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An Ethnographic Analysis of Mothers' Views on Down syndrome and personhoodNameInstitution affiliationCourseInstructorDate
Background Problem StatementA woman recently shared with me how physicians reassured her that she was carrying ahealthy fetus and that Down syndrome had not been detected throughout her pregnancy, only togive birth to a baby diagnosed with the disorder. The fact that she and her husband couldn't seetheir newborn for hours after she gave birth raised suspicions that something was wrong. Laterthat night, the physicians called to tell them that their daughter had Down syndrome and thatmore testing was necessary. My respondent stated that she was reduced to tears. She wasfrustrated with the medical staff for missing this vital piece of information during prenataltesting. Since no other testing turned up anything, she was not even given the option of having anamniocentesis. My participant had no idea what it meant to have a baby with DS, and sheexpressed confusion and anger. Despite stating that abortion would not be an option in her casebecause of the significant role religion played in her family's life, she admitted that she wasrelieved that she was not forced to make that decision. My respondent said they would have beenbetter prepared had they known about the fetus with DS earlier in the pregnancy. Aside from avisit from a couple whose kid has DS and who are members of the Down Syndrome Associationto describe what DS is and to share their experience, the family had gotten no institutional helpfor their situation. My subject conducted an independent study on Down syndrome. Myrespondent said she would never have aborted since she considered her embryo a living,breathing human being. Her expressions and voice inflections throughout the interview revealedshe was overcome with emotion as she described how her daughter's Down syndrome hadimpacted her family for the better.My personal experience with my own family and my professional background as afacilitator have made me aware of how a person with DS may be seen as a person. My special-
needs relative was much loved by our family but kept secret from the outside world. And I knowfrom my research into the connection between food and brain function that proper nutrition andoccupational therapy may make a world of difference for kids with Down syndrome. In this light,the proposed legislative reform establishing the legal personality of a fetus appears both crucialand insufficient to define.While the United States is often cited as having the most progressive regulationsregarding Basic Human Rights and equality, such as safeguarding individuals with disabilitiesand encompassing reproductive rights, in practice, these policies are not always upheld (Pary,Rajendran, & Stonecipher, 2018). At the very least, equality necessitates that no difference beused as the basis for exclusion, marginalization, or stigma. There is no other route to legalPersonhood under the current common law doctrine, which solely attributes it at birth. Thisindicates that children have rights the moment they are born and begin their lives apart from theirmothers. The unborn do not have any rights under the constitution. Since this is the case,granting agency and personality to fetuses is problematic. Most persons with disabilities in theUnited States have not been integrated into mainstream communities, as shown by the research

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Term
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Tags
Test, Down syndrome, amniocentesis

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