Introduction: Summary & Criticism
Testing Woman, Testing the Fetus
Rayna Rapp is a white, middle-class, educated women who terminated her fetus, XYLO, upon a prenatal diagnosis of Down’s syndrome. Her pain and confusion upon making the decision resulted in a series of interviews, discussions, and research on amniocentesis, abortion, and their effects on women of various backgrounds. Testing Women, Testing the Fetus is the encapsulation of the analysis and discussion of these topics and other concerns which arise from them, such as health education, representation and rights of the disabled, feminism, intersectionality, morality, and more.
The Burden of Knowledge
The Burden of Knowledge focuses less on all the factors that come with amniocentesis, but similarly discusses the testing with a majority of white, middle-class women. I did not find as much value with the film as I did with the book, if anything it was valuable in that it visualized and thus somewhat personalized the main topics discussed in both works. The film leaned towards a pro-choice argument more than the book, though not to an extreme.
Criticisms
Rapp addresses in her methodology that because she is white and of upper standing, there were likely communication and analyzation errors in her interviews with women of color or women of lower economic status than her. She includes her interviews with such women throughout the book, which is valuable, but I wonder how the conversations would have been if a woman of color who dealt with issues of termination had conducted those interviews. From experience and from classes I’ve taken on interviewing and oral history, when an interviewer has a similar social background as the interviewee, more sensitive conversation can be had. I believe more reasoning behind these women’s thinking could have been discovered. Otherwise, I think her book is well-established and pieced together.
Both Testing Women, Testing the Fetus and The Burden of Knowledge lack direct perspective from disabled people. Both works would have been enriched by the voices of those of whom their talking about. I think it would have been interesting to hear from disabled people of different backgrounds (racial/ethnic, economic, etc.), because their views of themselves and how they can speak to their own experiences in society would have given these works more believable (in my opinion) and realistic information to go off of. And their viewpoints could go either way, since I understand neither work was trying to guide the audience to a polarized conclusion.
Religion and Amniocentesis
I wanted to address this first, because I found it interesting that both in the book and film, religion is not a primary basis in their discussion of amniocentesis. This brought me back to what was said last class, that the ethics of abortion should not and is not religion vs. secular. Near the end of the book, Rapp affirms this myth of having to be pro-choice and religious: “Catholic women obtain about 32 percent of all abortions in the United States… somewhat higher than their representation in the population at large” (Rapp, 252). And again: “Mental retardation constitutes a deep threat to family and lineage [in Jewish communities]. Jewish families give up Down syndrome babies for adoption at what appear to be high rates” (Rapp, 284). She goes on to speak on how the Jewish community stresses high achievement, and doesn’t mention the history of eugenics against the Jewish community which may also be a factor. I found both of these facts interesting, and she interpreted them and her interviews with Jewish mothers from an etic perspective, so again, I do wish more of the reasoning had come from an emic view.
Government and Parent’s Involvement in “Playing God”
Throughout this class I have been thinking about government involvement in abortion and reproductive technology. There are several mentions in the film of the right to amniocentesis and whether it is encouraging people to “play god”. On one hand, one of the interviewees said, “I would be insulted not to have that test. [Doctors are saying:] We’ll do what’s best for you.” This is going for the viewpoint that the testing should exist, so that people have the right to know or not. This gets more political in that revoking people of that decision is giving power to the government. And then there is, “you’ve created anxiety by offering the test” and that “man is wrestling control with god”. I find that second statement of “wrestling with god” interesting because it implies that god only plans for what is natural and not what is technological. But besides that, I agree with the woman who said that decisions in life are meant to be uncomfortable and there are too many factors to simplify things down to what’s within human control. I say all this just to conclude that I believe that looking at who has control in the situation is not useful to the conversation. This is because, I believe what’s more important is who it affects.
Conclusion
Overall, I believe that amniocentesis should exist and that people should have the right to choose whether or not they wish to be tested. I do think that there is more behind the conversation and research about the topic that is not covered with these works, like deeply and properly investigating women with lower societal status and their opinions and experiences. And getting the perspective of this disabled.