Private troubles or public issues? The social construction of “the disabled baby” in the context of social policy and social and technological changes
Dóra S. Bjarnason, IcelandUniversity of Education
Introduction
The purpose of this chapter is to describe, explore and interpret how a difference in the family gets constructed as a social status at (or before) birth or at the discovery of impairment within the socio-cultural and social policy context of Iceland, a wealthy, western modern society.Recent and important changes in Icelandic social policy related to disabled people and their families are described and discussed.These changesset the stage for the interpretation of disability within the society and provide parameters for available choices of action.
The chapter addresses three broad questions; first, how is the social construction of a child (or fetus) transformed into a social construction of the disabled child? In order to unravel and discuss plausible answers, the chapter explores the parents’ and potential parents’ perspectives upon learning that “all is not well” with their child, and the perspectives of the professionals who as part of their work have the power of diagnosis and labeling. Second, how does the new knowledge and technology related to neonatal services, including prenatal diagnosis of impairedfetuses, impact the way in which parents and professionals negotiate the social construction of the disabled baby or “the nonviable damaged fetus”? Thus, how does the process of interpretation and reinterpretation that occurs within the parent- professional negotiation impact the prospects and choices open to the disabled child and the family? Third, how does the social construction of the disabled child or fetus and the subsequent negotiation process connect to broader social issues like culture and relevant social processes and changes in social policy in Iceland? By applying C. Wright Mills (1959) thoughts on the sociological imagination I will try to understand the connection between what he calls “private troubles and public issues” related to the social construction of the disabled child within my society.
The theoretical perspective applied here is social constructionism (Schwandt 2001). Social constructionism is about how meanings get constructed in social context (Berger and Luckman 1967, Gergen 1994, see also Ferguson 2003). It draws upon symbolic interactionism (Mead 1937, Blumer 1969) and fundamental to symbolic interactionism is the view that we as people construct our own and each others identities through our every day encounters with each other in social interactions via language and other symbols. The social constructionist position, as I understand it, focuses on social processes, intersubjectivity and interaction, and that human criteria for identifying action or events are highly circumscribed by culture, history and the social context. Social constructionism implies that we take a critical stance towards our taken for granted ways of understanding ourselves and the world, and that the terms and forms by which we achieve such understanding are social artifacts, products of historically and culturally situated interchange amongst people (Berger and Luckman 1967, Gergen 1994). From this theoretical stance “disability”is a socially constructed phenomena, idealist product of interactions and relationships, embedded within society and its history, and generated from its culture, norms and values (Ferguson and Ferguson 1995). “Disability” is here taken to be constructed, embodied and embedded in Icelandic society and culture.As Gergen (1994) reminds us, social constructionism argues that because we negotiate understandings, and because these understandings can take a wide variety of forms, we can talk of many social constructions of the world. Each different construction brings with it different kind of action. Particular forms of knowledge in any culture are thus seen to be social artifacts. Thus, in this chapter, I treat current medical “knowledge”, clinical practice, gene technology and prenatal health services as social artifacts based on cultural, national and international social constructions.
The chapter also draws upon apostmodernist framework, a radically interdisciplinary theoretical approach which rejects conventional stiles of academic discourse and endorses heterogeneity, difference, fragmentation, and indeterminacy (Crook 2001). The approach indicates that all knowledge is produced through discourse, all knowledge is constructed, contested, incessantly perspectival and polyphonic, and inextricably bound up with power. Further, knowledge in the postmodern sense is seen as dependent on socio-cultural contexts, unacknowledged values, tacit discourses, and interpretive traditions, and it recognizes the significance of language, discourse and power in any knowledge claim (Crook 2002, Denzin 1996a, Ferguson and Ferguson 1995). In the late 20th century postmodernism, with its departure in fundamental social transformation of modern societies, has been seen to be set up as a fundamental challenge to interactionist theories; but it has also cross fertilized these and many other theoretical perspectives including feminist theories, neo-Marxist theories, post structuralism, cultural studies, disability scholarship and others (Crook 2001, 2002). Thus, it forms a backdrop forthe social constructionist approach (Denzin 1996b)as used in this research.
From the postmodernistic framework this chapter invokes for examplethe concept “the medical gaze”, a concept which Foucault (1973) developed in his book The birth of the Clinic. The concept helps capture the power vested in the medical profession derived from the complex strategic situation doctors and other health workers gain with their training in the institution of the clinic (the teaching hospital with all its tradition, culture and forms).
