From the first few chapters the connection between this book and some of our other readings and discussions was apparent. We earlier discussed the need and importance for consent of the patients in the context of sterilization, vaccinations, and genital "corrective" surgery of intersex patients. In all these areas I think we as a class came to the consensus that it was imperative that the doctors contain consent, but it was also further discussed, that simply signing a consent form isn't really enough. Especially in the case of sterilization the idea of informed consent was brought up a number of times. The woman, or the husbands more often than not, may have given consent to have "la operacion," but that was not an indication that they fully understood what that meant. In the video we watched, many women were interviewed that said that they were never told by anyone, including the doctors, that this operation was a permanent procedure. Giving consent and truly understanding what is being done and all the consequences of that are two very different things. I saw a parallel to this within the first chapter of The Spirit Catches You and You Fall Down by Anne Fadiman.
In this case, Foua and Nao Kao Lee, were not aware of what was going on within the hospital, although they filled out the necessary forms and signed in all the right places. The situation here is slightly different; unlike the example of sterilization, the issue isn't a social or political demand for a procedure, at the cost of informed consent, it's a language issue. However, the parent of Lia Lee were also unable to make an informed consent. They spoke no English and the doctors spoke no Hmong, there is no way that Foua understood the forms that she was signing. This point is clearly stated throughout the first chapters of the book. After Lia Lee was released from the hospital her mother had to sign a from and "since Foua cannot read and has never learned to recognize Arabic numerals, it is unlikely that she followed these instructions. However, she had been asked for her signature so often in the United States that she had masterd the capital form of the seven different letters contained in her name, Foua Yang." (8). It's obvious that there is no way Foua Yang could have given informed consent on any of the hospital forms.
The question that arises out of this situation is whose responsibility is it to make sure that a language barrier doesn't create this issue? Should it be the responsibility of the patients to make sure they fully understand what they are signing, or is it up to the hospitals to be sure that everyone makes an informed decision? I would think that it's the responsibility of the hospitals to not proceed without informed consent. Then the issue comes up of should the hospitals be obligated to have a translator for every language. This, I believe, directly connects with another very controversial issue, should immigrants have to learn English?
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I like that in this reading you find the idea of consent and not only that of cultural barriers. I think that is something that comes up again many times in the book. Fadiman especially likes to show both sides of understanding an event, like later when they transfer Lia to a hospital in fresno and the Lees believe it's because their doctor was going on vacation. These illustrations that Fadiman provides serve to prove just how great the misunderstanding was throughout the process. We're not talking about one mistake in consent anymore or one big lie, but rather a whole experience, a human life, affected by miscommunication and consent. I think it's important to note that with each step or episode in the trajectory of Lia's illness, Fadima mentions the misunderstanding and the issue of consent. If she was writing with a different purpose she would have simply assumed we knew that Nao Kao was signing without understanding, but she makes a point to let the reader know every single time.
As for the question you end with- you may want to reconsider that line about every minority just wants to be left alone as well as that scene in which Foua laments her uselessness in the states. It seems that Fadima's point in this book is not simply to talk about Lia's experience and the medical paradigm, but about immigration vs. refuge as well as she spends a latter part of the book concentrating on the Lee's and the Hmongs' journey.
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