One of the most compelling arguments against a cavalier attitude to prenatal screening comes from the disabled community. Known in bioethical circles as the expressivist argument, it is argued that by identifying certain genetic conditions as undesirable and aborting fetuses with these conditions, negative judgments are made about the status and value of the lives of people with these particular conditions. This argument is taken up widely by feminist philosophers and by the disabled community (Edwards, 2004; Gedge, 2010; Kaplan, 1994; Klein, 2011; Lippman, 1991; Lippman, 1999b; McMahan, 2005; Patterson & Satz, 2002; Press, Browner, & Tran, 1998; Scott, 2005) who argue that a systematic bias against people with disabilities is embedded within the structure and practice of prenatal screening.
Another related argument is the quality of life argument. Terms such as suffering and low quality of life are subjective and many people with disabilities do not rate their subjective
life experience as poor (Albrecht & Devlieger, 1999; Asch, 2000). Disability scholars are concerned with the way that quality of life is perceived by the general public and
interpreted in the prenatal screening debate. Disability advocates frequently argue that their quality of life is affected more by societal barriers than their disability. For instance, Deborah Kaplan (1994) compares a wheelchair to a pair of eyeglasses; it is a tool for people with mobility limitations. A wheelchair only impacts on quality of life when architecture, technology, and attitudes get in the way. Scholars participating in this debate question the use of selective abortion as a response “to social problems that could be resolved through other policy initiatives” (Kaplan, 1994). It should be noted that most “birth defects” are the result of prematurity, low birth weight, and environmental
exposure. Many of these conditions could be ameliorated with social, environmental and economic programs (Wertz & Fletcher, 1995).
Because caring for a disabled child, as any other child, requires patience, time, and resources, advocates of the expressivist argument do not support a ban on prenatal screening (Gedge, 2007; McMahan, 2005; Patterson & Satz, 2002). Instead, they
advocate for increased awareness about living with a disability, increased social support for persons with disabilities and their caregivers, and non-directive counseling that does not include subconscious prejudice against disability (Kaplan, 1994; Parens & Asch, 2000; Wertz & Fletcher, 1995).
Within these ideas, feminist standpoint theory1 (Harding, 1987; Harding, 2004)
contributes to an understanding of the phenomenon. Harding's standpoint theory argues that “knowledge claims are always socially situated and that failure by dominant groups to interrogate beliefs arising from their social situation leaves them in an
epistemologically disadvantaged position, that is, one that distorts” (Patterson & Satz, 2002, p.121 ). For example, if health care providers who counsel about prenatal screening fail to make themselves aware of the reality of living with a disability, they may impart
1
While both Harding (1986, 2004) and Smith (1987, 1992) name their work "standpoint theory", the theories are quite disparate (Smith, 1993). This section uses Harding's conception of standpoint theory; Smith's standpoint theory is discussed in Chapter 3 and 9.
incorrect knowledge to their clients, who then make decisions based on this distorted knowledge (Grant & Flint, 2007). It is necessary for genetic counselors (and other health care professionals who provide prenatal screening counseling) to acquire knowledge about the lived experiences of the conditions identified with prenatal screening so that they can provide appropriately “non-directive” counseling to patients. Some writers wonder if truly informed choice and completely non-directive counseling is possible, noting that the words used to describe the process of prenatal screening create anything anomalous as inherently pathological (Grant & Flint, 2007; Skotko, 2006; Hodgson et al, 2005). Press et al (1998), Grant and Flint (2007), and Skotko (2005, 2006) argue that when health care professionals speak about prenatal screening, they should be prepared to provide patients with contact information for parent groups and social groups that
advocate and care for people with the conditions being discussed. A number of scholars have suggested that this is not happening, that many women receive no information whatsoever about what it is like to live with or raise a child with the different conditions being tested for by prenatal screening (Browner & Press, 1996; Marteau, Slack, Kidd, & Shaw, 1992; Marteau, 1995; Pilnick et al., 2004; Pilnick, 2004; Press & Browner, 1995; Press & Browner, 1997; Skotko, 2005; Skotko, 2006).
During informal communication during the International Conference on the “Healthy” Embryo (University of Western Ontario, November 16 2007), legal and disability scholar Jackie Leach Scully made the valuable point that it is important to differentiate between terms such as disability, disease, condition, illness, impairment. There is significant difference between the participatory abilities of people with deafness, cystic fibrosis, Down syndrome, or hydroencephaly. Different conditions should be given different considerations (Leach Scully, personal communication, November 16, 2007). Various conditions are often conflated in prenatal screening debates, created as the “other” in opposition to “normal” (Rothschild, 2005). Wertz and Fletcher have also noted that the academic literature tends to consider “disability” rather than speak about certain
conditions and they identify this trend as harmful and counterproductive (Wertz & Fletcher, 1995).
2.3.1 Social construction of disability.
There is a wide range of literature on the ways in which disability is socially constructed. Scholars tend to take what I term a strong constructionist (e.g. Wendell, 1996) or a weak constructionist (e.g. Asch, 2000) viewpoint. The strong constructionist view of the social
construction of disability, exemplified by the work of Susan Wendell, holds that impairments in functioning are only disabling because of the way in which society is constructed- they are not inherently disabling. Weak constructionists differ in stating that although disability is largely socially constructed, there are some attributes of
impairments which are inherently disabling, such as the experience of living with chronic pain (Asch, 2000).
Wendell (1996) outlines a number of ways in which society disables people who do not live up to the idealized vision of a citizen, that is the white, male, young, fit, able-bodied, wealthy citizen. First, she describes ways in which social conditions affect people’s bodies. Then she names a number of societal norms which can be disabling. In one illuminating example, Wendell identifies the pace of life as a societal factor which
disables people who may be able to be productive and contributing members of society, but because of the pace they are expected to keep, are unable to make contributions. For example, we could consider a worker who would be able to work a half time job based on the productivity expectations for this amount of work. If those productivity expectations were to increase, the worker may not be able to keep up and be forced to leave
employment. In this way, the social construction of the expected level of individual productivity “can eclipse the actual contributions of people who cannot meet them,
making people unemployable when they can in fact do valuable work” (Wendell, 1996, p. 39).
Wendell points out that disability is also constructed by the inability to give individuals the assistance they need to live productively. For example, the inefficiency of public transit disables people who cannot drive for reasons such as poverty, epilepsy, blindness, paralysis etc. Wendell points out that society gives a lot of assistance to non-disabled people such as education grants and training, public communication, public
non-disabled people they are considered an entitlement of being a citizen. If these services are adapted so that people with impairments can use them, they are considered charity.
Such discussions about the social construction of disability raise a number of questions related to prenatal screening. How is disability constructed by health care professionals when they talk about prenatal screening? How do societal constructions of disability and the lives of disabled people affect the decisions that pregnant women make about prenatal screening? How can health care professionals circumvent these societal norms and
constructions to assist the woman in making her own decision about her own family? The
SOGC guidelines (Summers et al., 2007; Chitayat et al., 2011) do not explicitly address the issue of how disability is constructed in society, however they do address the issue that prenatal screening, diagnostic testing, and the decision to continue or terminate the pregnancy should be the woman’s own decision. They suggest this can happen through non-directive counseling.