The research method is qualitative (Bogdan and Taylor 1992; Wolcott 1995). Data sources stem from two of my research projects and from documentary analysis of official documents.The first source of data comes from an extensive research project into the social construction of young disabled adulthood (Bjarnason, 2003b and 2004). That research explored the experiences and perspectives of 36 young adults (aged 16-24), their parents, friends and teachers. All the young people were born in the 1970s and early 1980s, before ultrasound and other prenatal tests were made available to all pregnant women in Iceland. I draw on data sources from interviews with parents of the young adults. Those parents are here called “the older parents”. The second source of data is from research in progress. These consist of interviews with one or both parents of 10 disabled children born after 1995, and with key medical staff involved in prenatal care, ultrasound and other tests, and guidance to prospective parents whose fetuses were diagnosed withatypical conditions such as for example trisomy 21 (Down syndrome), trisomy 18 (Edward’s syndrome) and 13 (Patau’s syndrome), spinal bifida, significant brain, heart or lung malformation, a missing limb or vital organ. Parents forming this group will be referred to as “the younger parents” or “parents of the choice generation”because couples of that generation may have to chose before the birth whether or not to abort their impaired fetus.
Background
Iceland is a large island on the North Atlantic Ridge, with a population of 300.000 and a highly prosperous and modern Nordic society. Iceland can be described as a liberal democratic society with a strong welfare state (Ólafsson 1999). The Icelandic welfare state, modeled on relevant Nordic law and ideas, developed gradually from the 1930s but with a temporary setback in the 1990s (Herbertsson 2005).Globalization, new technologies, and neo-liberalism with their economic, political and cultural implications have dramatically impacted on the Icelandic economy and society particularly in late 1980’s and 1990’s, thus transforming ordinary lives.Iceland used to be relatively homogeneous both with regard to its population and average family incomes. It is safe to say that neither extreme poverty nor significant wealth occurred in Iceland in during most of the latter half of the 20th century, and that people of foreign origin -- particularly people of a different ethnic, cultural or religious -- were a rare sight. In 1994 Iceland, with Norway and Liechtenstein, signed a treaty with the European common market (the EEC), which in effect opened up the internal European finance and labor markets and subjected the Icelandic state to adopt into its legal framework rules and regulations from Brussels ( and the fact that Icelandsigned the Schengen agreement -- an agreement between 14 European countries from 1985 which opened up a free movement of people within the Schengen zone -- in 2001( changed both economic opportunities and the socio-cultural composition of the population. Sincethe late 1990s the country has experienced a sharp economic boom largely driven by public and private investments (for example in new hydro-electrical power plants for new foreign owned aluminum plants). The boom resulted in an acute labor shortage and the influx of foreign workers. Consequently, the population has become significantly more heterogeneous both economically and socio-culturally. The changing socio-economic landscape in Iceland,full employment for both men and women, and general access to information (e.g. on the internet) has affected the composition, lifestyles and expectations of Icelandic families including families with disabled children. Young families generally expect a decent standard of living, adequate state and communal services such as good public schools, largely free health andwelfare services, and goodworkprospects.
Social policy is here taken to mean both the principles that the state and local governments have defined to govern action that is directed to improve or support the lives of a given segment of its population seen to be in need of supports, and the systems and practices involved in such actions.
Following Titmuss (1983), this implies actions about ends and about means to the defined ends. He writes: ”the concept policy is only meaningful if we (i.e. the actions of government in expressing the general will of the people) believe that we can affect change” (page number).
Further, Titmuss (1974) reminds us that to understand (social ) policy and distinguish between ends (what we think we want) and the means (how to get there), we have to see it in the context of a particular set of circumstances, a given society and culture and a more or less specified period of social history.
Prenatal services. Ultrasound technology was introduced in 1975 and by 1986 all pregnant women in Iceland had the option of having free prenatal ultrasound in the 18th and 19th week of pregnancy. According to two Norwegianmedical doctors Getz and Kirkengen:
The scope of prenatal ultrasound screening has undergone significant changes since it was introduced in the 1980’s.Its original goal was to reduce obstetric risk by enhancing safety for mother and child, correcting gestational age, locating placenta, and diagnosing twinpregnancies. As imaging technology developed and societal expectations changed, there has been an increasing focus on fetal diagnosis, namely disclosure of structural abnormalities in the unborn child”(in Getz, 2006 p. 214).
