sense of self and her interactions with the world. The original and complete essay is here. It's called "Sobre la palabra" by Margarita Guinovart, who has since passed away. The first part talks about the word "dwarf," according to the dictionary definition and the portrayal of them in Snow White. This is my translation of the last part of Margarita's essay, and I agree with her completely:

“I don’t expect the general population to know every growth restriction by its specific name or to be in-the-know regarding all the health care aspects and other facets related to each case, that would be crazy. I have a great curiosity for almost everything and, logically, I don’t know many illnesses, genetic mutations and deformities that drive many families crazy with worry. We can’t know everything.

My family and my closest friends are familiar with and know very well a large quantity of information of this sort. We are all very familiar with the word “achondroplasia,” but I admit that it is difficult to grasp. When we have to talk to someone outside of this “world,” of course we never say that Marina has achondroplasia. She is, simply, a dwarf. When someone requests more information, that’s the time to explain, to teach, and to bore, if necessary. But not everyone is willing, and we can’t expect them to be.

Perhaps I am excessively conformist, but it’s enough for me that people in general, the people that we pass by on the street each day, don’t get alarmed when they see that Marina is a dwarf. As pretty as any other girl her age, as smart as the others, as capable of becoming a marvelous adult human as any one else, although she’s 'tiny for her species' or 'of extraordinary smallness.'

What I want for my daughter is not that no one calls her 'dwarf,' but rather that this is only a description, like 'blonde' or 'big girl.' But to judge her in her totality, as a person, rather than only for her appearance… This I am ready to demand. I am ready to fight like a she-wolf for that. I’ll do it heart and soul for Marina, who is a dwarf, and for the “blonde” and for the “big girl.”


2 comments:

  1. Being an adult I truly feel that people should be judged on their actions and how they are as people then by their looks. I just want my daughter to be happy and live her life to the fullest. I pray that people except her and love her for who she is.

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