The Inadequacy of “Choice”

2021 ◽  
pp. 31-66
Author(s):  
Alison Piepmeier ◽  
George Estreich ◽  
Rachel Adams
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Community Support ◽  
Reproductive Decisions ◽  
Reproductive Justice ◽  
Disability Rights ◽  
Reproductive Choice ◽  
Cultural Stereotypes ◽  
Children With Down Syndrome ◽  
Individual Woman

This chapter examines the limitations of feminist discussions about disability and reproduction. Feminism and disability rights often hold different places in reproductive justice discussions. Feminism often oversimplifies the idea of reproductive choice, focusing on individual women and endorsing cultural stereotypes of disability. As a counterpoint to the scholarly literature of these issues, Alison Piepmeier interviewed twenty-nine parents of children with Down syndrome, asking them about their pregnancy, prenatal testing, and their families. The responses of these parents illustrate how families need more support than just individual rights to raise a child with a disability. Although reproductive decisions may rest on an individual woman, she must also consider community support and health services in her decision to raise a child, particularly one with a disability.

Parenting the Child With Down Syndrome: Understanding—but Going Beyond—the “Down Syndrome Advantage”

2020 ◽  
Author(s):  
Robert M. Hodapp ◽  
Ellen G. Casale
Keyword(s):  
Socioeconomic Status ◽  
Down Syndrome ◽  
Behavior Problems ◽  
Prenatal Testing ◽  
Children With Autism ◽  
Facial Features ◽  
Cultural Resources ◽  
Noninvasive Prenatal Testing ◽  
Birth Parents ◽  
Children With Down Syndrome

Compared to parents of children with other types of intellectual disabilities, parents of children with Down syndrome experience less stress and more rewards, although this “Down syndrome advantage” mostly occurs compared to parents of children with autism and before groups are equated. Behaviorally, children with Down syndrome display more sociable interactional styles and baby-faced facial features, along with fewer instances of severe behavior problems. Demographically, parents of children with (versus without) Down syndrome average 5 years older when giving birth; parents are more often well educated, married, of higher socioeconomic status, and they likely provide these children greater financial and cultural resources. In most industrialized societies, rates of Down syndrome seem steady, with easily available, noninvasive prenatal testing counteracted by increasing numbers of women giving birth at older ages. Parenting children with Down syndrome relates to characteristics of children, their parents, and society, all of which intersect in important, underexplored ways.

scholarly journals Review of: Kaposy C. (2018) Choosing Down Syndrome

2019 ◽  
Vol 2 (2) ◽  
pp. 21-22
Author(s):  
Meghan Chevalier
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Pragmatic Approach ◽  
Social Disability ◽  
Children With Down Syndrome ◽  
Non Invasive ◽  
Qualitative Evidence ◽  
The Social

With the advent of Non-Invasive Prenatal Testing, Chris Kaposy believes that more people should choose to parent children with Down Syndrome. Kaposy advocates for the Social Disability Model and recommends a normative pragmatic approach as standard. He makes use of both quantitative and qualitative evidence to support his position.

scholarly journals Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing

2014 ◽  
Vol 23 (5) ◽  
pp. 805-813 ◽  
Author(s):  
Gregory Kellogg ◽  
Leah Slattery ◽  
Louanne Hudgins ◽  
Kelly Ormond
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Noninvasive Prenatal Testing ◽  
Children With Down Syndrome

‘We would have missed out so much had we terminated’: What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome

2018 ◽  
Vol 23 (3) ◽  
pp. 290-309 ◽  
Author(s):  
Bethea How ◽  
Andy Smidt ◽  
Nathan J Wilson ◽  
Rebecca Barton ◽  
Chelsea Valentin
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Accurate Diagnosis ◽  
Children With Down Syndrome ◽  
Information Giving ◽  
Non Invasive ◽  
Actual Reality ◽  
Balanced Information ◽  
Depth Interviews ◽  
Thematic Network Analysis

Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.

The Welcome Table

2021 ◽  
pp. 67-78
Author(s):  
Alison Piepmeier ◽  
George Estreich ◽  
Rachel Adams
Keyword(s):  
Down Syndrome ◽  
Family Meals ◽  
Disability Rights ◽  
Dinner Party ◽  
Children With Down Syndrome ◽  
School Activities ◽  
People With Disability

In this chapter, Alison Piepmeier describes how eating at a table can figuratively and literally show the barriers people with disability face in trying to connect with a larger community. She interviews adults with Down syndrome and parents of children with Down syndrome to learn how some people are included in, or excluded from, social gatherings like family meals, children’s parties, school activities, and organizational meetings. Alison recalls disability rights activist Harriet McBryde Johnson’s fight for accommodation and Johnson’s interaction with a professor whose views on euthanasia are criticized as being ableist. Being invited to sit at a table—be it a dinner party among friends or an organization’s luncheon—means accepting a person’s value as fully human. Alison points out that even some well-intentioned groups forget the importance of inclusion. She quotes disability advocacy leader Nancy Brown’s observation “We segregate those we don’t value.”

scholarly journals What Do Parents of Children with Down Syndrome Think about Non-Invasive Prenatal Testing (NIPT)?

2016 ◽  
Vol 26 (3) ◽  
pp. 522-531 ◽  
Author(s):  
Rachèl V. van Schendel ◽  
Adriana Kater-Kuipers ◽  
Elsbeth H. van Vliet-Lachotzki ◽  
Wybo J. Dondorp ◽  
Martina C. Cornel ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Children With Down Syndrome ◽  
Non Invasive
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