Ultrasound is fast becoming an integral part of every families’ pregnancy. Couples attend together and sometimes they bring older children, close friends or relatives to witness what for most is a joyful event. Pictures of the fetus can be bought from the hospital staff, and are sometimes proudly presented to family, friends and relatives. By 2004 approximately 99% of all pregnant women in Iceland made use of the ultrasound in the 18th and 19th week as a part of prenatal medical care. That year approximately 2% of the pregnant women who used the ultrasound technology were estimated to carry fetuses with unusual differences. Infrequent structural differences such as missing brain (anencephaly), open abdomen (gastroschisis) but also more subtle structural differences such as cleft lip are detected in fetuses in the second trimester of pregnancy, but attempts to screen for fetuses with chromosomal differences, inparticular Down syndrome, have proved less reliable at that time. Genetic conditions are diagnosed via the identification of so called anatomical soft markers. The term “soft marker” is defined by medical experts as:
structural changes detected at ultrasound scan which may be transient and in themselves have little or no pathological significance, but are thought to be more commonly found in fetuses with congenial abnormalities, particularly karyotypic [chromosomal characteristics] abnormalities.(Bricker et al., quoted in Getz 2006:214)
Soft markers that can be detected by the second trimester ultrasound scan include chloroid plexus (CPCs), renal pelvic dilatation, echogenic foci in the fetal heart or fetal gut, short limbs and nucal thickening. Most soft markers are associated with Down syndrome. However, even when two soft markers are identified, the likelihood of parents having a child with for example Down syndrome is unclear and statistically f. ex. 1:100. Invasive diagnostic tests (chorionic villus biopsy or amniocentesis) are generally offered to the pregnant woman when the possibility of her having a child with Down syndrome is 1:300 or higher. The invasive tests carry a risk of fetal loss by 1:100. If the chromosomal difference is confirmed by invasive tests, Getz and Kirkengen point out, “then the “therapeutic” options are to have an abortion or prepare for the arrival of the child” (Getz 2006:215).
In 2004 approximately 80% of all pregnant women in Icelandalso went for an earlier ultrasound in 11th to 14th week of pregnancy. The early ultrasound is available at a small price.When impairment is suspected a subsequent battery of tests (e.g. blood tests and maternal serum tests) is carried out. (LandsspítaliUniversityHospital).
Ultrasound screening in the first trimester of pregnancy is explicitly promoted as screening for Down syndrome. Early ultrasound screening enables the detection of 75%-80% of fetuses with Down syndrome. The probability of detecting fetal chromosome difference (for example Down syndrome) can be enhanced, throughout the gestation period, by combining the ultrasound technique with the invasive maternal serum tests. But because the test results are always based on statistical probabilities, the loss of a fetus through the invasive tests cannot be ruled out.
The abortion law. The current legislation on abortion from 1975 permits abortion for either medical or social reasons or both. According to the law abortions should be carried out early in pregnancy, preferably no later than the 12th week. After 16 weeks of pregnancy abortions are only permitted on medical grounds, but if the fetus is found to be impaired, then abortions can be carried out up in to the 21st week. Most abortions are permitted for social reasons. Abortions due to detected infrequent geneticor potential birth variation are classified under medical reasons, but the exact number of such abortions is not available for the late 20th and early 21st centuries. However reliable figures are available for the year 2003. That year the number of births in Iceland was 3317, abortions were in all 951. That year 37 women through ultrasound were found with impairedfetuses due to “genetic or other defects”, and of those 26 chose to have their baby despite the prognoses but 11 women chose abortion (Landsspítali-UniversityHospital).
Rights and restrictions. Since the 1980’s people with disabilities have gradually become more visible in Icelandic society. The disability movement and disability activists have grown in strength and managed to impact public discourse and public policy. Two large advocacy associations; The Organization of Disabled in Iceland (Öryrkjabandalag Íslands), and The National Federation for People with Learning Disability(Þroskahjálp) have representatives in most national and local government committees that draft legal bills and formal rules that concern the affaires of people labeled with disabilities. Both associations also initiate public policy by applying all means available to them in a democratic society; from drawing attention to problems within the legislation or practice that affect the lives of people with disabilities in the media, to calling public meetingsand protests, or consulting with relevant government ministers.In 2000, The Organization of Disabled in Icelandtook the state to the High courtand won their case -- an action that improved significantly the disability pension for disabled people.
A special legislative framework aimed at supporting disabled people has gradually been established. The first such legislation, “the Law on the Affaires of the Intellectually disabled”, was passed by the Icelandic Parliament in 1979. The aim of the law was to ensure that people with intellectual disability enjoy as normal a life as possible within our society and to secure a relevant administrative framework to provide them and in case of children their families with necessary support and services. In 1984 the legislation was replaced by a similar legislation which included all people with disabilities except for people labeled with mental retardation who were later included under the law. The current legislation is “the Law on the Affaires of the Disabled” (1992). This law is intended to support disabled people, including disabled children and youth and their families and secure their right to support, relevant services and full inclusion in society. Public education is free or largely free and open to all learners from preschool throughout upper-secondary school. The education legislation from the 1990’s prescribes inclusive education.According to the law, this means that all children have access to their local regular compulsory schools and that the schools should educate each and every child effectively and according to their needs. The National Curriculum from 1999, which has statutory status, states that: